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.

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Tegretol memory loss?

deleted_user
deleted_user
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?
deleted_user
deleted_user
Can completely relate to the memory loss symptoms you describe. My favourite was going to my dad's and telling him "my toilet needs the daughter". I got word confusion with Tegratol along with other memory loss issues. My children thought it was hillarious. It got to the point where I still don't trust my memory. I also got shakes and twitches in my hands.

Hope this helps, but have no idea about wehther it's linked to MS as well.
BostonTN
BostonTN
Hi JBrummer,

Yes I have slight memory loss and I usually type or speak in the wrong tense. I make up my own words and transpose letters and numbers. I look to my Boyfriend or Daughter to help complete my sentences. I've been taking tegretol since July. I can no longer drive because the medications have delayed and fried my responses. I feel inebriated. Like I've had four martinis. You're not alone...I'm not sure everyone else has the same symptoms?
yardlover
yardlover
I have been doing the exact things you have since I was diagnosed with TN and I started taking Tegretol. Everything you said sounds so....familiar. I actually noticed some memory problems when I first developed TN. Especially speech problems. For instance , I have a very hard time saying the words John & James. Some of my words come out completely wrong. My memory issues or getting so bad sometimes I get so embarrassed by them. I get things confused and my memory retention is horrible. I have to write everything down now.
I really do think it could be a combination of the two. But if you think about it , if Tegretol can tell your brain not to recognize TN pain, it is some pretty powerful medication. So glad you mentioned this I have wondering about it to.

Yardlover
deleted_user
deleted_user
Yes I had the exact same thing and it is definitely a common side effect. For me it was pretty sudden. My neurologist confirmed it was most likely the tegretol, although other medications did similar things to a lesser degree. He also suggested the constant pain signals may just interfere with our thought processes, adding to it. Like a traffic jam so to speak. I get nervous talking to people now for fear of forgetting their name when I should know it, or having those "duh" speech moments where I sound like an idiot. I seem fine writing though, it's only verbal for me.
deleted_user
deleted_user
I have the exact same thing. I did notice on Tuesday when pain was braking thru that it was worst. I thought I had my appointments messed up and I called my dentist to change the time from 9:30am, as it conflicted with another appointment at 8:00pm. (DUH!)
My words come out backwards or I can't think at all. I am a very talkative person, but I am to scared and embarrassed to say much anymore. It has effected my writting, so please forgive my spelling and or grammer. I wish there were spell check on this site.
Sunflur
Sunflur
Yes!
In fact when I used to post here we all referred to tegretol as "forgetitall". It's so embarrassing to be talking to someone and lose either the thread of what I'm trying to say, or to lose the word I want to use, one that I know! I retrace my steps over and over in the house because I can't remember what it was that I was going to do! I've been taking this for 8 or 9 years now, I forget. LOL! It's gotten to where I don't carry on very many conversations with the girls that work for me because it's too embarassing to end up standing there wondering what it was that I was going to say mid-sentence.
TNWife
TNWife
My husband had a horrible time with his memory on all of the meds that they prescribe for TN. He said he had to really concentrate to stay focused on the task at hand.
deleted_user
deleted_user
Hi JBrummer!

from what i'm reading memory loss could be a sign of ms or a side effect of tegretol.

This website shows comments from people who describe side effects they experienced while taking tegretol and yes memory loss is one of them:

http://www.askapatient.com/viewrating.asp?drug=16608&name=TEGRETOL

My mother has been suffering with TN since 1977 (i think even before this) and we have been desperately searching for an all natural
supplement versus meds/surgery because the side effects of gabapentin,tegretol,lyrica , etc. are just unacceptable. We have finally found one that is addressing my mother's TN and could help (not a cure mind you)if you have ms. Feel free to email me at
dfcram98@aol.com and don't lose hope.

Dave4248
deleted_user
deleted_user
Thought I would share this with ya'll, I have epilepsy and have been on Tegretol since 1990 and it has helped greatly. But within days I too had the problems with the memory loss with words at the end of sentences when I speak...until about 5 years ago a doctor put me also on a low dose 50 mg of Zoloft. Almost immediately I could finish the end of my sentences. I now can converse with people again! Hope this can help others, although it doesn't help with other memory problems I have with the Tegretol.
yardlover
yardlover
Thank you JBrummer, for adding this discussion. I have had memory problems for quite sometime now, almost to the point of thinking I might have developed Alzheimer. My memory problems started when I started taking Tegretol. I am weaning off of the medication and hopefully in about 6 months I will be able to see if my memory improves.
Yardlover
deleted_user
deleted_user
Tegretol has caused me bad memory loss. The EMT's came after me one night and I could not tell them the three people with me names. One was my daughter. Not too long ago we had an argument and she thru up to me my memory loss. This condition has so many different aspects of pain.
TDubbb
TDubbb
Wow, I had no idea that Tegretol caused memory loss. I've always assumed that my memory loss was from my other neurological condition, intracranial hypertension, which I know for sure causes memory loss. Seems I have double trouble. My memory is shot! Difficult to recall names, even names of people that I've known for years and work with on a daily basis. I have to think really hard and try to think of their name while they are approaching me. Numbers are difficult to recall. Totally forget if I've even taken a dose of Teg sometimes. Can't recall certain words. Hate having conversations with others because I don't sound very bright... but have two college degrees. Not improving at all. I have to write most things down if I want to recall them. :(
deleted_user
deleted_user
Read your storyn and felt compelled to reply. I develpoed a distonia (convulsions) that ran up the left side of my body from my toes to my face. I had an MRI, had several lesions and they did provoked potentials (that was fun eh? 5 minutes of being electrocuted, yee ha) My Neurologist told me I didn't "officially" have MS but unofficially, I had it.
Tegratol gave me memory problems, impotence, bouts of nausea, bouts of extreme agitation, lots of fun. It cleared up the convulsions though, so good for bad. The Doc told me to expect another event in the next 2 -3 years, and then I'd have MS officially.
That was 2003. In 2007 he said it was premature to say I had MS.
Now it's 2011, I've developed Trigenial Neuralgia, the same Doc says it's totally unrelated to MS but ordered another MRI "Just in case". So far, so good. Back on Tegratol, Pain is gone, some agitation but not as bad as before, some memory loss, all in all I can't complain. Don't take what your doctor says as the gospel truth, they make mistakes too.
Cheers
deleted_user
deleted_user
Hello!

I'm no longer taking Tegretol but I can definitely relate to the memory loss and lack of concentration and confusion. I haven't taken it in months and I still have problems. I'm not sure if it will get better with time or if it's gone for good.

Not sure about the link to MS but I would definitely do some research and ask your Neurologist questions.

Good luck and take care!
deleted_user
deleted_user
Since I posted my question I've started seeing a new neurologist. Turns out that the speech problems are because the majority of my brain lesions are clustered in the area of my brain that controls speech. He says that the memory loss could certainly be tegretol but it could also be MS. I'm now off of the tegretol (for only a month) and I have noticed no change... of course, a month is not so long to be off of such a strong drug so maybe in time the memory will improve. Early this year it was like suddenly my memory was back. While I was still on tegretol. Now it's bad again, but not as bad as it was in 2010. I guess we will see. I have had two consecutive MRIs with no changes which is promising in the MS aspect. I go back on July 5th for another MRI. :)