Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Therapy:

Recently, and by that I mean back in April, I think, I was told by my neurologist that you don’t stop recovering from a brain injury.

He said that there used to be a notion that recovery happens only during the first two years post brain injury. He said that isn’t true. He said, recovery can continue to occur post two years.

I don’t know.

I can’t say that I have seen monumental gains or even noticeable gains. However, I am doing more than I did two years ago.

There came a point about 2 to 2 1/2 years ago when I was busy watching everyone else live their life, and I was spending my days on the couch trying to figure out what to do with my life. I’m sure you are probably doing the same, if you haven’t already moved beyond that point.

I would spend a lot of my time surfing social media, FB, and I was so envious of all of my friends and family that were living lives without a brain injury. They were going on vacation. They were participating in 5k’s, marathons, or even triathlons. Yes, they were going back to school, graduating from nursing school, medical school, or having more children.

My life was at a standstill, and I thought, I could spend the rest of my life sitting on this couch in my living room, or I could do something different.

Several of my doctors recommended therapy…aquatic physical therapy….boxing, biking, and others had been mentioned. I had already completed occupational, cognitive, and speech therapy. My insurance stopped paying for it, and I wasn’t getting anything out of it anyway. I don’t have access to Rock boxing near me, but here is a link for it, just in case you do:

Home

This is a program designed for those of us with movement disorders similar to Parkinson’s.  They have locations through out the U.S. I don’t believe that you need to have a prescription from your doctor, and other than that, I would recommend using the link to find more information.

Aquatic physical therapy is good for those of us who have limited range of motion and balance issues. You would need a prescription for that.

There have been significant improvements with movement issues caused by brain injuries after riding bikes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4557094/

http://www.medscape.com/viewarticle/751998

This is a research article that explains how it helps with Tremors and Bradykinesia.

http://commons.pacificu.edu/cgi/viewcontent.cgi?article=1433&context=pa

It is also helps with balance. Now, from what I understand, if you do not have fantastic balance to start off with, go for a stationary bike. One of our CPM friends, Todd, has been biking for years,and he has said for years that it has helped him. Turns out, he’s not the only one seeing improvements with movement issues after cycling.

For me, I started walking. Now, there a gazillion reasons to get out and walk. It lowers BP, raises endorphins, lowers stress, etc. For me, I had to start off with just 1/2 a block. That was it. It was hard. It was a bit depressing because I would compare it to what I had been able to do pre-brain injury. Here’s the thing: DON’T DO THAT!!!! Do NOT compare your current self to your past self. There is absolutely NO good that will come of it.

As my daughter says, “You get what you get. You don’t throw a fit.” Yes, that’s easier said than done, but practice it. Even if we didn’t have a brain injury, comparing our former selves to our current selves, NEVER solves anything. It just doesn’t.

We’ve been given this life, and we’ve been given this struggle, but here’s the thing, if not this, it would have been something else at some other point in time. Cancer. Diabetes. Heart attack. Stroke.

So, we’ve got to suck it up and move on.

These therapies above, they won’t make turn you back into your old self, but they might help you move beyond what you have to deal with today. They will help. They will make you mentally stronger, if not physically stronger. They will give you the determination to succeed against the body that does not work with you as much as it once had.

And it is not easy. I promise you, it will hurt. Your muscles will hurt. You will get tired. You might even get angry, especially if you compare your current self to your old self. Hopefully, you will have a fantastic group of friends, family, and hopefully, a loving spouse to motivate you to keep working. Actually, you need to have a friend or spouse or someone to go with you. Trust me, you don’t want a broken leg or a bump on the head because you lost your balance…at least to start.

My first attempt at this was walking. I added more and more distance, and when I finally mastered about an hour walk a day, I started adding more tedious trails. Again, I did not do this alone. I had a good friend who went with me. It was important. Remember, this is not a contest: Pace yourself.

If you can, especially in the beginning, see a massage therapist. They will help work out the kinks that don’t seem to want to unkink on their own. Take about 400mg of magnesium with about 200mg of calcium. This will also help with cramping.

And maybe take an Aleve or Advil before or after you go, with food, because it can cause gastritis if you don’t eat. This will also help with muscle pain and cramping. Just don’t take those for too long because they can lead to stomach, kidney, and liver problems with long term use.

In the end, 2 years post starting exercising, I STILL have cramping within the first 50 yards of my hike or swim.  (I just started cycling, but I look like a drunk monkey because my balance is so bad- HA!) So, I can’t promise that the cramping or pain will stop, but you will develop the determination and the mental fortitude to keep going despite the pain because WE ARE STRONG. We are survivors!

Please contact me if you want more information on any therapies.

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5 thoughts on “Therapy:

  1. Joe Collins on said:

    Thank you so much for this great blog, I now have a place to go to learn more about CPM/EPM. I am delighted you have recovered this much and hope it continues.

    My son is still in the hospital with severe CPM/EPM, last Sunday we received the terrible news that his second MRI showed that his CPM advanced into his glia and thalymus. he is almost non-responsive, sleeps 15 + hrs/day, and is on a PEG tube, cannot talk, and can barely move his arms, nothing else and does not know who we are. He was taken to the ER with a seizure that then made him injure his head to the point he had a sub archoinoid hematoma, we believe was induced by severe hyponatremia. The hospital shot his sodium up 20mmol in 24 hrs. It has been three weeks since he was brought to this level on the sodium and the original onset of the CPM.
    We are desperate for any answers and help and I am looking for the name of a Neurologist that specializes (or at least has significant experience in CPM). Do you happen to know of one and any guidance/advice you may offer?

    Thank you very much

    • Dear Joe,

      I am SO sorry!

      First, this will be a VERY long process. I would agree. His having a seizure is a sign of rapid hyponatremia that causes the brain stem to herniate (swells and can burst).

      In cases like this, they do raise the sodium levels very quickly to try reverse the swelling.

      In general, those who have rapid onset hyponatremia don’t develop CPM-even with a rapid increase in sodium.

      I have to wonder if it is just a brain stem hemorrhage leading to necrosis.

      No matter what, you need to get him on plasmapharesis- NOW! ASAP!

      I would also check into hyperbaric treatments–search on my blog “treatments”. You will find other options. There are medicines that can be given.
      Natural supplements to try: magnesium supplementation- the brain after injury is low on magnesium- blood tests won’t show this low level because the brain contains a different kind of magnesium. You can contact Dr. Ehlmer at the University of Toledo Medical center if doctors give you shit over this.
      Fish oils- if he has a stomach tube–just have them mix it with his feeding. Udo’/ oil is great- you can ask Dr. Ehlmer about that too.

      These kinds of supplements can be administered rectally if not orally or through a gi tube.

      There is a lot more- you really should just search my blog.

      Also, understand that with CPM, the person is still cognitively present. Though, it can take a few weeks to go beyond the coma- locked in syndrome is when they KNOW everything that is happening but can’t physically interact. I would treat him like this.

      I’ve never heard of CPM spreading past the areas of initial injury. I’d get a second opinion from a doctor at a different hospital.
      Cleveland clinic allows for you to upload your record to them, and they will give you a second opinion without going there in person.
      I would seek out their opinion.

      Please contact me with any questions!

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