Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “February, 2012”

02/23/2012

So today has been pretty uneventful. I thought I was going to take a friend out for her birthday, but that will have to wait.

Last night, I didn’t make any posts. It was just one of those days. I was tired. My sinuses felt they were going to explode, so my head hurt so badly, but I managed to make it to work.

Prior to my injury, I was able to put in a 80 hour week. I was a bit nuts by the end of a 16 hour shift, but I could do it. I was able to come home, crash, and get up and do it again 8 hours later.

I was doing that WHILE I was fighting APS, endometriosis, and the un-diagnosed Cushing’s Disease.

In other words, I’m not a slacker. I work hard. I always try.

Last night, I drove home after a four hour shift, and I wondered how am I going to be able to do this? My head felt like it was going to explode. My hands were so stiff and sore. It’s hard to move my fingers, and I didn’t spend any time typing except for the time at work. I’m facing huge challenges getting through four hours of work.

How will I survive as a doctor if it’s killing me to put in a four hour shift?

Even now, my fingers ache. My wrists hurt. The stiffness is difficult to deal with, and I have to wonder what’s going to happen next? Is this going to get better?

My medical back ground says: nothing gets better with age.

My hope says: there’s 60 year old’s running marathons. This is only temporary.

I guess that’s what we are left when we start to lose our health, fear of the unknown.

A dear friend of mine reminded me when I was first injured, focus on the positive; your mind is important in the healing process.

I know he’s right. There are so many inspirational stories of people that have faced great adversity and adapted and over came their challenges.

I always find it amazing as to how many people actually do this. The following is a popular true story of a girl who, despite amazing challenges, overcame 🙂

http://www.youtube.com/watch?v=ePFKksD0XkQ&feature=related

I’m not a famous surfer, and I can’t even say I’m a famous anything..but I can relate to her message in her video.

I was put on a path to be a doctor, and after having this injury, I’ve spent a lot of time questioning if and how that will happen. I wonder if I’m going to be able to meet this goal. I wonder what my purpose is in life if it is not medicine.

I think these are the questions that a lot of people face daily in their struggles with money, health, employment, being a parent.

Those aren’t easy questions to answer, but I think if we continue to follow the path, despite obstacles that we face, we will persevere or will be directed to a new path that was meant for us.

Wouldn’t it be great if we had a crystal ball and could know with absolution what was going to happen next? Maybe it would take some of the fear and anxiety out of the surprises that we face, but I also think that it would take away the mystery.

If you are facing something that you believe you simply can’t overcome, then I encourage you to seek advice. I really recommend reaching others through online support groups.  You will find so many magnificent people who are going through if not the same thing you are, something similar.

If you are struggling with a new, unforeseen obstacle, like CPM or EPM keep your head up. Your life isn’t over. You just have a new challenge to defeat 😉 and you don’t have to do it on your own.

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Dystonia (cramping):

I’m struggling with what to approach or how to approach it.

I’ve covered in some detail how CPM/EPM is caused and what parts of the brain are effected. I could discuss in more detail what areas of the brain are known to be associated with certain symptoms. However, there is a lot of mystery still surrounding how damage to the brain will cause a specific symptom.

I could discuss in more detail how the damage occurs (pathogenesis).

I could discuss who are some doctors to reach out to (right now this list is rather short). I could discuss prognosis or go into more detail on symptoms.

There’s also the social support. For instance, if you are like me, you might not have returned to work full time or may be facing ongoing disability.

How do you get started with SSI or social security disability?

There’s the legal ramifications.

One of the problems I’ve had with this injury is making decisions, so my attention becomes fragmented.

I guess there’s no wrong way to scramble an egg, so I’ll just choose something.

Dystonia.

I don’t think I’ve gone into great detail regarding this issue, and if you’re reading this you’re in for a treat. 🙂

Dystonia is painful involuntary muscle contractions caused by a neurological (brain/spinal cord) issues.

There’s two types of classifications for dystonia: focal and generalized.

Focal dystonia generally effects a smaller, single area. For instance, you may have focal dystonia of your hand. Most of the time it is in one hand at a time. So, it’s not like both of your hands will cramp at the exact same time. It generally effects smaller muscles, like those of your face or neck.

Now, something, I did not know is that something like writer’s cramp is considered a focal dystonia.

(That said, guess what I’ve developed since having EPM. I’m getting it in my hands and feet.I know, really another symptom, but yes. It hurts when I type or write, especially for extended periods. Of course, I used to have this before I had EPM too (who hasn’t experienced writer’s cramp at some point in their life), but I never had it daily like since I’ve had EPM.)

I think the following video shows how minor these focal dystonic neurological issues might seem. In a lot of videos that you see online, dystonia seems to be extreme cramping, but that’s only in severe cases. It is in most cases, especially early on without treatment not as noticeable except for to those who are living with it. Please don’t take that to mean that this issue is not painful or abnormal.

http://www.youtube.com/watch?v=T7OpC9-Gd9g

Like everything, stress and fatigue tend to make these movement based issues worse.

I think what’s unusual with dystonia that’s caused by EPM, it tends to effect more than one area, not at a single time, but you can experience radiating cramping through out your body. So from the first week that I developed this, I would experience a pain in my hand, 30 seconds later I would have it in my foot, 30 seconds later it would be in my thumb, then my back. It was just constant circulating pain. It’s now become the cramping and stiffness as described in the video above.

In most neurological cases of dystonia, you will have a primary problem and over time you will develop the cramping in other parts of your body.

I believe dystonia also causes the swallowing issues that are associated with EPM/CPM.

Possible causes for Dystonia:

Sometimes dystonia is but one symptom of a more pervasive disorder that affects the basal ganglia, such as:

  • Parkinson’s disease
  • Huntington’s disease
  • Traumatic brain injury (ie, CPM/EPM)
  • Stroke
  • Brain tumor
  • Oxygen deprivation
  • Infections, such as tuberculosis or encephalitis
  • Reactions to certain drugs
  • Heavy metal or carbon monoxide poisoning

The above information comes from: http://www.mayoclinic.com/health/dystonia/DS00684/DSECTION=causes

Now, generalized dystonia impacts Larger muscle groups in the body, such as those of your back and abdominal wall.

Check out this video for a woman who is living with generalized dystonia:

http://www.youtube.com/watch?v=neCpWlDQhGQ&feature=related

Again, please note, that not all cases of dystonia are that extreme, and they may not be permanent distortions but like with seizures, you can have cycles to it. It does become worse with activity and movement of an afflicted part of the body.

I do recommend the Mayoclinic website that I cited above to get additional information on dystonia.

I hope this gives you an understanding as to something you might experience with CPM/EPM. Hopefully, it brings you peace. If you are experiencing what I’m experiencing with the medical profession, you might feel a little less crazy by reading this. 😉

God Bless!

 

02/21/2012

Ok, so guess what I forgot to do today? Yes. That’s right, get my lab work done. Well, to be honest, it wasn’t really a matter of forgetting, but a matter of not wanting to get up at 7:30am when the alarm went off.

Apparently, I just can’t get up after 4 hours of sleep after I’ve taken 10mg of Ambien.

I’m exhausted, and I’m ready to start my infusion of caffeine to get me through the rest of today. I swear it would be awesome if I could just get my hands on IV caffeine. I need a 24 hour slow drip.

I bet I wouldn’t be so tired if I remembered to take my thyroid medications every day. That’s just a thought.

So, as I said, I missed my 7:30am labs, but I did make it to my 12:30 halter monitor replacement. This is being done for the cardiac testing. I was having major variations in my heart rate about a month ago, and between the cardiology office not sending the request and my not being available, I’m just now having the test.

Of course, all of my irregular heart rates have subsided, and I think it’s because of the increase in my thyroid medication. I’ve been taking an increase in thyroid over the past two weeks. Since then, I’ve definitely had a decrease in cardiac episodes.

Well, it will make for a very uneventful report, which I’m sure my cardiologist will read as that I have absolutely no issues with my heart. She would be right if my hypothesis surrounding the thyroid medication is correct. It would mean that my cardiac episodes are being caused by hormone fluctuations.

It’s truly amazing how complex the human body is.

Today has been pretty mellow. I still have to go to work which I’m sure will cause the severe headache (like the one I forgot to mention last night), the mild nausea, the fatigue, the tremors, and it will cause me to focus on the fact that I’m so much slower at everything than I was previously. It’s over all depressing, but I can’t not work. You might be facing the same predicament. You’re sick and you have to work.

The most obvious issue that I had today was when I went to have my monitor replaced.

I was supposed to turn in a tracking sheet for the “events” and medications from the previous 24 hours. I SWEAR I put the paper in my purse. I SWEAR I didn’t take it out. So, I sat in the waiting room sorting through my purse over and over again. I couldn’t find the paper anywhere.

I was becoming more and more anxious over the fact that I wasn’t going to be able to turn it in. I did have one period of chest pain from the day before, but I couldn’t remember what time it was that I had it. Was it in the afternoon when I was laying down or was it when I was falling asleep at night?

I HATE not being able to remember these things. I can’t keep them straight any more. So, I decided I wouldn’t write anything on the paper. But, I couldn’t find it anyway. (She didn’t ask for it, and I didn’t remember to ask her about it, so I guess it worked out).

When I was getting ready to leave the nurse asked: so, what’s it doing out there?

My response: oh, it’s beautiful and sunny.

Nurse: So, it’s stopped raining?

Me: It’s gorgeous. It’s not raining. Have a great day.

Nurse: thanks, you too.

I left and walked to the front of the hospital. It wasn’t sunny. It was sprinkling. It was freaking cold and windy! It was extremely windy. If you told me that I was in Chicago off the lake, I would have believed you.

What was I thinking?! What alternate universe did I go through? I SWEAR, it was warm and sunny when I went into the hospital. I didn’t even bring a jacket with me. I don’t remember being cold when I went to my car, but I must have been because the thermostat read 42.

The other thing that’s been “bothering” me is that I no longer have the mental capacity to listen to the radio while I drive. I have always loved listening to music while I drive, and even more so, I love to sing to my favorite songs. Yes, I’m a car performer.

Due to my over whelming shyness around people, I really don’t sing any where but the car, but that has changed.

Listening to music while I drive has become an impossibility. It’s hard enough to concentrate to what’s going on the road with the music off now. It’s funny because my mind is becoming like a classic Seinfeld episode. I have completely random thoughts going through my mind a mile a minute with little or no connection.

I was driving down a back street on the way home, and suddenly I was looking off on the side of the road staring at a sign. When I realized what was going on, I was able to veer back into my lane. Thankfully, no one else had been in the opposite lane.

I HATE confessing my ongoing weaknesses. I’m super independent, and to think that I might have some “major” issues that need to be addressed eats at me.

My significant other will read this and he will freak out and that will lead to a confrontation.

Yes, I have officially turned in to my 85 year old grandmother. I have never felt so akin to how older people feel; the loss of attention, the fear of losing their freedom, not being able to remember where their glasses or keys are.

This brain injury has put me into the region of 65 to 85 at the age of 34, and that is terrifying.

I wish I had words of wisdom for you as I write this: Keep your chin up, it will get better or something of the like, but with absolute honesty I can’t say that.

The only thing I can say is: you aren’t alone, and don’t just “deal” with it. You need to be proactive and try to get help. I’m going to start cognitive rehabilitation in March. I’m really looking forward to it. I pray that it’s not just coping mechanisms but REAL treatments that will help to rebuild or strengthen areas.

I’ll complete the rest of this post tonight, but as for now, best wishes!

 

02/20/12

Today is one of those days. I’m actually not sure what I mean by that. It just sounded good 🙂

I’m kind of going to create this section to document some of the things that have been happening to me. I guess a journal of sorts.

It really isn’t going to contain a lot of relevant facts regarding hyponatremia, CPM/EPM, etc, but what I’ve been experiencing with it. I hope you will be able to gain some of understanding how this disorder effects your daily life.

Let me just stress, compared to some, my issues are absolutely minimal. I watched a video on You Tube yesterday of a person who has CPM, and she has the complete body paralysis. It was pretty horrific. I pray none of my readers ever experience this. I pray that if you’re reading and sharing my blog that we can avoid this happening in other people.

So, it’s only 2pm where I live. I’ve only been up for about 3 hours. Yeah, I know. I really did sleep until 11:30 am. However, I went to sleep at 3am, so it’s really not that bad.

I’m able to work part time, but my employer adjusts my hours. This week my hours are later, and this has caused my sleep schedule to shift a bit.

I normally can’t make it through a day without a HUGE iced tea. I don’t drink coffee, so tea is my main to only source of caffeine. However, if I’m working late, and I drink the tea to make it through my four or five hour shift, I have a hard time falling asleep after that, and that’s what happened last night.

So, last night before I went off to slumber, I had reminded myself three times that I would not have to go to have my labs this morning as planned, and that I would have to cancel that alarm this morning. I also reminded myself through out yesterday that I was going to have to go to the doctor to have the heart monitor attached. (have to do a 48 hour heart study).

At 7 am, guess what woke me? Yep, it was my alarm for my labs. Did I forget to cancel the alarm? Yep.

Turned that off and went back to sleep.

What woke me up at 11:30am? My alarm telling me that I had an appointment at 12:30.

I was completely surprised by this. I did not remember it. I did not remember, remembering it through out the day yesterday. Oh, and that reminds me, I have to have it reset tomorrow at the same time. And the lab work that I didn’t get done this morning, I have to do around 7 am before I have the monitor replaced.

UGH. I’m going to post it now, I will probably forget it and remember it a dozen times today, but forget it again by tomorrow morning. That’s just the way things go.

One thing I noticed this morning as soon as I woke up and rolled over to turn off my alarm, my hand was shaking. It was that lovely, can’t hold my hand still and trying to press the right keys on my cell alarm morning.

So, one of my neurologists suspected that my tremors, weren’t related to EPM, but were related to caffeine. I guess since I hadn’t had caffeine at that point, he would suggest they were from caffeine withdraw. 😉

It’s a beautiful afternoon in Dayton at this point in time. It’s gorgeous and sunny. My sinuses aren’t killing me. Besides the shakes, the memory, and the numbness in my hands and feet, I feel completely normal.

I won’t publish this post until later because I want to kind of give you a “full” account of what a good day is for me.

Ok, so it’s later.

Did anything else happen?

I had some issues with aspiration. Apparently, I can no longer walk and drink at the same time. Truly, if I’m in motion, drinking is an issue, and I aspirate.

I had to work tonight, and after 2 hours, my fingers became stiff. It hurt to type, but it wasn’t unbearable. They are still stiff and achy. My legs are also stiff because I had to sit for so long at work.

I had issues with memory, but that’s becoming the normal.

There you go. That’s a pretty good day for me. Tremors, memory issues, choking, stiffness and pain.

I hope that one day, more people who have cpm/epm will post some of their symptoms. (hint 😉 )

 

Tremors:

As I mentioned on my previous “personal” post, there’s a lot of information on tremors, and as I recently found out, it’s important to know the distinctions when you are dealing with CPM/EPM.

The real question is: what are some of the characteristics of a tremor associated with CPM/EPM?

This really isn’t an easy question to answer because it seems that movement issues associated with CPM/EPM vary. Not everyone with CPM/EPM will have an associated tremor, just like not everyone will develop locked in syndrome.

Further, there seems to be the initial injury that occurs with CPM/EPM, but as the brain creates new neuro pathways after the damage, then there can be new movement disorders that develop.

For whatever reason, this late onset of symptoms seems to be more likely to develop in a person who has damage in the basal ganglia. When a demyelination occurs outside of the pontine area of the brain, it is known as EPM. So, there seems to be a connection with areas damaged outside the pons and movement disorders.

In three survivors of central pontine myelinolysis, dystonia (in two patients) and rest tremor (in one) were sequelae. The onset of these movements occurred 3 weeks to 5 months after the initial presentation with central pontine myelinolysis. Magnetic resonance imaging revealed basal ganglia lesions suggestive of extrapontine myelinolysis in all three patients. We propose that the movement disorders seen in our cases are clinical correlates of extrapontine myelinolysis.

http://onlinelibrary.wiley.com/doi/10.1002/mds.870070208/abstract

We report on a woman with delayed-onset of belly dancer’s syndrome 5 months after central pontine and extrapontine myelinolysis (CPM/EPM) and severe hyponatriemia. This case demonstrates that basal ganglia lesions in EPM can be the underlying pathoanatomic substrate for the rarely observed belly dancer’s syndrome. The sequential appearance of extrapyramidal symptoms might reflect an ongoing but ineffective or deficient remyelination process. The presence of CPM/EPM should be considered in patients with involuntary dyskinesias of the abdominal wall.

http://onlinelibrary.wiley.com/doi/10.1002/mds.21394/abstract

In order to understand tremors to the fullest it is important to understand why people have tremors and the different types of tremors.

For instance, Parkinson’s Disease can cause a resting tremor. It usually impacts one side of the body early on in the disease and then as the disease progresses the movement issues become apparent in both sides. This type of movement issue can actually start in just one finger and for only brief periods.

There are also people with Parkinson’s who first notice the tremor in their hands when they are holding something, like a paper to read, as time progresses these tremors can become significant at rest as well as with activity.

As the following doctor states, it is really difficult to diagnose tremors because they can vary. I found the following video really detailed on how to diagnose a tremor, and I believe that University Hospital that made this video has the right approach in trying to diagnose it. I wish this is how my appointment with the neurologist went. I tried to explain that doctor that the severity of my symptoms vary, and he seemed completely dismissive. Anyway, check out this video:

http://www.youtube.com/watch?v=pP8jaxommQY

I have not been able to find a video that shows a Parkinson’s like tremor early in the disease.

The following video shows the various types of tremors. However, the video is very short.

The next video that I am posting also describes a postural tremor typically found in multiple sclerosis. It also describes cerebral tremors.

Now, I want to pause to explain that parkinson’s is a disease that describes how a brain cell has difficulty uptaking dopamine in the brain. In regards to MS, there is damage to the myelin sheeth because of an autoimmune reaction. There are other reasons for tremor as well, such as cerebral tremor. This type of tremor occurs at the end of an intentional movement. You try to touch your nose or press a button, but you can’t because your hand shakes. This tremor is caused by an injury to your cerebrum. There is a dystonic tremor. This tremor is caused when your muscles contract severely and cause your arms or legs to shake.

In regards to CPM/EPM, they are not certain why some people have tremors. There have been studies that show some people have issues with their cells uptaking dopamine like in parkinsons; however other studies showed patients with tremors had normal dopamine uptake. In these cases, the researchers speculated that the tremors were caused by new neuro pathways that develop.

I hope that one day, we will have more research that is done for CPM/EPM. In the mean time, it’s important to rule out all causes for your neurological symptoms, and in order to receive the correct treatment it is important to meet with qualified neurologists.

Please feel free to contact me with any questions or any information regarding your neurological issues. It is important to get input from you so that we can know and understand more about this injury.

UPDATED 04/14/2012–I’m including the following link that describes that there are people who experience resting bilateral tremors of both hands, that aren’t a Parkinson’s tremor. http://www.ghpjournal.com/article/S0163-8343(99)00018-3/abstract

02/17/2012

This week I had yet another appointment, and this appointment has stuck with me the rest of this week.

First, I want to apologize for not posting more recently than this. If you have CPM/EPM, you will find that your life seems to be full of the unexpected. You will find that there are days that seem normal and days that you wonder how will you be able to live the rest of your life in this manner.

It’s exhausting. It’s frustrating. It’s unfair.

It seems like everyday is chaotic and for someone who used to be so focused and moderately organized, this is driving me freaking crazy!!!

IT’S STRESSFUL!

SO, now I’m starting yet another category for my blog, but I still have to go back and add to hyponatremia, to CPM/EPM, and to my story!!! However, what I experienced this week needs to be addressed before I forget it, and it has really consumed me, so I feel I have to write about it.

C’est la vie!

This week I traveled 4 hours to meet with a neurologist who is a movement disorder specialist. I also had a MRI and something else….what was it. For real!! Another five minutes gone to trying to figure out what it was that I actually did while I was there. I only had three appointments. Oh, yes, the skin biopsy.

I thought I was going to go to the neurologist to get a TREATMENT for my tremors, jerks, shakes, twitches, spasms, etc. In other words, my neurological problems with movement.

I guess this is where I made my mistake. I had already met with a neurologist who is treating me for EPM, and she was sending me to get treatment for my EPM movement issues. She told me that she was sending me to a movement specialist neurologist for this purpose. I assumed that this was going to be the reason for the appointment: I was going to get medicine for my neurological issues related to EPM.

If I thought that I was going to be examined to determine on whether or not my movement issues were related to EPM, I would have been more prepared. I would have brought materials on EPM.

Here’s the thing: EPM IS RARE. CPM IS RARE. MOST DOCTORS HAVE NEVER TREATED A PATIENT WITH THIS INJURY, and it’s not that they are stupid or trying to be judgmental, they are purely ignorant!

This doctor was the same way.

I had no idea what the true intention for this appointment was, and this set me up for disaster.

This doctor did a complete neurological exam. He was pretty thorough.

After the examination, he told me: Well, you have an essential tremor and it is not related to your EPM. It’s fairly mild, but I can give you medication to treat it. I would also like you to test for Wilson’s disease. You don’t have any of the symptoms for Wilson’s, but it is a cause for tremors in a person who is younger. I don’t think you have it, but we’ll do the test as a precaution.

Before, having EPM, I would have just nodded my head and left. I would have spent the rest of the day biting my lip and waiting to say the things I wanted to say.

I don’t know what would have been better. I really don’t.

I literally started arguing with the doctor. He told me that because my MRI images were normal that the tremors weren’t caused by EPM.

Ok, folks, you know I’ve done research. I’ve spent the past 8 MONTHS researching this injury, and my first question to the doctor was: how many patients have you treated with this? His answer: ONE!!!

I then went on to say: My MRI still shows the injury (and it does). This is what my other neurologist has told me. However, if you were more familiar with EPM/CPM, you would understand that there is no correlation to the findings on an MRI and a person’s symptoms.

The doctor didn’t cotton to my pointing this out to him.

We literally started to ARGUE.

He basically told me that he wasn’t going to have me lecture him on this, but then I explained to him that I wasn’t pulling this information from WebMD. My information comes from credible medical research documents, and that I was preparing to go to medical school.

He warmed up a little bit at that point.

He tried to explain to me that the ONE patient that he’s treated with this disorder had the Parkinson’s like tremor that is associated with EPM/CPM. He told me that he had a video that he took on that patient. This particular person had both significant injury to the pontine region as well as the extra pontine regions AND that this person’s MRI still showed the injury.

He believed that my movement issues have nothing to do with EPM. He thought they were random.

He told me that I did not have Parkinson’s, and I did not have a Parkinson’s tremor.

Okay, so what’s wrong with what he was telling me, and how could I have better handled it? How could have this appointment gone better? What should I have done?

First, I should have been prepared. Really. I’ve been to hundreds of appointments. When you have something rare or not clearly understood, you need to come ready for everything. You need to have any research that you’ve found regarding your disorder. Make copies of your labs, of your reports, of research that you have found.

I had no idea what a Parkinson’s tremor was and how it was different from the tremors that I have. I will make a separate post on tremors and how they differ. Of course, with everything that is medical, there is disagreements on what is and isn’t a Parkinson’s tremor.

Basically, if you have a tremor or movements that impact one side of the body (at least in the beginning stages) that are present when you ARE NOT moving, they suspect Parkinson’s.

The tremor that the movement neurologist suspected is something called essential tremor. This type of tremor is usually found in both sides of the body. It generally becomes worse when you are moving. For instance, if you are trying to get food to your mouth or trying to get a cup to your mouth, but your hands shake so severely that your food falls off your fork or you spill liquids from your cup, they suspect essential tremors.

Now, I had no CLUE what the difference was. I had no idea that there was a difference. All I knew was that this issue became extreme when I developed EPM.

If I was prepared for this appointment, then I would have been able to produce information regarding my tremors. I would have also been able to represent the different types of tremors that are associated with EPM.

I did not know until after the appointment that this doctor really did not know what he was talking about: EPM/ CPM can have both, either, or neither…Parkinson-like or bilateral tremors.

In other words, my “essential” tremors, are probably caused by the EPM.

Furthermore, the doctor told me that there were no reasons to think that these tremors would not be long lasting if they were indeed caused by EPM. He believed that because the MRI images were improving then my symptoms would also improve.

I can not say whether or not this is true. I would have to point out to anyone who states that because your MRI images get better does NOT mean that your symptoms will improve. Further, if your MRI images DO NOT improve, that does NOT mean that you will not improve. The MRI, at this time, WILL NOT show anything more than that you had this injury.

The doctor also tried to state that symptoms will NOT get worse after the injury has happened. THIS IS TOTALLY NOT TRUE. DOCTORS DO NOT KNOW WHAT WILL HAPPEN WITH CPM/EPM!!! They do NOT KNOW.  People do see a progression in their symptoms even AFTER 8 and 9 months.

There has not been enough research in this area to know with any certainty what will happen. I know of 4 individuals with CPM/EPM that had improvements, but after a period of 1 to 2 years, their symptoms worsened. I really believe that this is related to just normal aging.

I would compare it to my cell phone that I dropped in the toilet. (It was an unused toilet at the time). I made the mistake of turning it on as soon as I fished it out. Now, anyone who is familiar with electronics knows this was a mistake. It basically fried it. However, I did not want to go out and buy a new phone. So, I took it apart. I sprayed it down with electronic cleaner. I let completely dry out and put it back together. IT WORKED! 🙂 BUT, there were certain keys that did not work, the pound and star button. I was perfectly fine with that because I didn’t really use those buttons that much any way.

So, I was happy, but several months later, other keys started not working properly. Some numbers would repeat a dozen times when I pushed them once. Sometimes, letters wouldn’t show up.

And this is my point, truly the brain works in a fairly similar way. We don’t understand how it works completely. Medicine is really archaic in this field. However, we know as we age the body breaks down. They don’t work as well. This is true for the brain. So, if you already have an injury in the brain, yes, you are likely to see improvements, but it’s like my cell phone, you just don’t know how long those improvements will last, and you are most likely to see these areas degrade over time as your brain ages.

Getting back to my appointment:

I tried to explain that the delay in new symptoms is believed to be caused NOT BY CPM/EPM INJURY directly, BUT BECAUSE YOUR BRAIN TRIES TO REBUILD CONNECTIONS, and it is believed that these new pathways can cause the new symptoms.

Therefore, people have seen NEW symptoms months and EVEN years after the injury. The doctor I saw agree with this, but he felt that new symptoms would not be seen after 1 or 2 months after injury.

See this article for a description on how this isn’t true:

Journal of Clinical Neuroscience 19 (2012) 179–180

And this one:

Journal of  Neurology (1995) 242:450-454
© Springer-Verlag 1995

Regarding the types of tremors that are experienced in CPM/EPM injuries, most are considered Parkinson’s like, resting tremors; however there are also studies that show that both types of tremors can be present, parkinson’s and tremors that worsen with movements.

Here is information from Wikipedia http://en.wikipedia.org/wiki/Central_pontine_myelinolysis:

 Permanent disabilities range from minor tremors and ataxia to signs of severe brain damage, such as spastic quadriparesis andlocked-in syndrome.[14]

Okay, the following is what I have. I do have a bilateral resting tremor that gets worse with movement:

A 56-year-old man developed drooling and bilateral hand tremors 3 weeks after correction of hyponatremia from 103 to 125 mmol/L over 14 h. He had a prominent 6 Hz resting tremor which worsened with action and mild cogwheel rigidity. Magnetic resonance imaging (MRI) showed changes consistent with central pontine myelinolysis and increased signal on T1-weighted images in the putamen bilaterally. His tremor responded well to L-dopa therapy.

(http://www.ncbi.nlm.nih.gov/pubmed/10833626)

I could go on all day quoting journals regarding tremors and EPM/CPM. Here’s another:

Rigidity was present in all four limbs, with orofacial dystonia and dystonic posture of hands and feet and with tremor in both hands.

http://dmc.academia.edu/MahmudurSiddiqui/Papers/893372/Selective_Extrapontine_Myelinolysis_in_Osmotic_Demyelination_Syndrome_in_a_Case_of_Previously_Undiagnosed_Sheehans_Syndrome_with_Recurrent_Hyponatraemia_-_A_Rare_Association

If I had been better prepared, I would have been able to bring these things to his attention.

More importantly, I showed him two videos of my tremors. He believed these videos demonstrated that I indeed have essential tremors. And I cannot disagree with this statement. I don’t know. I’m not an expert in tremors.

That said, I only recently started recording my tremors, and more importantly, I have spasms and jerks in certain fingers, in my legs, or feet, but these jerks are fleeting. So, I will have three or four twitches in my finger and there’s no way that I can record those particular movements without making a video diary of my every waking moment. I never know when these movements will occur.

This is extremely frustrating because by this point in my appointment, there was no trying to communicate with the doctor. I was too emotionally involved and so was he.

His take away message was: you’re going to be fine. You aren’t going to get worse. You are going to get better. You should try this medication to help with the essential tremor that you have, and I am almost positive that your tremors are not related to EPM. Even if they are, the medicine should help them. You do not have Parkinson’s.

Now, this seemed to be a crux in the conversation that I haven’t hit upon previously. He kept stressing that I did not have Parkinson’s. He stated that he was an expert for Parkinson’s.

I really did not understand why he kept bringing up Parkinson’s disease. I DO NOT HAVE PARKINSON’s. I did not think that I had Parkinson’s. I believe that I have Parkinsonism. Now, I’ve previously discussed Parkinsonism. From the knowledge that I have, it is any tremor that a person has, along with dystonia, and dyskinesia, and possible issues with your voice. I am not an expert on this. I know what I’ve read, and I promise to research this further and try to post on this more when I post specifically on tremors.

What’s wrong with his message:

HE HAS ONE FREAKING PATIENT WHO HAS HAD CPM/EPM. He certainly hasn’t spent the past 8 months researching every possible thing you can find on it.

He made incorrect comparison’s: Parkinson’s and EPM. People with EPM/CPM DO NOT HAVE PARKINSON’s. They have a Parkinson’s like tremor, and that isn’t even true for everyone with EPM/CPM. He did not understand that there IS NO SET STANDARD for CPM/EPM. It’s like saying someone who has colon cancer will have the same symptoms and issues as someone with esophageal cancer. It’s like saying there is only one cause for heart disease.

He was unwilling to say: I DON’T KNOW. I will need to evaluate you further. Please spend time making more videos of your issues and feel free to contact me when your symptoms change or if you have a video of something different. He didn’t even ask me when I took the videos I made.

I tried to explain that my symptoms vary in severity from day to day. Truthfully, they vary from hour to hour. Right now, I barely have any tremor at all. However, an hour ago, I did. I have twitches and spasms even at night when I’m trying to go to sleep, at rest. They make it difficult to fall asleep. I don’t have this problem EVERY night, but probably three or four times a week.

So, what could I have done?

I should have made a journal of these things. I should be keeping a daily record of my symptoms, the times, places, how much caffeine have I consumed, etc. Doctors really like data. They like it when you have detailed information for them to look at.

I really haven’t documented my symptoms and when I have them. I should be keeping more videos. I feel embarrassed to pull out my cell phone or video recorder to make these videos in public places when I’m experiencing these problems. I believe that those localized spasms that I get in my fingers or feet don’t last long, so I shouldn’t bother trying to record them.

I AM MY ONLY ADVOCATE. NO ONE ELSE IS GOING TO DO IT. You really need to take this to heart if you are reading my posts.

No one else is going to go to bat for you, and if you are willing and able, you need to make as many records as you can regarding your situation. It can and will help you out. It might help your doctor more fully understand your situation. More importantly, you can post it here on my blog and help others with CPM/EPM.

I also shouldn’t have bothered correcting this doctor when I didn’t have access to the medical journals or very good videos of my symptoms. Now, this doctor has formerly based his opinion. He isn’t going to bother to do anything else with me. If I ever need to go back to him, I will have to have a huge collection of evidence proving him wrong.

Let me stress, it’s not important to prove him wrong for the sake of being right, but because I will not get help from him unless that happens. I also won’t get the correct medications for the types of neurological issues that I have.

It’s also important to realize that it’s important to realize when you’ve lost a battle. It’s your choice on whether or not you are going to waste your precious time and health on trying to bring this person up to speed on CPM/EPM.

As more and more records become easier to access, hospitals will become able to share information on your medical history. This means that this doctor may be able to pollute the opinions of future doctors that I see, even at different hospitals, in different cities or states.

So, you really need to make a decision on whether or not you are going to spend your time and resources on “educating” a doctor on your condition.

If you choose to, I think it’s really important to “educate” him on the first appointment. First impressions make the biggest impact, and this is most certainly true for your doctors.

In other words, you need to be prepared for EVERYTHING on that first appointment. You have to have research articles on the types of symptoms and issues that you have, especially when those symptoms are rare. You need to have videos and if at all possible, personal testimony from family and friends (hopefully someone can go with you for your appointment that can attest to your issues and their severity). It’s great if you have a journal of your symptoms from each day.

You need to ask your doctors questions like: how many patients have you treated or seen with CPM/EPM? And it’s important for you to make a decision on whether or not you are going to continue to see this person if the appointment does not go well. Be prepared. Don’t be afraid to ask questions.

I’m sorry if this post was a bit repetitive. I believe that when I have something that I feel especially strongly about, I tend to repeat it. I will try to edit in the future for those type of repetitions.

For now, I’m going to retire. and as always, please feel free to write me with any questions or your personal story.

Hyponatremia: Children

I know I’ve mentioned that children are at risk for hyponatremia, but this is a growing epidemic.

Here’s the thing: children can be at great risk because when they go to a hospital for treatment they receive a general IV which is usually lacking in sodium. When this happens, a child’s blood sodium level becomes diluted to point of hyponatremia.

At this point the child’s brain begins to swell and their brain is larger at this point compared to the size of their skull VS that of an adult. In other words, a child’s brain is fully developed at 6, but their skull doesn’t become fully developed until around age of 16. This gives a child’s brain less room to expand, and so they are more likely to develop injury.

Use the following link to find out more:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874061/

It is suggested in this article that a child should be given IV fluids containing .9% saline whenever treated in the hospital. This includes ER visits.

Because the early symptoms of brain swelling are common symptoms of nausea, headache, vomiting and lethargy. This article suggests that their blood sodium levels be checked at the presentation of these symptoms.

I’m not sure what it is with me tonight, but I’m at a point of loss right now. I just can’t concentrate fully. The article I have cited above contains extremely pertinent information for the treatment and prevention of hyponatremia in children. It is also a recent article from 2010.

I highly recommend if you have a child who is in the hospital who is being treated for any disorder, make a copy of this article and go over it with your pediatrician or your treating physician.

At some point in the future, I will attempt to edit the post to a more complete form, but I really find that the information itself is important enough to publish even in this rough draft form.

May you never need to use it personally.

 

My story: Living with EPM

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

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

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

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

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

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

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

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

It was exhausting and frustrating.

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

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

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

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

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

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

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

Pain medications, IV glucose, and ambien.

Anything else?!

No.

Fine.

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

None of the nurses or doctors would tell me why.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was hard. My heart was breaking.

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

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

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

More to come later.

 

My EPM story: the diagnosis:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It can consume you.

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

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

My EPM story: the middle (part 3):

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

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

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

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

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

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

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

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

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

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

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

And this is some what how the conversation went:

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

Tom: Huh, what are you talking about?

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

Tom: What thing? What are you talking about?

Me: I want a movie.

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

Me: A MOVIE! From the thing!

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

Me: From KROGER or the VIDEO PLACE.

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

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

Zack: You mean, the RedBox?

Me: YES!

Zack: You weren’t making any sense.

Me: Where else would you get a movie?

Tom: The movie theater.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was extremely disappointed, but had no other options.

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

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

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

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

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

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

It was like I was having a stroke.

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

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

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

This is when I became really scared.

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

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

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

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

It really made me feel nuts and frustrated.

This is all part of having CPM/EPM.

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

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

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

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

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