So my Doc finally increased my Tegretol, am now on 400mg twice a day. This is double what I have been taking and while I am sure it will help the pain I am not so sure about what this does to my mind.
I think about what I want to say and for some reason I cannot form it into words, I can never remember anything these days. My hubby even noticed the difference. I mean every time I go to say something I am stopped because I just can’t form my thought into words, and now she has doubled the dose it’s only going to get worse. Is this normal? If there are others out there taking Tegretol that have this side effect please let me know. I looked up the side effects online and while there are plenty listed, this isn’t one of them.
I had an episode the other day while we were having dinner with our kids and we were eating and watching slides from our missionary days and all of a sudden the pain hit me so hard I began bawling in front of everyone and I couldn’t even speak. I just kept pointing towards the bedroom. Of course no one knew what I was trying to point at, but now they all know this is where I keep my pain meds and they also know if this happens again they are to just run it and grab me one.
How embarrassing though cause our son Corey brought his friend Renee who we have met before but still, just to start bawling and no one knew why. My husband Andy knew instantly when I grabbed the left side of my face in agony. I wish this would just go away and leave me alone!!
I echo Jackie's observation. Tegretol is often associated with word-finding difficulties, compromise to short-term memory, and occasionally disturbances to cognitive thinking and reasoning. I've never talked with anyone who was outright nuts on this med, but I've certainly spoken with folks who made a life style change toward "delightfully eccentric".
For future reference: there are several authoritative sites on the web for drug side effects information. One of the better one s is http://www.rxlist.com. You can look up literally thousands of medications there, to see how they are used, in what dose ranges for what disorders, and with what side effects or drug interactions.
I know exactly what you are experiencing. I was on 600mg of Tegretol a day and the pain was so bad it was increased to 900mg, then to 1200mg and now I am on 1800mg. I walk around like a zombie and what i want to say is not what i actually say. I stop mid sentence because i cant remember the word i want to say or my thoughts are not matching with the actual words coming out of my mouth. I was writing a card to my niece early and when i read over it, it didnt make sense at all. Thats when i realised i have no control over the situation. I did ask my doctor about it and he said it was obviously the medication. Its either suffer with the pain or this....i dont know what to do!
forgot to mention that i am also getting involuntary hand movements, very minor ones but enough to notice and be concerned about. this only started when i increased the medication. Have you experienced something similar?
The involuntary hand movements I haven't heard of from other patients. This is something that may bear reporting to your primary care provider. The symptom may also be observed in motion disorders like essential tremor. Be guided by your doctor concerning its significance.
I also wonder if it isn't time for your doctor to try you on some medication other than Tegretol. There are other alternatives, among them Neurontin and Trileptal. These latter drugs are metabolized outside the liver and tend to have significantly fewer side effects or toxic effect risks, for many patients.
Oh Ali, I'm soooo sorry about the incident the other day. This brought tears to my eyes. I feel bad for you....
I had the fuzziness pretty good. and still do but not as much. I have been on the 800 mg daily dose since July 6th and was on 600 daily since June 6th and for the last two weeks the fuzzy stuff has gotten better. I do have the slight hand jerks in the last week or so, but not too often, and usually in evening when I am still for the day.
Wishing you best of luck with this new dosage. Hang in there. Lotsa hugs, Min
Thanky you Richard for your reply and certainly for the information. I will certainly have another chat to my GP.
Richard A. “Red” Lawhern said:
The involuntary hand movements I haven't heard of from other patients. This is something that may bear reporting to your primary care provider. The symptom may also be observed in motion disorders like essential tremor. Be guided by your doctor concerning its significance.
I also wonder if it isn't time for your doctor to try you on some medication other than Tegretol. There are other alternatives, among them Neurontin and Trileptal. These latter drugs are metabolized outside the liver and tend to have significantly fewer side effects or toxic effect risks, for many patients.