Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “Diabetes mellitus”

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.

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More to the Story:

Last night, I couldn’t sleep. For some reason, I thought thinking about what I would post today would allow me to fall into slumber. Not that I think my posts are boring ;), but I thought concentrating on something I was going to do would soothe me. Ha, I was so wrong!!

Normally, I don’t have a problem falling asleep, but I have a horrible time staying asleep. I wake up about 10 to 13 times a night! Really, I don’t know what the purpose of my trying to sleep is. It doesn’t work. But, in an effort to fix this problem and to relieve my utter exhaustion, I started using Ambien last week.

Anyone who has used Ambien will tell you, its effectiveness doesn’t last long. After a few peaceful nights of only waking 3 or 4 times per night, I feel more rested, but I only get that effect for the first 2 or 3 days. After that, I start waking up more and more again, so I try to use it for short periods. I will use it for a few days, maybe a week and then stop. I know if I keep using it, it won’t do any good at all after two weeks or so, but if I use it, then stop, in a week or so, I can use it again and have it work for a few nights or so. At least, I’ll have a few “good” nights of sleep.

So, last night, I had an Ambien free night, and that led to insomnia, which is a problem that I don’t have very often. I simply could not fall asleep, and when I did, I had horrible dreams along with waking up every 20 to 45 minutes.

Getting back to my point, I thought thinking about my hyponatremia story would soothe me into slumber. Of course, it didn’t. I became so upset with how my treatment was handled, and how I developed EPM because of it that I had to concentrate on not thinking about it.

If I start talking about what happened to me that will be the end of my spreading the word of how to prevent it. I will, at some point in the near future, start discussing what happened to me and how it’s impacted my life. I definitely encourage anyone who is experiencing their own incidence of hyponatremia to post their stories. Please post your story! Post any information you might feel that I have missed because I know I am missing things, which leads me to what I am going to focus on right now.

In my post yesterday, I forgot to mention a few important groups of people that are susceptible to hyponatremia.

I can’t believe I didn’t include this yesterday, but persons who have brain tumors (especially those of the pituitary gland), and those persons who have had brain surgery have an increased chance of developing hyponatremia. (I really can’t believe I forgot this group yesterday because this is the group that I am in!!)

So, the pituitary gland (located in the brain) is the master gland. It produces hormones that control additional hormones through out the body. I don’t want to delve into a tremendous amount of detail about the pituitary gland. The most important thing to know is that it is responsible for the hormone, ADH.

ADH, is one of the hormones that controls the amount of fluid the body holds on to. If ADH is not produced or too little is produced, a person will pee constantly. This leads to an issue known as diabetes insipidus.

Okay, so most people will think…wait, diabetes has to do with blood sugar, and I’ve never had that problem. This isn’t entirely correct.

Diabetes by definition is a metabolic disorder that causes excessive thirst and excessive urination. There are several types of diabetes. The most commonly known type of  diabetes is diabetes mellitus.

Mellitus is Latin for sweet. So, diabetes mellitus is translated to mean “Sweet Urine”. This is because doctors used to taste the urine of patients to determine whether or not they had an issue with their pancreas. (Now, you know why they were paid so much money. You would have to pay me A LOT to drink someone’s urine. Just saying.) They knew that the issue was with the pancreas if the urine was sweet because the excess  sugar would be dumped from the body through the urine.

The type of diabetes that leads to hyponatremia is usually diabetes inspidus. Insipidus means tasteless in Latin. So a person with diabetes insipidus would produce a large amount of  dilute tasteless urine. This issue is most commonly caused by an issue with the pituitary gland.  The pituitary gland stops producing the hormone, ADH, so a person releases a large amount of urine.

I hope that all makes sense.

Moving forward, another important group I didn’t mention yesterday, are people who are starting antidepressants. During the first few weeks of starting an antidepressant, a person has a high incidence of developing hyponatremia. I’m guessing since antidepressants impact brain chemistry (usually seratonin uptake inhibitors), in some people it impacts pituitary function as well. This is totally a guess, so don’t quote me on that.

A few additional groups that frequently develop it: persons with AIDS, pneumonia (or severe respiratory issues), and burn victims.

Finally, I mentioned that liver disease increases hyponatremia, but I wanted to specify that cirrhosis of the liver increases your chance of developing hyponatremia.

I think this really emphasizes the point of it’s not a matter of who, but WHEN will you develop hyponatremia, and the seriousness of hyponatremia should be addressed. It’s extremely dangerous. It’s not uncommon and most people have never even heard of it. The more scary part is: if your doctor doesn’t treat it properly, you can die, end up a living vegetable, or with brain damage.

I hope that I can prevent that from happening to someone, and I greatly appreciate if you are reading this that you will help spread the word by posting this information to your Facebook page, or sending the information directly to your friends. You really might save a life!!

 

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