After 5 months on tegretol (700mg per day)I still am suffering from extreme fatigue and weakness. I am used to working as an accountant, walking 7.5 kms 3 times a weak, doing yoga, doing house projects (like putting in slate floors) or spending a day working on our acreage. Now I can't work, my duties in the home are very limited to either making meals or cleaning 2 bathrooms but I can't do it all in one day. I have been able to garden for 1 hour twice and I was exhausted in bed for the rest of the day. I tried to throw the ball with my son and after 30 minutes, I was done until the next day. Getting out of chairs and cars and walking up stairs are very difficult. Does anyone else find that tegretol has impeded their activity to this degree?
I couldnt do anything on it at all, I have been out of work since April, I am now on lyrica, which helps, but now that I have been on it for 3 weeks, I am getting breakthrough pain. The Tegretol and Lyrica both have made me exhausted and my vision is off. I am dizzy and things just dont look right, I have no way to describe it. I only have about 3 hours a day where I feel almost human, I am sorry you feel this way, I have had exhaustion all my life due to thyroid disease, so I know how it runs you down. I hope you feel better!!, Wendy
It made me very weak and tired too. I mostly laid on the couch every evening after work and finally at 9 or so my husband would wake me up so I could go to bed. Now I'm on trileptal which is working as well or maybe even a little better then the tegretol since I am on a higher dose and I have ALOT more energy. I'm still not where I used to be - I worked like you did -10 hour days in IT and then another 6 hours at home every day. Huge garden, big house to clean, horses and we own 160 acres. Well now I'm back probably 80 or 90 percent. I still have some weak episodes and I haven't figured out if they related to the meds or not.
By the way, I just started reading the book Striking Back and it's REALLY good. I am understanding alot more about this and other related issues with the 12 cranial nerves. I think I may have some issues with several but I don't understand why or if that would be possible. Anyway, it also gave me a moral boost and now I know I have to push past the low energy and try to work as much as I can so this crap doesn't control me!! Sometimes if I'm totally exhausted I will still rest but I don't do it as often, even though I'm very tempted.
Another note on the Trileptal. When I switched it took me about 3 months to get used to it. I'm glad I didn't give up on it though. I was really nauseated at first and very weak all the time but some of that could have been because I didn't eat like I should since I was so nauseated. Now it hardly ever makes me nauseated. So whatever you switch to, make sure you give it some time. I would think the 5 months you've tried this should be enough but of course you would need to discuss w ith your doctor.
Hi Wendy -- Yes, I know what you mean about 3 hours of feeling human -- not much of a life. That is too bad that Lyrica is not taking away all of the pain. Are you on a high dose? My internist is asking my neurologist to put me on a different drug. As much as I hate tegretol, I am scared.
crashgirl said:
I couldnt do anything on it at all, I have been out of work since April, I am now on lyrica, which helps, but now that I have been on it for 3 weeks, I am getting breakthrough pain. The Tegretol and Lyrica both have made me exhausted and my vision is off. I am dizzy and things just dont look right, I have no way to describe it. I only have about 3 hours a day where I feel almost human, I am sorry you feel this way, I have had exhaustion all my life due to thyroid disease, so I know how it runs you down. I hope you feel better!!, Wendy
In the last month I have swapped from tegretol to trileptil and I feel like a new person.
My family keep commenting on how much happier and energetic I am with the change of meds. I knew I was exhausted on the tegretol but I don’t think I was fully aware of how much my life was starting to I revolve around the lounge, it was so hard to perform normal everyday tasks.
This is the third change of medication I have had since being diagnosed last November but I am starting to feel like there is a light at the end of the tunnel. Finding the right balance of meds is not easy, good luck finding something that works for you without the hideous side effects.
Hugs Trish
I’m sorry you are still feeling so awful, Collette. Do you know which med your internist wants to have your neuro switch you too?
Hi Jennifer,
He just said he would like me to be off all anti-seizure drugs. I am not sure if my neuro will know what to do because his specialty is epilepsy and strokes. He thought I was too young for TN??? so I don't know how many people he has has treated. How are you doing? Hope you are pain free.
Jennifer G said:
I'm sorry you are still feeling so awful, Collette. Do you know which med your internist wants to have your neuro switch you too?
What a mess. I know you are in Canada and its a long wait for dr’s, but can you see a different neuro?
After a long week, I had a good day today. My face swelled and I may have had the first symptoms of a hemifacial spasm? My eye won’t stop twitching and the muscle beneath it pulls the side of my face. Not painful, but a little daunting.
collette said:
Hi Jennifer,
He just said he would like me to be off all anti-seizure drugs. I am not sure if my neuro will know what to do because his specialty is epilepsy and strokes. He thought I was too young for TN??? so I don't know how many people he has has treated. How are you doing? Hope you are pain free.
Jennifer G said:I'm sorry you are still feeling so awful, Collette. Do you know which med your internist wants to have your neuro switch you too?
I am only on 50mg twice a day, I think the humidity is playing havoc right now, I am not a good test for any medication, I seem to be the person who always has bizzare side effects, I take downers, I go up and so on. I do take tramadol for pain as well, but I hate popping all these pills and sleeping all day, so i may break down today and take one. I hated Tegretol so much , my legs spasmed constantly on it and i felt like i was 100 years old, I like the Lyrica better, seems to be the lesser of two evils., wendy
collette said:
Hi Wendy -- Yes, I know what you mean about 3 hours of feeling human -- not much of a life. That is too bad that Lyrica is not taking away all of the pain. Are you on a high dose? My internist is asking my neurologist to put me on a different drug. As much as I hate tegretol, I am scared.
crashgirl said:I couldnt do anything on it at all, I have been out of work since April, I am now on lyrica, which helps, but now that I have been on it for 3 weeks, I am getting breakthrough pain. The Tegretol and Lyrica both have made me exhausted and my vision is off. I am dizzy and things just dont look right, I have no way to describe it. I only have about 3 hours a day where I feel almost human, I am sorry you feel this way, I have had exhaustion all my life due to thyroid disease, so I know how it runs you down. I hope you feel better!!, Wendy
This neuro is as good as it gets and is still 3 hours away.
Sorry to hear of your hemifacial spasm -- sounds frustrating. There is always something isn't there. We are a mess!
Jennifer G said:
What a mess. I know you are in Canada and its a long wait for dr's, but can you see a different neuro?
After a long week, I had a good day today. My face swelled and I may have had the first symptoms of a hemifacial spasm? My eye won't stop twitching and the muscle beneath it pulls the side of my face. Not painful, but a little daunting.
collette said:Hi Jennifer,
He just said he would like me to be off all anti-seizure drugs. I am not sure if my neuro will know what to do because his specialty is epilepsy and strokes. He thought I was too young for TN??? so I don't know how many people he has has treated. How are you doing? Hope you are pain free.
Jennifer G said:I'm sorry you are still feeling so awful, Collette. Do you know which med your internist wants to have your neuro switch you too?
My wife couldn't stay on Tegretol (carbazamapine) long enough to experience fatigue or weakness. She experienced immediate pain relief but then, in less than one week, began suffering from swollen lymph nodes in her neck followed by an intense rash on her back. Obviously this could have resulted in a very serious problem. I got on the internet and carried 4 research papers to her internist (who was not aware of the potential allergic affects of Tegretol) and he switched her to neurontin after a regime of antibiotics to address the lymph node situation.
She is lucky to have you! Is she doing well on Neurontin? My first neurologist tried me on that but it gave me bad headaches. I was on tegretol for 10 days when I had extreme swollen throat glands and it was then that the internist discovered my swollen groin nodes that I had not felt and still do not feel as they are unpainful. I am looking forward to being weened off tegretol but also reluctant as it does provide me with a lot of relief.
ukfan said:
My wife couldn't stay on Tegretol (carbazamapine) long enough to experience fatigue or weakness. She experienced immediate pain relief but then, in less than one week, began suffering from swollen lymph nodes in her neck followed by an intense rash on her back. Obviously this could have resulted in a very serious problem. I got on the internet and carried 4 research papers to her internist (who was not aware of the potential allergic affects of Tegretol) and he switched her to neurontin after a regime of antibiotics to address the lymph node situation.