Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “December, 2012”

Michael’s story (symptoms):

I am happy to say that Michael has answered some or all of the same questions that Todd has. I think this will give you a good idea as to how each case of CPM/EPM is unique, but also has similarities, especially with movement, speech, cognitive issues, etc. There is a lot more research that needs to be done, and this is by no means a detailed explanation of everything that they experience, but it gives a general idea of what a person lives with.

I hope you’re ready for a great Christmas break. I hope you have a safe trip to Canada.

I’m hoping you can help me by answering the following questions. I’m trying to organize a list of symptoms that people have with this or how their injury has progressed over time. Feel free to add comments and additional comments about how the injury has impacted you. Take your time. I feel this is going to be one of the only ways to get doctors to understand how it impacts us long term.

Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?

Do you forget stories or movies or articles or recognize faces but forget the plot? – Yes all the time  

Do you have jerks and twitches? – Yes in my hands, feet, head, and legs…

Do you have issues sleeping? – No I am so tired by the time I get there I pass out.

Do you find yourself easily distracted?- I use to pride my self on how focused I was on being able to complete the task at hand, now if I can sit for ten minutes and stay on one topic I am doing good.

Have you had issues with managing your finances, forgetting to pay bills or paying them more than once? – I only have four bills to pay and my wife has had to take over that because I would always forget to mail them and would wonder why why they would call the house.

Do you need help doing any daily activities, like grocery shopping?- No but I should, I can be in the store for an hour if I go by myself and only need 3 things. I will constantly forget what I am there for.  

Have you had irregular heart rates?- 
No

Have you had hallucinations?- Yes, in the beginning i had a lot of them and it scared the crap out of me. I would be driving on the Highway and I would see people standing in the middle of the road. But now it has calmed down. Only once or twice a week i will see different thing.

Have you had any blackout periods? No

Have you had any weight gain?- No

Have you had any issues with visual problems with blurriness?- Yes, some days are better then others, but my vision is getting really bad. I don’t drive often at night unless I really have to.

(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnitus. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).- No

Have you had issues with smelling?- No 

Fatigue? – Yes, 

Any hormonal changes, like low thyroid? No

Issues with making impulsive decisions?– No

Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?- Yes can’t write anymore, my fine motor skills are shot. When typing I have to type slow because my hand twitch and jump all over the place so that can be an adventure. This is not 7 days a week, usually about 5 days.

Any issues with swallowing?-No

Any issues with understanding what someone is saying to you? – Yes, sometimes I have no idea what someone is saying and I just say ok or give them the answer I think that they are looking for.

Paranoia?- No

Depression?- Yes, some days I say why me, 

Sleep disturbances?- No

Sleep Apnea?- No

Numbness and tingling? – Yes, in my hands, back of my head and feet.

Balance or coordination issues?- Yes, some days / most days I walk like I am drunk. 

Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? Do your symptoms remain constant or do they come and go?– Yes, Cramps, spasms,jerks, stuttering and drooling come and go on a daily basis. Memory, concentration, learning, numbness of the back of the head, eye sight issues, hand tremors, feet tremors are 24/7  

Do you do any therapy or did you do so after being released from the hospital? – No

Have you met any doctors that have helped with your condition, neurologists/ GP? Yes, finally after going to 7 different neurologist I found one that took the time to listen and figure out how to help with my issue.

Have  you experienced new symptoms or have you had continuous improvements? – Yes new symptoms sense it first started. But the doctors say it is not progressive. 

Have you met any new people with CPM/EPM? – Yes on Inspire a web based forum for people to talk about their medical issues and concerns. Meet a new one this week. 

Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds? – No

What are your current medications that are helping? – Carbidopa-levodopa, Baclofen, Ropinirole, Topiramate, and Tramadol. I take these three times a day. Many many pills………….      

Please feel free to leave questions or comments for me or Michael, and we can try to elaborate on anything listed. 

 

Advertisements

Todd’s story (symptoms):

I am really impressed with how well Todd is doing. He really has made  such a dramatic recovery. It really gives us hope that if you have CPM, you can make great strides. So, Todd developed CPM in December of 2007/Jan of 2008.

Please see his story regarding the progression of his injury.

The following is a series of questions and answer regarding his symptoms:

I think your “addiction” to cycling is fantastic.

I am trying to do everything in moderation.

I hope you are doing well. If you can, if you can give a detailed account of your experiences to date. It seems like you’ve made a great recovery. Do you attribute that to anything? Any certain treatment? Any medications?

Deep down inside of me, I really believe it was God’s way of telling me “You have had enough scotch and Copenhagen”, although I have relapsed once one scotch and twice on beer, never on Copenhagen.  I once asked a X-Camel Straight smoker (may he RIP) after 17 years nicotine free if he ever missed it?  His verbal response was kind but his nonverbal wanted to rip my head off for asking such a stupid question.

The only medication that may have made a difference was the Carb-levadopa.  I was on that until I saw Dr. Bajwa, the local Parkinson’s expert, we weaned me off. (Jan 2008-Sept 2008).  He also diagnosed me with the Parkinsonism.  I have a functional left hand that has issues with a now overextended thumb.  I do not know if it was because of the CPM or the nasty restraints that I had to wear in the hospital.  At the time, I could not communicate, but I was extremely worried I was going to lose function in my hands because of the restraints.

Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? How about issues with vision, heart rate, hearing? Do your symptoms remain constant or do they come and go?

Cramping from my spinning.  Early on I had slight issues with memory.  While in the hospital, I always saw a yellow hew.  I have a constant ringing in my ears, which I do not think is CPM related.  I do experience thoratic pain some nights.  My bum left hand also experiences a dull pain and stiffness.  My facial expression is always straining and I have a constant primitive noise that I make and I stutter when excited.

Do you do any therapy or did you do so after being released from the hospital?

I did Occupational, Physical, speech and recreational while at Bethesda.  I continued with speech for an additional 3-6 months going through 3 therapists.  Last summer I spent $ to get a 4 year/40,000 mile tune up with the last and best of the 3 speech therapists.  Everyone tells me my speech is fine, but that is B as in B, S as in S.

Have you met any doctors that have helped with your condition, neurologists/ GP?

I haven’t seen a neurologist since Bajwa, to get off the Carb-Levadopa.  I take the mini aspirin, B-complex, Multi-Vitamin, chondroitin and glucosamine.

Have  you experienced new symptoms or have you had continuous improvements?

I only thing that may be new is the pain in my left hand.  I started doing what I call “old folkies” yoga in 2008.

“Old Folkies” because at 52, I am the youngest there.  Recently I am trying to do “Real” yoga, “real” because I am the oldest there.  Also am trying to do core and muscle classes at last 2 times a week striving to reach 3-4X a week.  I DEFINITELY do feel better exercising (just do not tell my Life Partner).

Have you met any new people with CPM/EPM?

I have personally met M, which was fabulous.  It was like a first date:  seemed like less than a minute in over 2 hours.  I have wanted to go and meet D (about 20 minutes from my Mom) but didn’t pursue that.

Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds?

The only thing I can remember is the Carb-levadopa and Multivitamins.

Conversation continued (Sorry about some repeats, I didn’t remember asking the questions before):

Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?

No, I always had and still do have a great sense of direction.

Do you forget stories or movies or articles or recognize faces but forget the plot?

No, if I did, it would be more age related.

Do you have jerks and twitches?

No.

Do you have issues sleeping?

I do have sleeping issues that I am trying to figure out without seeing a Doctor. In a perfect world, I need 6-7 hours of sleep. I use to wake up to my life partner coming to bed—I sleep through that now. I have been going to bed at 10:30 and waking at 4:00. I have finally decided I am going to get up at 4:00 and try not to nap. I have a clean conscious—If tired, I can fall asleep anytime anywhere in an instant.

Do you find yourself easily distracted?

No.

Have you had issues with managing your finances, forgetting to pay bills or paying them more than once?

The only issue that I have had: We took some money out of an IRA to pay for college tuition. Forgot to tell my accountant.

Do you need help doing any daily activities, like grocery shopping?

No. Although everything is more difficult to do: Dressing, tying shoes, cooking.

Have you had irregular heart rates?

No.

Have you had hallucinations?

No.

Have you had any blackout periods?

No.

Have you had any weight gain?

No.

Have you had any issues with visual problems with blurriness?

No.

(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnuitis. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).

Mine is not painful.

Have you had issues with smelling?

No.

Fatigue?

No.

Any hormonal changes, like low thyroid?

No.

Issues with making impulsive decisions?

No.

Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?

I cannot write legibly anymore although only one check has been returned. A bill comes; I immediately make out a check—old school.

Any issues with swallowing?

No. more so with chewing.

Any issues with understanding what someone is saying to you?

No.

Paranoia?

No.

Depression?

I am a recovering alhocolic.

Sleep Apnea?

No.

Numbness and tingling?

In my left hand—I swear it is because of the hospital restraints.

Balance or coordination issues?

No.

Have you noticed any new symptoms developing or anything that got better but is now getting worse?

No.

It sounds like overall, except for a few minor speech issues and movement issues, you have completely recovered. Do you feel that is a correct summary? Oh, and in regards to directions, I wanted to clarify the question….do you have issues if someone tells you something verbally, like a new procedure at work, would you have difficulty remembering the task or understanding the directions? Oh, and how long overall do you feel it took for you to make the recovery to this point? Was it a matter of weeks, months? Oh, and what area of the brain was impacted? Was it the pontine area or the basal ganglia area? And how long has it been since the injury again?
I have the drooling and grunting issues along with my bum left thumb, also.  I am graciously, graciously, graciously……..thankful for my recovery, but I would not use the term “completely”.  I have no issues following directions.  I think it was the pontine, honey, is that right?  My life partner has to do the timeline?  I have no clue–we did 2 days of Tour de Kota on 2010 and in 2012 we did all six.  I was diagnosed with CPM in December 2007/January 2008?

Thank you, Todd!!! I hope that I can get more information regarding real life experiences with CPM/EPM. I think it might be an important reference for doctors who want to know what a person lives with after they leave the hospital. With Todd’s help, I’ll keep you posted of any changes and improvements that he experiences, but regarding this injury, he has had the best recovery, and he didn’t have any treatments except cognitive and speech therapy.

Please feel free to contact me with any questions or comments, and I will get them to Todd or try to find an answer for you.

 

Update:  Some information provided about how life has changed for Todd since his injury according to his significant other:

Well, to elaborate just a little more, the event happened right  before Christmas of 2007 and the way it was explained to me was that the demyelination of the myelin sheath doesn’t allow the nerve signals to properly transmit, therefore causing the symptoms of speech he has described.  Believe that would be the basal ganglia.   I would say those issues are considerably more difficult to deal with than “minor”.  Sometimes speaking is quite labored and will often cause him to speak very little because of the strain.  You can visually see the strain on his neck muscles when speaking.  The grunting is mostly in the am upon waking before his body becomes accustomed to regular movement.  That is why vigorous exercise demonstrably improves the situation and remains a vital component to his continued recovery and/or keeping him where he is at in the recovery process.
 
I believe that the recovery has been slow and steady ever since the event occurred. 
Thank You for input, Linda. I think that is really good to know. I think an outside, yet personal, description of the experience is very helpful.

Concerns:

Foreword: I wrote this a few days ago, and I think it gives a pretty accurate description of how frustrating it is to have a brain injury. I wish I had more answers as to what to do for it. Hopefully, as time goes on, there will be more answers, more treatments, more ability to have a normal life or better recovery.

It gives me strength to know that I’m not alone in this. I think it’s important to let you know that even though you might have lived past an injury that they thought you would not survive, even though you are grateful for your life, it doesn’t mean that you don’t grieve over the way your life was.

Concerns:

I don’t know what’s going to happen in my life. It has already changed TREMENDOUSLY. The biggest issues that I have is with the way I think, how I act, not being  able to live my life like the way it was, but this might be as GOOD as it gets, and that is extremely SCARY.

 

I was right. My occupational therapist said that those who suffer brain injuries can have their brains turn to MUSH. Ok, she didn’t use the word, mush, but that’s pretty much what happens. (She thought that was ridiculous before, but she went to a conference and they acknowledged that it was happening.) The brain calcifies. It can take a few years up to 40. In autopsy, they removed the brain of someone with CPM, and their brain CRUMBLED in their hands.

 

I’m 35. I have two kids. I wanted to be a doctor, and that was a realistic possibility, and now I’m stuck working about 12-16 hours a week taking sales calls. I have TRIED to pick up my textbooks. I have TRIED meeting with my MCAT study partner. It doesn’t work. My mind doesn’t work. It’s like throwing cooked spaghetti at a wall. It might stick for a few seconds, maybe a few minutes, but then it’s gone.

I want to get better! I want to be back to normal.

It’s exhausting trying, over and over and over. I find comfort in the things that I do remember. I remembered an appointment, and that gives me false confidence that things are better or that I’m better than I am, and so I think, I don’t really need to write this down. I’ll remember it. Or I won’t need to create a reminder on my phone to pick my prescriptions, I’ll be driving by the pharmacy and that will cause me to remember. That’s how it used to be. Everything, would just fall into place as I did something. I would be able to organize things in my mind, as simply as one puts the pieces of a puzzle together. It was so easy.

 

It does bother me that the other day I could not remember how old I am. I could not.  It bothers me that I don’t realize I bought the same video game from three different places in a 24 hour period.

 

I don’t want o be like this for the rest of my life. I’ve always been a survivor. I’ve always been able to overcome obstacles. I have lived through SO much: physical, mental, emotional abuse, sexual assaults, long term illness (when they couldn’t figure out why). I’ve worked through it all. I’ve lived through it all. I’ve overcome it all, and just as I was beginning to think I had the possibility that it was going to be better (pituitary tumor removed), I was mistreated and ended up with brain damage. And now, to face the possibility that after losing my mental abilities and that now I face years of losing my mental abilities over the course of 5 to 10 years or longer until I die, until my brain turns to mush.

 

I am extremely tired of having to deal with the brain injury, of having to make adjustments to my life. I HATE not being me. I hate that I have to make notes to get things done. I hate that I can’t remember if I’ve taken my medications or not, or that I forget to call a prescription in, or that I didn’t fill the prescription box correctly. I hate the side effects that I get from the medications. I hate that they don’t fix the problem. I hate that I have people question my integrity when they don’t know who I am or how much I’ve accomplished and Lived through. I hate that I have to walk into work and feel like a slacker because I’m not able to work 30,40, 60, 80 hours a week. I hate that I watch the same shows over and over again and that I remember the faces but I don’t remember the story.

 

I hate the stress. I hate the fatigue. I hate that I have to go through this. It’s not fair. It’s not right, and I don’t know what to do about it. I don’t know what I can do about it.

I don’t want to live the rest of my life having other people take care of me. I don’t want to live the rest of my life dependent on medications, physical or occupational therapy. I want to be 35, and live the life of a 35 year old. I want to go back to school. I want to get into medical school. I want to be a doctor. I want to be the strong, independent person I was before the brain injury.

 

What do you do when what you want to do, who you want to be, is no longer what you can do or can be?

 

I am not sure what to do next, and I’m trying to be happy with what I have, but I’m not. There is a hole in me that’s so BIG, the disappointment is so tangible, the grief is so pungent, that I feel lost. What do I do next?

 

Todd’s Ride:

Hi, folks.

This is going to be an ultra brief post. Todd’s story is posted on my blog, and he has made remarkable strides!

He is raising funds for CPM/EPM. I do not have all of the details, but please be feel free to check out his donations page.

 

 

My prayers and good wishes are with him and his wife as they go the distance for CPM and EPM.
Good Luck, Todd!

Post Navigation