Hyponatremia and Central Pontine Myelinolysis

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 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.