Get Informed: Zonegran
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Global Patient Feedback for Zonegran (Zonisamide) ( Post a comment )
Question/Comment:
I have had resection 8/30/2002 but unfortunately still seizure although not as much as pre-surgery so surgery was very effective! Been on many medications and none but zonisamide has been effective in controlling all types of seizure, however complex partials are last to go and stubbornly remain, breaking through occasionally. At 400 mgs a day, I do not notice any appreciable side effects that cannot be controlled through minimal use of other meds, meditation, and awareness to my behaviors and typical seizure triggers.
52 year old Female – Source: iGuard United States
Posted: 2010-03-11 17:57:40
Question/Comment:
Taking Zonegram 100mg caps 5x daily with dilantin 100mg 6x daily my partial seizures are finally controlled. I was taken off tranxene after 10 yrs of use and started to withdraw so beside the problems from that which are still going on even 120 days later ..I've only had 2 seizures in 3 months! Have had epilepsy since 8th grade in HS now College graduate.
45 female
46 year old Female – Source: iGuard United States
Posted: 2009-09-09 17:22:03
Question/Comment:
i am a 24 year old male who has recently became susceptible to seizures i have had three in the last six months and they are all gran mal seziures. i was put on xanax last sept. for a ptsd (personal situation), i stopped taking the xaxnx for five days in november of last year and that is when i had my first seziure. it was diagnosed at the hospital as a xanax withdrawl. Since the first ive had two in the last three months and i was on the xanax during both of them. in response my therapist switched me to clonazepam (collonopin) to see if that would fix it and along with my primary care dr told me to go see my nerologist and when i was seen today he put me on zonegran. after researching the drug i am now up in the air about taking this medication and am now making another appt. for a second opinion, in the meantime any body have any solid feedback,opinions, personal experience with the drug, i would really appreciate it please. thank you
andrew
24 year old Male – Source: iGuard United States
Posted: 2009-07-31 20:18:05
Answer/Reply:
Andrew,
I have been taking Zonegran (4) 100 mg tablets along with (3) 500 mg tablet of Keppra at night without any problems for almost 4 years now. I have had some minimal side effects. Such as being tired a lot, and headaches once in awhile but other than that I have not had any real problems with either medication. I have grand mal seizures as well and this has been the only combination of medicatons thus far that had any control over my seizures. Feel free to e-mail me at greenidangl2003@yahoo.com. I have had epilepsy since I was 16 years old. I am 42 now.
Diana
42 year old Female – Source: iGuard United States
Posted: 2009-08-18 08:15:44
Answer/Reply:
I have not had a lot of side effects with Zonisamide AT ALL. The 1 thing I have noticed is that I have bad mood swings if I don't get enough sleep. I take them to prevent migraines and they work great. Before that I was on Topomax and I was a complete basket case. Also had really bad stomach cramps. I drink lots of water because I'm afraid of getting kidney stones but I have been told the chances are fairly low. I've been taking for about a year and a half and my experience has been positive. My dr did have to adjust my dosage to the drug and it took me a few weeks to get used to it. Also it helps me to take the medication at bedtime, but I don't know if everyone can take it that way. In the beginning it made me a little sleepy when I took it and I had a little trouble concentrating, but those feelings went away fast. I felt a little "blue" (sad dog food commercials made me cry) the first few weeks. If it does not pass or the feelings are intense for you then you need to let your doctor know. With Topomax, I kept thinking those feelings would pass after I "adjusted" and it only got WORSE. If you feel like a basket case and it does not get any better, then that would be a sign that the medicine is probably not going to work for you. Don't wait for 4 weeks thinking it will improve. It probably won't.
36 year old Female – Source: iGuard United States
Posted: 2009-08-23 13:25:21
Answer/Reply:
The doctors could not find a drug that would keep my seizures away. I have complete partials. (I stay aware, but cannot understand, also, they take a little of my memory with each one) well the doctory finally decided on zonegran, and while I was slowly ramping up on the dosage, all went well. there were no seizures and no side effects. after I reached 500 mgs, I have sudden seizures with no warnings (where I did before) and total memory loss of the whole episode and no awareness during the episode. They scare whoever I am near. The doctor wants me off the zonegran because he says this medication is "toxic" to my brain functions, and I am loosing memory too rapidly. I have never heard a doctor say what he has prescribed is toxic, but keep doing it. I must stay on it though, because all the other medications I have been on had worse side effects and at the end of September I am seeing a specialist to be tested to see if i am a candidate for epileptic surgery.
What I can warn you about on the Zonegran is
1. Take it at night because you will be very drowzy
2. 600 mg is the max dosage
3. and if you start to forget things, MAKE SURE YOU TELL THE DOCTOR!
It could be nothing, but it could also be the Zonegran!
49 year old Female – Source: iGuard United States
Posted: 2009-08-25 16:17:51
Question/Comment:
i am a 33 yr old male with SLE lupus and a seizure history. had a kidney transplant in 2000 that failed in 2005. went back on dyialysis and got a stroke in 2006 from an infected catheter. The stroke woke up the seizures and ever since one of the grand mals i have been having small episodes where i feel funny very anxiousthen I feel like i am flying and and then my mouth starts to water like crazy.Then a funny smell comes to me and it causes me to throw up. My doc. thinks they are small seizures and he put me on the max dose of keppra 1500mg2X/day I have those episodes pretty regulary. but those episodes changed to where i would have a funny feeling and then not remember anything that happened the previous30 or45mins short-term memory was gone. and in 15-20 mins it would return. My doctor put me on Zonisamide when he learned of the memory loss episode two months ago. I Just had a check up with the doc. and he wants me to be seen by a pych doc to rule out panic attacks, because my EEG and CT show nothing wrong. Just curious? does anyone else have any similiar symtoms??
34 year old Male – Source: iGuard United States
Posted: 2009-05-27 23:29:57
Answer/Reply:
Have you had an MRI to check for scarring in your brain?
I had a similar experience to yours. I was healthy, except I kept having episodes where I would just "blank out". I described it as dizzy spells, but it felt more like strong feelings of "deja vu". I had a CT scan and EEG, but they showed no abnormalities, so I just lived with it.
A few years later they got worse, up to 6 or 8 per day. I mentioned it to another doctor who explained it away as panic attacks. I was given anti-depressants, but it didn't help. Then I started seeing a counselor, we discussed the attacks, and I mentioned getting a coppery taste in my mouth. She immediately said, that what I had wasn't panic attacks, but seizures. She had me see a new doctor, who had me get an EEG and an MRI. The EEG showed nothing, but the MRI showed some scarring in my brain. I started seeing a neurologist, who diagnosed my epilepsy, and started meds. What has worked the best for me is my current dosage of Lamictal 450mg and Zonisamide 450 mg twice daily. Now instead of 6-8 seizures per day, I have 8 seizures total, this year.
Long story short, you may want to discuss having an MRI with your doctor. That is what finally diagnosed my epilepsy, and located the source of them.
42 year old Male – Source: iGuard United States
Posted: 2009-06-11 10:40:11
Question/Comment:
I am a 42 yr old female with severe degenrative discs in my neck. I am currently seeing a pain management dr in hopes to get the pain under control instead of surgery. After a procedure of burning nerve endings on my right C2-C3-C4-C5 and C6 left me with patial pain and now strange patches of sensitive nerve ending patches on my soulder and injection site. I was put on 7.5 Percocet, Amatripline at bedtime and neurotin. Unfortunetly the Neurotin made me blow up so I was taken off of it. In addition I have moderate to severe migraines that are hospital admission worthy. I went to the dr's today because of new nerve patches and a doozy of a migraine. I now am on Dolgis Plus and when not on that Percocet 7.5 and 1x daily Zonisamide. Who can tell me if anyone how this will help shooting and deep nerve pain? I do not have seizures nor do I ever want to have one! Oh also, no mention of blood work to be done to manage this med. Although I go back in 2 weeks to give the status.
43 year old Female – Source: iGuard United States
Posted: 2009-03-12 12:02:04
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Patient Comments about
Zonegran