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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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I have had epilepsy for 18yrs. I have never seen such a site and had to join straight away! Epilepsy has always been a private struggle due to not knowing any other people with the condition. It is exciting for me to have contact with others.
My journey that led me to this site was searching for tiredness with tegretol.
I have control of my grand mal seizures on Tegretol CR. I and am really struggling with tiredness. Was wondering if this is normal?
 
Welcome to our Party!! I am glad that you were able to find us. Anything you need help with, have questions about, or just want to rant, this is the place! Settle in and relax.....:hello:
 
Hi monalisa375, welcome!

I'm glad you found us! CWE members are a great group, with a lot to offer in the way of support and advice.

I'm not on Tegretol, but others here are or have been and should be able to chime in with their feeback. You can also search for info in the archives on Tegretol using the "Search" tab at the top right of the page. You might also search under "carbamazepine", it's generic name.

Here are some threads to get you started:

http://www.coping-with-epilepsy.com/forums/f23/tegretol-xr-your-side-effects-11246/

http://www.coping-with-epilepsy.com/forums/f23/learned-more-about-tegretol-today-11197/

http://www.coping-with-epilepsy.com/forums/f20/tegretol-advice-11285/

Best,
Nakamova
 
Welcome to the site

I"m also on Tegretol CR & have been for decades.

I'm sad to say it is normal to feel tired. I often find that I'm mentally tired as well.
 
Welcome, Monalisa!

I'm so glad you found us! :)

I'm not on Tegretol, but I understand the tiredness. I've felt it on several of the drugs I've been on. Be sure to mention it to your neuro.

In the meantime, please make yourself comfortable and read around in the various rooms. There's a lot of interesting stuff!
 
Thankyou for your reply. I am very tired and not 'quick' to answer. Thankyou for sharing that. I had been claiming 'baby brain' for years. Not until recently when 2 comments were made to me did i realise that i was not covering it so well.
 
Yep, Tegretol can make one feel tired. I was on it for years. However, my Dr. told me this is his choice for people who are students because it's less tiring than some of the other meds. For me, I'd have to say he was right. Other ones made me just sleep and sleep and sleep...zzzzz.

On another med I was an absolute zombie. Neighbors said they saw me driving around town holding my head up. Yep.

Welcome!
 
Yep, Tegretol can make one feel tired. I was on it for years. However, my Dr. told me this is his choice for people who are students because it's less tiring than some of the other meds. For me, I'd have to say he was right. Other ones made me just sleep and sleep and sleep...zzzzz.

On another med I was an absolute zombie. Neighbors said they saw me driving around town holding my head up. Yep.

Welcome!
Thankyou for your message. Sounds like Tegretol tiredness is usual. It is hard being so tired but better to be independent and seizure free. It does explain my coffee habit though, I thought it was just a personal flaw, needing to drink it:).
 
haya, know what you mean bout the "private struggle". even if you have got people around you it can get very lonly because its hard for people with out epilepcy to understand how you feel.

joind this forum more or less the same time as you, but so far so good it has realy made me feel better.

i found epilem made me very tired. now on lamictal good, keppra, very very bad. depression sets in very fast. its got so bad for me they are taking me off it. beleve me i rather the tiredness over the depression.

stay happy
 
Thankyou for your reply. I have found this forum encouraging. Just great to hear other peoples personal experiences. I recently had a mirror shown to me of how tired i really have been. The comments hurt but they came from people who care. The comments were not the hard thing i think it was facing my vulnerability that comes with Epilepsy.
You said that you are on keppera. I noticed a new addition to the foyer shares her experience. Maybe of some support to you.
Keppera-Will things improve by Maddie in the foyer.
 
Hi monalisa375

I'm also on Tegretol, but was already tired from Topomax and another med before going on it, so didn't notice the difference. Since going on the Topomax (migraine dose - 200mg per day), I have to be in bed asleep by 9pm or I pay for it the next day. As we all know, sleep deprivation is the epileptic's enemy! Every now and then, I have a 12-hour sleep-of-the-dead to catch up.

It's all a juggling act, isn't it? Just be sure not to sleep at the wheel :wink:

Cheers
Chel
 
Hi there, It is definatly a juggling act.
Over the last couple days i have been taking berroca (Vit B ) Feeling like i can get through the day better. Instead of dragging myself through the day on Coffee. I have also cut the dose abit. When i was pregnant i had to increase it so thought id head back to my original dose.
I think being tired is just part of it all. Something to just except.
 
monalisa, are you taking a vit. B supplement? My neuro put me onto that, magnesium and others, when I was suspected of dementia. This was the original reason I was referred to her, then eventually my diagnosis morphed into epilepsy. It's a complex story...

Anyway, dietary intake plays a huge role in brain function, and you mentioning your tiredness, and then the Berocca, made me wonder, as I downed my two Mega B's this morning. The Altzheimer's Assoc of Aust produces a pamphlet called Mind Your Mind which outlines the supplements we need to maintain a healthy brain, in case that helps.

Also, have you had any bloods? Just wondering if you're anaemic, as I've just read on this board (another thread) that some anti-epileptic drugs pull nutrients from our systems.

Chel
 
Thankyou for your reply.
It is most likely that i should follow this up more closely. I have not really got to Dr due to my 3 cheeky boys!
I think when i get this tired i go into survival mode. The vit B - Berroca has been helping and i should get back on vitamins.
I will definatly get the anaemia checked.
Thankyou :)
 
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