proud2BMrsD
04-24-2006, 09:32 AM
I am currently on Zonegran but I don't like it. I think I've been on 9 meds in 30 years. Depakote worked great on seizure control but I gained 90 pounds and lost a lot of hair. I didn't have much to start with! That extra 90 pounds caused other health problems. Depakote also gave me tremors but I was still the best at Jenga! Zonegran is my 5th medication in a little over 3 years but it is causing my migraines to become quite frequent and I am having breakthrough absence seizures at 400 mg. Had a grand mal at 300 mg. See the neurologist Tuesday. Not sure how many more meds there are to try. Allergic to Dilatin. Taken Phenobarbitol, Topamax was great for weight loss but didn't control the seizures, Lamictal didn't work either. I tried Tegretol and Zarontin as a teen but don't remember if I took them steady enough to give them a chance or why they didn't work. Can't remember the other meds right off hand. The grand mals aren't frequent but can be if my meds aren't right. I have the absence/petit mal seizures almost like an aura to a grand mal but I can have them all day long. Docs find that strange. Thank God for my Prince Charming!
Mrs D.
Mrs D.
Sponsor
Travis from MN
04-24-2006, 01:39 PM
I hope you are more than aware Zonegran and Topamax are closely related.
I had the exact oposite problem with Z (drastic weight loss); that effected another of my meds in turn to go through the roof. I was switched to Topa which has been working for me. Zonegran I only was on 3 weeks I think, never reached target dose.
They could keep going down the list of other meds you have yet to try; plus there are two BRAND NEW ones out that I don't even know the names for or side effects of.
Are you able to see an Epileptologist, epilepsy specalist or only a neuro? That may also help.
--Travis
I had the exact oposite problem with Z (drastic weight loss); that effected another of my meds in turn to go through the roof. I was switched to Topa which has been working for me. Zonegran I only was on 3 weeks I think, never reached target dose.
They could keep going down the list of other meds you have yet to try; plus there are two BRAND NEW ones out that I don't even know the names for or side effects of.
Are you able to see an Epileptologist, epilepsy specalist or only a neuro? That may also help.
--Travis
proud2BMrsD
04-24-2006, 02:19 PM
I didn't know there was such a person as an Epileptologist! My neurologist is actually smart and kind if that makes a difference. Neurologists with a bedside manner are hard to find. I'll have to ask about the Epileptologist though. As long as I'm referred I can go to anyone my family practice doc says I need to see. My last neurologist suggested the VNS therapy.
neurowreck
04-24-2006, 04:49 PM
I worked with someone who had great results from the VNS.
I also had bad tremors with Depakote, my liver enzymes went nuts with Dilantin, can't afford Neurontin (and it's an 'add on', not a primary med for seizures that secondarily generalize), did well on Carbatrol- can't afford that now, so back to plain carbamazepine, clonazepam, and as soon as I can find a source for cheaper Neurontin, back on that (generic was ok)- think I did find one- just waiting for my doc to send a written rx to include with my order.
I also had bad tremors with Depakote, my liver enzymes went nuts with Dilantin, can't afford Neurontin (and it's an 'add on', not a primary med for seizures that secondarily generalize), did well on Carbatrol- can't afford that now, so back to plain carbamazepine, clonazepam, and as soon as I can find a source for cheaper Neurontin, back on that (generic was ok)- think I did find one- just waiting for my doc to send a written rx to include with my order.
aussie308
04-24-2006, 07:40 PM
Hello, you sound a lot like me in your seizures and problems with meds! I have always had weight loss tho. After trying 10 meds. in 3 years I requested a VNS. Am I ever glad I did!!! I've had it approx. 1 1/2 yrs. and have gone from 7 or more petmals every month and at least one granmal a mo., to 1 or 2 pts. a month and I had my first granmal in 6 mo. last week. I get gms. when I'm under a lot of stress (that day my prince charming cut his leg with a chain saw!)
The surgery was same day for me and there was very little pain after the first few days. If you have any questions I would be happy to answer them. I couldn't make it without my prince charming either! Good luck!
Laura
The surgery was same day for me and there was very little pain after the first few days. If you have any questions I would be happy to answer them. I couldn't make it without my prince charming either! Good luck!
Laura
proud2BMrsD
04-26-2006, 03:28 PM
Well the doc put me on a new med called Lyrica (Pregabalin). I took it yesterday and today without ever noticing a side effect. About 2 1/2 weeks to transition on this one & off the Zonegran. This one is supposed to have very few side effects. I guess we'll find out. I'm very hopeful. I've really appreciated all of your feedback!
Travis from MN
04-26-2006, 08:59 PM
My mind is fuzzy. That is somewhat a new formulation of an existing drug (I can't think of the older drugs name). The goal is to transfer the patients to the new version (hence profit). The reason was other companies could make generics of the previous drug now.
ANybody remember the older drugs name? I wish I could... I am in a rush and can't think long on this.
--Travis
ANybody remember the older drugs name? I wish I could... I am in a rush and can't think long on this.
--Travis
neurowreck
04-26-2006, 09:19 PM
It's an offshoot of Neurontin.
proud2BMrsD
04-27-2006, 10:04 AM
Yes and she said that Neurontin wasn't really good on the seizures. But it had that same amount of side effects as Neurontin. The bottle says Pregabalin. Why do drugs have 2 names all the time. Will that be it's generic name when it goes generic?
neurowreck
04-27-2006, 02:56 PM
Lyrica is too new to have just generics...unless you get meds from the military. They get generics almost as soon as brand name stuff comes out. My Lyrica sample pkg has Lyrica with Pregabalin underneath it- just to clarify the actual med, and not just the brand name.
Karenann12342
04-27-2006, 11:24 PM
Hi, My husband was on many many drugs for 30 yrs. Nothing worked for too long. After a few months (one time 10 months) we were back to never knowing when the next seizure would come. Two years ago we went to a university hospital to see about getting vns surgery. After they asked many questions about his seizures and auras, they asked him if he thought about being seizure free. Long story short, after many test he had temperal lobe surgery and has been seizure free for 2 years now, and has been having his meds reduced a little at a time. He is even driving again after 10 years. I think if your meds have to be changed all the time because of breakthrough spells, its worth being evaluated by eptileptologist. It was a surprise to us. Good luck to all
proud2BMrsD
05-01-2006, 06:40 PM
Hello All,
It's almost been a week that I've been on the Lyrica. I think I'm in love! I hope it stops the seizures. I have energy for the first time in years. It's as though my brain is driving me to do things and finish chores. I want to move. I don't feel like a sloth. I pray that this works well as I go off the Zonegran.
Mrs. D
It's almost been a week that I've been on the Lyrica. I think I'm in love! I hope it stops the seizures. I have energy for the first time in years. It's as though my brain is driving me to do things and finish chores. I want to move. I don't feel like a sloth. I pray that this works well as I go off the Zonegran.
Mrs. D
neurowreck
05-01-2006, 07:51 PM
That's how I was on Neurontin, and have found a cheaper source (by a 1/3 of what they charge here), and got my doc to write the rx so I can get on it again...it seemed to counteract a lot of the sedating effects of other meds, and also helps with neurogenic pain, which I have. I'm not sure what it did for the seizures, but it did help with the autonomic dysfunction, so I'm glad to be able to get it again once I get paid (disability check), and wait the 3 weeks for delivery.
proud2BMrsD
05-04-2006, 03:49 PM
I'm happy for you! I feel really blessed to have a full time job and insurance. I've been here for 10 years and they treat me really well. I'm lucky enough to get 4 weeks vacation a year and sick time that I can use if necessary when things come up. I read threads about others fighting for disability and not being able to afford meds and I wish there was something magical I could do to change the system. My heart goes out to all of you and your struggles.
Mrs D.
Mrs D.