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Medical Forum / Diseases and Disorders / Epilepsy / February 2006Zonisamide
I've been on a Tegretol/Keppra combination for years, the Keppra was supposed to help my partials and complex partials, but they just seem to keep making matters worse (mainly the loss of co-ordination, which causes me to shake and wobble all over the place, and the excessive sweating). I saw my neuro yesterday, Feb 1st, when he decided to wean me off the Keppra, and stick me on Zonisamide, but I don't know much about it, or effects on other people who've been on it, or a combination of it with tegretol. The only thing I ever heard about it was that they used it mainly for children with Myoclonic epilepsy, but I turned 40 last month so I'm no child, and I know I have several types of epilepsy, but I certainly don't have the Myoclonic type - so why should he give it to me? Help please Sofie  SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ I'm not a Dr. (you know) nor know anything about Zonisamide, but for my C.Partial szrs. as Tegretol alone stopped working ~1996, my Neuro added half a tab (5mg) Frisium= Clobazam. Each new szr. we added 5mg in AM with Tegretol (we were removing nite dose by now, only AM remains). Two more szrs. we're at 1 tab Fris. AM *with Tegretol CR, 1 Fris. night alone. Last CP szr. I had was June98. I wondered if Frisium would help your type as add- on to Tegretol? G./ My son is on his second trial of Zonisamide(Zonegran). Both times he has handled it fairly well until we get up to 400 mg. His side effects have not been that bad this time around. Some word finding issues, some memory problems but he has that from seizures as well. He has not had control this time around. We are going down in it and adding Keppra soon to find control. My daughter was on Zonegran for one year and did have a lot of side effects. For her there was increasing anxiety that was really impacting her quality of life. She also was having a big problem with grades at school dropping significantly. Both of them are teens. It seems to be one medication that either works well and is loved, or it does not and is disliked. Best wishes to you as you start it. I hope it gives you control with few or no side effects! If you go to www.epilepsy.com, look on the left hand side navigation menu. You will find this med listed in Treatments and can look at extensive information on it. Gin > My son is on his second trial of Zonisamide(Zonegran). Both times he > has handled it fairly well until we get up to 400 mg. His side effects [quoted text clipped - 7 lines] > her quality of life. She also was having a big problem with grades at > school dropping significantly. It must be Hell for you, I remember how much of a nightmare it was for my parents trying to look after just me - forever fighting over who's side of the family it came from, wondering whether I should be in a lunatic asylum, and forever having to clean up any accidental incontinence I may have had during a seizure. It was even a nightmare for me having to listen to them complaining about it! With two children with seizures, I should imagine it must be worse for you, but the reason I was asking about this drug is because 1. I've never tried it before, not by itself, or in any combination at all with any other drug, and therefore wondered how it would react with my tegretol. 2. I don't know anything about it, other than it's suppose to have really good results for children - mainly children with Myoclonic epilepsy. As I already mentioned though, I turned 40 on Jan 4, so I was a bit confused as to why it was prescribed for me. I feel now, that maybe he's tried so many other drugs on me, he just can't think of what to do next. I also looked at the epilepsy site you gave me, and some of the after effects seem gruesome, such as Oligohydrosis (impairment of sweating) - I get exessive sweating from my meds already, so mixed with this med, couldn't it do some serious damage to contradict the two meds together. I also found Anorexia written down as a side effect, but most of my meds I've taken in the past (mainly the sodium valproate), have always been more likely to put up weight gain, not lower it - I now feel something is going to go dreadfully wrong with my metabolism. Most of the others, such as the dizziness, and memory impairment didn't really frighten me too much, as I've already been getting them for years from all my other meds anyway, but as you already mentioned, we're all individuals, and what didn't work for your daughter could still work for me eh. Take care Sofie PS. I absolutely loved your little phrase - "It either works, and is loved, or it does not, and disliked"! :-) SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ It is actually not FDA approved for anyone under 16 (though it has been used in kids in US for over 5 years.). So it IS an adult med completely. It is also one that does not seem to interact with other medications so that is a plus as well. It was very difficult having the second child diagnosed, felt like a truck had run over me for sure. Since she is doing so well, seizure and med free now for the past 8 months, it makes it easier. My son has never had control and is not doing too well currently. It is tough as a parent, but we have not fought of done the blame thing. My husband's uncle died of e at the age of 19, but we have been told it is not hereditary. He died over 50 years ago (back in the dark ages of treatment) so WHO knows. I know you can inherit a lower threshold and think that is part of our picture. Does not really matter to me why or who, just getting the best treatment is key. I hope the new med will do ok with you. I know it is so stressful to even think of a switch. Seems like the evil med you DO know is sometimes better than the chance of trying the evil med you do not!! We face that next month when we add Keppra to the mix. Hang in there! Gin > I hope the new med will do ok with you. I know it is so stressful to > even think of a switch. Seems like the evil med you DO know is > sometimes better than the chance of trying the evil med you do not!! We > face that next month when we add Keppra to the mix. > > Hang in there! Hi Gin, it's funny you mentioned having Keppra added to your mix next month, because I'm being weaned off Keppra this month to begin my Zonisamide next month - out of interest what's your kid being weaned on to? I really wanted to write back to say a big thankyou for your support, and the statement about how it's an adults med has also made me feel much better than anything I've read on the computer. And about whether it'll work for me or not - I suppose only time will tell eh? Thanks again Sofie SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ Hi Sofie, yes, only time will tell. That is the big rub with these medications! You just do not know how well the chemistry mix will work until you try it. These meds are so highly individual! When my son was first put on Zonegran he was 10. It scared me that all the literature talked about it being used only for those 16 and older! Then I met someone who had an 18 month old taking it! These meds are all tested and used first on adults. The kids taking it are the test bunnies. I really hope that Zonegran will be a good one for you! We start Keppra next month. Our epi does not like poly therapy so his plan is to start it next month and slowly wean off the ZOnegran. Of course if we hit control before Zonegran is gone, I will advocate to have us stay there!! Another seizure this morning for Sam and an emergency appendectomy last Thursday. We are a bit wrung out here. Need control and health! Hope you have a good week! Gin > Another seizure this morning for Sam and an emergency > appendectomy last Thursday. We are a bit wrung out here. Need control > and health! > Hope you have a good week! > Gin Here in the UK, only adult human's are used as "Guinea Pigs" so to speak, to be used for testing different drugs. I thought it was done in most countries, isn't it, where people volunteer for it themselves. Also, I was wondering about poor Sam. He seems to be getting the worst of both worlds! I seem to have been walking around with a blindfold on all these years, as I also thought that an appendectomy was mainly for women who had difficult births, and therefore was also rather confused as to why your paediatrician would recommend it for your son! All the best Sofie SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ Appendectomy is removal of an infected appendix which we all have. If left untreated it will burst and you can die. Sam's was caught early on. He was the sickest I ever saw him, though and never want to see him that bad again. Drug trials are voluntary and occur before the medication is allowed on the open market. In the US< no drugs are tested first on children. The adult meds, once they are approved and marketted are used on children, however. Therefore, the kids who use these drugs, essentially, are providing the data on how efficacious the med is. It was not a Paediatrician who recommended the Appendectomy, it was an Emergency room doctor and a surgeon. This too shall pass. Pretty common occurance for teen boys, but happens to all ages and genders. Hope you have a good week Gin > Appendectomy is removal of an infected appendix which we all have. If > left untreated it will burst and you can die. Sam's was caught early > on. He was the sickest I ever saw him, though and never want to see him > that bad again. I know it's a condition involving an infected appendix - but I just thought that Sam, being a teenager was a little too young to have his insides fiddled around with, that's all. A lot of women who get it via difficult births are usually in their mid-twenties upwards. Hope you have a good week too, and good luck in taking care of the both of your kids, especially now that their getting at the age when they're both going to start needing extra attention now that they're at that dating age! Lot's of luck with the Keppra, and hope it works better for your kids, than it did for me! Take Care Sofie SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ > I'm not a Dr. (you know) nor know anything about Zonisamide, but for my > C.Partial szrs. as Tegretol alone stopped working ~1996, my Neuro added [quoted text clipped - 3 lines] > alone. Last CP szr. I had was June98. I wondered if Frisium would help > your type as add- on to Tegretol? G./ I was on a Frisium (clobazam) and Tegretol (carbmazepine) combination about 10 years back, when I used to live in London, but like many others who've tried it, it did absolutely nothing for me, just like the Keppra is doing now. I suppose I'm just waiting for a wonder-drug to come along and help, which was probably why I've just agreed to try Zonisamide - maybe I'm just expecting too much from my meds eh! All the best Sofie SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ |
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