I have been taking Trileptal for 12 years now for bipolar disorder. WIthin the past 7 months, I have been wanting to stop the medicine because it stopped working. My psychiatrist approved. Two times this year, I have attempted to ween myself off the drug. Both times I have failed because I have experienced withdrawal symptoms. In order for me to feel normal again and stop the withdrawal symptoms, I resumed the medicine and a week maximum, I felt fine. The second time in late March, I attempted to ween myself again, but again experienced the withdrawal symptoms, a few days later in early April. Ever since I have had trouble with muscle weakness of the arms and legs only where they feel like rubber, muscle stiffness, muscle spasms and balance issues where I can walk without fear of falling down but feel tipsy. I resumed my normal dose of Trileptal thinking it would help my symptoms. This time, it didn't work. So for 3 months now I have been dealing with muscle and balance problems. After researching this online, I am fairly certain, I am having an issue with the cerebellum because it is responsible for muscle and balance movements. I recently saw a neurologist within the past two weeks. He performed an examination. He said he didn't notice anything abnormal. He did recommend I take either Valproic Acid or Lamictal to help with my symptoms but after talking with a pharmacist, he said that neither Valproic Acid or Lamictal will address my muscle weakness. But for some reason I didn't think he understood my problems with the muscle weakness at the time. Recently I thought it could be an electrolyte imbalance that is the culprit, but was tested and levels were fine. I am hoping someone here would know what could be causing these symptoms because I have had to endure this muscle issue for three months now and becoming very concerned something serious could be going on. Thank you for your time
I understand you can't examine because it's online but wanted an opinion from a neurologist. The thing is I don't believe he really understood my muscle weakness symptoms when I saw him. If I can't convey those symptoms, he really can't help me.
The balance issues are very hard to detect because I can walk fine without falling over but feel tipsy. The muscle weakness in both arms and legs are the most prominent symptoms I have. Both arms and legs feel very weak and can best be described like rubber, Jello.
It's been three months now feeling like this and have no clue what to do about it. I can't function like this anymore. I will attempt to see him again soon because I am so concerned that Trileptal did something to me because it all started days after commencing the weening process. I don't want it to be anything serious, but three long months experiencing the muscle weakness will cause people to think otherwise. I must be proactive.
Okay. I am almost done. A side effect of Trileptal is ataxia. What are the chances that it could be Acute Cerebellar Ataxia?
Thank for your reply.
There is really two types of ataxia that can occur with trileptal. One is dose related as from toxicity, and can be mild imbalance. The other, an Acute cerebellar Ataxia is not going to be a situation where you are walking into his office, or walking anywhere for that matter. It is not subtle. Another side effect is hyponatremia, low sodium, that can make you feel fatigued, but that should resolve as you titrate off the medication, so it does not fit your description of the problem.
Thank you for your time and response. I appreciate it.
Based on the information I provided you, if you could diagnose my symptoms online without conducting any type of blood tests, brain scan, etc, I know it's not feasible because you need to examine me in person, what would your general diagnosis be?
When I saw the neurologist at the end of last month, I believe I didn't convey how I felt as it pertains to my muscle weakness symptoms, so that's why I am hoping to see him again soon. My balance problems are barely noticeable that I can walk pretty without any issues, except I feel a little tipsy to the point where I am feeling kind of drunk. He's the only neurologist in the city I reside in though, so if I need extensive tests or another opinion, I have to travel out of state
My symptoms have been the same the entire time. But I do have an underactive thyroid for over a decade now. The last time it was checked, it was low and my doctor had to increase the dose of synthroid from 50 micrograms to 75 micrograms, but this was months ago and should feel better by now.
I have one more question for you tonight. Since I have been feeling like this for three months now but know that ultimately you can't tell for sure without a brain scan, but is it possible this problem might be permanent? I know I am thinking worst case scenario but I have to be very concerned about my symptoms and how long they have lasted.
I thank you so much for helping me out with this problem online, doctor. I am very appreciative that I can converse with a neurologist about my problem even though it's in cyberspace.
I have one more question, then you are free of me. If I had those tests you recommended in an earlier post and a brain scan, would that be enough to diagnose my condition or would I need more extensive testing performed?
I intend to rate your help the highest rating of five if you must know.
I realize I am taking up a lot of your time and feel bad about it but the brain scan obviously would rule out the much more serious problem I could potentially have. To be honest, since I have been experiencing these symptoms for so long, I haven't been able to sleep or eat much at all. I am hoping this issue is simple to rectify and nothing serious so I can go back to a normal life.
Maybe so, but a doctor will need to order them. And if the blood tests come back negative then I'll need a muscle biopsy or something more extensive. And might need to travel out of state which I am not really looking forward to. But if it's necessary, I guess I have no choice. I just want to get to the root of the problem sooner rather than later.
So you really don't mind me taking up an exorbitant amount of your time then?
One more question for tonight: If I had a biopsy done, it could diagnose that issue I am having but wouldn't address my slight balance issue, correct? The blood tests and CAT/MRI scan would do that, correct?
Thanks again, doctor.
This will be the last question I ask of you, but if I want, I can consult you again in the future after I undergo tests?
As a neurologist, your definition of something serious would include an autoimmune disorder like Parkinson's or MS, maybe a lesser autoimmune problem or damage to the cerebellum? I really wish I had some assurance as to what is wrong with me because all I can think about during the day is what might possibly be wrong with me but unfortunately only time will tell. All it will do until that happens is cause me to worry because so far in my life, this is the biggest health problem I have had to deal with mainly because it deals with the brain.
This is my demeanor unfortunately. And it doesn't help I am bipolar and have a tendency to worry especially when it comes to health issues but this is the biggest health problem I have had to deal with so far. It just
scares me because this has been lingering for three months now. I hope you understand.
Thanks again for your medical advice. I will get back to you in the future to inform you of my current status.
I thought I am being transparent with my symptoms to begin with. That's why I am here. For a second opinion until I see my neurologist again.
The biggest reason I have to worry is that these symptoms sound like they affect the cerebellum and started the same time I experienced Trileptal withdrawal so maybe that drug caused me to feel this way. And been a long term problem that hasn't
I am possibly the most difficult person you have dealt with on this website for advice and apologize if that is the case.
The muscle weakness part did come up but I believe he was more focused on the other symptoms he deemed more serious like the double vision for instance. The double vision has been tied to the Trileptal. So at the time I was under the impression all of my symptoms were tied to that drug due to the withdrawal but now I have been back on it for a month now and other symptoms like the muscle weakness, tightness especially in my legs and slight balance problems would have subsided by now because when I had these issues in the past from attempting to get off the drug, resuming Trileptal solved them all. Plus I didn't get much time to really address all of my concerns because of time constraints. I hope you understand now.
Thank you again for your support. I'll finally be relieved if and when I am diagnosed so I can stop worrying about my health during the day.
I kind of "promised" that I wouldn't contact you again until my results of my MRI were known. I have to wait until this coming Monday before those results are known because his office is on vacation which prolongs the agony for me not knowing. But my neurologist suggested before he ordered the MRI my problem could be attributed to Lyme Disease. To be honest, that thought never crossed my mind until I remembered in January we baby sat my sister's dog for a few days and my sister's dog had a problem with ticks. I have no recollection of ever being bit by a tick and the fact I have never noticed a bull's eye rash on any part of my body didn't concern me at the time. All I am asking, is there a possibility I could have Lyme Disease and not know it?
Well, I obviously don't know much about Lyme Disease. He was the one that brought it up and was thinking that it could be a possibility because my sister said she has found ticks on her and would have thought they came from her dog.
I have not had a high fever of around 102 since I had the flu years ago so I guess it can't be Lyme Disease then.
I am trying to think of something recent that I can attribute these symptoms to and the only thing I can think of unfortunately is Trileptal.
My biggest fear is I will be subjected to a battery of tests and won't be given a diagnosis because they can't pinpoint what is causing my symptoms. I hope my doctor will be aggressive, dedicated and thorough from here on out because I need to know what is wrong with me sooner rather than later.
I will get back to you after Monday.
I got my results for my MRI today and said everything is normal. But the strange thing is they were over the phone from the receptionist and not in person from the doctor. Basically she told me he didn't think my problem is neurological and wanted me to see my doctor about it. I am not able to see my doctor until August 15th which is 3 weeks from now because they are full of other appointments. If my doctor ordered those tests you recommended and everything came back normal, I would need another neurologist to conduct a muscle biopsy and/or EMG, that would entail seeing another doctor elsewhere? My main question for you is what are the chances this problem is drug induced, if so, is it easy or difficult to diagnose and in your opinion, what potentially would be a treatment for it if at all? If you recall, this problem manifested itself around the time when I commenced the Trileptal weening process in early April. Or do you think this could be a metabolic issue because as I mentioned earlier I have an underactive thyroid and recently my dose increased from 50 micrograms to 75 micrograms a few months ago but since then my levels were checked and was normal. The good news, if any I am not getting any worse. The bad news is I am not getting any better.
The reason why I am so anxious is due to the fact I have felt like this for four months and am not getting any better. I am not sure what you are attempting to convey here. Are saying that you aren't sure what it could be and wait until I see my doctor about it? And you aren't sure that it could be drug induce either? Please elucidate if you can.
So you are saying this is psychosomatic? The anxiety is tied to my symptoms. Not the other way around. I feel that this is warranted at this point. It's quite evident now. Had I not divulged that I am bipolar, maybe you would view me differently. Maybe not. After reading your latest comments, I feel like I am being discriminated. But I did decide to pay you after all for your advice and could have said at some point you were done with me. I am a big boy and can take it. My symptoms are real and I wouldn't be asking for another opinion if I didn't have something wrong with me.