5 months and it is controlling my pain but am starting to forget words when I am talking and now, I just forgot to call a friend back to tell them what time we were picking them up. I thought I called her back and even got the phone to call her but putnit back as thought I had. Also, forgetting simple words and my husband or friend's have to help me to find the word after I describe what I am trying to say. Is anyone on Trileptal having this problem? Am really bothered as if not the meds I need to get checked out for dementia, etc. I am 55 . Thanks so much!
Hi! I take trileptal and a very low dose. I feel as if I no longer have a brain. It’s mush! I have trouble thinking clearly, spelling, remembering things. I can’t stand it. I want to get off of it but have put myself in a bad situation. I fired my neurologist without finding a new one first. I don’t see another neuro until April. I go back to work next week after being off since mid December and am fearful that I won’t be able to function.
Thanks, makss me feel better that I am not going crazy. Again, I have been fortunate as far as it keeping the pain gone. Great name too..Trilep-hell, you nailed that one. Assume your MVD has been successful and you are pain free? Your support is so appreciated.
Hi Kim and bless your heart..you are on my prayer list and that your new neuro will be able to help you more. I know we just take it a day at a time and as someone put it, it's like livinv with a monster on our back, not knowing when it will strike again and dealing with the meds that all seem to have bad side effects. Prayers again that you will be able to handle work, a day at a time. Kim said:
Hi! I take trileptal and a very low dose. I feel as if I no longer have a brain. It's mush! I have trouble thinking clearly, spelling, remembering things. I can't stand it. I want to get off of it but have put myself in a bad situation. I fired my neurologist without finding a new one first. I don't see another neuro until April. I go back to work next week after being off since mid December and am fearful that I won't be able to function.
Thanks so much, makes me feel better. I replied early but did it as a reply to myself I think..still trying to get all this down in regard to replying to each response. .appreciate your time an assume you are doing well after yiur MVD surgery. Wishing continued pain free days to yoi!
Kc Dancer Kc said:
Big time.... Ruined my life as I knew it.
And I think I was on only 600 mg. I call it Trilept-hell.
That's why I ran to an MVD surgeon within year one of meds.
Luckily in the interim.....my neurologist let me have low dose Ritalin . That gave me some help with side effects.
Hi and so glad to hear you are "hanging in there". Comforting, yet not what any of us want, are the cumulative side effects the meds for TN have in order for our pain to be managed. Guess I will just stay on the Trileptal until I feel it is taking too much of a memory toll on me. I am getting back into the work world and starting to look. Would love to work from home but after an exhaustive search, they all are mostly scams or multi-level marketing jobs that I am not a fan of. Main concern is getting a job and then the "monster comes back" and impacts my work and they think bad of me for not disclosing on the front end...but, a bridge I pray daily I don't have to cross. Yes, the eternal optimist I guess. Prayers to you too for pain free days and continued work success. Thanks for sll your information! SimpleLife said:
Hi, I am 54, have had ATN for 20 years, historically I've taken (not all at the same time of course, lol):
tegretol.
trileptal.
neurontin.
elavil, after 6 years my tongue become swollen and that was deemed attributable to the long-term elavil use, so no more of that class of med for me.
lexapro, but I couldn't stay on that for any length of time due to the stomach upset.
so much advil that I ended up with hives for more than a year and now a full-on allergy to all salicylates.
Now I'm on lyrica & cymbalta & xanax & buspar daily, and vicodin as needed. And my pain is relatively well managed by the meds and my very simple, calm lifestyle.
SO, please know that my memory is also not-so-good. Please take some comfort in not being alone at all in this regard. I've learned to embrace it, and I don't worry that I have dementia, I do work full-time from home and I can concentrate on my 40 hours/week of work effort. BUT, in general my memory is absolutely, positively not-so-good, at all.
I'm praying for us all, hang in there, bless all of our hearts :-)
Hi Deb. I thought it would be something you have done for a long time and then was able to do from home. I know something will come along for me when it's the right fit. Much thanks and have a good week. Warmest regards, Cindy
SimpleLife said:
Hi, regarding working from home, I have been in a traditional well-respected industry for more than 30 years, and was able to stay with my long-standing employer and just transition from my office-office 9 miles from home to my home-office. So I was VERY lucky in that regard. Best regards, SimpleLife a.k.a. Deb :-)
Cin Len said:
Hi and so glad to hear you are "hanging in there". Comforting, yet not what any of us want, are the cumulative side effects the meds for TN have in order for our pain to be managed. Guess I will just stay on the Trileptal until I feel it is taking too much of a memory toll on me. I am getting back into the work world and starting to look. Would love to work from home but after an exhaustive search, they all are mostly scams or multi-level marketing jobs that I am not a fan of. Main concern is getting a job and then the "monster comes back" and impacts my work and they think bad of me for not disclosing on the front end...but, a bridge I pray daily I don't have to cross. Yes, the eternal optimist I guess. Prayers to you too for pain free days and continued work success. Thanks for sll your information!
Both Trileptal and Tegretol did that to me. I would constantly lose words and the simplest ones. It was very frustrating. I also had lots of confusion, unable to stay focused, like all my thoughts were jumbled in my head. I always had to try and laugh it off the best I could. The worse was when I was in the car driving to a friends house (I often drive there) and for a few minutes, I could not even remember where she lived or which way to turn. The unacceptable for me when I was on Trileptal is when I started having these "episodes" that lasted 30-60min, which felt like I was on an illicit drug trip of some sort. I was just out of it, couldn't drive, couldn't concentrate, very euphoric. I was on a pretty high dose by that time (I think it was 1800mg). I was then switched to Tegretol, which honestly was a little worse with the mental confusion but did do a better job on the pain and because it was extended release (XR), I didn't have those "drug dumps" that caused my episodes. I have to say that now since I'm fully recovered from my MVD (Oct. 30, 2013), I truly realize what an effect those drugs had on my life. I have so much energy now. I feel like a new person. The medicine affected my memory/concentration, made me always tired regardless of how much sleep I had, plus they interacted with my Synthroid I take which sent me in to a hypothyroid state for many months. Now that I have my thyroid in check and have been off all meds for about a month, life is so good. I highly recommend at least considering MVD and with a highly experienced neurosurgeon. It changed my life :).
very interesting, so the Ritalin gave you back some focus ability that the trileptal was taking away...although I bet the Ritalin had its own set of side effects...
Kc Dancer Kc said:
Big time.... Ruined my life as I knew it.
And I think I was on only 600 mg. I call it Trilept-hell.
That's why I ran to an MVD surgeon within year one of meds.
Luckily in the interim.....my neurologist let me have low dose Ritalin . That gave me some help with side effects.
Trileptal does that to me too. (But not nearly as much as the Neurontin does.) I absolutely hate when I can’t think of the right words to say, and I just sit there like an idiot. My friends and family know how I am, and they know why. So they help me out and they help me not to feel bad about it… However, the worst is when I can’t avoid doing it around people who don’t know me and don’t know why I am stumbling over my words and then staring at them like a deer in headlights because my mind is desperately trying to search through the hard drive that is my brain, and Trileptal is the virus that is slowing it down. I could just scream, or cry, or run and hide when that happens. But I could get over all that. What I am struggling with, and what makes me question whether or not I should even be taking these medications, is the fact that I delete memories. I feel like an elderly person with dementia or Alzheimer’s or something. I hate it!! But it is the best medication for my pain. It is my miracle drug. Until I find something that works better and doesn’t make me a drooling idiot, then I guess I will have to stick with it…
I had the same problem (on both Trileptal and Tegretol) that you mention about actually deleting memories. I was on each drug for the past year before my MVD and when I'm talking to my family or friends about an event or memory form the last year, I draw a blank. It's like I actually don't remember parts of my life from the past year. I can tell you now though that I'm off the medicines, it is most definitely the meds causing these issues and they were far worse than I realized now looking back.
Hi Anna. Sorry for delay in reply but thought I had...can't get used to how this all works. I so appreciate your information and it does give me peace in that I am not losing it but the meds are just wicked on us with all the side affects they give us but a necessary evil for the pain control. Wishing you pain free and peaceful days!
I take 1800-2400mg of Trileptal a day and I've definitely gotten dumb on it. I used to know actors and lines from movies and could name any song in my 1000 cd collection within 10 second. Now I can't do any of that and I often forget names of people I've known for years and drop words in sentences...all the stuff you're talking about. It's frustrating as hell. I'm still luckily very functional and do my job and all. I take lots of notes in all my meetings now tho :)
I've been told that all the stuff is still in my head and if I can get off the meds it'll come back.
