Deb has helped provide insights into symptoms that are related to CPM/EPM. She’s suffered from the condition for four years, and I am including excerpts from comments that she’s left me in my comments section to help journal some of the symptoms that aren’t recorded in the medical literature.
In the beginning:
I had the headache for about a month before my collapse into a coma. I kept going to the Chiropractor thinking there was something wrong with my neck, but as it turned out it was my sodium.
She further describes her experience:
My initial symptoms were severe. I was in a coma for 4 weeks. Went into cardiac arrest twice. When I woke I was paralized from the neck down, unable to speak or swallow. I had a feeding tube thru my nose while in my coma, but when I woke and they realized I wasnt able to swallow they put one in my stomache. I was then sent to a nursing home where I did 5 hours of phsyical, occupational, and speach therapy daily. I was in a wheel chair for quite a while. I had horrible pain, sharp shooting pains, and alot of cramping. When I woke from my coma my left foot and leg were cramped up, my foot was up to my knee. My hands, were curled up in balls. To make you understand my mind set, when I saw my neurologist for the first time after I left the hospital, he told me I may be in a wheelchair for the rest of my life. My very first words were “F*** you”. They were faint, and hard to get out, but he had to know what I was thinking. Over the next few months I continued my therapy daily. Eventually I was walking with a wlaker. Then my therapy was cut from 5 days a week to 3. And again over many, many months I began to walk with a cane. My tremers are bad in the AM before my meds, my muscles feels like they are constantly being torn. But now I am duing therapy on my own, I can still only lift 2lbs, I have lost over half of my muscle tissue. They say I may never get that back, also eventually I WILL be back in a wheelchair. I can type with 2 fingers, I used to type 80wpm. I have trouble with my vision, My left eye is now considered a “lazy eye”. When I am tired, or look at the computor for too long it gets a mind of its own. My ligaments in every joint are kinda like broken rubber bands, my joints are what they call “free floating”. So, beginning in Sept I am going to start a series of surgeries on them to tighten the ligaments. I have constant pain, never letting up. Not even for a minute. I go once a week to a Chiropractor because my muscles pull my bones out of place. I also have a massage once a week to help keep me limber. Mind you, I am a former swimmer, loved to run, play volleyball, softball, or pretty much any outdoor sport. Now I have the body of a 80 year old (according to all my docs) and the life of one too. CPM/EPM has stolen everything from me. The only thing I enjoy now is watching my kids screw around in the yard and watching birds. My hands are so weak I can’t even enjoy baking or cooking. Hope this helps, I appreciate your site because I don’t have to say all this stuff on facebook, or even inspire. Sick, just sick to death of this disease. Deb
The following describes her experiences with tremors, a problem that I’ve described in previous posts:
The tremors, Mine are really bad in the AM before my meds. After my meds, they get better. If I am doing anything with my hands for too long they will get bad. I have to have an easy hairstyle because I don’t have the control to “do” my hair. If I hold the hairdryer for too long They will start to shake and cramp. I have an experiment for you; Take your thumb and 1st finger and make a “o” with them. Your thumb should point out at the joint closest to your hand. If it doesn’t you have significant muscle loss. Mine is completely flat, my “o” is more the shape of an egg. Give it a whirl. let me know what you find.
In regards to her experience with how she experienced improvements, but over time, she experienced a decline in her health:
Yes, I have had a decline in my health where things initially improved. I have the same issue with recall, I get so pissed at myself! I can remember things that make me angry or upset just fine, but any happy memories just fade away…… My thumbs face a weird way too when I try to make my “o”. My occupational therapist was the first to notcie it. Also, every morning I cry when getting up, all my joints and muscle are so tight it is rediculous! That’s why I do yoga, it help stretch things back out. What is happening is when you sleep your spasticty is causing your joints and muscles to tighten. So, when you wake in the AM, your body needs to move, if you didn’t move would become “stuck” . I have the reading issues as well, haven’t read a book in almost 4 years. All for now. Deb
………I have been pretty lucky as far as docs go. Since they don’t know much about my disease they take my word for pretty much most of the time. My new issues are my thyroid. I now have hypothryoidism. Never had any issues ever before in my life. My memory sucks as well. I have issues with concentration and my spelling. I could spell anything before, now I have to think thru a word, and sometimes I still get it wrong. I am very spastic, my movements are almost robot like. They have gotten better in some ways, and worse in some ways………
You can read more about spasticity through the blog post I made that included the information that Deb provided.
In regards to the emotional issues related to CPM/EPM, which I touched upon in my previous posts:
….. I know exactly what you are talking about. I still struggle with these things and my cpm/epm happened 3 1/2 years ago. And your right, I never feel truly happy. I can feel good about things that happen to other people. I have lost all of my family (mom, dad, brother, sister) because I just tell it like it is. Things I kept bottled up for 30 years just came flying out of my mouth, I had no control. It was like I was another person. Most of my husbands family has walked away too. They just can’t handle my brutile honesty. Things just blurt right out. I have no control. Before I know what I am saying people are standing there with their mouthes hanging open, just stairing at me. Whatever I am thinking just fly’s out of my mouth! I am almost always so close to tears all it takes is one weird look from someone, anyone and I am crying. In fact yesterday, I told my husband I think I need to find someone to talk to. Someone who justs listens and has no judgement. Since this happened I have felt useless. I have tried every kind of “hobby” you can imagine. Most I can’t do because of my hands, and the rest I just don’t have the patience for. I have been reading your blog on a regular basis, and I think it;s great!……..
Deb has also left several comments on the importance of using sea salt. There is a growing recognition on how sea salt is the better type of salt to use, but I haven’t researched it myself, so I don’t know where the difference is.
…….Also, I have seizures when my sodium gets down to 128. That is the “magic number”. Since my incident, my sodium has been pretty well controlled. I read an article that if you eat sea salt on everything it won’t raise your blood pressure, but also give you what you need. I eat it on everything!!! ……
…….I have been writing to Dr. OZ for 3 years. Also Dr nancy from the Today show. But they don’t want this info out. It would ruin their “salt is bad” campain. They are right, table salt is bad, but sea salt couldn’t be any better for you………..
I hope to post more regarding how CPM/EPM has impacted others, so please feel free to leave me comments, etc if you would like to participate. I really believe this is the only way we”ll ever be able to express our stories in their fullest. Medical journals do not research symptoms or experiences that we suffer from long term. There’s just not enough information regarding our experiences, so we will have to document them ourselves.
THANKS, DEB!!! Hopefully, you will be the first of many 😉
- Spasticity (whatishyponatremia.org)
- 5 Reasons You’ll Love Sea Salts More Than Epsom Salts (bellasugar.com)
Thanks Sarah, I am hoping my story will offer some insight into the future if nothing else. Not all cases are as bad as mine was. But they should not be forgotton. Any experience with CPM/EPM is valid! When I was in my coma, before my first cardiac arrest they asked my husband if I had a DNR. I did, but he told them no. Still to this day I think abotu the decisions he had to make those first few weeks and wonder how he did it. I am lucky in that respect. I have a husband and 2 children who love me and want me here no matter what I am like. Yes, I have lost most of my other family and friends. But, MY immediate family will always be here. That I do know. I don’t knwo what the future holds and sometimes I wish I did, but then I think no, I really don’t wnat to know. But, I figure, it can’t get any worse than it did. Also, now I have the tools to make things not so bad. Technology is only getting better, and in time they will find a cure for spasticity. maninly because it effects MS patients, but I, we will reap the benifits. Sorry, for the typo’s, today is a bad day. Love to all, Deb
I’ve been in a funk the past few weeks. There are days when I just start crying because I am not the same person I was a year ago, and that wasn’t a good place in my life either, but it wasn’t this bad. I am so frustrated in how much more I still have to recover. And then I read everything you have recovered from and how far you have gone, and it gives me hope.
It also gives me a realistic picture of what to expect. There are going to be bad days, but you can still live through those bad days. And everyday that you get to see your children live their life is an experience that I am grateful for.
I think we’ve been given insight that most people take for granted. At the same time, the cross that we have to bear for that understanding is so heavy.
You are the first one to share your story here, but I’ve had the same experiences and others I’ve talked to have lived with the same experiences.
I’ve been seeing a psychologist to help me work through all of these changes for the past 6 months. I can’t say that the relief that I get is long lasting because I don’t usually remember what we talk about, but I have to say I feel relief and understanding when I go and see her.
I get a lot of help from my cognitive therapist who totally gets what I’m going through. It’s a relief to see her. I she seems to hit the nail on the head every time, and I think I cry every time I go in there.
I think I”ve lost my focus on where I’m going with this, but I really appreciate your insight, your experience, and your sharing. I hope it brings you a source of relief too.
Have a great night!! And thank you again 🙂