tegretol

[AndyG]

Hi everyone, I am new here and am just looking for some feedback on other members regarding keppra and tegretol. I have been on keppra for 9 months and unfortunately it does not agree with me, so switching to tegretol today.

Do any other members take tegretol and if so, has it improved you day to day life. I am feeling pretty depressed at the moment and will be glad to get off the keppra.

Thanks for reading and look forward to some feedback.

Andy

[Bernard]

Hi Andy, welcome to the forum.

My wife did not tolerate trileptal (which is chemically similar to tegretol), but as you know - everyone tolerates anti-epileptic drugs differently.

When you say Keppra does not agree with you, do you mean it isn't helping with seizure control? Or are the side effects (kepprage) too much?

Vitamin B6 supplements can help curb the Kepprage.

[AndyG]

Hi Bernard,

The keppra is not controling my seizures as well as giving me insomnia and depression.

I have been reading up on tegretol and one side effect is liver damage. I was taken off lactimal because my liver readings were abnormal.

I do need more sleep as lack of it affects my seizures

[TempusFugit]

Hey there AndyG and a warm welcome from me, also a new member!

I was on tegretol 10 years ago - but had to come off them due to being allergic to them! As Bernard stated, every medication affects us all differently. I wouldn't read too much into side effects for that reason. It takes time to get the 'balance' right after all and is normally trial and error. I am on my first week of Keppra at the moment (doubling the dose tomorrow - which should be fun!)

Take each day as it comes and best of luck

[skillefer]

I had a friend on tegratol while in college. For her it worked well, but the side effects she had were weight gain and facial hair. Nothing too drastic, but she did have to tweeze her chin once every week.

[jaysmom]

hello,
my 13 year old son has been on tegretol for almost 2 years and to be honest, it doesnt really keep him under control, despite upping his dose a few times. He has no side effects...only the first week or two after starting/ upping his dose, he was tired/drowsy a bit but that went away quickly after adjusting.

[forward2007]

Tegretol never gave me any noticeable side effects. I have been on it for 20 years. I never had a problem with they tested me for liver enzymes.

[KellyD]

I was on tegretol and my son still is on tegretol as well as keppra. The only side effects i noticed for me was tiredness, i had to come off it because it was too much for me. It makes my son drowsy in the morning after taking it but after a sleep he is fine for the rest of the day.

[Meetz1064]

one of the few drugs I HAVE NOT used. That's saying something.

As for Keppra......UGH. It is safe to say I will not use it again, ever. I had some very bizarre reactions to it. And that was in 3 weeks' time.

Good luck, and take care!

Meetz

[Crystal11]

Hello- I take Keppra 3000mg and Tegretol XR 600mg everyday for my complex partial seizures. Tegretol XR by itself made me feel like death was around the corner just waiting for me! I cried a lot and was depressed while on it by itself. After talking to my neurologist she put me on Dilantin which did nothing for me- then we went back to Tegretol XR plus Keppra. Its been find ever since. Tegretol tends to work better for me with my "smaller" complex partials and Keppra works better for my longer ones- Tegretol is older med and does have stronger side-effects because of that. it's a first generation drug. Besides the annoying blood test every three months for CBC/liver functions etc its been a help. I would like to get off of it and change to a new med- but my seizures get way worse when I try to lower or get off Tegretol myself. I've done that 6 times so far (which I know is a no-no) and had atonic like seizures from it and will have a long complex partial and had to go to the E.R. for it as well.. Sometimes I just get tired of being tired from the Tegretol and it did cause me to gain some weight but nothing out of the ordinary- nothing bad. My neurologist thought it would be good to keep on a med that I could tolerate and for sure don't have an allergy to. Tegretol is the first med neuros like to use most of the times.
I hope it all goes well for you and I wish you luck.
Take care, and be safe-
Crystal and her guide dog Umbro

[carlasmoore]

Hi Andy and Welcome to this site. This has been a great emotional help to me in recent months and have found many useful and helpful friends and info here.

I have been on Tegretol for over 23 years and it works well for me. Or better yet, it did until the last year. I have been having more and more partial seizures lately but the Tegretol is a great medication for me until lately.

I have to take care of me and make sure to avoid stressful situations and get sleep. My seizures are stress related and can also be triggered by lack of sleep.

Good luck with your Tegretol and I hope you find what works for you quickly.

[RobinN]

Tegretol was my daughters first med. It caused terrible vision problems. It began a sequence of increasing seizure activity which didn't taper off until she was off meds, and making major changes to her nutritional choices.

[LuvMyTwins]

Presently, I'm on Tegretol XR--800mg evening, 400mg morning (along with a little lamictal) for T-C. I've been on Tegretol since I was 14 (I'm 39 years old now) and it has always been a good drug choice for me (well, as well as any drug choice is).
They tried to switch me to Keppra and that didn't work. They also wanted to switch to Lamictal, but that made me sick. So, it was back to what was working in the first place.

[LuvMyTwins]

I have to say that I've made huge changes to both diet and excercise. I've also added acupuncture and neurofeedback. I can definitely say that my contol is not just the drugs.....---LMT

[wellygirl]

I was diagnosed with complex partial and atonic seizures in 1996 and was put on Epilim, which was useless, then Tegretol (700mg), which made me catatonic and I gained 17 kgs within 6 weeks. I could not function on the Tegretol. At my request, my neurologist put me on Lamactil and weened the Tegretol to 200mg, Lamactil 500mg per day. Opposite happened - insomnia. My weight dropped, thankfully, but had a racing brain at all hours - very, very tired from Tegretol but not sleeping due to the Lamactil.

I came off the Tegretol completely in 1998 and took the lamactil only in the mornings, which helped hugely. My weight dropped and I could function again. I was able to work and drive.
So, personally I did not enjoy the tegretol. It didn't control the seizures and I was completely exhausted 24 hours per day, felt fat, tired and sluggish.

In 2001, I dropped the dosage of Lamactil down to 150mg per day and became pregnant with my twins. I then had liver failure at the end of the pregnancy.

Until this year, I have been on Lamactil but my body started rejecting it and I started experiencing new side effects. I am now taking a (self done) small dose of 100mg day of Lamactil and now the neurologist is putting me on Keppra, with intesting effects - had a 5 hour nap today! So, will see, that is only 250mg in the mornings - what will I be like on 1000 mg per day!
I took B6 for a week before starting and now take 100mg of that each day, so far have not had any trouble with moods or depresion, just tiredness and runny nose. I am hoping to get a handle on the tiredness.

Really, you just have to try it and see how your body copes with it. Tegretol and Keppra combined would be lethal with me but the Lamactil seems to work with Keppra.

[dfwtexas]

Hi, welcome to our group. My neurologist put my on Keppra as I have some liver issues too. Unlike most seizure meds, Keppra metabolizes thru kidney, not liver. He started me on 500 mg twice a day, and he had to adjust it as I was having some breakthur seizures. Althought....MUCH fewer. I am taking 1000 mg twice a day and doing well.
How long have you been on the Keppra, at what level?

[cher1985]

Hi andyG,

welcome to the board, I'm new here as well, the doctors tried me on Tegretol(not sure the mg) as a second med when I was 11 they also tried XR.

the best medication I was on was depakote sprinkles 375 twice a day(just watch what you eat), I'm on keppra now and its helping.

[wellygirl]

Thanks Cher and JGB, I'm taking 100mg Lamactil/day and 250mg Keppra/day. I have only been on keppra for a week, so early days. I will increase Keppra to 500mg/day next week and in a month, I'll be increasing Keppra to 1000mg/day, split night and morning. The neurologist saw no reason to rush onto the keppra and i haven't had any episodes as such, yet. I have terrible memory, that is better when I take vitamin B6 and B12. I have had no other mood related problems, b6 must be helping.

Having said that, I'm 41 and in my perimenopause phase - with all that goes with it! hard to separate what is what!

I mentioned the liver failure when I was pregnant, resulting in emergency delivery, I also had renal and gall bladder failure. Almost needing dialysis. Both liver and kidneys have been closely monitored since. I find accupuncture is great for that.

Cher, depakote sprinkles sounds like something to have on ice cream :-)

[grateful7677]

I was on Tegretol for almost 20 years. As soon as I started to take it I was depressed. Even on a low dosage of 200. The most I ever took was 1200mgs. Last week I started having myoclonic and they increased my teg to 1000 and I had a tonic. Now as of yesterday I am on 600 mgs teg and 1000 keppra. I see my dr on tuesday. I took lexapro and that helps a little, right now I dont want to go back on any antidepressants. I just want to have fun and be productive, something that I have never really been able to do. Good luck. Also if you increase teg quickly be careful for utis.

[Crystal11]

I am taking Lamictal and Keppra XR together right now but just stopped Tegretol XR 600mg after 5 years. It did work but stopped about 1 year ago- or at least not working as well.
Tegretol XR keeps a steady stream of meds going and to me, it worked out well. Same with Keppra XR- On regular Keppra and Tegretol, I could feel the meds stop working and would feel sort of odd and tended to have seizures at night when I would miss meds or take them a few hours late.

I am going to talk with my neurologist about taking Lamictal XR since it has always made a big difference.
So if you miss a dose- you still have a decent amount in your body and wont have a more dramatic drop in med levels during the day or after skipped meds.

My neurologist wanted me to take all 6 pills of Keppra XR in the morning- which you can do, but I just don't feel comfortable about doing that. So I take 3 and 3.
I was just on Keppra XR 3000mg, Lamictal 400mg and Tegretol XR 600mg for a month or so- but now off of Tegretol XR.
If I wasn't getting control well with Lamictal, then I would go back to Tegretol XR.
Tegretol is the number one med started in the treatment of complex partial seizures because of how it works for so many and I believe its a sodium channel blocker that keeps the neurons from getting too excited.
Its also a "first generation" med meaning that it does have more side-effects and is an older med. The second generation meds don't have as many side-effects and is usually tolerated more than the older ones. but Tegretol being from the 50's I believe is a good med to try or start out with.

If the regular Tegretol doesn't seem to help out as much, ask for XR and see if it makes a difference.

Take care,
Crystal