Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the category “What is Hyponatremia?”

My story: Living with EPM

When I sit down to write my post, I never have a true idea as to what is going to be written. There are several things that float through my head each day that I believe would make an excellent topic to discuss. At some points, I even will start to write ideas down on pieces of paper or this small notebook that I’ve been carrying around, but eventually through out the course of a day or several days those things become “misplaced” and my ideas become scattered.

I’m still looking for the notebook that I lost a week or more ago.

Anyway, I’m sure you’re dying to know what happened once the diagnosis of EPM was made. Did they start rounds of drugs, tons of tests, hooking me up to machines and monitors?

I had another IV started when I was first admitted to the neurology department.

Tom left early in the afternoon because Izabel was tired, and he needed to get settled into the hotel.

The doctor, who was the resident who first told me that I was right, told me that they would give me anything I needed. He told me that the main doctor that was going to see me would get me everything I needed.

The other doctor that was supposed to come from home to check on me got there around midnight or a bit after.

I was exhausted but I couldn’t sleep. No, it wasn’t the kind of you can’t sleep because you’re waiting for Santa kind of sleep, but the I really want to sleep but can’t sleep. I had only had three hours or sleep in the past 48 hours, and every time I closed my eyes, I would see blackness and my mind would melt away but I wouldn’t sleep.

It was exhausting and frustrating.

So the “head” doctor (seriously can’t recall the name for them right now..not resident..ugh, anyway, the doctor who is supposed to be in charge of the other doctors, but isn’t the chief) was there. She told me there’s nothing they can do. There’s not any treatment, but because I had EPM, she felt I was going to make a complete recovery.

The doctor told me that I would receive my glucose treatment, ambien for sleep and pain medications for the ongoing splitting headache. However, a hour and a half later, none of that had been provided. I paged again at 3 am and by 6 am I started to scream and cry.

I was literally screaming and crying at the nurse. I knew it wasn’t her fault, but WHY WAS I IN THE HOSPITAL??!! I had a HUGE bottle of percoset that I could take if I was home to help temper the nausea inducing headache. It was a headache that I had for OVER THREE DAYS. It was the kind of head that made blinking painful. My stomach felt like someone was hollowing it out with a spoon. I COULD NOT sleep. I was at the point of utter exhaustion.

I could have had treatment if I had stayed home. I would have been able to call my hematologist, continue to take my percoset which at least helped dwindle the mind numbing pain.

WHY was I in the hospital if they were going to give me LESS treatment when they knew that I had a life threatening injury?!!

I was ready to leave! I called Tom to pick me up. I was at the point of becoming hysterical.

Around 7 am, the very disgruntled resident came in. What do you want!?

Pain medications, IV glucose, and ambien.

Anything else?!

No.

Fine.

He left and about an hour later they gave me something for the headache. Literally, before they wouldn’t even give me a TYLENOL.

None of the nurses or doctors would tell me why.

(It turns out that they didn’t want anything to impact me physically. They didn’t want the pain meds to cause any complications neurologically. They didn’t want the glucose to destabilize my sodium levels, and they wouldn’t be able to give me Ambien because it was now early morning. It would have been nice to find that out earlier.)

I was not going to be able to sleep for another 14 hours.

Around 8 am another neurologist came in. He had about 6 to 10 medical students with him. I didn’t mind that. After all, I want to be a doctor. I understand how it works.

What I did not understand and still do not understand is how this doctor acted. I thought this was a doctor who was going to be able to explain things to me. He would be able to answer my questions. He would be able to tell me what was going to happen to me.

Instead he started to examine me. He had me do several tests. He was testing my reflexes and balance. He did not use my name. He would say things like: notice how the patient’s xyz reflex is abnormal. This is a sign of xyz abnormality. The patient’s  xyz reflex may or may not be indicative of xyz. It might be that the patient is just hypersensitive to the motion. Could you please stand up and try to walk over here?

I really thought that at the end of these tests he would then explain what they meant to me. I thought, at some point he’s going to send the students out of the room and then address me personally. He would let me know what was going on.

I didn’t stop to ask him questions because I didn’t think he would leave and not come back.

After I tried walking across the room, tilting to one side, almost falling over, he and the students left. I kept waiting for him to come back. I could hear him discussing my case further in the hallway, but I couldn’t understand what he was saying.

This was one of the worst feelings I have ever had. I felt that this guy had the answers. He knew what was happening to me. He saw abnormalities in my movements and he would be able to describe to me what was going to happen.

Instead, I was a specimen. I was not a person, but something to be studied. I was an “it”.

I was at a loss. When I stayed at this same hospital about two weeks earlier for my pituitary surgery, NONE of this happened. I didn’t have ANY complaints regarding my stay. The nurses were amazing. My doctors were fantastic and caring. I had NO idea that things would be different when I came back for the EPM.

This type of “non” treatment continued the entire time I was there.

I was not allowed to go to the bathroom without an escort due to my balance issues. I was EXTREMELY happy that I didn’t have to be catheterized, use a side bed potty or a bedpan.

I demanded to just use the regular bathroom, but there was the stipulation that I had to have a nurse walk me there. I would call for the nurse and she would not come. I would page and 15 minutes would go by, so I would page again and another 15 minutes would go by. At this point, despite the pain medications and the mind numbing headache and fatigue, I was able to unplug my leads on my own, and roll my iv bag around to get to the bathroom.

You can only hold off using the bathroom for so long. I made the mistake of waiting to call the nurses until the point of when I had to go to the bathroom.

I was having issues with walking, but I made it fine to the bathroom and back.

Of course, once I got back into bed and all of the machines plugged back in, the nurse came in.

I have to stress that with my first stay at this hospital (it was a different ward), the nurses were extremely attentive.

A little while later, my neurosurgeon that handled my pituitary surgery came into my room.

God Bless this man! He was awesome. He told me that there was no way to tell how this thing was going to workout. He told me that a 1/3 of the patients made a complete recovery, 1/3 had continuing health issues, and 1/3 got worse.

He explained to me that there were no guarantees, but it was important for me to stay  optimistic. He explained that the areas that were effected were the “best” areas in the brain to be effected. The pontine area is the control center in the brain. It is an area that directs signals that the rest of your body produces to the outer regions of the brain for processing.

If you’re injury is here, then you have a greater risk for going into a coma, or developing  locked in syndrome or having a much higher risk for dying.

I really trust my neurosurgeon and even though all of the doctors at that point told me honestly that no one there had ever seen a case of CPM/EPM, I felt confident that my neurosurgeon had the most current and correct information. He told me that there was nothing that could be done. He told me that there were no treatments that could be used. I would just have to wait and see.

I was worried. I was scared, and I was alone. I started calling my friends and family. I wanted to reach out to them because I had NO real idea what was going to happen. I could become paralyzed at any moment. I could lose my ability to speak.

I wanted to be able to tell my family that I love them encase I wouldn’t have that chance later.

It was hard. My heart was breaking.

If I knew what I know now, I wouldn’t have been in this situation. I could have stopped it from happening at all. I could have reversed the EPM damage by having hyponatremia induced again.

No one should EVER be in this situation. There is no reason why someone should live through this.

I hope you will help prevent this from happening to someone else by spreading the word regarding it. You can make a difference in someone’s life.

More to come later.

 

My EPM story: the diagnosis:

Up to this point, I have talked about how I developed hyponatremia, how it was treated incorrectly, and how I tried return to the local hospital (the place that treated my hyponatremia) THREE times to get treatment for my developing issues with EPM.

The last trip to my local ER, I asked  for a MRI because I was almost positive that I had developed EPM. Instead, they attempted to admit me for observation because of the reaction I had from their doctors, I decided it would be better for me to travel to meet with my ENT and endocrinologist.

After hearing about my issues, they were also determined to get me into to see a neurologist, despite it was the Thursday before the Fourth of July. Trust me, despite going to a HUGE hospital with hundreds of doctors, trying to get an appointment with one of their 50 or more neurologists was a big deal.

Tom and I had no idea what was going to happen next.

I left my local ER around 7pm. I was pumped full of narcotics and was almost dead to the world. I mean, I really did not know what was going on.

I got home, and I think it was at some point around 3 or 4 am, we started our oddessy. We had our three year old with us, and this trip was unexpected. We had no idea how long we would be gone, or what we would need.

I guess we planned for the worse because we didn’t run out of clothing, etc. Granted, I spent my time in a hospital gown.

So, our trip up to the hospital was awful. I had a splitting headache. I didn’t feel well. My daughter was acting like all three year olds. At first, she slept but around 9am, we stopped to get breakfast.

It became absolutely clear there was a problem when I tried to order breakfast for us. Tom had gone to do something, find a table, I don’t know what, so I was left at the counter alone to order.

I knew what we needed, but I was having trouble understanding what the girl was saying. I was extremely frustrated. All I had to do was give the girl the numbers and tell her what drink we needed with each. Tom’s order was easy. Izabel is a picky eater, so I had to make adjustments with her order, and I had a hard time asking if they had pancakes or cereal. I had a hard time explaining that I needed milk with her meal not coffee. The most frustrating thing was when I wanted to change the kind of cheese on my order. I didn’t want Swiss cheese that normally came on the sandwich, I wanted American cheese.

I kept telling the cashier: I don’t want cheese. I want cheese.

Of course, she looked at me like I was retarded because I was.

I tried to explain further: Not cheese. Yellow cheese.

My entire order was like that; I couldn’t express the changes I wanted to make. I had a hard time asking for coffee with Tom’s meal. I had a hard time finding out if they had cereal, and by the time it came to my order, I was left to pointing irrationally at the pictures on the wall. Number 6, no cheese, cheese. I don’t want cheese. I want cheese.

Yeah.

I KNEW what I wanted. I couldn’t say it. AND, these episodes kept skipping. It wasn’t continuous issues with communicating. Talk about feeling like you’re going completely nuts.

Shortly after we left Arby’s, I started experiencing the crippling stomach pains which I no longer was considering as an issue for porphyria but for my adrenal glands.

With all the physical and mental stress I was having, it isn’t difficult to believe that my adrenal glands were becoming stressed. Maybe it’s not my adrenals, maybe it is AIP, maybe it’s both…I really think only God truly knows, but all I did know is that sugar/glucose would stop the pains.

So, Tom and I went off track to find a CVS or other drug store to pick up a bottle of glucose tabs. This delayed our getting to the hospital, but trust me I don’t think I could survive an attack of crippling abdominal pain.

After a shot of liquid glucose and about 1000mg of glucose via tabs, the pain subsided a bit. I was feeling more nausea, but the painful cramps weren’t as bad.

I swear this trip was CRAZY. I think it took four hours longer than it normally does, and I can not explain WHY it took so long. I mean, there was the stop for breakfast. There was the stop for glucose. We did hit road construction at some point, and then there were at least three potty breaks for Izabel.

During the drive, we were also working with an awesome receptionist for the neurology department to try to get an appointment with a neurologist. All of the neurologists were booked or gone already for the 4th of July weekend.

They could only make the appointment for about a WEEK from that date.

At this point, I still had no true clue as to what having EPM or CPM meant. I really didn’t understand that I was in a life threatening situation.

I believe I had read about it, but it didn’t sink in that this was really what was going on with me.

I was relieved when I got to my first appointment with my ENT. I really thought that he must have left packing in my sinuses and that this was going to be the reason I was having such a horrible headache.

I remember sitting in the waiting room, extremely calm. My little girl was striking up a conversation with another little girl. Tom was looking up the newspaper on his laptop, and I was just waiting.

I tell you. I was still experiencing difficulties speaking. Then they did the torturous search of my nasal cavity and sinuses. They spray your throat and nose with a numbing spray, and I was getting extremely ill from the spray. It’s supposed to taste like bananas. It doesn’t. Some people don’t have any issues with it, but other people, like me, the numbness triggers your gag reflex and you because extremely ill.

Then they slowly insert this 1/4 inch diameter, flexible, rubber hose with a scope on the end up your nose.

It doesn’t seem like they should be able to get that much of the hose up your nose (ha, that rhymes), but they did, and I can’t imagine having an alien abduction be more painful or uncomfortable. Just saying.

The ENT reassured me that things looked good. He assured me that there was no packing in my sinuses. He assured me that the surgical site was looking great. However, he was concerned with my neurological issues. He was glad that I was going to see my endocrinologist. He thought I should be hospitalized, but he wanted me to see the endocrinologist first.

So, by this point, I needed a wheelchair to get around. I was truly nauseous, dizzy. I was having issues with my balance. I had the horrible headache.

My endocrinologist is the most awesome doctor in the world, with a close second for my neurosurgeon and an even closer third with my ENT. Truly, I’ve been to hundreds of doctors, or at least a hundred. I’m not sure if that’s an exaggeration. I’ve seen a lot of doctors, so please believe me when I say, these doctors are amazing.

My endocrinologist was disturbed at my neurological issues. She was concerned at how long they had been going on. I told her that I thought I had CPM. I explained why I thought I had CPM. She didn’t arch her eyebrows. She didn’t give me a smirk or a shrug.

She told me that it would be unlikely for me to have CPM because I was 34. She believed that only babies and old people developed CPM. I became concerned that she wasn’t going to do anything.

She left the room to try to get an emergency consult with a neurologist. She checked back with us in about 10 minutes to let us know that the neurology department had not gotten back with her at that point.

She came back five minutes later to tell me that there weren’t any neurology appointments available, and so she was going to admit me. She felt I needed to have a MRI, NOW, not a day from now, not a week from now, NOW.

I was checked into the hospital and in my room in about an hour.

I was seeing the neurology residents in about 15 minutes after that. I was seeing another neurologist about an hour after that.

I was given another IV, pain medications, and because my endocrinologist totally believes me, she also requested the IV glucose to help with whatever it was, adrenal crisis or porphyria. (Even though my endocrinologist ordered it, the neurology department-unbeknownst to me- did not want me to have the glucose treatment, so that wasn’t started. This caused my abdominal pains to become unrelenting.

By 11pm that night, I was being wheeled down for the MRI. Trust me, even though my endocrinologist and ENT believed that I was experiencing a major problem, this belief was not as well received by the neurology department. I got arched eyebrows. I got the smirks.

I was desperate that they find something on the MRI. I KNOW that sounds funny. I KNOW that sounds crazy, but when you’re in that much pain, when you have that significant of a problem, the last thing you want is for them NOT to find anything. Trust me, when you have that many arched eyebrows and funny looks, if they came back with there’s NOTHING on your MRI, the next place you’ll be heading to is the psych ward.

My relief became absolute. My confidence in myself became iron clad, when the neurology resident came rushing into my room.

Resident: You were right. You were right. You have myelinolysis. THEY DID THIS TO YOU. THEY ARE 100% responsible.

I think I was on the verge of tears. I can’t remember exactly what he said after that. This injury was out of his league, and he assured me that the fellow in neurology would be in to see me in a very short while. He stressed that this was a serious issue and that the fellow was actually coming in from home to see me.

I had my answer. I had my reason. I wasn’t crazy. I didn’t have a stroke. I was right. I WAS RIGHT.

I wish that I could say, that’s it. That’s all that happened, but it’s not. The story does continue. Maybe, now, you’ll see why I’ve chosen to write about this later. It’s easy to become distracted and angry about what happened.

It can consume you.

Plus, it’s a hell of a long story. I mean, these are by far the longest posts that I’ve made, and they take the longest to write. It’s really exhausting, but I really feel, you need to know. You deserve to know. You need to learn to trust what you feel and to fight for what you’re going through. You need to understand that even the most prestigious hospitals in the country are fallible. You need to ask questions and push for answers, even when you meet resistance.

I hope this helps you with your struggles or helps to push you forward when you feel like giving up. You aren’t alone.

My EPM story: the middle (part 3):

Today, I am tired. Yes, extremely. I am debating as I write: stop and take a nap or write this post. I might have to start and then finish at a later point, so please bare with me.

I believe I left my previous post at the part where I was extremely relieved that I was alive. The doctors and nurses had told me that if they raised my sodium levels too quickly (which they did) that I could go into a coma or die. I believed because I was being released to the general floor of the hospital and I wasn’t in a coma that by the grace of God, I had survived without any harm.

They never mentioned, ever, that I was going to be at risk for CPM/EPM for weeks, actually months. I thought I was safe.

A few days after leaving the ICU, I was released from the hospital completely.

My biggest concern was developing hyponatremia again. The ICU doctor who was following my treatment requested that I continue to have my sodium levels evaluated over the weekend. He was going to personally call me with the results.

I really believed that this was unbelievable care, and it gave me relief knowing that I was in capable hands.

I had my levels checked. They were normal, and I felt fine. My headache had been gone for several days. I felt tired, but who wouldn’t?  In a two period, I had pituitary surgery AND developed a life threatening case of hyponatremia. I didn’t attribute fatigue to anything but my recent experiences.

That weekend, Tom pushed for us to go to an outdoor festival as a family. I was tired but remarkably better, and I really appreciated doing something with the family on a beautiful June weekend, so we went.

We didn’t stay long because it was really taxing. In less than an hour, we left.

Looking back on it, I think this is when I first started to experience an issue related to EPM.

We were driving home, and I wanted to rent a movie from a Redbox or Family Video. We were just down the street from a Family Video, and I forgot that I wanted to rent one until we were a few blocks from home.

And this is some what how the conversation went:

Me: Oh, I wanted a movie from the movie thing

Tom: Huh, what are you talking about?

Me: I wanted to get a movie from the thing.

Tom: What thing? What are you talking about?

Me: I want a movie.

Zack: Mom, what are you on? You aren’t making any sense.

Me: A MOVIE! From the thing!

(Both Tom and Zack were snickering at me by this point, and I was getting more and more upset).

Me: From KROGER or the VIDEO PLACE.

(At this point, I think they knew what I was talking about, but continued to mess around with me.)

Me: NEVER MIND! YOU GUYS ARE STUPID. WHERE DO YOU GET MOVIES FROM?

Zack: You mean, the RedBox?

Me: YES!

Zack: You weren’t making any sense.

Me: Where else would you get a movie?

Tom: The movie theater.

Me: NO, You can’t GET a movie from the theater. You watch movies there.

That afternoon, I was watching a movie from the “movie thing”, ie RedBox. It was in the early evening, and I sneezed. It was a horrible, hard sneeze. Now, just in case you don’t know, after you have a pituitary or other brain surgery, you aren’t supposed to sneeze for 12 weeks!

Anyone who is currently living in Ohio will understand that is impossible, especially in June. The neurosurgeon told me that if I did sneeze to create less pressure, be sure to sneeze with your mouth CLOSED.

The sneeze I had was extremely sudden onset, and I did not have the option of sneezing with my mouth closed. It FREAKING HURT!!

It took about five minutes for the initial pain to wear off. About 30 minutes to an hour later, a headache came back. I thought, geez, I rattled something. And, I was also concerned because if you do have a hard sneeze after having a pituitary surgery, you can displace the fat patch that they use to make a barrier between your brain and nose.

It’s a pretty serious complication if you sneeze that patch out, and the stuff that came out of my nose was pretty gross.

I didn’t really think it was a serious issue until a few hours later when the headache didn’t stop. I took some prescription pain meds to stop the headache, and they didn’t work.

My next fear was that I was developing hyponatremia again. Remember, one of my first symptoms of hyponatremia was a severe headache.

I decided to wait till Monday, and if the headache didn’t stop, then I would go to the ER.

The next day, I still had a headache, and it wouldn’t go away, so I made the trip the ER.

They did a CT scan. My fat patch was in place. I was told that my sodium levels were normal, and that I must have a migraine.

I think they gave me an injection of medication for migraines and sent me home.

The next day, I had an early morning appointment in Cincinnati, about 45 minutes away. It had nothing to do with my pituitary surgery. It had nothing to do with my hyponatremia. In 1999, I had broken my ankle, and in April and May had started to give me problems. I had to go meet with my orthopedist to determine if a future surgery would be needed.

Tom had to drive me to the appointment. I was not allowed to drive due to my health. It was on the way from that appointment that I really became aware of a problem.

My headache was not going away, and I was taking the pain meds every four hours to try to “kill” it.

On the way home from the appointment, I got a phone call from my insurance adjuster, and I was having a hard speaking.

I was trying to say the word, “estimate”, and I couldn’t. I just kept saying..eh, eh, eh, eh.

Then I tried explain to Tom what was going on, and I was having issues speaking to him. I was really tired. My head was splitting. I knew something was wrong.

I began to realize how bad things were when I tried to swallow.

Now let me explain the difference between having issues with swallowing vs choking. I will address these differences in a future post. As for now, I will try to describe what was happening to me.

I wasn’t eating or drinking anything at the time. I was just doing one of those normal swallows that you do through out the day. It might have been to clear my throat or another type of natural reflex.

I was struggling to do it. The muscles in my throat were not working. I kept trying to do it. It was extremely uncomfortable.

It seems so simple and natural, but after several minutes of struggling, I knew that I needed to go back to the ER.

We went home, and I discussed it with Tom. I thought this all might be related to hyponatremia still, but then I began to research hyponatremia to see if I could determine if I could get it a second time, or if it was common to have it happen a second time.

It was at that point that I realized my symptoms were matching up exactly to CPM/EPM.  I also discovered how quickly was too quickly on raising sodium levels.

We decided I would return to the same ER. I have never went to an ER twice in a row before, and I thought this would trigger the doctors to do something, anything.

The checked my sodium levels and did another CT scan. Everything on the CT scan looked good.

The radiology tech who saw me the night before, was treating me again, and she realized the difference. I explained that I thought I was developing CPM/EPM from having my sodium levels too quickly. I told her the only way to know for certain is to do a MRI. She told me that they wouldn’t do a MRI at that ER after hours, but I would need to go to the main ER to have the test done.

The doctor thought that I had a large amount of sinus packing in my sinus cavities. He told me that this was what was causing the headaches.

I was also experiencing stomach pains, so I thought maybe it wasn’t CPM, maybe it was an adrenal attack. After all, I had just had pituitary surgery, and I had been concerned that the stress on my pituitary would cause an issue with my adrenals.

I know, adrenal issues. For years, I had been told that I probably had acute intermittent porphyria. I wasn’t entirely convinced but a ton of the symptoms for AIP fit with what I had experienced, and most importantly, glucose therapy FIXED it.

I asked doctors several years, what would cause an elevation in uroporphyrins AND could be successfully treated with glucose therapy. The only thing they knew of was AIP.

It wasn’t until I met with my magnificent endocrinologist, that I had an answer: Cushing’s disease would cause elevated uroporphyrins

I also found that the crippling abdominal attacks that I’ve suffered from years (usually they happened during extreme stress or while trying new prescription drugs) could be caused by adrenal attacks. The adrenal attacks are treated with high glucose therapy.

The adrenal-pituitary connection made sense where AIP didn’t. The symptoms mirrored each other. I had found my answers.

So when I had my pituitary removed, I became concerned that I would have issues with my adrenal gland. Since the treatment for AIP and adrenal crisis is the same, I told the ER doctor that I was having an AIP attack.

He was extremely willing to give me the treatment for the abdominal pain, but he disagreed about the appropriate treatment. He told me that glucose was not the treatment for AIP, but glucocorticoids. I know he was incorrect, but at that time, I was so incapacitated from the pain medications that they gave me and due to the developing injury caused by EPM, I was in no position to argue or prove him wrong.

I immediately got sick from the medication he gave me ( I believe glucocorticoids). It caused me to have extreme pain everywhere. I felt like my body was on fire. I immediately thought that I was having an allergic reaction to the medications. The nurse told me that the reaction was normal.

I know what they have me was not what I normally received for AIP attacks.

Anyway, I was released from the ER with a diagnosis of a sinusitis. I was given a prescription medication of glucocorticoids for the crippling abdominal pains.

I did not realize how serious my condition was, but I knew that I needed to have a MRI to rule out or confirm CPM, so I decided to call my GP in the morning because I felt that there was no way that he would let me down.

I got an early morning appointment with a nurse practitioner. I explained the situation to the receptionist over the phone, but my GP was booked. I thought, well even if I see the nurse, then I will have access to my GP. I will make sure she asks him about CPM and the MRI.

When I met the nurse practitioner, my speech was even worse! I was barely able to make sense. I was beginning to have trouble understanding what other people were saying.

I explained that I thought I was developing CPM because my sodium levels were raised too quickly.

I got the arched eyebrow and the smirk. I knew she thought I was nuts or making this up.

She told me that they wouldn’t be able to request a MRI because we were approaching the fourth of July weekend. She told me that if I was really concerned about it that I should go back to the ER.

I explained that I had already gone there twice and that I would like to have it discussed with my GP.

She told me that he and her had already discussed my situation and had made the decision that they wouldn’t be able to do anything.

I wasn’t speaking properly and having issues swallowing, and my GP wasn’t going to do anything.

I was extremely disappointed, but had no other options.

When I developed hyponatremia, I had reached out to the endocrinologist who had been treating me, and I had been in continued contact with the nurse who worked with my neurosurgeon. After I had been told by the ER the night before that they thought my extreme headache was being caused from packing left in from the pituitary surgery, I contacted the ENT who was responsible for opening and closing my sinus for the neurosurgeon.

The ENT was the first doctor who directly responded to my concerns. As I was on my way home from my GP’s office, the ENT told me that he wanted to see me. He told me (as he had told me before) that they didn’t use packing in the surgery. He was concerned that my pain, etc was being caused by an infection or a breach of the fat patch.

He wanted to see me as soon as possible the next day. At the same time, my endocrinologist reached out to me because she wanted me to see a neurologist over my speech issues.

At this point, I’m beginning to confuse myself. I don’t think I had my appointments for my doctors until after I had gone back to the ER for the third time, after I had seen my GP.

I believe while I was at the ER for the third time, I got a call from my doctors regarding my appointments, or maybe it was a voice mail. I will have to update this information after I review notes that I have.

I had gone to the ER with the intention that I was going to get the MRI that I needed in order to determine if I had CPM. At this point, I was beginning to walk into walls. I was losing my balance. I was having extreme issues in speaking.

It was like I was having a stroke.

When I went to the ER, I told them flat out what the doctors and nurses from ICU had told me; they thought they had raised my sodium levels too quickly. I told them, I think  I’m having issues related to CPM/EPM, and I needed to have a MRI to determine if that was the problem. I explained my headache was unrelenting and that the previous CT scans only showed “possible sinus packing”  or sinusitis.

They made me almost incoherent from pain medications. At this point, I had not been able to sleep. I COULD NOT sleep. It’s not a typical case of insomnia. I was exhausted. I wanted to sleep, but I wasn’t sleeping. This was something new.

After awhile of laying there, trying to watch TV but not being able to actually understand what I was watching (I thought it was because of the medications they had given me), a different doctor came in. He was foreign. I could not understand anything he was saying. It’s not because he wasn’t speaking English. It wasn’t because of an accent. I could hear him speaking. I could see him moving his lips, but I had no idea what he was saying. I knew he was asking questions, so I kept trying to give him answers, but I had no idea what he was asking, NO CLUE!

This is when I became really scared.

He told me that he wanted to admit me for observation.  In that moment, I knew these guys, this hospital, weren’t going to do anything.

All they had to do was a MRI, and they were going to admit me.

I decided I was going to have better chances of getting answers at a different hospital, and the one in this larger hospital had prestige, and it had doctors that I really trusted.

Don’t ask me why I could understand some things and not others. It made me feel like I was nuts. It was like having a loose connection somewhere. I was struggling to understand or to hear or to speak, but there were moments of clarity.

It really made me feel nuts and frustrated.

This is all part of having CPM/EPM.

It’s sad to say that this was just the beginning of the middle of my story.

I know. Isn’t it crazy? At this point in my story, I have tried and tried to get answers, but I was met with ignorance, obstinance and frustration.

I hope this part of my story motivates you not to give up on yourself. Trust me, it would have been easy for me to go home the first day from the ER and just pretend that it was a migraine. It would have been easier to just try to pump myself full of more and more pain medications, but when you know there’s something wrong, you may be the only one who will fight for you.

You can’t give up on yourself. You can’t believe the doctors over what your body is telling you. Don’t ignore the symptoms when the answers don’t just fall into your lap. You are the only voice that matters when it concerns your life and your health.

My EPM Story: the middle (part 2):

Thank You for your patience. It took me a few days to locate my notes regarding my hyponatremia stay, and even after locating them, I’m still fuzzy regarding the details.

To be honest, it is hard for me to remember if I remembered correctly. For instance, I wrote in my notes that they gave me potassium via IV, but I really thought I had to take potassium tablets. I know I had potassium tablets when I was at the hospital that treated me for EPM, but I can’t remember how I was treated for low potassium while being hospitalized for hyponatremia.

You might be wondering; really, what does it matter? Well, it raises doubts as to what I wrote back then. Was I remembering things correctly even a few weeks after it happened? Can I accurately tell you what happened to me?

I know there might be some information in my posts that contradicts something I might have posted for certain (I hope not), but that’s usually because I find a new study or new information that contradicts what I have found in research previously.

I am trying desperately to keep everything I write accurate and informative, and I want that to be extended to how I was treated and how my story took place.

That said, I remember waking up in the ICU. At the hospital I went to, the ICU rooms were vast and private.

I thought it was a Sunday morning. It felt like I had been unconscious for awhile, but it turned out to be a Saturday.

The nurse questioned me regarding, the day, the year, the current President, where I was.

I answered everything correctly, except the day, but she told confirmed my mistake that it was Sunday, when in fact it was still Saturday.

I realized this when the next nurse or doctor came in to speak with me, which was pretty quickly. (I believe there were two doctors. One I know was a nephrologist. The second, I believe, was an endocrinologist.)

They explained the seriousness of the situation. They explained that I could develop seizures, delirium, go into a coma, or die.

The nurse had explained the same situation to me before the doctors, but the gravity of it really wasn’t sinking in.

Don’t get me wrong, I felt like I was dying. I had a hard time staying awake, but I was fighting to stay alert and aware. I will stress, I was fighting. My head was splitting. It wasn’t a classic throbbing pain, but an intolerable pain from the base of my neck that radiated through my head. I would have to explain it in what I would think it felt like, and that is as if someone had pierced the base of my skull with an ice pick.

I felt as if I fell asleep that I wouldn’t wake up, but I couldn’t stay awake.

When the doctors (I believe there was more than one that saw me initially in the ICU) and nurse left, I really had to use the bathroom.

I’m incredibly stubborn, and the doctor had told me that I was going to have to stay in bed, complete bed rest, but I didn’t want to use a bedpan, so a few minutes after they left the room, I stood up out of bed. I felt weak. I felt nauseous and light headed. I knew I had to act quickly, so I started unplugging things.

I got the pulseoxomiter unhooked. I couldn’t figure out to how to unhook the leads to my EKG monitor. I felt so bad, and I knew I was losing time. The nurse was going to be back any time.

When you’re that sick, you just don’t think clearly. I had unhooked these monitors dozens of times before when I was in the hospital, but I couldn’t figure it out this time, and if I pulled all of the leads from my chest, then they would know I had been out of bed.

My efforts were in vain. I stood there in my hospital gown as guilty as a kid stealing a cookie before dinner, the nurse walked in.

Chastised and defeated, I climbed back into bed, as she put on the pulseoxomiter. She reinforced that if I had to use the bathroom, it would have to be on a bedpan.

This was an atrocity that I had avoided for 32 years. (I’m accounting that I had been potty trained before the age of two).

If you have not had the embarrassment of using a bedpan, if you have to use one, you are usually in a position where you don’t care if you use one or not. However, this is not always the case, and it wasn’t in mine.

I contemplated holding it until I could attempt another break for it, but I couldn’t and using a bedpan was a lesser evil than defecating in my hospital bed.

So, in came the nurse, bedpan in hand,  she instructed me to roll to my left side.

Now, I know you weren’t anticipating this little bit of knowledge, but I figure it’s better if I tell you then you’re surprised by it in the end.

If you’ve ever used a bedpan, they’re one size fits all. There aren’t any xs or xl bedpans. I would totally need the xl. My a$$ is plentiful, so as I was positioned on it, I felt for certain, I was going to need clean sheets despite having a pan underneath me.

I’m sure if you’re an xs, it probably feels as if you’re sinking down into it. I don’t know which feeling would be worse.

Here’s the other thing you should know: it is unbelievably difficult to use the bathroom flat on your back. It gives me a whole new appreciation for babies.

I guess, once you figure out how to stop from using the bathroom while lying on your back, there becomes a conscious muscle control that prevents you from doing it.

As I was trying to overcome my conscious muscle control, I was totally regretting eating over a quarter of a watermelon the previous day. Yes, drinking caffeine (iced tea) and eating watermelon, along with having low sodium levels, leaves you fully loaded in the intestine department.

I apologetically informed the nurse as to what was in store, and I suddenly had a whole new appreciation for their job. If I was her, I would have tossed my cookies.

I guess, they become accustomed to the gruesome because she didn’t hurl.

That said, when the first major incident was 20 minutes in the past, I had another date with the bedpan.

Relieved, when all the urges had passed, I was informed of the next plight. I was going to be on an all liquid, high sodium diet. What does this mean? Soda and broth..oh and jello.

I haven’t mentioned this previously, but my culinary tastes don’t routinely include broth and jello. I do drink a Pepsi a day usually, but I don’t usually drink more than that, so I wasn’t a happy camper. I really didn’t feel very well, and I didn’t think that chicken broth and Pepsi was going to make me feel better.

Truly, I was concerned with what I was eating.

Yes, even being near to the  closer end to death, I was concerned with my dietary options.

(Woohoo, I just want to break to say, I’m extremely pleased with my ability in writing today’s post. After struggling for months to complete my thoughts, today is going pretty smoothly 🙂 )

I remember meeting with the doctors, I believe there were two of them that met me both at once, but it might have been one just after the other.  Both of them expressed the seriousness of the condition.

Tom was unaware of my situation. He was still at home by early afternoon. I really didn’t care at the time if he was there.

At this point in time, most of the day, Saturday, I felt like a human pin cushion.

I believe I was having a new lab drawn every 3 or 4 hours. (It might have been every 8 to 12. I know at one point, they became less frequent.)

I had already been in the hospital from June 10 to June 16th for my pituitary surgery. They had also been very generous in poking me full of holes, so I’m afraid my continuous disappointment in having lab work done was evident.

When I was admitted to the ER, my sodium levels were 118, by the next afternoon, my levels had dropped to 110.

At this point in time, I was awake and aware of what was happening despite the drop in sodium.

(This is why I believe, I had the chronic form of hyponatremia. I believe my levels were probably dropping while I was in the hospital for pituitary surgery, but were still in the normal range at the time I was discharged. I think that over the course of Wednesday evening, Thursday and Friday they continued to drop. This would explain why my brain stem didn’t rupture or why my CT scan didn’t show any evidence of cerebrum swelling.)

I was sending out texts and making calls to my family and friends requesting prayers as soon as I could Saturday.

I remember watching a ton of TV. I remember spending a lot of time going in and out of consciousness. I also remember having an UNRELENTING headache.

By Saturday night, my potassium was also too low, and I believe I received IV potassium.

They did place a PICC line. I think that was when I first arrived; however, they didn’t use it except to administer medications.

They were concerned that since they flushed the PICC line with saline solution that the labs would be invalid, so every time I had my blood drawn, I had to have a puncture. That led to a LOT of punctures.

Sunday, I was still experiencing the extreme headache. I was still experiencing the nausea, and I still felt like I was dying.

I had talked with my Aunt, who is an opthamologist. She stressed the importance that they raise my sodium levels very slowly.

Every doctor and nurse that I spoke with said the same thing, so I really thought they knew what they were doing. Since they told me that it had to be raised slowly, I thought they knew how to raise it slowly.

What I wasn’t told: what exactly slowly meant. The doctors told me that it would probably take 5 days or more to get my levels back to normal.

I was already on IV saline, and I was receiving liquids only on Saturday. On Sunday, they continued the 3% saline IV, but they allowed me to start eating a “normal”, non liquid, diet. Yay!

Sunday afternoon, they started to enforce a fluid restriction.

I was not exactly happy about this. I was really thirsty. It wasn’t just dry mouth.

My neurosurgeon who performed my pituitary surgery was cautious to inform me that I would need to be careful about distinguishing between thirst and dry mouth, so while I was hospitalized for the hyponatremia, I brought hard candy  and chewing gum to keep my mouth from drying out.

By Sunday night, I was begging for water from the nurses. They told me that I could only have 4 oz in an 8 hour period.

I remember after Tom left Sunday night, the nurse brought me what she called the “magic” pill. She told me that this is what they used when someone’s sodium level wasn’t rising fast enough with IV saline. She called said when sodium levels were being “stubborn”.

I thought, this will make me feel better.

I turned the TV off and went to sleep.

I remember at some point after that, I requested to use the bed pan. I was still on strict bed rest, and I really had to use that bathroom.

I think I had tried to use the bed pan, but couldn’t, so the nurse told me that she would come back later.

Apparently, shortly after this,  I became delusional.

The next thing I remember, there were trying to insert a catheter. The first nurse made several attempts. Then another nurse tried to make several attempts. It didn’t work.

Trust me. I was sick, but I could still feel pain.

At this point, I said, I’m going home. I’m not doing this. I had gone from being completely out of it, to completely aware of what was going, to I don’t care what’s going on because I feel like I’m dying, in a span of 5 minutes.

They called another nurse from the OB/GYN ward to insert the catheter. He said something I’ve heard before; you’re anatomically abnormal. Then he followed with, you’re ureter curves at a weird angle. I had never heard that before, but I’ll trust him on it.

He was able to get the catheter in it’s proper place, and I apparently wasn’t lying when I said I had to go. If I’m correct, the nurse told me that I had emptied two turns, which if I’m correct, corresponds to two liters.

Apparently, I had also soaked my bed because she spent the next 15 minutes changing the sheets and my gown, and cleaning up.

In other words, I wasn’t kidding when I said, I really need to use the bathroom!

The next morning, I was SO thirsty. I remember they gave me my 4oz, and I couldn’t help but guzzle it. They gave me fluids with my breakfast too, and I guzzled that. I really couldn’t help it.

As I was “enjoying” my breakfast, the nurse was discussing why I was restrained. Yes, I had the belt around my stomach.

Now, I really don’t remember doing this, but she told me that when I became delusional, I apparently got out of bed, pulled out all of my leads and strolled down the ICU hallway naked looking for a bathroom.

Given my previous dissatisfaction with using a bed pan, I can’t say that I absolutely did not do this. However, I had a PICC line, and as out of it as I was, I could not imagine pulling out all of my leads, but not pulling out the PICC line.

Maybe, I had the foresight to grab my IV bag from the stand and stroll down the hallway naked, but considering how much of everything else that I remember, I believe this was lore for the sake of inserting a catheter so she wouldn’t have to clean a bedpan.

I don’t know. Really. Maybe, I’m way more skilled in delirium than I am fairly conscious. Guess, we’ll never know for sure.

Anyway, when the nurse told me that I drank through my ration of liquids in about 10 minutes, I sent an emergency message to Tom: you need to sneak in some water and Pepsi. Please, I’m dying of thirst.

I swear, I had just finished sending that text, when the nurse came hurrying in. She stated: they think your sodium went up too quickly. We’re stopping the saline. You need to drink as much as you can. What can I get you?

She was changing my IV fluids at that point in time.

I thought: Thank God! I requested water, and then sent the text to Tom, saying what they had just told me. My sodium levels went up too quickly. They’re worried that it’s going to go up too high. You don’t have to bring any water. I still want the Pepsi.

I knew what they said, but I didn’t know what it meant.

At this point, my sodium levels were 137. By Monday afternoon, they were 145. The range for normal is 135 to 145.

So to recap, I was admitted with a sodium of 118 on Saturday morning at 1am. By Saturday afternoon, it had continued to drop to 110. By Sunday morning, it was 118. That was 8mmol in about 30 hours. If you compare it from Saturday evening to Sunday evening, it raised by 9 mmol.  From Sunday morning to Monday morning, it went from 119 to 142. It was more than 23 mmol in 24 hours.

From everything I posted in my blog to date, it shows that this was too quickly.

I thought that I was going to be fine because I was doing fine.

I didn’t realize that it could take up to a week or longer for CPM or EPM to develop.

On Tuesday afternoon, my sodium levels had stabilized, and I was released from the ICU.

This further escalated my belief that I was extremely lucky and that I was going to be completely fine.

I spent the next few days in the hospital without incident.

By Thursday afternoon, I was ready and willing to leave. I was looking forward to getting back home to my kids, to sleeping in my bed, to eating what I wanted to eat, to not being awoken every 3 or 4 hours to have my vitals checked or to take medications.

The doctors who worked with me, NEVER gave me a hint that something else could happen after the hyponatremia. They NEVER told me that it could take a week or longer for this new injury to develop. I had NO clue what was going to happen next.

Because of that, I am writing this blog. Because of that, I am injured, possibly for the rest of my life.

I really hope that you will read my story and realize that this could happen to you. This could happen to someone you love, but if you forward this information, you might be able to stop it.

This is by far my longest post to date. There might be a few errors, so please bare with me as I work on editing it in the next few days.

If you have questions or find something lacking, please let me know.

My story: The middle….

So, if you’re the random physician, you might have read my beginning story and thought, “hypochondriac”. You might think that if you aren’t a physician. Trust me that crossed my mind over and over again in the past 8 years.

Really…are you really feeling what you’re feeling? Try just sucking it up for a few weeks. Try concentrating on other things. Try the 20th antidepressant because your doctor believes it’s all in your head.

I even went to a psychologist not just once, but for dozens of appointments. I didn’t want to be sick any more than I wanted to have a broken bone.

Being sick robs you of life! You want to take your 6 year old son to the zoo, but every bone,muscle, joint in your body hurts. You want to go on vacation, but you’ve spent every day of your sick and vacation time at home or recovering from surgery. You’ve spent THOUSANDS of dollars on medical treatment, so you can’t afford to send your kid to camp or get a newer car.

To all of those people who believe that I was making it up, that it was all in my head or that I wanted to be sick, this is all I have to say to you: F*** You! Walk a day in my shoes and you would fall to the ground and would never get up.

(I would have totally left the proper cuss word in, however, I was told by Tom it might be a touch dramatic. I guess he didn’t read the rest of my post ;0)

I GET UP! Every time. It’s not easy, and I do struggle with it. I am extremely lucky to have great friends and family in my life that help carry me when everything becomes way too much for me to handle.

I have not given up, not yet. There are days when I want to. Yes, living a life with illness has caused me to make sacrifices. I’ve had to work on days that I could barely move. I’ve missed my son’s football games. I have scrimped to get by and have had to max out credit cards to make sure that I had food and clothes for my kids and me.

Being ill for this many years has PUSHED me to be a better person.

I started back to school while working full time, so that I could become a doctor because I had NO DOUBT that I can make a difference in the lives of other people. Money wasn’t a motivator. Trust me. It would be easier for me to work for less and not go to school than get up each day go to school, then go to work, and then come home and do laundry or homework.

I PUSHED myself to work 40 hours or more a week, while going to school full time, while taking care of my family, while being PREGNANT, while being SICK because of my absolution to help people, because I have been there. I have faced the struggle that 99.9% of the doctors have never faced.

It’s not enough to have an arrogant ass in a white coat tell you they are sorry or they don’t know. You need to have someone who has drunk the foul tasting barium, who has had a half dozen colonoscopies, who has gone years being ill with no answers; that is a person who you want to hold your hand or tell you they don’t know.

I am that person, and that’s why I have pushed myself to do what I have done.

YES, I AM EVERY WOMAN. I AM STRONG. I AM INDEPENDENT, but that doesn’t mean that I’m invincible.

Being told that I had a pituitary tumor gave me an answer, and it gave me a solution. No, I wouldn’t be able to put the toothpaste back in the tube. There were certain things that are irreversible, the auto immune issues, but I knew I could handle those things. I wasn’t going to continue to get worse, at least not from the pituitary tumor. IT was fixable, stoppable, and most importantly I had my answer.

My pituitary surgery happened June 10th. Everything went well with the surgery. There was an issue after the surgery where they thought I might have developed diabetes insipidus (see my earlier posts in hyponatremia for an explanation of what the difference between diabetes mellitus and insipidus are). It was pretty inconclusive. They thought I might have been just drinking too much water. I don’t think this was the case, but I honestly don’t know.

I know I was peeing a lot. I didn’t think there was much of an issue. Diabetes insipidus is when you pee more than you drink. So if you drink 8oz of water but excrete 16oz, then you probably have diabetes insipidus. They continuously measured my input and output, and this is what they felt was my issue.

I was kept in the hospital for 6 days after the pituitary surgery with all normal labs and normal vitals. That was a Wednesday.

Finally, I felt my exodus was over. There was a light at the end of the tunnel.

Friday morning, I woke up. I had a headache, but I really felt it was from the pituitary surgery. Then, I noticed my feet were cramping.

I’ve had muscle spasms in my feet since I was a kid, so I really didn’t believe this was anything new.

I had to go to the grocery store, so Tom and I went. It was there that my feet started cramping again. Now, this was unusual. The cramping felt different from when I get the spasms in my feet, but I didn’t think too much about it.

When I got home, I just felt-blah. I felt weak and tired. I ate some watermelon, drank some tea, and went to bed.

I woke up, went to the bathroom, ate some watermelon, drank some tea, and went back to bed.

I really felt off.

The next time I woke up, I felt really bad. I knew there was something radically wrong. The headache was just not going away. It was starting at the base of my neck and radiated through my brain. I felt sick to my stomach. My feet cramped when I stood up. I couldn’t tell if I was going to pass out or vomit.

I told Tom, he had to take me to the ER. I didn’t think I was going to live. (Yeah, I know, but there was this strange feeling, different from times in the past when I felt really sick. Can’t truly explain it, but you’ll know it if you’ve gone through it.)  I thought I was going to have to call an ambulance. (Tom was picking up our son, Zack, from a friend’s house, so he wasn’t home when I made the decision that this was really bad.

It seemed like an eternity for him to make it home and for me to get to the ER. I don’t remember much when I got there. This was around 11pm to midnight Friday night.

I remember going in and out of consciousness. I remember asking for pain medications. I remember at one point they did a CT scan, but I don’t remember getting back and forth from the room or having it done.

I remember a doctor coming in and telling me that my CT was normal. I thought, oh my God, they are going to send me home, but part of me didn’t care. The other part of me wanted to fight.

I was really lucky that they didn’t.

I think he came back later and he told me that my sodium levels were too low and that I would need to be transferred to the main hospital. I had a sodium level of 118.

They actually repeated the test to make sure it wasn’t a lab error. It came back 117.

I felt horrible.

I asked for pain and nausea medications over and over again because I couldn’t remember them giving me any. I just kept going in and out of consciousness. I want to stress this is not like falling asleep. Falling asleep you can generally fight. This I had NO control over.

I remember at one point I got up to go to the bathroom. The nurse asked me if he needed to assist me. My stubbornness and humility was still prevailing at this time, and I refused his help. I was really, really, lucky I didn’t pass out on the way to the bathroom.

Around 5 or 6 am I got transferred. I felt a huge moment of relief because I really thought this meant that I would get relief. I felt once I got there I was going to be better.

I remember being loaded onto an ambulance. I don’t remember the ride there. I remember staring at lights as they wheeled me down the hallway.

I remember being pushed through the doors of the ICU room where I was going to stay.

The next thing, I remember was waking up and it was morning, but I had NO idea what day it was. I didn’t know if I was out for a few hours or if days had passed. I knew where I was. I knew I had to go to the bathroom.

I know the nurse asked me questions. I thought it was Sunday. However, I don’t think it really was now. I think the nurse misinformed me.

I never went into an actual coma. I was in and out of consciousness the first day.

I believe I was still able to text my friends and family that morning to let them know what was happening.

Tom had left me the night before at the ER. He didn’t realize what serious condition I was in, and he went home to be with the kids.

I’m going to leave it here at this point because I wrote notes to myself about what I experienced a long time ago. My memory fails me now. I have to go back through my notes to know for certain what actually happened next.

I hope you find strength in this so far. I hope you understand that just because you have been sick or have faced issues, doesn’t mean that this is the end of the story. It’s just the middle. You’ve got a lot more ahead of you both good and bad, but it’s definitely not over.

Have faith.

My Story: The beginning….

Today has been a rough day for me. I’m physically and mentally exhausted, and I really feel like giving up. Yes, partly because of the CPM/EPM, but mostly because all of the other health issues I’ve faced in the past 8, going on 9, years.

In the beginning, I thought I had the flu. I had low grade fever, aches and pains, nausea, vomiting, and abdominal pain. It was the first time I actually had to call off work for illness. I had NO idea that it was the beginning of an incredibly long and pain filled journey.

I really thought that in a few days, I would be back to 100%. I had a friend recommend seeing their family doctor when I complained that I was fatigued and gaining weight for no reason. She felt that it was a thyroid issue because she had a similar problem. A few weeks later, I got the “flu”.

I went through a long process of testing and blood work. The tests kept coming back normal. My thyroid was in the lower limits of normal, but still normal. My CBC was normal, and as more blood tests came back normal I felt more and more nervous. What was the issue?

I had ultrasounds and a CT scan. That was normal.

I saw my ob/gyn, my gp, and a GI specialist. The GI doctor told me that there was nothing physically wrong with me and that it was probably psychological issue.

I went to a new GP. I felt that since the GI doctor sent that report to my original GP, and all of my other tests were normal that the GP would probably agree with the GI doctor. I shouldn’t have done that. My original GP was a good doctor. She had not thrown in the towel on my care, but I believed others view point would impact her decisions.

I went to a new GP, and he began to run the same tests again. He believed that despite normal CT scan and blood work that I could have an issue with my appendicitis. There’s something called an acute appendicitis and chronic appendicitis. The acute version can be the life threatening kind that develops suddenly and lead to rupture. The chronic causes chronic abdominal pain, low grade fevers, nausea and vomiting.

This GP contacted a surgeon who was his friend and requested an exploratory surgery. (My previous GI doctor told me that no one does exploratory surgery. He said, it was outdated medicine.)

The exploratory surgery revealed endometriosis. I had never heard of it previously, but it causes abdominal pain, nausea, vomiting, extreme menses. It can cause intestinal bleeding. It can evade the lungs and cause bleeding in the lungs. It can actually be found in the brain as well.

My endometriosis was not severe, but the surgeon felt that this explained my symptoms 100% percent, and I was relieved, but I also felt a nagging uncertainty. It did not explain the fatigue or weight gain or hair loss, but my abdominal pain was gone.

But my relief only lasted 3 weeks! It was about the time that I stopped taking pain medications that my pain came back. Along with the pain, the nausea returned.

It took me about another 12 months of constant illness to have a repeat hida scan. This is a scan that tests the function of the gallbladder. I was told by my original GI doctor (the one that told me that a psychologist would be more benefit than an MD), that my first hida scan was normal.

The second hida scan was severely abnormal. It showed that my gallbladder function was less than 13%. This made my new GI doctor and GP think that my pain, nausea, etc was being caused by my gallbladder. So, I went through gallbladder surgery.

Again, I experienced temporary relief, approximately three weeks.

I continued to experience intestinal bleeding and anemia. These issues centered around my menses. It was thought that this was being caused by endometriosis of the intestine or colon.

Trying to catch the lesions of endometriosis in the intestine and colon is like trying to staple jello to a tree. It’s next to impossible.

Endometriosis is a disorder where uterine cells are found outside of the uterus. These cells are impacted by the same hormones as your menses. SO, every month these cells respond to estrogen and progesterone and swell, fill with blood and causes inflammation. Over time it leads to scar tissue. It also causes heavy menses, severe bleeding, abdominal pain, painful sex, etc. One of the biggest problems associated with endometriosis is infertility.  The scar tissue that is caused by endometriosis can act as a super glue in your abdominal cavity. It can cause your intestines to bind together. It can implant in the kidneys, ureter. It can infiltrate  the intestinal wall and cause intestinal bleeding. It can actually travel to your lungs and cause you to cough up blood, and further it can travel to the brain via the circulatory system and cause bleeding in the brain. However, it is most commonly found surround the uterus and the abdominal wall surrounding the uterus.

There is no cure for endometriosis, but the most common treatments are pregnancy, birth control, lupron, and hysterectomy. None of these treatments are 100% guaranteed, not even hysterectomy.

After my issues with endometriosis and my gallbladder were treated, I developed yet more symptoms. I still had issues with fatigue and abdominal pain, intestinal bleeding, hair loss, weight gain (or at least I couldn’t lose weight), muscle and joint pains, intestinal issues. Plus, I started developing tachycardia and shortness of breath.

I went through an ERCP and that specialist (an excellent doctor) determined my biliary duct was almost completely blocked. It was extremely swollen. I was also having issues with gastroparesis, gastritis, and slowing of my intestines.

After the ERCP, I felt better, but not perfect. My thyroid was still coming back low, but in the normal range.

In 2007, Tom and I decided to try to have a baby. We thought this would be a great way to manage the endometriosis without my having a hysterectomy. (I don’t do well with hormones and because I previously had superficial blood clots, I didn’t want to take a chance with birth control).

We actually got pregnant immediately, but at the 12 week mark, I had a miscarriage. I had never had a miscarriage before, and because my cousin had issues with Antiphospholipd syndrome. My cousin and I had very similar medical history’s. She had significantly more miscarriages than I, and over her trials and tribulations it was discovered that she had antiphopholipid syndrome.

Because we were practically twins (she’s a year older), but we grew up in the same area. We grew up together, played together. We were very close and had similar chemical exposures, so I asked my ob/gyn to run the testing for antiphospholipid panel.

It came back minimally positive.

I was sent to a hematologist who believed that my symptoms were being caused by acute intermittent porphyria. My 24 hour urine analysis showed a fairly significant elevation in uroporphyrins, but other tests like porphobilinogens came back normal. We tried for months to get a conclusive diagnosis for AIP, but my future tests came back normal.

Talk about frustrating.

I was still experiencing intestinal bleeding (intermittently). I was still having the fatigue and muscle aches, and all the other crazy symptoms.

SO, I decided it was time to see a rheumatologist. She found the elevations yet again in my APS antibodies. She ran several other autoimmune panels. Everything was normal except for APS.

At this time, I began to wonder how unlucky was I? Did I really have endometriosis, IBS, chronic fatigue (I had positive Epstein Bar antibodies), APS, and AIP? I also had developed tachycardia, palpitations, and hypertension.

I took the advice of my original GI and began to consult a psychologist. I think she believed that my issues were psychological at first, but after 12 months or so, I think she became convinced that even though being ill did stress me out, my health issues were real. She helped me to find ways to deal with the anxiety related to the issues.

After I became pregnant in 2007, I tried for 6 months to become pregnant again. It didn’t happen. It was at that time that I discovered I had hormone issues with FSH/LH. I wasn’t having an LH surge.

Luckily, it took one series of fertility treatments to become pregnant. My body just needed a nudge to get me pregnant.

I took Lovenox through out my pregnancy to treat the APS. Despite treatments, I did experience issues with the pregnancy. My little girl was growth restricted. I also had issues with amniotic fluid levels, and because of the growth restriction, Izabel was born at 36 1/2 weeks. She only weighed 4 lbs 12 oz. She was pretty small considering she was almost term. (There were no doubts about the dates I became pregnant because of the fertility treatments.)

I was not expecting it, but I became pregnant again 9 months later. I was shocked, but excited. We lost that baby at 10 weeks despite Lovenox treatments.

Miscarriage is hard, but we got through it.

The really surprising thing for me was that while I was pregnant I LOST weight. It was the first time in 6 years of trying to lose weight that I was successful. The truly unbelievable part of it was that I was NOT dieting. I was eating a TON of food each day. It was not uncommon for me to eat a huge steak dinner or an 8 oz hamburger, and I LOST weight.

It was at this time that I really began to realize that I had an issue with hormones.

After being sent to doctor after doctor at a major hospital for different issues like hypertension, the risk of blood clots, the fatigue, dizziness with standing and sitting. I was sent to one of the BEST doctors in the world Dr. Hatipoglu. She believed that my issues were probably hormone related. She felt even more so that my problems were due to high cortisol.

In the in between time, I had an abnormal scleroderma antibody test. Now, if you don’t know much about scleroderma, it’s pretty scary. I haven’t been conclusively diagnosed with scleroderma, but it has been suspected.

So, this made me wonder, WTF! Really, more disorders? Well, Dr. Hatipoglu explained it to me. We researched the uroporphyrins…guess what? Cushing’s can cause elevated uroporphyrins! Guess what else?! It can cause APS. When you have one autoimmune disease, it is not uncommon to have more than one. Guess what…It is normal to have both scleroderma and APS. Those who have scleroderma also generally have endometriosis.

Yes, so, it seems that Cushing’s Disease was the primary disease which is what caused the initial weight gain and other issues. Either, I had endometriosis to begin with (which is what I expect), and the Cushing’s and endometriosis together caused the autoimmune issues (APS for sure and possible scleroderma). I was also eventually diagnosed with hypothyroidism.

Some of my cortisol levels came back abnormally high, others came back normal. This is known as cyclic Cushings. After several months of cortisol testing, I went through a more accurate specific test to determine if my Cushing’s was being caused by a pituitary tumor. It’s called petrosal sinus sampling.

After having that procedure done, there was NO question that I had a pituitary tumor. My levels were significantly abnormal. There was no doubt that I Cushing’s Disease.

Finally everything was starting to make sense. I probably don’t have AIP, but I definitely have APS, Cushing’s Disease, and endometriosis.

(Not related to the pituitary/ Cushing’s issue–but they also found ulcerations in my small intestine and abnormal microvilli. I believe without question that these abnormalities are what has caused the intestinal bleeding. I also believe that it’s related to endometriosis. After years of trying to explain the intermittent intestinal bleeding, I had proof that I not only had it, but what it probably was.)

Eight years of illness was finally answered. I knew what the problems were. I knew what the solutions were, and I could at least fix the source of these medical issues. I could remove the pituitary tumor.

Despite being sick for years, I have never given up. Of course, I’ve felt overwhelmed. I’ve felt depressed at times, but I knew there were answers somewhere.

After finally having an answer, Cushing’s Disease, I believed that my life would finally change for the better. I felt that I would definitely be able to get into medical school. My future was beginning to look a bit brighter.

What happened next was completely unanticipated, hyponatremia. Now, I face one of the greatest challenges, one of the biggest hurdles. I wonder if the 8 years of ongoing illness was the warm up to this. Maybe, I had to go through all of this to be strong enough to get through the brain damage.

I don’t know, but that’s the beginning. That’s how I got to this point in my life.

Now that I’m on this mysterious leg of my journey, I wonder if I have the strength that I need to do what I need to do. I wonder if I have the ability to get back to where I need to be.

I feel my will power weakening. I feel doubt surfacing. I’m at a precipice in my life, and I wonder if I get away from it.

I will continue my posts on my CPM/EPM story by discussing how I got hyponatremia and how the inappropriate treatment has brought me to this point in my life.

Thank you for “listening” and thank you for your ongoing support. Please feel free to share your story. It’s important to healing.

A Lovely Chart for Who is at Risk for Hyponatremia:

Hello, my friends and followers….

I know it has been several days since I’ve last posted, but it’s not because I’m losing interest, I swear. Please be patient with me. I am truly inflicted with EPM, and one of my biggest issues is with concentration and memory (which is EXTREMELY frustrating for a person who used to be able to open a 1400 page textbook and find a sentence in a matter of minutes).

Now, I read through a few research articles and I literally can’t remember what exactly it is that I read or where I read it 😦 However, in my ambition, I still believe I can read through 8 to 10 articles in a night and be able to keep it all straight, but I CAN’T.

I can’t remember what it is I read, and if I do remember something I read, I can’t find the article it was in, so I’m having to experiment with  methods to keep everything organized.

It’s not working very well. I never had to do it before, so I’m finding that my ability to do it SUCKS or maybe it’s not so much ability as the disability of  having EPM.

SO, here’s the thing. I have found tons of new information (or at least I think it’s new..can’t quite remember if I’ve added these things or not, and I tried to go back through previous posts, but can’t keep those straight either 😦 ) . Ok, so I hope it’s new, but if it’s not..PLEASE let me know!

Anyway, I have a lot of information that I want to add to these posts and updates. I will try to add information to older posts where I believe it fits, but I also don’t those who have read the previous posts to have to keep going back to find out about the new information, so I’m going to have to think about a way to keep updates easy to find. Maybe have an updates category/ post section.

Well, for now, here is a really helpful table that shows several categories for those who are at risk for developing hyponatremia. It’s something I just found, and I was surprised that it contained some additional at risk groups that I didn’t mention (didn’t think that was possible).

Normally, I would love to post a link to this, but I can’t. It’s a PDF, and I’m just not that PC savy, so if you would like to find out more, please research the article below:

Diagnosis and management of hyponatraemia
in hospitalised patients
P. Reddy, A. D. Mooradian

This was found in the International Journal of Clinical Practice,  October 2009, 63, 10, 1494–1508

(Okay, I lied: here is the link to the free article: http://onlinelibrary.wiley.com/doi/10.1111/j.1742-1241.2009.02103.x/abstract )

The information taken directly from the link above:

Table 4.   Drug-induced hyponatraemia
  1. SSRI, selective serotonin reuptake inhibitor; TCA, tricyclic antidepressant; MAOI, monoaminooxidase inhibitor; MDMA, methylenedioxymethamphetamine; NSAID, non-steroidal anti-inflammatory drugs; ACE, angiotensin converting enzyme.

Anti-psychotics Phenothiazines Haloperidol Anti-depressantsSSRI’s TCA’s MAOI’s Bupropion Anti-convulsants Carbamazepine, Oxcarbazepine, Sodium valproate Analgesics & Recreational drugs Morphine (high doses), Tramadol, MDMA (Ecstasy), NSAID’s, Colchicine, Venlafaxine, Cymbalta (duloxetine)
Cardiac drugs Thiazides, clonidine, ACE inhibitors, Aldosterone antagonists, Amiloride, Loop diuretics, Methyldopa, Amlodipine, Amiodarone, lorcainide, Propafenone, Theophylline, Terlipressin, Unfractionated heparin (aldosterone antagonist) Anti-diabeticsChlorpropamide, Tolbutamide, Glipizide Lipid lowering agentsClofibrate Anti-neoplastic agentsCyclophosphamide Vincristine Vinblastine Cisplatin, Hydroxyurea, Melphalan Immunosuppressive drugs Tacrolimus, Methotrexate, interferon α and γ, levamisole, Monoclonal antibodies Antibiotics Azithromycin Trimethoprim-sulfamethoxazole, ciprofloxacin, cefoperazone/sulbactam, rifabutinGastrointestinal drugsSomatostatin analogs, Omeprazole OthersBromocriptine
Table 5.   Non-drug induced causes of the syndrome of inappropriate ADH secretion (SIADH)
Non-osmotic stimuli CNS lesions Malignancies Increased intrathoracic pressure
  1. CVA, cerebrovascular accident; HIV, human immunodeficiency virus; TB, tuberculosis; CHF, congestive heart failure.

Nausea Tumours (neuroblastoma) Lymphoma, leukaemia, and Hodgkin disease Mediastinal tumours (thymoma, sarcoma)
Pain CVA Carcinoma of the uterus positive pressure ventilation
Stress Meningitis Ureteral, prostate, bladder carcinoma Infections (pneumonia, TB, aspergillosis, lung abscess)
HIV Encephalitis Carcinoma of duodenum and pancreas Bronchogenic carcinoma, mesothelioma
Acute psychosis Abscess Ectopic production of vasopressin by tumours (small cell lung ca, carcinoids Bronchiectasis
Surgery Guillain–Barré syndrome Cancers of the head and neck and nasopharynx Empyema
Pregnancy (physiological) Hydrocephalus Renal cell carcinoma Chronic obstructive pulmonary disease
Hypokalaemia Pituitary stalk lesion Osteosarcoma Pneumothorax
CHF exacerbation Delirium tremens
Demyelinating disease
Acute porphyria

I really found this article to be extremely detailed and informative regarding hyponatremia!! I really recommend it. However, it should be digested in small quantities because there is a LOT of medical lingo, etc. I consider it one of the top research articles for hyponatremia. I give it 5 stars 🙂

Anyway, please bear with me. There will be tons more to come. It will just take some time.

To summarize:

Ok, I know I’ve covered a LOT of information over the past few weeks regarding hyponatremia.

There is so much information and it is very complex that it’s hard to not get confused and lost in reading it, so I’m going to try to summarize what I’ve discussed so far.

There at least five categories of hyponatremia: Hypovalemic, Euvolemic, Hypervolemic, Redistributive, and Pseudohyponatrmia.

The most commonly impacted people:

Infants due to diluted formula

Alcoholics

athletes (especially marathon runners)

Those who have liver cancer, liver damage, chirossis of the liver.

The elderly (usually due to malnutrition and dehydration)

Brain injuries, brain tumors

Transplant patients

Burn patients

Person’s who are receiving chemotherapy

Person’s with kidney disease and those who receive dialysis

Person’s who take certain medications like diuretics and anti depressants.

AID’s patients

Person’s who have pneumonia or flu

Anorexics and bulemics.

I’m sure I’m leaving about a dozen other groups affected, but you get the picture. It’s pretty common. Approximately, 1.5 million people are treated for it each year, and that’s probably a low number because I do not believe it includes persons who develop it while being treated for other conditions and develop hyponatremia as a secondary illness. I’ll try to find more information on that in the future.

Hyponatremia is extremely dangerous.  If your blood sodium levels drop very quickly in a 24 to 48 hour period (acute hyponatremia), your brainstem can herniate and/or your brain swells. This can lead to seizures, comas, and of course death.

If you develop chronic hyponatremia, (when your sodium levels drop over a period of 2 days to several weeks) you are less likely to have brain swelling or brainstem herniation, but you become at extremely great risk for developing Central Pontine Myelinolysis or Extrapontine myelinolysis.

The proper treatment is an absolute must. General IV fluids should be avoided if hyponatremia is suspected. Instead, an IV of saline solution ranging from .9% to 3% saline should be used. In some cases, fluid restriction will correct hyponatremia.

A person should have their sodium levels checked a minimum of every 2 to 4 hours.

If they are uncertain of the type of hyponatremia you have, then an MRI should be used to determine if there is cerebral swelling (swelling of the brain) or brainstem swelling. If there’s swelling present on the MRI, then you most likely have an acute form of hyponatremia.

If you have an acute form of hyponatremia, you are at a high risk of dying from immediate brain injury. Because of the risk, it is necessary to raise your blood sodium levels quickly to a safe level. It should be raised 2 to 4 mmol/L in 1 to 2 hours. However, once symptoms improve, the treatment should be halted for at least 24 to 48 hours. No matter what, levels should not be raised more than 15 mmol in 24 hours, in regards to acute hyponatremia.

If a person has chronic hyponatremia, they do not usually display the same severe symptoms. They usually feel sick. They might experience fatigue, nausea, have a severe headache, dizziness, loss of consciousness, delirium, etc. They do not usually have seizures, coma, or death. They are usually more alert compared to a person with acute hyponatremia.

The treatment for someone with chronic hyponatremia is signficantly different from acute hyponatremia because their sodium level MUST be raised slowly. It should be raised no more than .5 to 1 mmol/ L per hour. It should not be raised more than 8 to 10 mmol in a 24 hour period. Some even caution that it should be raised no more than 6 to 8 mmol per 24 hours. If it is raised faster than this, a person can develop Central Pontine Myelinolysis or Extrapontine Myelinolysis.

Expect to be in the ICU for 4 to 5 days at the very least if the treatment is being done correctly.

A person should NOT be given oral prescription medications along with IV saline solutions. The treatment should be fluid restriction if the hyponatremia is not severe or if it is a chronic form. If the fluid restriction does not work (with the chronic form), than a .9% solution should be started. If they have the acute form, then the 3% solution should be used first. Again, if the sodium levels begin to rise to a point where the symptoms begin to subside, then the treatments should be discontinued to see how the body responds.

If a person’s body is not responding to fluid restriction or IV saline solutions, then a person should be given the oral prescription medications. THEY SHOULD NOT BE GIVEN AT THE SAME TIME AS IV SALINE SOLUTIONS. IT SHOULD BE ONE OR THE OTHER–NOT BOTH.

I really think these are the most important aspects to hyponatremia. Please feel free to contact me if you have any questions or want more information over any of the topics I’ve posted so far. If you find out any relevant information regarding hyponatremia that you think I should include, PLEASE contact me or leave a message here. I REALLY appreciate your help.

Thank you for your support!

Hyponatremia: More treatment information.

Ok, so I’ve been researching like crazy. I have a friend who has CPM. He was recovering in the hospital from alcoholism. He possibly developed acute hyponatremia, and I have been doing research to find out as much possible about the differences between acute hyponatremia and chronic hyponatremia.

Hyponatremia is really an ugly beast when you try to break it down. It’s complex.

So there are different types of hyponatremia based on how it is induced. There are five different types (classifications) for hyponatremia. (who knew):

1.) Hypovalemic hyponatremia: body water, body sodium and extracellular fluid volume decrease.

2.) Euvolemic hyponatremia: Body water increases but sodium levels remain normal; to put it simply, dilution.  There is no edema but extracellular fluid increases slightly.

3.) Hypervolemic hyponatremia: Blood sodium increases, but body water increases more. There is a great increase in extracellular fluid. There is a presence of edema.

4.) Redistributive hyponatremia: This is related to the administration of mannitol, as well as with hyperglycemia. There is no change in body water or blood sodium, but there is a shift from intracellular fluid to extracellular. (Water moves from inside the cell to outside the cell.)

5.) Pseudohyponatremia: The blood sodium and body water are unchanged, but there is an abundance of lipids and proteins in the blood. Two conditions that cause this are hypertriglyceridemia and multiple myeloma.

This information was found from the following website:

http://emedicine.medscape.com/article/767624-overview

I found the above website very informative in drugs that can cause hyponatremia. It also had a lot of important regarding how it should be treated.

For instance, there is chronic hyponatremia in which a person has below normal sodium levels for more than 48 hours. Then, there is acute hyponatremia in which a person has sodium levels lower than normal for less than 24 to 48 hours.

Now the key with acute hyponatremia is the rate at which it decreases over 24 to 48 hours. For instance, a person may be diagnosed with hyponatremia on day 1 with a level of 130, but by day 2 have a level of 118, and by day 3 have a level of 110. Would this be considered chronic or acute? If sodium levels continue to fall over a period of time, a few days to a few weeks, it is considered chronic, despite where it started or how quickly it initially dropped.  It is the overall period of time it has continued to drop.

This goes back to one of my earlier posts. It is actually believed that the longer it stays low the safer it is medically for the person. What I mean by that, it is less likely for a person to go into a coma or for a person to have their brain stem herniate due to swelling directly caused by a rapid drop in sodium.

There is a fine line between low and too low and how long it should stay that low. There is a large number of studies that say if you can stabilize the hyponatremic state, it is safer long term for the person. However, at that point, it becomes critical that the person’s sodium levels be raised to normal at an extremely slow rate (.5mmol/hr or less and no more than 8 mmol/24 hours)!!!

If a person develops acute hyponatremia, their sodium levels drop extremely low the first 24 to 48 hours. This is most common in persons who drink an excessive amount of water. This is also common in infants when parents water down their formula.

What do I mean by extremely low? The levels go from 135 to 110 or lower in the first 24 to 48 hours.

In persons who have their sodium levels drop this significantly, in this short of a period, they have an extremely high risk of developing brainstem herniation and/or cerebral swelling, and/or coma. Their functions are extremely impaired very quickly.

In persons who develop chronic hyponatremia, their initial physical symptoms are far less significant than those who develop acute hyponatremia. If a person, is conscious and can talk coherently, chances are they have chronic hyponatremia. If the person is unconscious, having seizures, thinks they’re a monkey, they probably have acute hyponatremia.

The difference of how to treat these patients vary greatly based on which type of hyponatremia they have. The chronic hyponatremic patient must have their sodium levels raised slowly.  The acute hyponatremic patient must have their levels raised rapidly, at least initially.

*****The acute hyponatremic patient has a greater risk for developing brainsterm herniation, coma, and cerebral swelling, so they must have their levels raised quickly to control this swelling. As I mentioned previously, raising the sodium levels, decrease the swelling in the brain. That said, the levels can’t be raised too quickly!

It is recommended that sodium levels be increased by 4-6 mmol/L during the first 1 to 2 hours. (http://emedicine.medscape.com/article/767624-treatment#a1126). ONCE SYMPTOMS BEGIN TO IMPROVE THIS THERAPY SHOULD BE SLOWED OR CEASE!!! In other words, once a person has stabilized there should be a reduction to this high dose treatment to prevent CNS abnormalities. It is further recommended that a person should not have their levels increased more than 12 to 15 mmol during that first 24 hours. Once it has reached that point, it should not be increased further for a total of 48 hours.*****

It is extremely difficult for a medical professional to determine which type of hyponatremia you or your loved one might have. You can help them determine this by letting them know if there were any issues the day or so before you were brought to the hospital. Were you feeling sick or experiencing headaches, fatigue or cramps in the 24 to 48 hours before you made it to the hospital?

Most people experience unexplained cramps in their hands or feet as the one of the first symptoms of hyponatremia; however, they don’t realize it, so they delay seeking treatment until the symptoms progress.

IF your doctor is unable to determine what type of hyponatremia you have by your symptoms or time frame alone, then they should perform an MRI or CT scan to check for swelling in the brain or brainstem!!! Please, be aware of this crucial step. If a person shows brainstem or brain swelling, then they should be treated for acute hyponatremia. This type of injury is less common in persons who have the chronic form!

There is so much to this puzzle, and it becomes more complex the more I research. It also leaves questions. For instance, it is known that alcoholics are more likely to develop CPM; however, I have not been able to determine what type of hyponatremia alcoholics develop most often, chronic or acute. If the develop chronic, then that is in accord with the research I have found thus far because those with chronic hyponatremia have the highest risk for developing CPM. If alcoholics develop acute hyponatremia, this would go against research that says those with acute hyponatremia rarely develop CPM.

So, the more I research, the more questions I have.

Please be patient as I learn more and pass the information to you. Please leave any questions or point out any inconsistencies you might find in my posts.  No matter what, please continue to pass the information forward. It will be nearly impossible to protect people from this threat without your help.

 

Hyponatremia: Alcohol relation

It’s been a few days since I last posted. My excuses: it’s the Christmas season. My son just had his tonsils out a week ago 😦 I’ve been horribly upset because I had cognitive testing to see how CPM/EPM has impacted my cognitive abilities.

My issues are with memory, concentration, communication. Anyway to make the longest story short, the neuropsychologist that administered the test decided I was faking and/or my issues weren’t related to CPM/EPM, but were being caused by stress and fatigue, because my results on things like memory, etc were way below normal, but my tests that test intelligence show I’m way above normal.

Most of you don’t know that much about me, so you might not understand why this really ticks me off. I wasn’t faking. I’m an A type personality. It’s not in my blood to do badly on a test, definitely not on purpose!!

I was hoping to take the MCAT before this all happened. I’m still hoping to take it, but it will literally take an hour or two to write these brief posts, so it will be difficult to take something like the MCAT.  Thank God, I can catch my mistakes, but it takes me an hour or two of constantly reading and re-reading my post before I get it right.  You can’t do this on a MCAT.

I’m not the same person I was a year ago. A lot of my CPM/EPM issues have improved, but one of the areas I’m experiencing the greatest frustration is with my cognitive abilities. I have a hard time remembering simple things.

Ok, see. I’m going off on a rant. I’m already way off the topic I wanted to discuss. So, I’m going to just leave it at that. At one point, hopefully soon, I will discuss my story, how this all happened, but right now, I want to discuss how alcohol impacts blood sodium.

Some of this information might have been posted about in previous blogs, but I honestly don’t remember. So forgive me if this is a bit redundant.

I was extremely surprised to find out that you do NOT have to be an alcoholic to develop hyponatremia or CPM! You have a higher chance of developing hyponatremia even if you have just one drink.

You have a much greater chance of developing CPM if you are an alcoholic or a recovering alcoholic than a person who has just consumed one drink.

Reasons why alcoholics develop hyponatremia:

A.) They vomit due to excessive alcohol intake.

B.) hypovolaemia is decreased blood volume/ blood plasma. This occurs in alcoholics because of vomiting.  This also leads to secretion of ADH (helps control urine output) which causes a person to urinate less and leads to fluid retention.  Also, it stimulates thirst mechanisms. This leads to an increase of fluid consumption and a decrease of urine output which essentially dilutes your blood and lowers your blood sodium level.

Hypovolaemia is not the same as dehydration. Dehydration is due to excess fluid loss, but hypovolaemia is characterized by a loss of sodium..which leads to hyponatremia.

C.) Excessive consumption of large amounts of alcohol, which is low in salt, along with being malnourished. This is called “beer potomania”.

D.) The less common cause is because of SIADH, syndrome of inappropriate antidiuretic hormone secretion.  The body secretes too much ADH. This again leads to dilution of the sodium in the blood.

Ok, folks. Here’s the thing. Earlier, I posted that ADH is inhibited when you drink alcohol. Now, I’m saying it is produced in excess. I’m totally aware of this contradiction, but this is a contradiction that is published in the literature.

According to the NIH, it is inhibited. Check out this link below:

http://pubs.niaaa.nih.gov/publications/arh21-1/84.pdf

According to this published article, ADH is produced in excess. Check out this link below:

http://alcalc.oxfordjournals.org/content/35/6/612.full

SO WTF?? I really don’t know. I’m going to say that with everything in the body there has to be balance, so I’m going to say that if a person starts to consume alcohol, ADH is inhibited. However, as alcohol consumption increases, ADH begins to be released excessively because the body has dumped a large amount of nutrients, etc due to the frequent urination and possible vomiting.

Let me see if this makes a bit more sense. If you consume a large amount of fluids, you pee more (less ADH is released)…what goes in, must come out. At some point, you can push that balance to the other extreme. At some point your body realizes that you’ve lost a lot of your nutrients and fluids (have become dehydrated), so your pituitary releases large amounts of ADH to try to maintain that balance. If you continue to consume liquids, at the same time you are releasing more ADH, then you dilute the system even more quickly.

So, that’s my opinion, and I’m guessing that’s why there’s a contradiction in how ADH is impacted when you consume alcohol…but this is just my opinion. I will try to find some more clarifying information regarding it.

I hope you find it helpful or at least inspiring to do your own research.

 

Hyponatremia: Other’s personal accounts and blogs

I want to encourage you to post your experience or notify me of blogs that you might find in regards to hyponatremia.

There is not much research regarding hyponatremia, especially when you compare it to other diseases and disorders. There is far fewer studies in regards to CPM/EPM. In order to get a better idea how CPM/EPM impacts people, both short term and long term. Your personal testimony is essential in getting awarness for this cause.

Ironically, I am including the link of a research scientist who was afflicted with CPM after a bought of hyponatremia. She developed hyponatremia after running the Vermont 100.

http://www.wvmtr.org/hyponatremia.htm

Please post them or email them to me, or if you have a problem getting them to post here, let me know. I am truly a blogging novice, so I am learning as I go. If you want to share your story here, I will do everything I can to make that happen.

 

Hyponatremia: more on treatment

***I wanted to emphasize that this post contains a lot of my non professional opinion. I am not completely ignorant regarding human physiology, but I am not a medical doctor or physiology professor. I do not recommend that my opinion be used as a professional opinion, but please feel free to discuss them with your doctor or other medical professional.*****

At times, it’s hard to figure out exactly how to start the next topic. It’s kind of like when you’re about to enter a lake in which you know the water is icy cold. Do you jump in head first? Do you walk in and try to slowly adjust? Do you just change your mind altogether and wait for warmer water?

I don’t think there’s a right answer.

Writing a blog is kind of like that. It’s hard to know how to approach the next topic. I guess with time, it will become easier.

I really wanted to address how important it is once you’ve developed hyponatremia that the correction be made unbelievably slowly.

Every doctor and every nurse that cared for me in the ICU made this abundantly clear. They all had the same consensus, if we raise your sodium levels too quickly, you can die, go into a coma, develop brain damage.

I have an Aunt who is a doctor, and she emphasized the importance that it be raised slowly. It seemed like it was pretty universal that it was going to take a long time, and if they didn’t do it correctly, I could be universally screwed.

So, how is it that everyone knew how important it was, warned against its rapid correction, but it still happened?

For me, it was a series of errors. I hope these posts prevent anyone from going through the same fate.

However, I have read over the course of weeks that there is a division between some on how the treatment should progress.

There are some that believe once your sodium drops, your life is in danger and corrections need to be made to adjust your levels to a safe zone, slowly but as quickly as possible. In other words, they should raise your levels the maximum amount allowed per every 24 hours.

However, others believe that it is safer to let a person stay in a hyponatremic state, as long as the person isn’t dying. Now, that’s a tricky situation because if your sodium levels are below 135, you risk going into a coma and dying. There’s no guarantee.

The professionals that believe your levels should be maintained at the hyponatremic state, argue that the brain cells are already swollen. If you raise the sodium at this point, it is believed that rapid fluctuations in sodium cause the myelin damage in CPM/EPM, so if you keep it at a hyponatremic state for an extended period (maybe a few days), then the brain cells have time to adjust naturally.Fluid flows out of the cells, and it becomes less of an issue with demyelination when the sodium levels are corrected.

That said, there aren’t studies being done to prove or disprove these ideas. It really is kind of like playing Russian roulette, but there’s no one who wants to risk pulling that trigger with the stakes literally being a person’s life. There’s also not a lot of funding going towards animal studies for this disorder.

My idea (which has absolutely no medical validity): put the person into a medically induced coma, lower their body temperature to hypothermia for several days. Then, slowly raise the sodium, and then their body temperature.

Here’s my reasoning: the body does not respond well to rapid fluctuations of any kind.   In patients who have experienced brain trauma, the patients have been placed in medically induced comas and their body temperature has been lowered. This has had success in reducing the amount of brain damage a person experiences.

I believe these principles can be applied to brain damage that is caused by fluctuations in sodium. The body’s system all slow in a hypothermic state. This includes the reactions experienced in the brain. If you raise the sodium levels before returning the body to a normal rate, you might be able to prevent the rapid fluctuations in cells.

My ideas are probably improbable, so I would side with the professionals who recommend keeping a person in a state of hyponatremia for several days before attempting to raise their sodium levels to normal.

In order to do this in a more safe manner, I would recommend placing the person in a medically induced coma vs. hoping the person does fall into a coma because of the hyponatremia.

The studies that have shown a person who has a stabilized blood sodium level (their levels aren’t dropping lower, but aren’t rising steadily), is less likely to develop CPM/EPM.

I think this post might raise more questions than answers, but that tends to happen in medicine. I hope you will be able to make an informed decision on how your care for hyponatremia is managed.

(Addendum: This is extremely important, so I will post it again on a separate page of it’s own. It’s actually been reported in several case studies that there has been a huge success in preventing CPM/EPM, AFTER the sodium levels have been raised too QUICKLY, then the sodium levels should be dropped back to the 120 mmol/L level(hyponatremic state) within 5 days of the rapid increase. This has been shown extremely successful in preventing CPM/EPM. However, it means that you or your caregiver need to be aware of the rises in your sodium levels because your doctor might not admit to incorrectly raising the levels).

 

Back to treatments:

I hope you found the statistics in the previous post as unbelievable as I did. I really need to explore the website in depth to figure out what it all means. The information on its own is mind blowing, but the information isn’t entirely clear.

For instance, is the data for all people who are hospitalized for hyponatremia, as well as those who develop it while in the hospital for other issues. If you’ve read my previous posts, you understand that there is a high incidence for people to develop hyponatremia if they are hospitalized for longer than a day. It is also extremely common for patients who are hospitalized for burns, complications of chemotherapy, recovering from brain surgery, etc. The statistics I found did not acknowledge how comprehensive it is. If I am correct and it only includes people being hospitalized for hyponatremia on arrival, then there could be as many as 3 million people per year that develop it.

The statistics that I have at this time are only for US hospitals, and if I am correct, then close to 10% of the US populations develops hyponatremia each year. WOW!

So, I believe this makes it even more important to spread the word regarding hyponatremia and how to treat it.

That leads me back to this post.

The treatment plans that I explained in the previous post is fundamental for everyone who develops hyponatremia, but I will go into more detail about why and how specific types of disorders lead to hyponatremia.

Athletes have a high incidence of developing hyponatremia, especially those who experience long lasting, strenuous activities, like marathon runners, dancers, tri-athletes. Now, this really hits home for me. My son (15) has been playing football since he was in first grade. Every year, he goes out on the field in the unbearable summer heat and runs at least a mile per practice. The first 2 weeks is called conditioning, and they spend most of their time running.

I have always “pushed” him to drink water both before and after his practices. When the summer reaches its hottest days, my son is wearing about 5lbs in pads and running for several hours. He is always drenched in sweat.

Sweat is comprised of a considerable amount of sodium. In your bodies, effort to lower its core temperature, it produces a significant amount of sweat. After significant sweating, its not uncommon for a person to develop a thin layer of salt over their body. It’s the reason why sweat stings your eyes and why it tastes so salty.

Now, here is the danger. I’ve always pushed water and lots of it. During the hottest days of summer, the football players stop every fifteen minutes for water breaks. These players are already releasing a large amount of sodium through their sweat, and when they consume large sums of water in addition, it further dilutes the sodium in their blood!

They symptoms for hyponatremia are the same for heat stroke: nausea, vomiting, headache, passing out, cramps, fatigue, etc. Most hospitals will assume that a person has heat stroke if they have been participating in sports. They will start treatment with IV fluids, and this could kill the person rapidly. It wouldn’t be until the ER gets the patient’s electrolyte panel back before they realize the error; by that time, the IV fluids have already depleted the blood sodium levels further. This has a disasterous impact. Ultimately, it could cause death.

In one study I found, the paper urged that doctors NOT administer IV fluids, until after the blood work is reviewed. However, this creates the ultimate dilemma: if the patient actually has heat stroke, then IV fluids are essential to prevent the person from dying. If the person, has hyponatremia then the IV fluids could kill the person.

So, what does this mean? It seems it’s a 50/50 shot. The answer is in prevention! It should be made mandatory that all children participating in highschool activities be provided a sports drink, like Gatorade/Poweraide, Vitamin Water, etc. Secondly, the sports drink that’s provided should contain sodium.

If there isn’t access to sports drinks, then the person should consume salt tablets over the counter. The product I have located is Thermotabs. They are available at Drugdepot.com. I would highly recommend that athletes etc. use these, especially prior to and during intense workouts.

People have developed a caution regarding salt. They consume low salt/no salt products. I can only wonder if this is part of the reason of why hyponatremia cases continue to rise. There has been a steady increase since 1999.

In conclusion, I believe that a person should listen to their body and to quote a famous sports drink company, “Obey your thirst”. If you are thirsty, drink. If you aren’t, then don’t. However, be careful of what you drink. Don’t consume large sums of water while working out. It could kill you.

 

Hyponatremia: YOU’LL WANT TO READ THIS. Statistics.

I have been trying to locate statistics for hyponatremia for months. I have searched hundreds of websites. I have tried contacting local hospitals. FINALLY, I’ve had a breakthrough, and it’s a HUGE breakthrough.

There is a research tool funded by the government and due to the Freedom of Information Act hospitals must post their annual diagnostic statistics.

I’m a novice at researching facts on this website, so as I am able to locate more information, I will be certain to post it. Without further adieu, here is the golden nugget for hyponatremia.

First, let me explain that hyponatremia is coded as hyponatremia/and or Hyposmolality. The ICD-9-CM code for this is 276.1. This is the medical billing code used by doctors and hospitals to receive payment from insurance companies or medicaid/medicare. Please use the following link to confirm the diagnositc codes:

http://www.icd9data.com/2011/Volume1/240-279/270-279/276/default.htm

To make this a little more accesible, I will simply copy and paste the essential information from the above site:

2011 ICD-9-CM Diagnosis Code 276.1convert to ICD-10-CM

Hyposmolality and/or hyponatremia
  • abnormally low sodium levels in the blood; salt depletion.
  • Abnormally low blood sodium level.
  • Hypernatremia; lower than normal levels of sodium in the circulating blood.

Let me point out that the above information, contains an error. Hypernatremia is not LOWER than normal sodium levels. I believe this is simply an editing error and that the above description should read: Hyponatremia; lower than normal levels of sodium in the circulating blood. I believe this is a logical deduction considering the title of the code is a description of hyposmolality and/or hyponatremia, not hypernatremia.  I would also like to reassure you that hyposmolality is another way to describe hyponatremia.

There are further codes that describe other electrolytic disorders, like hyperkalemia (high potassium), etc.

That said, check out the following information from this link:

http://hcupnet.ahrq.gov/HCUPnet.jsp

This link has the motherload for statistics for hyponatremia, and it is astounding!

The following is taken directly from the above link:

HCUPnet provides trend information for the 17 year period: 1993-2009

Number of discharges
ICD-9-CM all-listed diagnosis code and name 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
276.1 Hyposmolality 1,035,284 1,114,170 1,100,355 1,011,519 975,253 922,323 773,223 753,530 905,743 923,473 1,005,420 1,105,431 1,239,144 1,265,353 1,362,216 1,602,836 1,735,847

YES, you are reading that right. In most years, more than a MILLION people per year are diagnosed with hyponatremia. WOW! I would also like to point out that the incidence of hyponatremia has been STEADILY increasing since 1999! I think this speaks volumes for why hyponatremia/CPM and EPM should be a household name.

The following are the maximum amount of error that’s possible each year with this diagnosis. What does that mean?

It means that the statistics, for example, in 2009 has a possible range in error of being a maximum of  1,788,305 and a minimum of
1,683,389. Each year, there is a maximum number of errors that can positively or negatively impact the reported data. The following table documents the number of possible errors.  Please feel free to post any questions associated with this.

Number of discharges – Standard Errors
ICD-9-CM all-listed diagnosis code and name 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
276.1 Hyposmolality 35,104 36,817 37,056 36,746 36,207 35,803 20,986 19,120 21,021 22,157 23,650 27,058 34,350 34,636 31,387 44,683 52,458

The next description is the how they determined the above chart regarding possible errors.

Weighted national estimates from HCUP Nationwide Inpatient Sample (NIS), Agency for Healthcare Research and Quality (AHRQ), based on data collected by individual States and provided to AHRQ by the States. Statistics based on estimates with a relative standard error (standard error / weighted estimate) greater than 0.30 or with standard error = 0 in the nationwide statistics (NIS, NEDS, and KID) are not reliable. These statistics are suppressed and are designated with an asterisk (*). The estimates of standard errors in HCUPnet were calculated using SUDAAN software. These estimates may differ slightly if other software packages are used to calculate variances.

Bottom Line:

There are an extremely large number of people being hospitalized each year for hyponatremia. This number is on the rise, and it is of the utmost importance to spread the facts about hyponatremia, the proper treatment and what occurs if it is not treated properly (CPM/EPM).

Please continue to read this blog. Forward the information to friends and family. Post links to your FaceBook pages, Twitter, etc. Please, help spread the word and save people’s lives.

 

Hyponatremia: treatments

This topic might take several days to compose because there is so so much to discuss regarding this.

I’m sure it’s not surprising to most that each type of cause of low sodium is unique, so the treatments will be unique as well. This is true to an extent, but I have a few universal key facts for everyone who is being treated for low sodium.

Please take note of these KEY Treatment facts, and then look at your specific cause of low sodium for additional treatment information.

1.) It is absolutely imperative that you limit your intake of water once you develop low sodium. Increasing your water levels while you are experiencing low blood sodium will further DECREASE/DILUTE your blood sodium. If your sodium levels increase with just fluid restriction, then there should be no further treatment needed.

I believe it is absolutely necessary to listen to your body while being treated for low sodium, so if you are on a fluid restriction, but at some point start to develop extreme thirst (not dry mouth but thirst), then you should listen to your body and consume more fluids. However, in some cases, there is a psychological disorder that makes a person drink extreme amounts of water, so in some cases, this would not be logical.

Fluid restrictions are common when being treated for hyponatremia, but my suggestion is to listen to your body if you develop thirst is  my opinion. It’s not a medical fact or medical suggestion. You will probably find the medical community does not agree.

Let me stress that fluids that do not contain sodium are extremely dangerous during this period, but consuming higher sodium fluids are fine, i.e. chicken or beef broths.

My opinion:

Might I even suggest diluting something like a fleet laxative. Fleet oral laxatives work because they are extremely high in sodium. Your body dumps EXCESS sodium through urine and the GI tract, and where sodium goes water follows. Typically, this causes the liquid stools that GI doctors require for a colonoscopy. However, if your body needs sodium, it will absorb the sodium through the GI tract and release the sodium it doesn’t need.

I have no medical research to back up my idea that using fleet or other sodium solutions will increase your sodium levels more effectively than IV saline solution. I will try to research this more and contact my GI doctors for their opinions in the future.

2.) IV saline of 3% is the typical starting treatment for hyponatremia. This is typically done in conjunction with water restriction. However, in some medical circles, it is believed that ONLY fluid restriction should be used. This is dependent upon the type of hyponatremia you have, as well as your starting sodium.

3.) A person’s blood sodium levels should be evaluated every 2 to 4 hours to prevent a rapid rise in sodium. (This should be done regardless of your starting sodium levels).

A rapid in rise of blood sodium levels can be catastrophic and lead to CPM/EPM, or death. I will discuss this topic in the future.

4.) If a person’s sodium level stabilizes while being treated with an IV saline solution of 3%,  no further treatment should be administered. In this case, stabilizing means that the levels do not decrease further, but remains the same or increases slightly over a 24 hour period.

5.) Prescription drugs like Samsca (tolvaptan) should NOT be used at the same time IV saline solutions are being administered. It is ABSOLUTELY dangerous to use IV saline solutions and most prescription drugs TOGETHER to treat hyponatremia. If a person you know or you are being treated for hyponatremia, be certain that you check the medications you are being given. The contradictions for these medications are typically found online.

A few of the oral prescription drugs used to treat hyponatremia:

Samsca Oral

sodium chloride Oral

tolvaptan Oral

5.) A 6 to 8 mmol/L increase in blood sodium concentration per every 24 hour period is the MOST a person’s sodium should be raised during a 24 hour period. ANYTHING greater than 6 to 8 mmol/L in a 24 hour consecutive frame is considered DANGEROUS!!!  Let me stress that it is a 24 hour consecutive time frame that needs to be considered. Do not consider a CALENDAR day as the 24 hour period. (Some studies suggested that an 10 to 12 mmol/L increase was acceptable, but most doctors now agree that 6 to 8 is the highest it should rise.) Let me stress: THE MOST your sodium level should rise is 6 to 8 mmol/L in a 24 hour period. Consider this point the RED zone. That means it is at this point that you are on the borderline of causing brain injury. The goal should be NOT to reach this RED zone because once your surpass these levels (which can be VERY difficult to control), you will be at high risk for brain injury.

Let me define how to classify a 24 hour period; if your levels were checked between 12 am, Jan 1st and 12 am Jan 2nd and your levels were only raised 5mmol/L, that is fine, but between 2pm Jan. 1st and Jan 2nd, your levels were raised 10 mmol/L, your levels were raised TOO much for a 24 hour consecutive period. A rapid correction of blood sodium levels can cause brain damage and/or death.

 I cannot think of any additional absolutes for the treatment for hyponatremia. These are the key treatment facts. 

Please be on guard if you are being treated for this condition. I will post tomorrow more on what I think are important ideas on the treatments for hyponatremia that are opinion based, but I will include  additional facts regarding specific treatments for the different causes of hyponatremia.

Please, pass this information forward. It might save your life or someone else’s.

 

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