Urgent Help!!! Zonegran

[CatAttack]

Hey!
My neurologist has suggested to put me on Zonegran - i have a feeling this is to shut me up about the weight i've gained from being on Rivotril.

I'm going overseas in November, and it's pretty urgent i get all of this sorted. From what i've read on all the epilepsy sites, Zonegran actually hasn't stopped anyone having seizures, in some cases it's increased them - which concerns me if i'm going to be in a foreign country.

Any information would be great!!!

Has anyone had an experience with this drug, and has it worked???

Cheers
Cathleen

 

[acpollard2010]

all i can say is from my experience i was really allergic to it but have heard of others having sucess depends on person with all these drugs.i hope it all works out well! nakamova can give u threads to research she does for most really helpful.

 

[KarenB]

Our Jonathan has been on this medication for about one month now.

Yes, you will most likely lose weight if you take this med, as one loses their appetite, and sometimes there's stomach upset. (To avoid that, recommend taking the pill at the end of a meal, and drink a full glass of water).

As far as efficacy -- it seems to be especially good at knocking out tonic-clonics. Jonathan has not had a single tonic/clonic in the month since he started taking this med -- and in the week before he started, he had 4 tonic/clonics. However, he also started taking Diazepam at the same time as Zonegran, so not sure which should get the credit.

As far as tonic seizures, it is not as helpful, in our case. Here's how it worked for us:

Week prior to initiating Zonegran and Diazepam: 14 tonics

First week on Zonegran & Diazepam: 17 tonics

2nd week (higher dose of Zonegran, same dose of Diazepam): 13 tonics

3rd week: (same dose of Zonegran, slightly lower Diazepam): 12 tonics

4th week (all same as week 3): 9 tonics

(In weeks 3 & 4, we tweaked the Ketogenic Diet and added in Magnesium and Omega 3 fish oil, and upped his vitamin dose)

If you take this med, you MUST make sure you're drinking LOTS of water, as it can cause kidney stones and metabolic acidosis.

 

[Nakamova]

At first Zonegran controlled my tonic-clonics. About 6 months into it the side effects were becoming problematic though, and I was about to ask my neuro about making a switch when I had a massive tonic-clonic. I definitely lost weight on Zonegran, but not in a safe way -- the loss of appetite left me with low blood sugar, which can be a seizure trigger for me. In addition, I experienced cognitive issues due to the Zonegran, issues which went away when I was switched onto Lamictal.

I wish I could reassure you, but my experience with it was not a pleasant one.

 

[CatAttack]

Thank you all so much. I have to say it's not what i want to hear but it's what i need to show my doctor to hopefully get him to intervene. I really appreciate all the information and advice, it gets so hard. My neuro said this is the last possible medication they can try me on. In all honesty - 4 years on this, and i remember how i was (i tried to describe but i can't think of any stupid words.) and how i am now, i've had more seizures on medication than off it and if i wasn't going overseas i really would risk it. :/

ughhh! much love to everyone, i know i'm not the only one going through this, and i don't have the worst case!!! Everyone is so strong <3

 

[KarenB]

Sounds like you've been making the circuit of meds, as we have, and Zonegran is pretty much our last hope as well, and it doesn't appear to be the magic bullet.

In the last 3 days, the Diazepam dose was raised slightly, but actually his seizures got a little worse, rather than better, and his behavior is dreadful. So...I'm giving credit to whatever seizure control we have to the Zonegran, and when we see the doc in 2 weeks, going to seriously discuss weaning off the Diazepam.

Have you considered a nutritional approach? For some folks, this is REALLY helpful. We have found a nutritional approach to be more helpful than a medicine one, although we do use meds. Here's some things you might want to try:

1) Supplements, such as B vitamins, magnesium, omega 3 fish oil, selenium, taurine, etc. You might want to explore the studies out there that point to enhanced seizure control with use of some or all of these.

2) Eliminating gluten (wheat products) from diet. Apparently this can be a big trigger.

3) Eliminating sugar from diet and/or reducing your carbohydrate intake to about half of what it currently is, and replacing simple carbs with complex carbs. This will help regulate blood sugar, which plays a factor in epilepsy with some people.

4) We just started a trial today of eliminating dairy products -- we're going to do this for several days to see what happens. Jon never had issues with dairy before, but he's showing allergic symptoms to something and trying to put our finger on it.

 

[Paint Master]

Hey Cattack I have been taking 400mg of Zonegran now for about 3 months. I have not had any side effects or problems. I was taking the generic, Zonisamide, for 14 months with no problems @ 400mg daily prior to that. I am also taking 300mg of Lamictal daily. I found early I had to eat a breakfast or some food after my meds, 06:30 and 18:30, or I would have an upset stomach. You must drink plenty of fluids during the day. I still have a nocturnal once every 2 or 3 months. I wish I would clean house when I walked around instead of making a mess

 

[Fscene8]

I have never used Zonegran but I used Depakine. That evil med opens your appetite and makes you gain weight.
If your neurologist ever says "Depakine", think about what I've just written you and then decide

 

[KarenB]

Jonathan's now been on Zonegran for several months.

The Good News

1) It stopped the tonic-clonics. He hasn't had one since the day he started Zonegran, and he was having them almost daily prior to that. We now know that it was the Zonegran and not the Diazepam that was working to stop the tonic-clonics, since he's now weaned off of Diazepam (as of last week).

2) An increase in the dose (up to 200 mg/day) reduced his tonics by more than half (also added in some supplements like magnesium and fish oil which also helped), and also got him sleeping through the night (insomnia a big issue before). He gets his entire dose before bedtime (I guess it makes you sleepy). He now has about 5 tonics a week -- before starting Zonegran, he was having about 16 a week.

Side Effects
1) Tremendous loss of appetite. It took him about 1 hour to eat a tiny amount of food -- he would get up and walk away, and we would have to bring him back. It was hard to make sure he was getting the proper nutrition. It also seemed to cause diarrhea (he sort of has an ongoing issue with diarrhea anyway).

About 1 month ago, his pediatrician put him on Zinc for the diarrhea, and that also helped his appetite. Now he has a more or less normal appetite. The only problem is that the higher doses of zinc seemed to cause nocturnal seizures. We cut back on the dose, and the seizures eased up.

2) The other very serious side effect was Metabolic Acidosis. His bicarb levels got down to 16, and he was just really listless -- wanting to stay in bed all day. To deal with that we give him a 1/8 tsp of baking soda in his water 4 times a day and he had to drink a minimum of 7 cups of water a day, and also we reduced the ratio on the Ketogenic diet (were doing that for the diarrhea anyway) so that he was getting more carbs. This got his electrolytes into better numbers. However, lowering the Ketogenic diet ratio tended to allow a few breakthrough seizures.

So...yesterday, his neurologist bumped the Zonegran up to 2 1/2 tabs (250 mg) a day, and we're bumping the Keppra down a bit (his aggression got so bad he attacked the doctor), and now have Fresium (Clobazam) for a rescue drug (only a rescue drug -- we are NOT going down the benzo path again, after finally getting him off of Diazepam).

So...hoping that the higher dose of Zonegran will knock out the seizures without putting him into acidosis again.