Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “January, 2012”

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.

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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.

Doctors:

I was finished with all of my pre-med classes and was seated to take the MCAT in June of 2011. That was before being told that I was going to have to have surgery for Cushing’s Disease.

I was actually relieved to find out that I had Cushing’s Disease because suddenly everything  made sense. The years of illness made sense.

Doctors try to find an answer that fits everything, but I kept having problems that didn’t fit the diagnosis. It started with endometriosis (and of course irritable bowel and fibromyalgia), but that didn’t make sense. Yes, I had pain with my menses, and I had heavy periods, but endometriosis didn’t really explain weight gain, fatigue, low grade fevers, hair loss, aches and pains, etc. I would also have crippling abdominal pain, nausea, vomiting, and blood in my stools.

I will try not to go into all the details, but over the years, I also developed hypertension. They found high uroporphyrins in my urine and blood, so my doctors believed I had acute intermittent porphyria.

Antiphospholipid syndrome explained the several miscarriage, and my elevations in cardiolipins, etc.

Bottom line, Cushing’s Disease explained everything (elevated uroporphyrins and autoimmune issues), so I was excited. I wouldn’t be cured from the autoimmune issues, but removing the pituitary tumor would take care of the Cushing’s disease, and I would feel better and there would be nothing stopping me from becoming a doctor.

I’m still hopeful that I will get into med school, but I’ve had another set back. After the pituitary surgery, I developed hyponatremia. The hospital corrected my sodium levels too quickly and that led to EPM. That was six months ago.

I’m better than where I was, but I’m a long way from MCAT ready. The MCAT is a thinking test. I not only can’t member what I need to remember, but I can’t think as quickly as I once did.

Because I’ve seen many sides of health care (that of the doctors as well as a patient), I feel conflicted regarding what I’ve been through. Life is not black and white.

I am extremely angry at the doctor’s who treated me, but I also feel an understanding about what’s happened.

I think people expect their doctors to be perfect. They get paid a huge amount of money to know what they are doing. Is it too much to expect that they do?

If you every look at a physician’s desk reference, it’s about 8 inches thick, in a font that’s similar to that used in a Bible, on paper that’s practically see through. It’s been said that about 5000 new diseases are discovered EVERY year.

If that’s the case then why do we feel that a single doctor will know and understand every disease and disorder that we might have?

Is it too much to expect?

That said, hyponatremia is a COMMON metabolic disorder. It is the MOST common metabolic disorder. Over 1.5 million people are treated for hyponatremia each year!

So now I feel caught in the middle. Yes, I do expect doctors to know more than the common person. They get paid to know it. At the same time, how will I feel if I’m on the other side of the clipboard, trying to figure out what this person’s tapestry of symptoms means?

Yes, life is not black or white.

Okay, now let me give you some more important information. Let me direct you to a group of doctors that are supposed to know more than most doctors in regards to CPM/EPM. Keep in mind, as I’ve stated before, there aren’t any “true” experts in the field because CPM/EPM is really rare, but these are doctors that have at least heard of it.

My neurologist, Dr. Noor Pirzada. I was referred to him by Jeffrey Amitin. I had the expectation that Dr. Pirzada had treated several patients with CPM/EPM. However, when I’ve questioned him regarding how many patients he’s treated, he won’t give me a direct answer, but will tell me that it’s very rare. I don’t know what that means exactly, but he’s understanding.

Dr. Noor Pirzada, University of Toledo Medical Center,

3120 Glendale Ave
Ruppert Health Center
Suite 1500 Door F
Toledo Ohio 43614
Phone: 419-383-3760
Fax: 419-383-3364
The following names come from GARD. They may or may not treat patients, but they have at least heard of it.
  • Dr. Richard Sterns: University of Rochester School of Medicine, Rochester, NY. (He is an expert in the treatment of hyponatremia and knows a lot about CPM/EPM.
  • Dr. Amyn Rojiani: University of South Florida, Tampa, FL.
  • Dr. Yeong-Hau Lien: University of Arizona, Tucson, AX

Yeah, I know, that list is really disappointing. If you’ve been treated by an “expert” in CPM/EPM, post it in the comments section.

I will also update it with doctors that I am in the process of contacting. Right now, I have contacted a handful of doctors that have written research papers on CPM/EPM, but I haven’t gotten a lot of information from them as of yet.

Thank you for putting up with my rant on doctors, and I hope this information helps a little bit.

 

Discharged:

I think one of the hardest moments I faced after developing CPM/EPM was being discharged from the hospital. I literally had a bit of a break down. I don’t think my reaction was abnormal.

I was already beginning to see some improvements during the week I was hospitalized for CPM/EPM. At the same time, I was still really screwed up. I was NOT anywhere close back to my formal self.

I had only had the injury for about 10 days. I was aware from the very little access to information online that I would not be considered out of danger for at least 3 weeks from the date of injury. Some research suggests that you can be at risk for dying for up to 12 weeks. There’s just not enough research and answers fluctuate.

Everyday I woke up in the hospital I felt a sense of relief, but every time I went to sleep I felt anxiety. Would this be the time that I would not wake up or wake up and not be able to move?

At the same time, the doctors were monitoring my symptoms intently, but they were truly unable to do anything but watch me.

They were afraid to give me things like pain medications or even something as benign as glucose IV fluids because they were concerned with how they would impact my neurological functions.

Despite their not doing much of anything but observing, I felt a comfort in knowing I was there. If something bad happened, I knew that something could be done immediately.

I was also extremely dismayed at leaving because I was NOT normal. At that point in time, my list of neurological issues was extensive. I had problems losing my balance, walking into walls, developing hypotension when I was standing and hypertension when I was sitting. How was I going to get back to a “normal” life if I couldn’t even stand up for long periods of time without getting super sick?

One of my biggest issues at that time was my speech problems. It was extremely obvious, and I have a phone sales position. How could I perform my job if I couldn’t speak properly?

I’m sure if you are reading this, you are experiencing something similar to this or deficits that may be greater. It is terrifying. There aren’t any “real” answers. There is a lot of unknown.

This will probably lead to anxiety and depression when you are released from your hospital or hospice. It’s like losing an anchor in the middle of a hurricane.

What should you expect?

First, make a list of your questions. Is the hospital or rehabilitation center setting up ongoing occupational, speech, and physical therapy at home? Who will be in charge of your ongoing treatment? Will it be your general practitioner? Will it be a neurologist from the hospital who was treating you? Who should you consult regarding your work notes, disability claims, insurance questions? What will your insurance company cover? What will your co-pays be? Will you need 24 hour support, live in aid or daily assisted living? What type of medications will you need and those side effects? Is there any doctor associated with the hospital that has experience with CPM/EPM? Can you drive? Are there any specific physical limitations that should be avoided? Is there a support group they know of (you probably won’t find one for cpm/epm, but you might find one for neurological disorders or brain injuries?

Is there a source for your care givers? For instance, you may experience things like paranoia, dementia, irritability. These are normal psychological effects of it. If you become unstable, who should they call? If your symptoms become worse, what should they do?

If you were employed before your injury, you need to get in touch with your human resources department. If you are a caregiver of someone who has CPM/EPM, you will need to contact their employer to let them know what the situation is and find out about their disability policies. In most cases, you can fill out FMLA forms to help protect their/your job. If you are a caregiver, you will want to find out about becoming power of attorney.

In most cases, you were not anticipating this to occur, and it is a huge surprise. You might have been perfectly healthy previous to this injury, but now you’re facing the chance of having life long injuries. You probably did not have things like your living will, durable power of attorney, health care power of attorney.

IF you are reading this as a precaution, and you’ve never developed hyponatremia or your CPM/EPM, then I recommend taking the initiative and getting these basic legal affairs taken care of. Let’s look at the facts, you may never develop CPM or EPM, but you do have a fair risk of developing hyponatremia.

Further, you are going to die at some point, whether it’s a car accident in 3 weeks or a heart attack tomorrow. It’s inevitable. You need to be certain that you have everything ready for your family and your friends.

At the very least, you need to discuss your plans with your family and friends. It’s never a comfortable subject. No one wants to face the reality of losing someone they love, but it’s worse to leave the heavy burden to your family and friends when they are suffering from the pain of not having you in their life.

If you need help, most lawyers will consult with you free. There are legal forms that are available online. At the very least, you can create a document at home, typed or written that express your wishes.  You simply take that letter to a notary (usually a bank will have a notary) and sign and date it in front of them. It has to be signed and dated in front of the notary to be valid.

This is just a stepping stone on what to do. I hope this helps, and if you think of any additional advice to add, please feel free to do so.

Take care!

 

Getting a diagnosis:

Please bear with me tonight, I had my wisdom teeth removed today, so I’m taking pain killers. Let’s just say, I’m a bit off my game.

Most people who are treated for hyponatremia are already in the hospital for a secondary issue, like burns or liver transplants, etc. I believe persons who are being treated for other conditions are at a higher risk for a delay in diagnosis for hyponatremia. This would make it most likely for them to develop chronic hyponatremia (chronic, meaning longer than 48 hours, up to a few weeks). This will put them at higher risk for developing CPM/EPM.

That said, it is harder to diagnose these individuals with CPM/EPM because they are already ill. Most will be experiencing issues with nausea, headaches, vomiting, etc. They may even already be in a coma, so the symptoms will be attributed to other issues.

If you’re already in the hospital with a major disease, injury, or disorder and then develop hyponatremia followed by CPM/EPM, you will probably have significant damage. To be honest, you probably won’t make it.

If you do live through those major health issues, you will be lucky to get a diagnosis of CPM/EPM. Here’s why: in most cases, if you are already in the hospital for something like severe burns, to help manage the pain, the hospital will sometimes put you into a medically induced coma. If you are in a coma, it is difficult for the hospital to know if you are experiencing neurological issues.

When they awaken you from the coma, they might deduce that the issues you are having are due to the induced coma. If you have cancer, they might believe the issues (nausea, headache, balance issues) are due to the cancer especially if you have something like a brain tumor and especially if you are having chemotherapy treatments.

Depending on your doctor’s expertise and the symptoms you present with, you may not get a diagnosis of CPM/EPM right away.

CPM/EPM can appear on a MRI as early as two to three days; however, it may not appear on a MRI for up to two to four weeks. In less severe cases of CPM/EPM, your symptoms can begin to improve within a week after the injury. This makes it even more difficult to detect because doctors are even more likely to attribute the symptoms to the primary reason for hospitalization, so they don’t look for it.

To complicate things further, most individuals will begin to experience a disappearance of the lesions on the MRI as early as 4 to 6 weeks. In most cases, the lesions can completely disappear in 4 to 6 months. Despite the healing of the lesions, symptoms may or may not approve accordingly. In most research papers that I read, most lesions will disappear but a person will have ongoing issues with dystonia, speech issues, cognitive and learning issues, tremors, etc. Generally, the symptoms that remain after the lesions have disappeared are related to motor functions and cognitive functions. There can also be on going issues with behavioral and psychological deficits.

This leads to a misdiagnosis, or you may not ever get a diagnosis.

So, what do you do?

Get your medical records. Look for hyponatremia (keep in mind that CPM/EPM does not always occur with hyponatremia), but it is most common with it.

You can also request a MRI. A really good neurologist and/or radiologist can see something called sequelae. Basically, this is, for lack for better words, scar tissue. It is usually very difficult to see in our current scans. So, if you really believe CPM/EPM is responsible for your issues, you might have to see several neurologists or radiologists.

Some doctors will diagnose you based on symptoms and your clinical history alone.

For arguments sake, let’s say you really don’t have CPM/EPM. If you have symptoms that aren’t typical for the disorders or diseases that you experienced, you should pursue getting answers anyway.

I’ve been a patient for more than 8 years. I’ve been diagnosed with other health issues/ disorders before I was injured from CPM/EPM. From past experience, it is common for doctors to attribute any new symptoms that you may have to the previous diagnosis. Basically, they think that since you have one disease or disorder that you will not be unlucky enough to develop another. They might also attribute these new symptoms to being a psychological issue. They will state that this new issue is due to the stress of having a previous illness.

Follow your gut instinct! Only you know what you are going through. If you keep getting the run around from one doctor, find a new one…BUT whatever you do, do NOT tell this new doctor that he is your second opinion. Trust me, I know. It is hard to find a doctor who will go against what another doctor has diagnosed.

It shouldn’t be that way, but it is. You may be very blessed and have a doctor whom you do trust, if that’s the case, level with them.  If he’s a great doctor, he will look into new possibilities.

In the end, you should find a diagnosis that answers ALL the questions, fits ALL the symptoms. In your situation, look at the symptoms of your initial disorder/disease, and check out CPM/EPM symptoms. You have to a detective. You also have to be your own advocate.

If you’re able, look for information online. We are in a fantastic technological age where information is just a few key strokes away. Take advantage of it, but try not to be consumed by it. Easier said than done, I know.

I was trying to get into med school before I developed CPM/EPM. It happens to the best of us that the more we read about disorders or diseases, you start to believe you have every disorder that you read about.

To keep this from happening, I would recommend with coming up with your list of symptoms and the dates that they began BEFORE you start doing any research. Take your time in coming up with this list. It’s easy to forget little things, and you don’t want to begin adding things after you start researching because you’ll end up in the same position where you start thinking you have every disease imaginable.

Things to look for on the MRI. Previously, I mentioned that T1 and T2 MRI‘s showed high signal intensity; however, only T2 shows high signal intensity, but T1 shows low signal intensity. This means in T2 MR images, the areas of damage are bright, and in T1 the same areas of damage are darker than surrounding areas. This information might come in handy when you get your medical records. If you review your radiology reports, you might find these things defined, and this is what it means.

Sequelae: an abnormal condition that results from a previous injury or disease. If you are reading it on your radiology report, then it means that there was a previous injury that has caused an abnormality on your MRI.

An EEG may or may not show abnormalities. If there are abnormalities, than it is usually present in theta and delta activity. Usually these abnormalities will also improve in the following months.

J Neurol Neurosurg Psychiatry1998;65:119-121 doi:10.1136/jnnp.65.1.1, Parkinsonism and dystonia in central pontine and extrapontine myelinolysis: 

…….bilateral hyperintense areas within the putamen, caput nuclei caudati, and lateral thalamus (figure). Subsequent control images made up to six months after the onset of the condition showed a marked decrease of these signal intensities. An EEG disclosed diffuse slow background activity and bilateral theta and delta activity which improved gradually during the subsequent months.

Next article:J Neurol Neurosurg Psychiatry2011;82:326-331 doi:10.1136/jnnp.2009.201764 Clinical and functional outcome and factors predicting prognosis in osmotic demyelination syndrome (central pontine and/or extrapontine myelinolysis) in 25 patients

The higher incidence of extrapontine lesions in recent series and ours may be due to the availability of better-quality MRI picking up subtle lesions. Also, the extent of involvement in the imaging depends on the interval at which imaging is done after the onset of ODS.2 21 The MRI done early (1–6 days) in six (24%) of our patients failed to show any abnormality. However, in all these patients, a repeat MRI done 1–2 weeks later showed positive findings. Therefore, we concur with the other authors that a repeat MRI after 1–2 weeks in all clinically suspected cases of ODS is very helpful.2 Also, diffusion MRI can pick up early lesions when conventional MRI is still negative.

CT was done in seven cases and was positive in two (28.5%). All had MRI-detectable lesions (n=23). Six required repeat MRI as the initial one did not reveal any lesion. The mean interval between the first and repeat imaging was 10.6 days in these patients (range 9–17 days). There were T1W hypointense and T2W and FLAIR sequence hyperintense lesions involving pons (76%), basal ganglia (76%) and thalamus (20%) (figures 1 and 2). Contrast enhancement was not seen in any of the cases. Diffusion-weighted imaging (n=3) showed a restricted diffusion in two cases. The radiological findings are summarised in table 3.

Figure 1

Okay, so since I’ve gone on a bit. Please trust me when I say, that this information comes up in pretty much every research paper. This is also a few more types of imaging that have been used to detect CPM/EPM that I wasn’t aware of previously. I do not know anything about what this means, so I will have to get back to you when I know for sure what it refers to, but TcTrodat-1 and 1-IBZM spect images show higher correlations with the severity of clinical features in EPM than MRI alone. (Annals of Nuclear Medicine 2009 23, 409-412.

In summary: MRI is the best method to diagnose CPM/EPM. It usually may not show the lesions until 1 to 4 weeks after injury. The CT scan is the worst at detecting damage. The spect images mentioned above might be a better way showing the damage that correlates to symptoms. The MRI signals usually detect the injury for a few months, but then shows improvements that do not necessarily correlate with the severity in symptoms. This is also true for EEG abnormalities. You may have an abnormal EEG, but improvements usually show within months but do not necessarily correlate to the symptoms you experience. Finally, trust your symptoms. If you had issues with hyponatremia while being hospitalized for a different condition, be sure to access your medical records and consult with one or more neurologists or radiologists to try to determine whether or not CPM/EPM is responsible for issues that seem unrelated to your original conditions.

I’m sorry for the length of this post. I hope it doesn’t ramble too much and that you find the information useful.

Many blessings!

 

UPDATE: 04/20/12….I just wanted to leave a little bit more information regarding imaging. I mentioned above the FLAIR imaging, and I wanted to explain exactly what that is.

Fluid-attenuated inversion recovery (FLAIR) Magnetic Resonance images stands for FLAIR MRI. It can be used in a two dimensional form or 3D form.  This type of imaging can produce an image without showing the fluid in the brain. This type of imaging is used to detect lesions in the brain, and is very useful in diagnosing demyelinating lesions. It is supposed to be a great way to determine lesions caused by MS. I do not have a lot of information regarding CPM/EPM lesions, but it is being used in diagnosing it along with standard MRI’s.

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.

Medical Definitions for Symptoms:

(These are not in alphabetical order at this time, but I will do that soon 😉

Aphasia: is a communication disorder usually caused by stroke or other brain injury. It can effect speaking, understanding language, writing, and reading. (http://www.aphasia.org/)

Choreoathetosis:  involuntary movements in combination with migrating muscle contractions and twisting and writhing.

Dystonia: neurological disorder involving sustained muscle contractions which cause twisting and repetitive movements and abnormal postures.

There are different forms of dystonia:

                      Focal dystonia- the contractions are not large muscle groups by mostly the muscles of the hands and feet.

                      Action dystonia- painful muscle contractions with movements (ie..your hands cramp when you type or your legs cramp when you walk.

Dysphagia: difficulty swallowing, it can be foods or liquids

Spastic Quadirparesis: an entire body paralysis (ie locked in syndrome)

Micrographia: medical term for abnormally smaller, cramped handwriting due to neurological issues

Bradykinesia: slowness of movement, usually associated with Parkinson’s disease. It is apparent with repetitive movements and can fluctuate. It can also impact your speech.

Parkinsonism: Slowness of movement (bradykinesia), tremors, and rigidity. They’re three primary symptoms associated with Parkinson’s disease, but can be associated with other neurological disorders, like EPM.

Hypophonic: a weak and breathy voice due to lack of coordination associated with neurological issues, most commonly Parkinson’s Disease, also found in EPM.

CPM/EPM: Count your blessings:

I realize that if you are reading this, then you have most likely been impacted by hyponatremia and/or CPM/EPM. For that, I am sorry. With the information I have found in the months since I was injured from it, I am absolutely certain that this can be avoided!

If you haven’t been impacted by it yet, thank you for being proactive in learning about it. As you age, you are more at risk for it, and it becomes more likely that you will have a more difficult time recovering from it. To put it bluntly, you are at an extremely high risk of perishing from it, the older you are.

I guess that’s true of everything, but if you have knowledge of what this is and how it should be prevented you have a better chance of surviving.

One day, I hope that awareness will become so universal that hyponatremia and CPM/EPM will be prevented from ever happening. Please make this one of your missions too. It takes just a few seconds to hit the “like” button or to send this link to your friends or family members. Getting the word out is what will save lives!

So, if you have been impacted by hyponatremia, I hope you aren’t facing CPM/EPM. In my previous posts, I listed the symptoms that impact most people who are injured.

I also touched briefly on the widely unknown measures that can be used to reverse the consequences of having your sodium levels raised too quickly and the widely unknown treatment options.

If you are not one of the ones fortunate to escape the devastating harm of the brain injury, I want to stress to you; you are not alone! As long as I’m able, I will try to help you.

I find one of the hardest things to do when you’ve been inflicted with CPM/EPM is to count your blessings. When I was diagnosed with it, I felt vindicated. I had returned to the hospital that had treated me 3 times to try to get help. I won’t go into great detail here regarding my story, but I was basically looked at as if I was on fire. I was turned away from the ER twice with the diagnosis of a migraine, and the third time I went back to the same hospital (with significant impairment), they wouldn’t do the MRI that I needed and requested. Instead, they wanted to admit me to the  hospital for further observation.

As I mentioned previously, CPM/EPM can be life threatening. I was demonstrating obvious problems, something akin to having a stroke, and they weren’t taking immediate action. I decided to go to a different hospital at that point. I hoped the bigger more prestigious hospital would be more equipped to handling the situation, as well since they didn’t cause the problem, so they would be more likely to diagnosis a problem they didn’t create. I was right.

When I found that I had CPM/EPM, I was terrified. When I had started to develop my first symptoms, swallowing issues and speech problems, I knew what was wrong, but I didn’t know very much about it at all.

I had just read the generic stuff online, and it was pretty scary. It said that I could go into a coma, die, or develop locked in syndrome. Once I knew I had EPM, each day that I woke up, I felt more and more grateful.

I’m alive and I’m not a vegetable. At the same time, I was absolutely terrified because these new changes were significant.

How would I be able to survive as this new me?

My doctors and my friends and family were incredibly optimistic, but as they saw improvements, I saw the differences, the changes, the difficulties.

I have to say with 110% conviction, IT IS EASIER FOR THEM TO SAY IT!

You are LIVING it. That said, I AM living with it too, and I can tell you with absolute certainty, unless you die, you will see improvements. It’s a matter of degree.

I can not guarantee that if you were in a coma for 3 weeks or suffered from locked in syndrome for 6 weeks, that you will ever be running marathons or even doing basic math in your head, but you are here and you are important and you can expect improvements.

Give yourself time, and continue to do what you’re doing, making an effort to get yourself help and to find support. Contact me if you need me.

There are online support groups that can help you. You can find people, normal people, struggling every day with the same problems you are, and there is nothing better than to know you are not alone.

Your friends and family probably don’t get it, and frankly, most of them don’t want to hear about it. Don’t judge them for that. In most cases, they just don’t know what to do or say. Seriously, before you became ill, would you act any differently?

That said, I know a few people who have it. I consider you part of my family if you have it. You have a private pass to my club. 🙂 And I will do anything I can to help you.

So, now you have one more  blessing to add to your list.

Here’s the thing, if you do have this, and you are like me. You’ll feel better knowing that there is at least one more person out there who has it. You aren’t completely alone, but that only goes so far. It doesn’t take the sting out of not knowing how YOU will be impacted by CPM/EPM.

Frankly, it’s depressing. It’s scary. It’s hard. I was diagnosed six months ago, and I’m still having issues. TRUST ME, my symptoms have improved greatly from where I was, but not being 100% back to my former self is difficult.

Trust me, there are days when I do cry. There are days when I want to go back to the hospital that treated me, and I want to SCREAM at the doctors.

I’m giving you permission to be angry, upset, cry, yell. It’s a benefit of being a member of my club, BUT what I refuse to let you do, is give up. You are not allowed to give up or give in, NO MATTER, how desperately you want to.

Further more, if you ever feel the urge that you just can’t handle it another day. You’ve had all the twitches and stutters you can take, I want you to promise me that you will get help!

You have to promise me that if one day becomes just too difficult to take that you will go to an ER, call a friend, and/or click on the link below:

http://www.ulifeline.org/main/page/53/SuicidePrevention?gclid=CI6dzPXYya0CFcvCKgod-F6sIg

You can actually seek help via online chat:

http://www.preventsuicide.us/hopeline-new/aliveim/index.html

You can always reach out to me as well. I’m here for you, and I KNOW how it feels.

With my next post, I promise to bring more information regarding CPM/EPM…like maybe how the symptoms can impact you or the doctors that you can reach for more help, experts if you can consider them that (they have at least heard of it).

Many blessings!

Treatments: NEW INFORMATION

Ok folks, I’m really hoping to keep this post short and sweet.

My last post had information regarding treatments for CPM/EPM. Guess what, I have found new information suggesting there are treatment options for CPM/EPM.

I was shocked to discover that once your sodium levels have been corrected too quickly, you are not destined to CPM/EPM. You doctor has the ability to PREVENT CPM/EPM AFTER your levels have been corrected too quickly. Research has shown that there is an approximate 5 DAY window in which your doctors can LOWER your sodium levels back to abnormal, approximately 120. If they do this after your levels were raised too quickly, within 5 days, CPM/EPM can be avoided!!!

The above information was discussed as early as 2005 and 2007: http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf and again in :  http://www.ccjm.org/content/74/5/377.full.pdf and again in:

This type of treatment has been extremely successful in preventing CPM/EPM. I DO NOT UNDERSTAND WHY DOCTORS DON’T KNOW THIS or DO NOT PRACTICE THIS. I’m really at a loss over why my doctors, who admitted to me that they raised my levels too quickly, did not have the knowledge to do this. It turns my stomach to think that this might not be COMMON knowledge among doctors. WOW.

Since this might not be common knowledge among doctors, PLEASE take it upon yourself to inform them if you are in this situation. You might be able to prevent your brain damage after all!

That said, I also found additional treatment options! I went to one of the major teaching hospitals in this country for treatment of my CPM/EPM, and they DID NOT offer this! They told me that there were NO TREATMENT OPTIONS. Imagine my shock and dismay at finding research to the contrary. It really makes me sick to my stomach to think not only could this have been COMPLETELY PREVENTED, it could have been TREATED. 😦

That said, these treatments have not been clinically proven to work. There haven’t been any control group studies.

I mean, here’s the thing, CPM/EPM is uncommon. It’s not like heart disease or cancer where people can enroll in studies to test therapies, so your doctor may or may not know about these treatments. If they know about them, they are not going to suggest you forgo the treatment since it hasn’t been studied in a controlled study. They will suggest to do the treatment. If you don’t do the treatment, you have an approximate 67%  probability of having some type of neurological deficit for the rest of your life.

The research studies did not report ANY side effects (I’m sure there are), so proceeding with these unstudied/ unproven treatments would be the best thing. Furthermore, all of the case studies that were listed had a 100% recovery when given the treatments.

In other words, there needs to be more research regarding CPM/EPM, but in the mean time, if you are facing permanent neurological issues, try these treatments that have shown effective in treating the brain damage. What do you have to lose???!

Here are the additional treatments that I did not mention previously:

1.) plasmaphoresis

2.) TRH  (thyrotropin releasing hormone)

3.) immunoglobulins

4.) methylprednisolone (the cleveland clinic journal also listed dexamethasone, but it did not provide information regarding its effectiveness.)

This information comes from :http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/104/6/56.pdf

It has also been reported in several additional journals.

There are also natural remedies that have been recommended. I will post more information on possible natural treatments as well.

Please feel free to post any information you have in regards to treatments you might have been given for CPM/EPM.

Thank you for reading!

CPM: Treatments

I hope you are doing well. It has been several days since I posted last. I could list several crazy reasons: I was in the hospital having a sleep study. They didn’t have WiFi at the hospital, so I couldn’t use my laptop. Tom was sick. However, honestly, the biggest reason is I didn’t know how to continue with this topic.

It might seem obvious that it is easy for me to get distracted and get off topic. (I hope not). I think my last post on CPM/EPM might have demonstrated this a little more than normal.

I covered a lot of material in my last post. Several of the topics I mentioned, I feel, could be made in to separate posts. I might try to do this at a later time, which means that I might have some topics come up more than once. Please be patient.

Okay, so CPM/EPM treatments:

There really aren’t any treatments, as far as a cure. You will find this information on any resource regarding CPM. For your convince, I’ve included this quote from, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001779/.

There is no known cure for central pontine myelinolysis. Treatment is focused on relieving symptoms.

The following quote is from a study that suggests the following has been used in the treatment of it:

Case reports have suggested that steroids, intravenous immunoglobulin, and thyrotropin-releasing hormone may be helpful; however, there are no findings from a large-scale trial to support the use of these therapies.

(http://radiographics.rsna.org/content/29/3/933.full)

You may be given prescriptions for movement disorders (tremors, shakes, twitches). These are usually the same type of drugs that treat parkinsons. You may be given pain meds. You might need to see a pain management specialist. You may need anti anxiety/anti depressants. You may need medicines for insomnia or for central nervous system sleep apnea.

You may need on going physical and occupational therapy. You will probably need speech therapy.

You will probably be given anti-depressants or anti- anxiety medicines because let’s face it, the pill you are forced to swallow is unbelievably bitter.

I know that sounds a bit scary. It is. It is terrifying because the doctors have no way to know what is going to happen to you, so they won’t be able to provide you with much information.

If they’re honest with you, they will tell you that you could slip into a coma at any point in time, die, or slip into something called locked in syndrome.

In a series of 44 patients, myelinolysis
occurred after a mean of 6.3 days (range 3–11)
and resulted in a “locked-in” syndrome in 23
patients.

The above information was provided by: http://www.ccjm.org/content/74/5/377.full.pdf

Personally, I think the locked in syndrome is the most terrifying because you will lose all ability to move. It’s a FULL body paralysis. The only thing that you will be able to move is your eyes, but you’re aware of what is happening.

Some studies state that you are at risk to develop these severe health issues (coma, death or locked in syndrome) up to 12 weeks after developing CPM/EPM. Other studies, suggest that it is up to 8 weeks. Frustratingly, there is not enough information regarding CPM/EPM to know for sure.

In most cases, the hospital will keep you under observation for at least 7 days depending on how severe your symptoms are. In other cases, you may be hospitalized for up to 21 days for observation. If you go into a coma or locked in syndrome, you may be hospitalized for 4 to 12 weeks, if not longer.

Here’s the thing, if you are being released in this 7 to 21 day period, I highly recommend that you remain in contact with your doctors that were monitoring your for the CPM/EPM. If you experience ANY changes after being discharged, GO TO THE ER. Err on the side of caution with CPM/EPM. Being wrong is better than being dead.

If you’ve developed CPM/EPM, you’re already unlucky. You’ve already fallen into the less than 1% to 5% range by developing it, and NO ONE really knows what will happen, so err on the side of caution if you experience ANYTHING that gives you concern.

I want to stress that it’s important to return to the hospital that was treating you because most hospitals have never treated a patient with CPM/EPM. Most doctors have only read about it in textbooks. If your hospital treated you, then they might have experience with it.

Your life has just been changed tremendously. If you’re reading this, then you are EXTREMELY luck and terribly unfortunate at the same time. You are terribly unfortunate in developing CPM, but EXTREMELY lucky that you are even alive.

It’s going to take time to adjust to your new abilities, and your journey is just beginning.

Now, here’s the thing. No ONE knows what is going to really happen with you.

Depending on the severity of your symptoms, you may improve significantly. Some research suggests that you may recover COMPLETELY.  However, I question this on the basis that research is vague.

In long-term
follow-up of 32 survivors of the acute phase of
central pontine myelinolysis, 11 had no functional deficit, 11 had minor neurologic
deficits, and 10 had severe deficits requiring
dependent (ie, long-term) care.

The above quote comes from the article used previously. Use the ccjm.org link above to access it.

The widely used study above suggests, that 1/3 of patients will recover, a 1/3 of patients will have symptoms but live independently, and a 1/3 will need to have assisted living.

This study was vague. It didn’t say how long the patients had CPM. Was it 3 months, 6 months, 10 years after developing it?

I would like to suggest that unless you die, you are going to improve. I would like to suggest that everyone who has CPM (except for those who die) will improve to some degree to an almost normal, pre-injury state. However, it is not known if this type of improvement is absolute or to what degree you will improve.

The study quoted above, also explained that depending upon the location of the lesions, a person might experience a decline in neurological abilities. I know several persons who have it, and after a period 2 to 3 years, they begin to experience a deterioration in their neurological symptoms.

Some studies have stated that the majority of persons who have CPM, die within 5 to 10 years after developing. More than half commit suicide.

Please be aware, if you are a care giver for someone who has CPM, that more than half commit suicide.

Because of this alarming statistic, I highly recommend getting your loved one supportive psychological therapy. I also recommend that they participate in online support groups.

Brain injury support groups offer a great help.

I looked for months, and found only a handful of people who have CPM through inspire.com.  We’re kind of outcasts since there are so few of us, so we don’t really fit into any other neurological support groups.

I hope to change that at some point in time, but right now, please contact me with questions. Please post your story for others to read. Together, I hope we can prevent people from going through this horrible experience.

 

UPDATE:

It is always depressing to learn that there are TREATMENTS for CPM/EPM, and to know that I could have been fixed if I received one of these treatments! I hope and pray that if you have CPM/EPM or know of someone who has been diagnosed that you will get this information during a period when it can provide relief. The following quote comes from an abstract, so if you provide this information to the doctor, they should be able to get the treatment information:

Clin Neuropharmacol. ;23 (2):110-3  10803802  Cit:11

go to Pubmedgo to Scholargo to Googleshow EndNote Citationshow BibTex Citation

Update citations of this paper

        Neurological Department, Neurological Hospital Rosenhügel, Vienna, Austria.
Although the exact pathogenesis of central pontine myelinolysis (CPM) is unknown, correction of hyponatremia, thyreotropin releasing hormone, plasmapheresis, and corticosteroids seem to be effective. Assuming intravenous immunoglobulins (IVIG) to also be effective in CPM, 0.4 g/kg body weight/d immunoglobulins were applied to a 48-year-old patient who developed CPM with double vision, dysarthria, dysphagia, and left-sided hemiparesis 3 weeks after spontaneous normalization of hyponatremia. After 5 days of IVIG, his symptoms markedly improved, confirmed by improvement in the Norris score (42%), Frenchay score (19%), Kurtzke score (20%), Disability score (54%), vital capacity (26%), and peak torque (69%). The promising clinical effect of IVIG was assumed to be caused by the reduction of myelinotoxic substances, the development of antimyelin antibodies, and the promotion of remyelination. In conclusion, IVIG appear to be a promising therapeutic option in CPM.

CPM/EPM–What to expect:

English: Central pontine myelinolysis, MRI FLAIR

English: Central pontine myelinolysis, MRI FLAIR (Photo credit: Wikipedia)

I hope for those who are reading this, you are in good health or your loved one is.

If you developed a chronic form of hyponatremia, you are at risk for CPM if your sodium levels were raised too quickly.

Too quickly is not an absolute term. There are person’s who disagree on what “too quickly” means in regards to the treatment of hyponatremia.

Some specialists believe that too quickly is greater than 8 mmol in a 24 hour period. Other specialists would consider “too quickly” as 12 mmol in a 24 hour period.

I would recommend the safer the better no more than 8 mmol in a 24 hour period.

Bottom line, if your levels were raised more than 8 mmol in a 24 hour period, and you started to experience symptoms of CPM/EPM in a period of 3 to 10 days after your treatment for hyponatremia, it was raised “too quickly” for your system.

If it is raised more than 8 mmol in a 24 hour period, you are at risk for CPM/EPM. It doesn’t mean you will absolutely develop it.

I caution you to watch for symptoms during the next 3 to 10 days after treatment if you know your levels were raised at this rate or faster.

When you first start to develop CPM/EPM, your symptoms can vary, but will usually begin with muscle weakness, possible fatigue, headache, muscle stiffness, twitches/spasms/ jerks, trouble swallowing, issues with balance and coordination, visual issues, speech issues (stuttering, slurring or inability to form words), cognitive difficulties, issues with understanding speech, reading, and/or writing. Most importantly, a person can develop complete paralysis (locked-in syndrome), coma, and/or death.

I know, that’s enough to make your heart skip beats. Try to stay calm. This is a huge list of symptoms, and it does not mean that you will develop each one. You are at risk for them.

It is a serious condition, and you need to go to a well equipped hospital immediately, if you were recently released after receiving treatment for hyponatremia and have started to develop any of these symptoms.

It is not worth risking your life. If you are not certain if you are really experiencing these symptoms or not, but were recently treated for hyponatremia and “feel” as if something isn’t quite right, go and get it checked out.

The best way to determine if you have CPM/EPM is to have a T1 and T2 weighted MRI with contrast performed. It must be done with contrast.

***PLEASE KEEP IN MIND, THE DAMAGE ASSOCIATED WITH CPM/EPM MAY OR MAY NOT SHOW UP ON THE MRI FOR 2 TO 4 WEEKS!!! AN MRI IS NOT AN ABSOLUTE WAY TO DETECT IT. IT IS THE BEST WAY TO DETECT THE DAMAGE. ALSO, THE IMAGES CAN START TO SHOW SIGNS OF IMPROVEMENT IN 4 TO 6 WEEKS!!!****

Yeah, I know, this makes it really difficult to diagnose. By the time you begin to develop symptoms, they might not be able to see the damage on the MRI. If your doctor waits too long to take an MRI, the lesions can heal. JUST BECAUSE THE LESIONS HEAL DOES NOT MEAN THAT YOUR INJURY IMPROVES.

This can lead to a misdiagnosis of Parkinsons. Some of the longest lasting symptoms a person may experience are movement issues (tremors, jerks, spasms, etc). So, it is not uncommon for a person to be misdiagnosed as having Parkinsons.

It is also not uncommon for a person to be incorrectly diagnosed as having a stroke, especially in the elderly.

So, what does this mean?

It means that you should spread the word regarding CPM/EPM. The more the public becomes aware of CPM/EPM, the less it will occur. In this case, prevention is the best way of defeating this disorder.

It is important for people to be aware of the symptoms associated with CPM/EPM. It is important for you to obtain your medical records if you developed any of the previously mentioned symptoms after your treatment to determine how quickly your sodium was raised.

If you experienced any of the above symptoms and your sodium level was raised faster than 8 mmol in a 24 hour period, it is very possible that you developed CPM/EPM.

If you’re making this discovery long after your treatment, you will still want to contact your doctor to request an MRI.

I would highly recommend contacting a neurologist who is experienced in treating CPM/EPM. Trust me, this is easier said than done. I will post information on some of the doctors who are associated with treating CPM/EPM, but please be aware that these doctors are few and far between.

That’s because there are approximately only 2000 cases “documented” each year. Now this number is under dispute. I received this number from the website I reported in my earlier post for hyponatremia. (I will insert it again in the near future). However, my friend, Jeffrey, who was trying to develop a CPM awareness support group, received information from the National Institute of Health that this number could be as high as 30,000 to 50,000.

WOW! That’s a huge difference. How could this be possible?

Well, it’s possible because CPM/EPM is almost 100% caused by medical malpractice, and more than half of those who develop it, die. Those who develop hyponatremia and CPM/EPM are usually being treated for other disorders, such as traumatic brain injury or major burns, etc. In other words, hyponatremia is common as a secondary illness.

To protect the hospital and doctors from a malpractice lawsuits, it is believed that in cases where hyponatremia is a secondary condition that leads to CPM/EPM, the hospital and doctor will list the cause of death as being from the burn, the brain injury, cancer, etc.

For those people who do not die, it is suspected that the hospital/ doctor will tell the patient or their families that the reason they are experiencing these new physical symptoms is because they are having side effects or reactions to the illness or treatments.

Even if there are 30,000 to 50,000 people who develop CPM each year, that is not a huge number of people. Consider the reported fact that at least 1.5 to 1.7 million people develop hyponatremia each year, this means that less than 5% of those will develop CPM/EPM. The reported statistical data suggests that only .03% to .15% of those who develop hyponatremia will develop CPM/EPM. According to recent statistics (which again can be very vague), approximately 500 to 2500 were reported in 2010-2011. I believe that these statistics aren’t extremely accurate due to the drastic variations that were reported from one year to the next.

It is extremely difficult to know for sure what is accurate and what isn’t. I will try to resume the research Jeffrey was uncovering, but his unexpected death due to complications from CPM has made it difficult.

I will report it and update my blog accordingly.

So, what does this mean? YOU need to be your own advocate. You need to access your medical records and determine if your levels were raised too quickly. If you are currently in the hospital, track your sodium levels as they raise it. Be sure you question your doctors regarding your treatment. If you are conscious and able, access information regarding the medicines that you are being given.

If you were recently released from the hospital, TRACK your symptoms. If you start experiencing any subtle changes, go to a DIFFERENT hospital from where you were treated for hyponatremia and demand that they do a MRI.

I literally had to drive to a different city and a major hospital. No one believed that I could have CPM/EPM.

Be adamant. It is also helpful if you provide the new hospital with the records for your treatment.

In most cases, you won’t have issues with being admitted for the problems you are experiencing because it is painfully obvious that there is an issue. Be sure that you have a representative who can speak for you, such as a friend or family member. Make sure you have your living will and/or power of attorney up to date.

It is not uncommon for a person to experience a temporary recovery from their HYPONATREMIA symptoms once their sodium levels are corrected. It is a brief window of relief before you begin to experience different neurological symptoms from CPM/EPM.

The window, as mentioned previously, is approximately 3 to 10 days after your sodium levels have been stabilized. It is the quiet before the storm.

I would use this time frame to prepare if your levels were corrected too quickly. It’s better to be safe than sorry. Try to get as many of your affairs in order as possible, and obtain your medical records from the hospital.

Remember, there are only a very few who experience issues with CPM/EPM, but if your sodium levels were raised too quickly then you are at a greater risk for it.

This is by far, one of my longest posts to date. I understand I’ve repeated some of the information over and over again, but you will only have this opportunity once. It’s absolutely necessary for you to do everything right from the start because there is no room for errors once you start down this road.

I hope this finds you in good health, but if you are one of those being impacted by CPM/EPM, please take comfort in that you are not alone. I hope my message can help you or your family cope with this road bump.

Many blessings!

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