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UPDATED: Thu, 05/08/2008 - 9:35am
dknight
Easiest tolerated Med for complex partial seizures?
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I reacted to Trileptal. I am trying to build up to the fully prescribed dosage of Topamax but spent all day yesterday feeling bloated and experiencing frequent urination. I was very embarassed at church during the Wednesday evening service because I went out four times to use the bathroom. I am someone who is hesitant to go out one time. The strangest thing is I am fine today. However, I did spend most of last night praying. Is this common? Has anyone else experienced this before on Topamax? If there is something else that I could tolerate better than Topamax I would be eager to recommend it to my neurologist. I hate this let's try and see what happens method. Thank you all in advance for your input and God bless!
By dknight at Thu, 05/08/2008 - 9:35am | 42 views | 7 comments
Topic: Medication Issues
Recent Comments on this Discussion
Hi dknight,
I've had epilepsy since I was 14. I've had a mix of absence, general and complex partial seizures. I'm almost 50 now. I've been on many, many diferrent meds. Phenobarbitol, Dilantin, Tegretol, Neurontin, and many others. Some worked better than others, but they never worked real well. I could never "hide" my epilepsy from co-workers and acquaintances. I know how embarrassing it can be to have to educate someone who has just witnessed you having a seizure, and then still wonder if they think less of you. (But I always had a better response among friends at church. Keep it up. You're in the right place.)
Up until 7 years ago, I still had seizures maybe once every 3 months. I was always dragged down and drowsy from the meds. I would have to say the ones I tried from that time period that had the least side effects (for me at least) was a combination of Tegretol and Neurontin. This combination did give me better control with a seizure once every 3 months, wheareas before I would have 1 or 2 each month. I would echo the comments about Tegretol If you can't use Trileptal I would try Tegretol.
Then 7 years ago my doctor switched me from Neurontontin and Tegretol to Keppra and Trileptal. He told me (Ok, he WARNED me) there would be a phase-in time to get used to the new drugs. For about 3-4 weeks I was a horrible person to be around. I think some of it was going through withdrawal from my old meds combined with getting used to the new ones. I was nervous, jumpy, irritable, and ticked off with everyone. Gradually though it wore off and I found I was actually a new person.
Now suddenly I was awake for the first time in years! I had a whole lot of new energy. I was a lot more outgoing too. It was weird, I actually had insomnia for the first time in decades. Always before I could go to sleep anytime anywhere within 10 minutes because of the drugs. You would think insomnia would be an annoyance but for me it felt like some sort of victory. My wife said she had to get to know me all over again because I was a different person. I also started having dreams again at night. Always before I was so drugged up and knocked out I didn't even dream.
I have not had a single seizure since October of 2001. This is in spite of all kinds of stresses (getting very little sleep, pneumonia, extreme pressure at work or home) that normally should have guaranteed to bring on a seizure. I know everyone reacts to different medicines differently, so your mileage may vary. If the reaction you had to Trileptal was some sort of allergic reaction or toxicity or such a catastrophic thing like that then it's obviously not going to be appropriate for you. BUT, if it had to do with the kind of nervousness, irritability, and jumpiness kind of thing, then I would encourage you to take a second look. Again, I don't know your exact situation, but if it's about the reactions, don't let the intial reaction scare you off. Talk to your doctor if this is your circumstance and ask questions about what can be expected. I always had side effects with every medication I tried. I have NO side effects with my current meds. I can't even tell I'm taking anything. At least for me it is the closest thing to a cure when nothing else was controlling my seizures. God Bless.
Hi,
I've had Complex partials since I was a kid. I've been on Tegratol since I was about 15 (no one knew my "weird spells" were seizures for quite a long time) and it controls my seizures outright. I haven't had any side affects. Maybe a little weight gain (but I also sit behind a desk all day so that's a more likely culprit!)But like Spiz said, everyone reacts differently to different meds. So make sure to ask the 'ol neuro about med issues.
And spending a whole night praying is a good thing.
God Bless,
Speranza
"The secret of man's being is not only to live but to have something to live for." ~ Fyodor Dostoyevsky
the easiset med for complex sz for me was a combination of lyrica
and topamax . topamax can have some strong side effects so if u dont
like it u might want to try lyrica. its taken me 30 yrs to
finnally get some controll over my szs thanks to lyrica.
Topamax was an answer to prayer for me. I tried other meds, and my reactions to a couple of them were so toxic that I was almost dead before we figured out what was happening to me. When I found my new health care provider, and he put me on Topamax, my life turned around immediately. It took some adjusting to find the right dosage, but we now know how to use the medicine to handle the stresses during my life and adjust it accordingly. The side effect of Topamax was some weight loss, which I didn't mind at all, because of the extra 80# I had gained in a short amount of time while the other doctors were trying to give me hormones and all kinds of other drugs trying to figure out what was wrong with me...before I found out that I had e. I feel very blessed to have found my new health care provider who does such a great job with handling my e.
Hello dknight,
Everyone reacts differently to meds so what may be easily tolerated by some may not be for others. Also, it is important to give the medicine time, as well as build up to the fully prescribed dosage and give yourself time for the initial side-effects to wear off. There's a chance this side-effect you are now experiencing will go away.
But in answer to your question, and going by only what I've read concerning it and also read on this site - Lamictal seems to be the easiest tolerated. This does not mean it would be for you however. Again, everyone reacts differently and even if tolerated well, it doesn't mean it would be the most effective for your seizures.
My advice would be to discuss this problem with your doctor and get his input.
I hope you find the answers you need and the issue is soon gone. God bless!
-Spiz
~We all matter, even when we haven't the slightest clue why~
The lets try and see what happens method is the only method that is proven to work. I don't know what side effects Topomax has so it's a case and see if it was the Topomax that caused your problems.
As to you been embaressed at church don't bother going again and that will get rid of that problem. And as to thinking praying all night had any effect on your problem your right it probably made it worse as sleep deprivation is a known trigger!
Dear Plopdan,
Now, now. I can't but help reply to this. First, I find the experimental side of medicine frustrating. I like a sure thing. I don't like guess work.
Secondly, the embrassment at church is all in my head. No one said anything to me for going in and out so many times. I was just self-conscious about it. I have a very loving and supportive group of friends and family at church. They love me unconditionally and have seen me at my absolute worse and choose to love me anyway. This is exactly how it should be.
And finally, I could not sleep and I do know the dangers of epilepsy and sleep deprivation, so why not pray?
But, thanks for your input. I do appreciate you taking time to respond.
I hope you do understand that to me - having faith and hope helps me face each day positively as I live with epilepsy.
Thanks, dknight.