Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
I've read that tegretol can cause memory loss and I am wondering how it started for you guys... Did it come on gradually? Soon after starting tegretol or on down the road?
I've been on tegretol since March & have not adjusted my dose since May. Since mid-august or so I've been having memory issues, which are getting worse. At first it was just little stuff but now it's more frequent & bigger stuff. Now instead of just misplacing keys or walking into a room & not remembering why I'm there, I lose my train of thought all together, can't find the correct words, find myself confused at the littlest things. It's a nightmare. Yesterday I drove for approx 3 miles down the parkway in the rain wondering why I couldn't see. Turned out I never turned the windshield wipers on! I run the same load of clothes thru the washer multiple times bc I forget I had anything washing. I forget that I'm cooking things, all the time. Earlier this year I was also having issues with finding the right word & words coming out in the wrong order.
All that said... I've also been dealing with possible MS issues. Have 6 lesions, negative LP & evoked potentials. Yet my drs wont say "no MS for sure". The only other thing that could point to an autoimmune thing is that I've had bloodwork done several times over the year looking for "ms markers" all of which came back elevated at different levels.
So now I'm just wondering... is this tegretol or could it be ms-related?
I've been on tegretol since March & have not adjusted my dose since May. Since mid-august or so I've been having memory issues, which are getting worse. At first it was just little stuff but now it's more frequent & bigger stuff. Now instead of just misplacing keys or walking into a room & not remembering why I'm there, I lose my train of thought all together, can't find the correct words, find myself confused at the littlest things. It's a nightmare. Yesterday I drove for approx 3 miles down the parkway in the rain wondering why I couldn't see. Turned out I never turned the windshield wipers on! I run the same load of clothes thru the washer multiple times bc I forget I had anything washing. I forget that I'm cooking things, all the time. Earlier this year I was also having issues with finding the right word & words coming out in the wrong order.
All that said... I've also been dealing with possible MS issues. Have 6 lesions, negative LP & evoked potentials. Yet my drs wont say "no MS for sure". The only other thing that could point to an autoimmune thing is that I've had bloodwork done several times over the year looking for "ms markers" all of which came back elevated at different levels.
So now I'm just wondering... is this tegretol or could it be ms-related?
I am so sorry about your memory loss issues, and all of your pain. Yes, I have heard that tegretol causes memory loss, but I cannot say that I have experienced this. I take 400mg. every day, and have for 3 years.
Remember that you are under LOTS of stress and worry now. Your mind is more than a little bit distracted, and you are probably also a little upset (or alot). These things can make things worse. Maybe the memory issues will get better as things settle down some. If not, for sure let your doctor know, and he can put you on something else. Praying for you
I was on 500 mg of tegretol and just recently had to increase to 600 and still having pain. What amounts of tegretol are you all on? Do I have room to increase the doses before I have to start thinking about surgery? When do you decide that you want something else besides medicine. Just feeling anxious and a little down this week.
Thanks,
Sandy
So far so good, no pain and side effects are minimal. One bad nght of bad agitation freaked out my family, I'm usually very calm. The occaisional memory loss I've handles well with sticky notes and voice messages to myself on my blackberry. My work has no clue.
If I have to increase my dose again, I don't know.
I'd condsider an operation if I could guarantee that pain never comes back.
Ciao
But, there's a few positive things in my lack of memory. I used to hold grudges forever. Now, I can't remember to be mad. I watch TV all the time but I never see a rerun. I hear new music every single day...cuz I can't remember that I've heard it before. And you know how little kids tell you things over & over? It's new to me every single time.
So...
I tell myself that it's bad but it could be worse...
I lie a lot. =D
I am new to TN. I began Tegretol a little over two weeks ago, I think. I was taking 100mg am and pm the first week. This dulled the intensity of the pain. My Dr. said to try 200mg am and pm which I asked and he OKed to take this in 100mg doses 4 times a day. Just a fear of possible side effects. Now I am taking 100mg 4-5 times a day and 200mg at night. My memory STINKS! I am writing myself a lot more little sticky notes for sure.
I talked to my Dr. two days ago and told him that the pain has been dulled for the most part but I started having more intense one's here and there. He jokingly said, "So it's like a butter knife now instead of a sharp knife most of the time?" It was so on spot when I thought about it later. I don't like the sharp knife one's but can deal with the butter knife ones. The dull pains still hurt, but they are tolerable in the scheme of things. The sharp one's are what are causing my Tegretol doses to go up and I do not like them at all.
Boy did I get off subject there. Sorry y'all. I call mine "Brain Fog" and rattling on from one subject to another is part of it for me.
Carrie
My now grown children are always bringing up things and saying, "You remember" and sadly I have to say that I don't or that I have a vague memory of what they're talking about. I've been on 400mg forgetitall a day for around 10 years now.
Love and Light,
Terry
I have been on Tegretol for a few months now it was ment for to Help my Anxiety which it's not helping but what's worse is my memory is starting to go the stage it's at now is that I can't remember if I took a certain medication or not I'm worried incase it gets worse over time I forget my nieces and nephews birthday and ages aswell.
Anyone got any thoughts on this??