Your experiences with Zonegran?

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daisy.girl said:
junebug....how long had you been on the zonegran? had you ever had your blood levels checked before?
how often are we suppose to have our levels checked? I have not have mine checked yet.
thanks....and wishing you the best with your med change....know that can be difficult.
Click to expand...

Maybe 6 mo I've been on it since starting it? I know when I went into the hospital with brain swelling and hallucinations and everything that comes with that the incompetent ER dr. didn't even do a background on what meds I was taking other than asking what meds I was on. It turns out the Doxycyclyine antibotic I was given for a misdiagnosis of MRSA made the Zonisimide work less but still go through my system making me have Tonic clonics so much that my brain started to swell and I started to hallucinate. Oh that was lovely. I don't know why anyone in their right mind would want to hallucinate. I made the nurses cover up the picture in my hospital room because it was moving. It freaked me out!

I'd check with your dr about how often levels are supposed to be checked. I think it is really up to you and your dr. unless the FDA requires other measures.
 
I recommend that you call your neuro and ask about having the Zonegran levels checked and also the serum bicarbonate (as it mentions in the FDA warning). Usually it's worth doin every 6 months, but your neuro may have a better sense of that.
 
I found this about zonegran and monotherapy:
(so this must be why physicians here use it for mono too)
Indications
Epilepsy
Zonisamide is approved in the United States,[7] United Kingdom,[8] for adjunctive treatment of partial seizures in adults and in Japan for both adjunctive and monotherapy for partial seizures (simple, complex, secondarily generalized), generalized (tonic, tonic-clonic (grand mal), and atypical absence) and combined seizures.[9]
 
I am glad I found this thread but at the same time I am kind of scared because my neurologist wants to start me on Zonegran. He wants to phase me off of Keppra and on to it. I sure agree :agree: with the remark about "rollercoaster." I have a shelf full of very expensive drugs that I now can no longer use and chances are Zonegran will join them.
 
Zonegran worked for 4 months for my Complex Partials, but then I started to get to get major vision problems. Horrible Light Sensitivity, like the lights were the sun if I looked at them and looked away. After the light sensitivity died down I acquired double vision when focusing on things and now when I look in the distance I see floater dots.

Eyes checked and everything was okay.

Zonegran worked like this for me - Worked great for 2 weeks and just crap symptoms the rest of the way
 
I was on Zonegran for maybe 2 weeks and felt depressed, hopless, confused, terrible. (Not physically, mentally). I have never felt that way before and never want to again. The feelings went away within a day or so after I stopped. I was on Keppra for a very short time with the same results. I switched meds because my Lamictal, although it prevents GTCs, was not controlling my partial seizures. I have about 300 or more of those per year, in clusters of 20 or 30 over a week or so, then a few weeks with few or none. I'm on Lamictal and Trileptal now, and the seizure control is better, though not perfect, with no nasty side-effects.
I've been on AEDs now for just over 30 years. the first 15 or so on Dilantin.
 
I've been on Zonisamide since Febuary at first it was working well for me. In May in needed to have my dosage increased by my GP as they stopped working, everything went back to normal for a bit but recently I been having seizures every day for 6/7 hours. The worse day I've had was seizures for 14 hours. I've had loads of problems with sleep (only sleeping 1 to 2 hours a night) I've even been on sleeping tablets to help me sleep. I also have problems with my appitite.
 
I figured out how I got rid of my Complex Partials, whilst I was taking Zonisamide the whole time, I also began to smoke a lot of cannabis and after I stopped taking my Zonisamide and took my EEG the neurologist said I was free of any unusual activity and it was normal. And I stopped taking my Zonisamide a month prior. Also I started to become way healthier after I stopped the Zonisamide because it changed me.
 
My neurologist almost put me on Zonegran, but asked if I've had any kidney stones or anything, and I already have a few (prior to being on any seizure meds), so that did not happen. Sounds like a medication I don't want to be on, though.
 
I was put on Zonegran/Zonisamide 400 mg daily back in May of 2011 & taken off Vimpat. This medication is for an add on med for my types of seizures. My main meds are Depakote ER 2000 mg daily.
So far the only side effects with Zonegran were 80 lbs of weight loss (all of which I had gained while on Vimpat), trouble sleeping at night, and constantly thirsty, so drink lots of water, and mild depression with fatigue, but now I have been on Cymbalta 60 mg daily, which helps me sleep and I have noticed a change in my attitude a bit. It's still getting in my system, so I am being very patient. I will check out that acidosis stuff though when my doctor gets back from vacation.
Terri
 
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