Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Pity Party:

I’m almost at the one year point in recovery. It’s been a long year.

Part of me believes that I should be celebrating everything that I’ve accomplished and lived through in the past year. I probably shouldn’t be here, but part of me hates this “new” me. I am not the same person I was a year ago, and it’s so emotionally and physically distressing.

Frankly, I want to sit down and cry.

I’m sure my cognitive therapist, Angela, would tell me that’s depression, but I think it’s more human nature.

I’ve LOST something, and that something is HUGE. I’ve lost the direction of where my life was going, and I haven’t been able to figure out where this “new” life is taking me.

I’m not going to try to deny that my life wasn’t fantastic before my brain injury. I was sick then, and my life was incredibly hard, but I was able to live with those health issues. I was able to take baby steps towards my goals in life.

After I was told that I had the pituitary tumor and it could be removed, I had a solid belief that my life and health would get better. I wouldn’t be able to regain my 20’s, but I could LIVE through my 30’s.  I could manage the illnesses, and I wouldn’t get worse from that point.

Living through my life with my prior health issues was like climbing Mount Everest. Living through my life after the brain injury is like climbing Mount Everest in roller skates.

It really feels fruitless, and in this current state of mind, I would have to agree with Angela, I am depressed….SUPER depressed.

You might be wondering, why in God‘s name are you depressed right now?? You’ve made it soooo far. You aren’t in a wheelchair. You are able to do things in your life that some people are never able to do: walk, talk, eat.

All of those things are true. On one hand, I do feel incredibly blessed, but on the other hand, I feel horribly “picked” on. Why does my burden seem so much heavier than others?

I wonder if Christopher Reeves felt the same way, or Michael J. Fox? I mean, they were both in the prime of their lives when they developed incurable, life long issues, but unlike me, they turned their health catastrophes into platforms to advance medicine for spinal cord injuries and Parkinson’s disease.

Do I dare compare my life to theirs?

I don’t know enough about either person to know if they lived through anything close to what I have, but where I’m floundering and they succeeded: they turned their lemons into lemonade.

Why can’t I?

I know several people now that have CPM/EPM. I know that NFL players are killing themselves over their brain injuries.

If my goal in life was to help other people through becoming a doctor, then why I haven’t I been able to shift gears and find purpose in making hyponatremia and CPM/EPM household names? Help those with CPM/EPM and other forms of brain injuries?

I’ve spent over a month wallowing in pity, feeling more and more distressed over how my life has changed, and I would be lying if I said by the end of this post that I will spontaneously snap out of my depression and tomorrow everything will be better. I only hope that by tomorrow, I can start to develop new strategies and find help for myself that I can still help others.

All parties have to come to an end at some point, even pity parties.

 

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21 thoughts on “Pity Party:

  1. michael52006 on said:

    Sarah
    You are a shinning star that is still very bright and lights up the nights sky. We all have bad days and we with CPM/EPM Have bad years now. Your year by your standards was not what you wanted or used to but you will do just fine. You are still smarter then most people I know. What you have over them is understanding and compasion. I wish I could find a Neurologist and family members with your understanding and compasion. My mother read my last post about my neurologist and sent me an email stating that I totally embarressed the family with my whinning and how I really am not sick because I don’t look sick. So keep up the good work. Please. You are saving my ass.

    • I’m sorry Michael. I know it’s extremely discouraging to live our lives and not have those we love understand what it is we are experiencing. That’s the true shame with brain injuries. It’s why NFL players, some of the most athletic, strongest men in our country, are committing suicide.
      It’s incredibly hard when it’s happening to “us” and our lives, but there’s a purpose behind everything we go through, and I believe this is no different.
      Try to remember that ignorance is the absence of knowledge. Your mother is ignorant of your situation. It doesn’t mean she can’t learn more about this injury. I’ve recently realized that there is a feature that allows you to print the post, so I activated it, and you should be able to copy and post these to your mother or friends or family or you can print them. Thank you for your support and your postings. You do have friends who understand. Hopefully, in time, the number that understand will increase. God Bless 🙂

  2. I hear and understand you both. I am going into my 4th year post cpm/epm dianosis. I still flounder each day. I keep trying each day to do SOMETHING, anything, but don’t have the energy to do much of anything. I look at all my old friends (see them on facebook) they are all extremely fit and living, really living! Before this happened that was me! It pisses me off, makes me say the one thing my kids say that makes me angry (IT’S NOT FAIR) NOT FAIR, NOT FAIR!!!! On the outside I try to stay positive and happy, but on the inside I am slowly dying! Part of me wishes my husband had not let them do CPR when I had one of 2 episodes where my heart stopped in the hospital. I would never commit suicide, to me that is a cowards way out. But many days, I wish I could just lay down and die. I think, maybe I should start a company for disabled adults who either don’t “qualify” for help or are too stubborn to. I think I should be doing public speaking about hyponatremia. But, I don’t have the energy for either! Every morning I do my yoga, try to walk. But, I am still unable to do anything else!!! Next week I will be starting with a therapist. I am hoping having a outside party to listen to me will give me the chance to say things I have wanted to say for SOOOO long! All for now, just wanted you 2 to know I hear you, I get you. I know I don’t write very often, but it’s because I am sick to death of this disease! Have a great day, enjoy the little things. Deb

    • Deb,

      I’ve only had this injury for a year, and I feel those things, so I applaud you for your strength and courage. It isn’t fair!! It’s just not. I already feel the sting of having friends and family not want to speak to me. That said, I’ve only had CPM/EPM for a year, but I’ve been sick for 8, and I know that they just try to avoid having me discuss my health issues.

      I’m sure that will change when they are facing some of the same problems.

      I know what you are talking about regarding energy. I used to work 10 hour or more days, and now I’m working five or less. No one understands that this is challenging for me. I’ve been really lucky because for the past 6 months, it wasn’t that busy at work, so I had a lot of breaks between phone calls, but this past week, it’s been extremely busy, and I’ve had to work the full five hours and have had back to back phone calls. By the end of my five hours, I am mentally and physically exhausted. In other words, I look fine, and I do my job well, but it takes everything I have to do it. People believe that because I can do that well, then I should be able to work longer.

      They also don’t understand that being sick is a part time to full time job. I spend at least 5-10 hours a week going to doctors, therapy, getting prescriptions, and calling insurance companies. That’s exhausting too.

      I feel the same way; there are so many days that I wish I could just lay down and die, but then I look at my kids and I dream of the things that I want to see them do.

      I don’t know what God’s plan is for me or my life, but I have to believe that even this horrible thing has a purpose. Thank you for sharing with me. Trust me, it’s unbelievably helpful to hear from others who are living with this. It’s cathartic to know that I am not alone, even though I am sorry to know that others share my fate.
      God Bless, Deb, and continue to stay strong.

      • I hear ya, I used to work 10-12 hours a day. I managed 6 group homes I was on-call 24/7 Had to be a quick thinker. Since 2008 I haven’t worked. It’s all I can do to keep up with the house. I have even hired a cleaning lady who comes in every 2 weeks to help out. Before 2008, in 2006 I had brain surgery. had a tumer the size of an egg on my frontal lobe, it was benign. They told me after that surgery that I would prob not be able to put in the hours that I did before the surgery. But after 3 months of recooping, I was back at it full force. I loved my job, still miss it very much. I miss the way it felt to be needed. I too have kids, I think they are what has kept me going for this long. They are 16 and 14. Both boys, much work. LOL! I wish I new what Gods plan for me is. I keep asking for signs, I don’t know if i will have the energy when I finally figure it out. Again, I am sorry I don’t post more. Deb

      • Well, you’re doing more because you are commenting. Here’s the thing, doctors really don’t seem to understand that these issues are long lasting and on-going. It’s probably because they don’t want to be held responsible in legal action, so if they can make it appear that everyone gets better and symptoms don’t get progressively worse, then they won’t be held responsible.

        So, it’s important for us to document what’s happening to us. Can you tell more about how you’ve been affected? Have you seen any of your symptoms progress or other symptoms begin after the initial injury? For instance, I’ve developed cramping in my hands, feet, and hips. That was not a symptom I had initially. I had this rotating pain and some locking of my fingers, etc, but it wasn’t this horrible cramping. When I describe these issues to my doctors, some will say it has nothing to do with CPM/EPM. They say that symptoms don’t develop after the injury has happened because the hyponatremia is not ongoing.

        Not all doctors believe this, but there are quite a few. So, if you can document your experience, then it will help others who follow in our footsteps, and we can bring awareness to the doctors that treat us.

        Thank you for responding at all Deb. Trust me, I don’t get a lot of feedback, and it helps to know that I am doing something that helps at least a few other people.

        Have a great day 🙂

  3. And one more thing, As far as Reeves and Fox go; They have enough money that they can have all the therapists they need. It is easy to be positive when you have as much support as they probably had/have. In the begining, I was positvie too. Cause I could SEE the change. It was visible. I had many people there cheering me on. Now, most have walked away, sick of me being sick. You can’t SEE and injured brain, it’s hard for most people to understand the damage is STILL there. Most of the physical signs are gone. I still have some, but people are used to them. So, they don’t understand why I can’t do many of the things I used to do. Sucks I know, but that is my new reality.

  4. 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 “Fuck 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

    • Deb, you’re story is so inspiring and heart wrenching. I am extremely lucky because I didn’t go into a coma, and I wasn’t paralyzed. It might sound a bit exaggerated, but there were times where I felt myself “freezing”, but I’m guessing it was more from the fatigue than anything. With me, I wasn’t able to sleep for several days after I started experiencing symptoms.

      It was such a scary time. I didn’t know what was going to happen next.

      My cramping followed after my initial injury. I had this strange rotating pain. I would feel pain in my thumb and then literally seconds later there would be pain in my foot, and it just kept circulating. I had a continuous headache that just wouldn’t stop for weeks. I actually think it lasted for two months straight!

      I am having the cramping now, not to the extreme that you had it, and mostly in my hands, feet, hips, etc. It’s like having writers cramp all the time in various parts of my body. Even now as I type, it’s hard because my hands keep cramping.

      My tremors can become bad. It’s a slight tremor all the time, but I posted a few videos of when it becomes more severe. Are your tremors like the type that I have in my videos? I’ve had doctors tell me that it’s purely coincidence.

      The most exciting thing I read about your situation above, was about your joints. I’ve been having a similar issue. All of my joints have been popping. It can be painful, definitely causes aching, but it’s frustrating because I had no idea why they were doing it. I thought it was probably related to CPM/EPM because it started after it, but I also wondered if I was having more autoimmune issues. Most of my autoimmune values came back lower in this recent round of testing, so I was a bit baffled. There’s not much in the literature that describes this type of issue either. When did this become an issue for you?

      I’ve also developed the lazy eye. It’s only slight, but I noticed it recently in a picture. My doctor mentioned it too, but I thought it had gone away. I guess it hasn’t.

      I too have issues cooking, which is something I LOVED to do. If I try to chop vegetables, stir pots, etc, my hands cramp horribly. I can’t even wash dishes or fold laundry without problems.

      You have NO idea how grateful I am that you’re sharing your story. I swear, at times, I feel like I’m not only alone in this, but that I’m completely mental. I’ve had some doctors look at me as if I have three heads. AND the research literature doesn’t follow patients long term. It seems if you aren’t on a ventilator for the rest of your life, they treat you as if you’re perfectly fine, and that’s just not the case.

      I HATE to hear that you have so many issues, but I am also so relieved to know that I’m not a complete basket case.

      Please, please, please…treat this site as your site. Send me your story, etc via email or post it here, and I will start creating a section for you, about you and what you’ve gone through. You’ll be helping others who are facing the same hurdles and have no idea what’s going to happen next. I think you are the longest surviving CPM victim that I know of. There’s also Hosmer, but I can’t remember how long he’s survived.

      We have to stay strong for one another because living this life alone is dismal.
      Lots of Love!

  5. 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. 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 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. All for now. Be back soon, Deb

  6. Sorry, missed one of your questions; My joints have gotten progressively worse since I started walking. The more I move the worse it gets. I have found the only excercise that doesnt make it worse is swimming. If I walk alot my joints start to give out.

  7. 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.

    • It’s good to hear from you 🙂

      I have issues with everything when it comes to my joints. For instance, this morning, I rolled to my side to get out of bed, my shoulder and elbow joint both popped. When I stood up, the joints in my feet started to pop, when I started walking my knee, popped. When I stretched out my hand after typing last night, the joints in my hand cracked.

      I’ve been weight lifting for a very long time, but I’m finding I have more and more weakness in lifting weights. I find that when I do try pulling heavier weights, my joints pop and I have a hard time controlling the weights. Even after lifting less weight, I find that after lifting, my muscles turn to jello, so it’s harder to control them. I lifted weights yesterday after not doing it for awhile. I found that not only was I not able to lift as much, but my muscles “locked” after awhile. They became as stiff as a board, so I stopped. Last night, I was laying in bed, and I was having so much pain in my joints. I didn’t realize what was going on because normally I have pain in my muscles when I haven’t lifted for awhile, but this wasn’t the case last night. I’m a bit sore in my glutes, but it’s really my joints that are hurting.

      That said, I had my creantine level come back low last time they checked it. I did what you said with making an “o”. I had absolutely a perfect “o” in my left hand, but I was really surprised to find that my right hand forms the egg shaped “o”. I can force my right hand to make the “o” shape, but it doesn’t come naturally, and if find that my thumb tilts at an odd angle.

      My tremors and cramping become worse with activity too. For instance, if I’m holding something in my hand, say my cell phone to take a picture, I’ll experience severe pain in my muscles within 2 to 3 minutes. At that point the shaking becomes quite severe. There are times that I get the shaking without the cramping, like I’m trying to eat dinner, driving, typing, etc.

      I haven’t been given any medicine yet for the shaking. My doctor is trying me on an anti-medication, but I just started taking it last week, so we’ll see how it goes. Right now, it just makes me tired.

      With me, I’ve had symptoms that have persisted since the initial injury, but improved. There are other symptoms that became apparent a few weeks or months into the injury. So, I’m guessing that symptoms run the course like this: You see a course of initial improvements. The improvements become less noticeable and you don’t see any real changes, but as time progresses you begin to experience a decline in health. Is this what you’ve experienced?

      I too have ongoing issues with memory, concentration. I have issues with reading, where I can read the words, but I can’t understand anything that I’m reading. On the flip side, I have the same issues with hearing. I will have periods where I can hear a person speaking, but it’s like listening to the teacher from Charlie Brown.

      The memory thing is beginning to play a huge issue in my life. I’ve been late on several bills because I thought I paid them or forget about them. I’ve tried to put in fail safes, like adding reminders to my phone and the calendar on my phone, but if I don’t do it right that second, then I forget about them. It’s really stressful for me because I’ve always had awesome credit, and I have the money to pay the bills, but I just forget to do it, or in some cases I’ve paid them multiple times and end up having the credit card company owe me.

      Recall is bad for me as well. For instance, I will have absolutely no recollection that we had a conversation, but as soon as my significant other says, we already talked about this, I remember, but then I become frustrated and angry that I didn’t remember it in the first place.

      But what can we do? It is frustrating. It isn’t fair. I hate what’s happened to me, but there isn’t much that we can do about it, except prevent other people from living through it. If you really want to help me out, please write letters to people like Sanjay Gupta and Dr. Oz when you have time. I’m trying to bring media attention regarding this through them. I’ve written a few letters to them, but I think if more people make the attempt, they will be more willing to listen.

      Keep posting Deb. You aren’t alone in this! Hopefully together we can make a difference:)

  8. 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. 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. 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

  9. Here is some info on spasticity and how it effects your body;
    Spasticity is a muscle control disorder that is characterized by tight or stiff muscles and an inability to control those muscles. In addition, reflexes may persist for too long and may be too strong (hyperactive reflexes). For example, an infant with a hyperactive grasp reflex may keep his or her hand in a tight fist.

    What Causes Spasticity?

    Spasticity is caused by an imbalance of signals from the central nervous system (brain and spinal cord) to the muscles. This imbalance is often found in people with cerebral palsy, traumatic brain injury, stroke, multiple sclerosis, and spinal cord injury.

    What Are the Symptoms of Spasticity?
    Increased muscle tone
    Overactive reflexes
    Involuntary movements, which may include spasms (brisk and/or sustained involuntary muscle contraction) and clonus (series of fast involuntary contractions)
    Pain
    Decreased functional abilities and delayed motor development
    Difficulty with care and hygiene
    Abnormal posture
    Contractures (permanent contraction of the muscle and tendon due to severe persistent stiffness and spasms)
    Bone and joint deformities

    How Is Spasticity Diagnosed?

    Your doctor will evaluate your medical history in order to diagnose spasticity. He or she will look at what medications you have taken and whether you have a history of neurological or muscular disorders in your family.

    Several tests can help confirm the diagnosis. These tests evaluate your arm and leg movements, muscular activity, passive and active range of motion, and ability to perform self-care activities.

    How Is Spasticity Treated?

    Treatment for spasticity may include medications like Lioresal, Zanaflex, Dantrium, Valium, or Klonopin. Occupational and physical therapy programs, involving muscle stretching and range of motion exercises, and sometimes the use of braces, may help prevent tendon shortening. Rehabilitation also may help to reduce or stabilize the severity of symptoms and to improve functional performance. Local injections of phenol or botulinum toxin may be used to relax specific muscles. Surgery may be recommended for tendon release, to cut the nerve-muscle pathway, or to implant a baclofen pump (intrathecal baclofen therapy).

    Learn more about baclofen pump therapy.

    How Painful Is Spasticity?

    The pain associated with spasticity can be as mild as a feeling of tight muscles, or it can be severe enough to produce painful spasms of the extremities, usually the legs. Spasticity also can cause low back pain and result in feelings of pain or tightness in and around joints.

    What Is the Outlook for People With Spasticity?

    The outlook varies per person. An individual’s outlook depends on the severity of his or her spasticity and any disorder associated with the spasticity

    • Hi, Deb.

      Sorry, I didn’t respond to your post before this. I swear, I don’t know what’s wrong with me these days. I think I’m on a different planet, and if I’m not depressed, well, then I’m at work or not doing anything of merit.

      My doctor has me on this new drug, Trileptal (I think). It starts with Tri..anyway, it’s been making me really loopy. I can’t remember much of anything normally, but this drug is making it extreme.

      I feel like I’m high. I’m extremely tired. I have a horrible headache and nausea, and it seems like I’m not getting anything done.

      Anyway, I am going to take your comments posted here, and I’m going to add it to my blog. Let me know if that’s not okay with you, and I will take it down.

      I am also hoping that I can take your comments that you’ve posted recently and add it to my section about other’s experiences.

      I really hope that this section will develop over time, and I will be able to get more people to share their experiences with CPM/EPM or even just hyponatremia.
      Trust me, I don’t think doctors understand the full scope of what having this means, and if we get more people who have it describing that their experiences are the same, maybe it will further research in these areas.

      One can only hope. 🙂

      Thank YOU so much for posting, and please feel free to continue to contribute as you like.

      Have a great day!

  10. Get off that drug!!!!! That is one of the drugs that caused my low sodium!!!!! The things you are experiencing are the same as I had before my sodium went down. I would go to your doc on Monday, and ask to be switched to Primidone. I take 100mg twice daily and my tremors are some what better. Please at least go and have your sodium drawn and be sure it’s not getting low again. Sorry to be so blunt, but that drug scares me to death!

    • Wow, that’s so scary. I had no idea that’s what caused your hyponatremia. He’s already had me up to 900mg in a week’s time. I went back down to 300 mg because I was getting so sick. I couldn’t stand it any more. I thought I needed more time to adjust back to the 900, but I felt so weird. Thank You for letting me know. I will stay at the 300 and then ask for them to check my sodium and then consider putting me on something different.

      It amazes me that there are so many drugs out there that can cause hyponatremia and NO One knows about them!!
      Have a great night!

  11. OMG, they had you on 900mg??? What the hell were they thinking! I will bet your sodium is low again. So, Here’s my advice; Get a container of Sea Salt (make sure the ingredients are just sea salt) Then add 1 part sea salt to 2 parts water and drink. It is going to taste terrible, but hopefully will raise your sodium back up. Then eat it on everything today. Hopefully you will start to feel better. Trileptal is not “known” to cause low sodium, but I can tell you from experience, it does! I was only taking 300mg and my sodium tanked, My heart sank when I read what you were taking, Hoping you feel better soon:) Deb

    • It’s truly miraculous that I’m not in the hospital right now. I found this website that discusses that it causes hyponatremia. I also found information in other websites that says your doctor should describe what liquids should be used when taking them. Go Figure!!

      http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/Trileptal#.T944PbVYu8A

      This website mentions it too. I can’t believe that I missed that. You trust your doctor to give you things that are not going to kill you or make you sick, especially when you’ve already experienced a significant injury. Thank you for letting me know. It’s really scary.

      http://trileptalsideeffects.net/

      Have a great day, Deb.

      Oh, by the way, how long were you taking it before you developed hyponatremia?

  12. I was on them for 3 months, during that time I was having seizures, but it was because my sodium was slowly declining. I have 4 sets of labs that were done during the time I took it. All of them show the slow decline of my sodium. And it didn’t occur to the doc’s that it might be the drug. They kept telling me and my family that i “just needed to get used to them.

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