Anyone else here taking Zonegran?

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AussieChris

AussieChris

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This week I started trying Zonegran voluntary in an effort to come off Lamictal for a few weeks to see if it's the cause of ongoing earaches.

It seems to have no consistency taking the same doses what it does to me. One day have a headache then the next I am high as a kite and then lethargic but the next day alert and peace and love bliss out mood. It's strange it has headaches and pleasant feelings and unwanted lethargy too. Many ffects come many hours after taking it. The first 2 days I was a zombie with a headache all day.

Is this normal or did I just get a lucky dip box of it?
 
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My experience with it was horrible. I felt really strange and depressed and generally awful. I was probably on it for a couple of months, along with Lamictal. Never again!
 
Our son (now 10) has been on Zonegran for almost 2 years. It works great for the seizures, but we have to constantly fight acidosis (CO2 or bicarb levels too low on electrolyte test). Also, when he first started, he had a lot of trouble with stomach upset (diarrhea) and loss of appetite. We found that giving it at the end of a meal worked best, and we finally started giving the whole dose at the evening meal (helps great with sleep).

Your doc should have done labs for your electrolytes upon initiation of this drug, and test for it frequently (we still fight acidosis even after almost 2 years -- although his labs this last week came in good).

http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

Symptoms of acidosis include increase in seizures, clammy skin, confusion, fatigue, panting breath, loss of appetite.

You can ward off acidosis by drinking a LOT of water (8 cups a day). Even better, make yourself 2 quarts of lemonade or limeade, sweeten it with Stevia instead of sugar (sugar and other artificial sweeteners increase acidosis, while Stevia fights it). Add 1/2 tsp of baking soda and (if you can bear the taste) 1/2 tsp Morton Salt Substitute (Potassium), and this should keep your blood levels at the proper levels, if you sip on it throughout the day. (Citric acid turns alkaline in body and both citric acid and bicarbonate or baking soda help fight the acidosis). This is what our neurologist and hospital dietician prescribe.

Avoiding soft drinks and eating lots of salads and green leafy veggies will also help.
 
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Karen I am a vegan and my diet is a very alkaline one anyway. Did you know meat products are very acidic?
 
I stopped taking it today it's horrible. I'm still taking the Lamictal I usually take. It took 30 min to do the simplest thing yesterday that should have taken a few min.
 
Yes, I do know that meat (and grains and sugar) are acidic. Our son is on the ketogenic diet, so he doesn't get grains and sugar, and only small servings of meat.

Zonegran does affect cognitive function, unfortunately. :(
 
The doc insisted I continue using it this week and started a higher dose of it and is seriously is something that could be sold on street corners to junkies.

This mornings dose was like drinking half a bottle of wine for breakfast except the weird thing is you keep getting more stoned as the day progresses and it's like being in a dream state now at 3 pm I'm not far off tonight's dose where it starts all over again. Actually I feel like relaxing with a bottle of sobrietry tonight but no such luck.
 
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I've been on Zonegran for about 8 months or so and really didn't experience any side effects. However, I will say it hasn't done much. Sometimes I feel like I'm just taking a placebo since my seizure activity hasn't gotten any better while on it.
 
I dunno how you do it and how when we are all made up if the same stuff different chemicals react differently to us.


I called up my neurologist throug the week and asked if the side effects I was experiencing are normal.

Actually to tell you the truth by last Friday which was my last 50 mg and the last time I got high on it I ws thinking a permanent run on it would be ok if I didn't need to remain coherent to do full time work. I explained to the doc I felt like an alcoholic in the morning like I had Been drinking half a bottle of high alcohol wine.

2 good side effects were I lost a kg in 2 weeks without trying and all desire to drink any alcohol dissapeared.

I'm back on my Lamictal with an alert mind staying up later and can do stuff again. I wish Z worked that way with the weight loss included.
 
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Recently my went in Keto diet ketosis for a few weeks. Now the seizures are all asociated with vigorous morning walk. We suspect acidosis



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zonegran

I take 500mg a day, I obviously titrated up to this over a long period. I take this along with 8mg perampanel. I am currently awaiting contact from my neurologist to decide whether to reduce one of them as I am currently experiencing the symptoms of being over medicated, drunk without the drink!. The zonegran though improved my sz hasn't stopped them but I have tried a multitude of meds, what joy. J
 
We found it best to take the entire dose of Zonegran at night (or at supper time). It has a long half life, so doesn't really need to be split into 2 doses. This worked great for better sleep at night, less sleepiness and cognitive slowing in daytime, and less interference with appetite. There's still definitely cognitive slowing, though.

We're gradually weaning Zonegran (down to 150 now from 250, and will taper again to 100 in August), but even 50 mg knocked out the tonic-clonics (several a night), so it is effective for our little Jonathan.

j.j. -- 500 mg a day is an incredibly high dose of Zonegran. I hope your doc is checking your electrolytes regularly to make sure you aren't going into acidosis.
 
I worked up to 200 mg of that stuff for a couple of days and any mor days on it I would be talking with aliens and levitating. It's the most messed up I have been in years.

My boss cane into work today and we were going through the book work and invoices over the last few weeks which wre messed up badly. :( (another month of that and I wouldn't be employable).

And it was like umm long story but I have even incoherent for a bit.
 
My epileptologist wrote a script for Zonegran this morning and I will let you know when I actually get going with it -- it will be a few days before I start. I am in the United States and the pharmacist is having trouble getting 50 mg pills. He says it is because all the pills are being funneled to Canada, which is having a shortage. Since I had read about the shortage on this forum I was interested to hear that it is having an effect outside Canada!
 
Nakamova said:
Often it can take the brain a few weeks to adjust to a med, so you may find that the Zonegran side effects level out over time. My own experience with Zonegran was not good* but I hope it does the trick for you.
Click to expand...

Hi

For me, I have titrated up to 200 mg four weeks ago. The drowsiness has gone but the dizziness/nausea has remain. Should I call my neurologist about this? I've been missing work since I have been on it.
 
Well, I think I discovered my problem. I'm not drinking enough water. Today I have drank much more water and when I was dizzy I drank water and it went away :). Back to work on Monday...after 2 months off
 
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