Anyone use zonisamide?
- Thread starter Azusa
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I tried zonisamide. Yes, I lost weight on it, but not in a good way. Appetite suppressant plus painfully sour stomach led to chronic low blood sugar which eventually triggered a seizure. I was trying to eat, but my stomach hurt too much.
They call it the "Supermodel Drug" because it makes you "thin and dumb" (no offense to any supermodels out there). I did have cognitive side effects with it, problems with word-finding, etc. It also made me depressed and cranky (probably because I was starving), two things I've rarely been in my life before or since. I was a few weeks away from my 6-month check-up with my neuro, at which point I was planning to ask for a medication switch -- instead I had a massive seizure, and that got the switch started sooner.
I had a bad experience -- yours may be better. Make sure your neuro measures your serum bicarbonate before and after you go on the drug, in order to check for metabolic acidosis. (See http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm). And make sure to drink plenty of water on it.
They call it the "Supermodel Drug" because it makes you "thin and dumb" (no offense to any supermodels out there). I did have cognitive side effects with it, problems with word-finding, etc. It also made me depressed and cranky (probably because I was starving), two things I've rarely been in my life before or since. I was a few weeks away from my 6-month check-up with my neuro, at which point I was planning to ask for a medication switch -- instead I had a massive seizure, and that got the switch started sooner.
I had a bad experience -- yours may be better. Make sure your neuro measures your serum bicarbonate before and after you go on the drug, in order to check for metabolic acidosis. (See http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm). And make sure to drink plenty of water on it.
Azusa
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Hmm ell it sounds like it isn't worth it if it actually DOES cause seizures, maybe I shouldn't be to excited.......:mrt:
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It my case, it triggered a seizure because of low blood sugar. If that's not a trigger for you, or if you are able to eat properly on it, you may be fine with it.
Here are some other Zonisamide threads from the archives, plus the "askapatient" link for it, which may also be helpful:
http://www.coping-with-epilepsy.com/forums/f20/anyone-else-have-trouble-zonisamide-19045/
http://www.coping-with-epilepsy.com/forums/f23/anyone-else-take-zonisamide-17726/
http://www.coping-with-epilepsy.com/forums/f23/anyone-zonisamide-12944/
http://www.askapatient.com/viewrating.asp?drug=20789&name=ZONEGRAN
Here are some other Zonisamide threads from the archives, plus the "askapatient" link for it, which may also be helpful:
http://www.coping-with-epilepsy.com/forums/f20/anyone-else-have-trouble-zonisamide-19045/
http://www.coping-with-epilepsy.com/forums/f23/anyone-else-take-zonisamide-17726/
http://www.coping-with-epilepsy.com/forums/f23/anyone-zonisamide-12944/
http://www.askapatient.com/viewrating.asp?drug=20789&name=ZONEGRAN
KarenB
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Our son went on Zonegran (Zonisamide) in October. He started out at 100 mg (1 pill), and it immediately stopped his nocturnal tonic-clonic seizures -- he hasn't had one since. But it didn't stop his tonic seizures right away. We had to work with dosage and also tweaking the ketogenic diet. We finally got seizure control in January with 250 mg of Zonegran, and adding MCT oil in to the Ketogenic diet. He hasn't had a seizure in 3 months (he was having an average of 3 tonic clonic or tonic seizures a day before going on Zonegran).
So...for us...Zonisamide was a Godsend, because most meds do not work at all for our son.
With regard to side effects:
1) Appetite -- yes, he absolutely lost his appetite completely. This was a problem, because he was already on the verge of being underweight. What we found helped with this was:
a) Give him his Zonegran at the end of the meal with lots of water
b) We later gave him his entire dose of Zonegran at bedtime with a snack (it REALLY helps with good sleep) -- you can do this with Zonegran, because it stays in the body a long time.
c) He now gets his Zonegran at supper time, but at the end of the meal. So...by the next morning, the appetite suppressant effect has worn off.
d) We added in zinc as an appetite inducer
Happy to report that he now has a healthy appetite.
2) Acidosis -- this is a condition where the body gets too acidic, which can lead to bone loss, extreme fatique, kidney stones, etc. Zonegran can cause this condition, and, in our son's case, because he was already on the Ketogenic diet, it has been a real struggle keeping up with this. The first symptom of this condition is just feeling absolutely wiped out -- which Jonathan experienced. When it gets worse, you sort of hyperventilate -- panting. We have to have his electrolytes checked frequently, and make sure his bicarbonate levels don't drop below 20 (they are currently at 21). His acidosis is controlled by:
a) Drinking LOTS of water. 7 cups a day or more.
b) Taking potassium cytrate (your doctor can prescribe for you) as a buffer
c) We add lemon or lime juice to his water -- the citric acid actually helps de-acidify the body. I make up "lemonade" by steeping some Stevia leaves (Stevia also helps de-acidfy the body and is a natural sweetener), and then adding the juice of one lemon or two limes, and 1/8 tsp baking soda (also helps with getting body into more alkaline state) and then mix with 7 cups of water, and then he drinks this all through the day. It tastes good!!
Eating lots of veggies -- esp. raw and esp. leafy green veggies (think salad) is helpful with acidosis, along with avoiding soft drinks, and eating grains and red meat in extreme moderation. Our Jonathan can't eat raw veggies because of his inflammatory bowel syndrome (gives him the runs), but he eats lots of cooked veggies, and he doesn't eat any red meat or grains (wheat, corn, oats, rice) at all.
The loss of appetite and acidosis are the two main side effects with Jonathan. We haven't noticed cognitive decline, but he's already at a low cognitive level.
So...for us...Zonisamide was a Godsend, because most meds do not work at all for our son.
With regard to side effects:
1) Appetite -- yes, he absolutely lost his appetite completely. This was a problem, because he was already on the verge of being underweight. What we found helped with this was:
a) Give him his Zonegran at the end of the meal with lots of water
b) We later gave him his entire dose of Zonegran at bedtime with a snack (it REALLY helps with good sleep) -- you can do this with Zonegran, because it stays in the body a long time.
c) He now gets his Zonegran at supper time, but at the end of the meal. So...by the next morning, the appetite suppressant effect has worn off.
d) We added in zinc as an appetite inducer
Happy to report that he now has a healthy appetite.
2) Acidosis -- this is a condition where the body gets too acidic, which can lead to bone loss, extreme fatique, kidney stones, etc. Zonegran can cause this condition, and, in our son's case, because he was already on the Ketogenic diet, it has been a real struggle keeping up with this. The first symptom of this condition is just feeling absolutely wiped out -- which Jonathan experienced. When it gets worse, you sort of hyperventilate -- panting. We have to have his electrolytes checked frequently, and make sure his bicarbonate levels don't drop below 20 (they are currently at 21). His acidosis is controlled by:
a) Drinking LOTS of water. 7 cups a day or more.
b) Taking potassium cytrate (your doctor can prescribe for you) as a buffer
c) We add lemon or lime juice to his water -- the citric acid actually helps de-acidify the body. I make up "lemonade" by steeping some Stevia leaves (Stevia also helps de-acidfy the body and is a natural sweetener), and then adding the juice of one lemon or two limes, and 1/8 tsp baking soda (also helps with getting body into more alkaline state) and then mix with 7 cups of water, and then he drinks this all through the day. It tastes good!!
Eating lots of veggies -- esp. raw and esp. leafy green veggies (think salad) is helpful with acidosis, along with avoiding soft drinks, and eating grains and red meat in extreme moderation. Our Jonathan can't eat raw veggies because of his inflammatory bowel syndrome (gives him the runs), but he eats lots of cooked veggies, and he doesn't eat any red meat or grains (wheat, corn, oats, rice) at all.
The loss of appetite and acidosis are the two main side effects with Jonathan. We haven't noticed cognitive decline, but he's already at a low cognitive level.
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MaeDae
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Im Starting Zonisamide
wow, I was just about to start a thread about zonisamide. My neuro dr prescribed it for me today after I shared with him that I gained about 30lbs in 4 months taking Depakote, that I was extremely depressed but also I get extremely over joyed in a matter of minutes. So Im with you, I'll give it a try, keeping in mind all that I have read in regards to side effects and blood chemical levels etc... This is third med trial..... somethings gotta give!
Oh, and Im only taking it once a day (evenings) for a month, then I go back to see him.
wow, I was just about to start a thread about zonisamide. My neuro dr prescribed it for me today after I shared with him that I gained about 30lbs in 4 months taking Depakote, that I was extremely depressed but also I get extremely over joyed in a matter of minutes. So Im with you, I'll give it a try, keeping in mind all that I have read in regards to side effects and blood chemical levels etc... This is third med trial..... somethings gotta give!
Oh, and Im only taking it once a day (evenings) for a month, then I go back to see him.
Azusa
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Oh lord I took that as well and it was garbage. Horiensuous side effects
KarenB
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The Zonegran immediately stopped Jon's tonic-clonic (grand mal) seizures -- even at the starting dose of 50 mg a day (I thought he'd started at 100, but he was on 50 for the first week). Prior to starting Zonegran, he was averaging 5 grand mal seizures a week, and ever since he took his first dose on Aug. 26, he hasn't had one since (it's been 8 months since he's had a grand mal).
However, at a low dose, Zonegran didn't help with the tonic seizures at all, even though it had a dramatic effect on the tonic-clonics. When he started Zonegran, he was having an average of 3 tonic seizures a day, and that trend continued, unabated. At first, his doc was afraid to increase the dose higher than 100 mg because of the harsh side effects, so we tried supplements (fish oil and magnesium), which decreased seizures to 1 or 2 a day, but still, that was 1 or 2 more than what we wanted.
Diazepam was added in, which had no effect on the seizures. Then Keppra was added in, which seemed to make the seizures worse. In fact, he had to be hospitalized for several days in October. At that point, his doctor increased his dose of Zonegran to 200 mg a day, and we began to wean the Diazepam. At 200 mg a day, he began to go 1 to 3 days without any seizures, and then have 1 or 2 seizures on the other days.
By December, the Diazepam wean was finished, and just before Christmas, Jon's doc increased his Zonegran up to 250 a day. Following that increase, he went for 1 week seizure free! Then we began weaning the Keppra, and he had some weaning seizures from that -- he'd go for a week or so seizure free, and then have a couple seizures when we reduced the Keppra again. So that was the month of January. Once he finished the Keppra wean (and we also did some tweaking to the Ketogenic diet), he hasn't had a seizure at all in 3 months time.
So...it took effect immediately for the tonic-clonics (grand mals). For the tonics, we had to increase the dose to 250 mg (pretty high for a child) to get seizure freedom -- so that process took 4 months. If we hadn't wasted time with the Diazepam and Keppra, we could have probably gotten there faster.
However, at a low dose, Zonegran didn't help with the tonic seizures at all, even though it had a dramatic effect on the tonic-clonics. When he started Zonegran, he was having an average of 3 tonic seizures a day, and that trend continued, unabated. At first, his doc was afraid to increase the dose higher than 100 mg because of the harsh side effects, so we tried supplements (fish oil and magnesium), which decreased seizures to 1 or 2 a day, but still, that was 1 or 2 more than what we wanted.
Diazepam was added in, which had no effect on the seizures. Then Keppra was added in, which seemed to make the seizures worse. In fact, he had to be hospitalized for several days in October. At that point, his doctor increased his dose of Zonegran to 200 mg a day, and we began to wean the Diazepam. At 200 mg a day, he began to go 1 to 3 days without any seizures, and then have 1 or 2 seizures on the other days.
By December, the Diazepam wean was finished, and just before Christmas, Jon's doc increased his Zonegran up to 250 a day. Following that increase, he went for 1 week seizure free! Then we began weaning the Keppra, and he had some weaning seizures from that -- he'd go for a week or so seizure free, and then have a couple seizures when we reduced the Keppra again. So that was the month of January. Once he finished the Keppra wean (and we also did some tweaking to the Ketogenic diet), he hasn't had a seizure at all in 3 months time.
So...it took effect immediately for the tonic-clonics (grand mals). For the tonics, we had to increase the dose to 250 mg (pretty high for a child) to get seizure freedom -- so that process took 4 months. If we hadn't wasted time with the Diazepam and Keppra, we could have probably gotten there faster.
MaeDae
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I've beem taking divalproex for about 5 months, my doctor never said anything about weening me off of it? He just told me to take it once a day in the evenings. Now, I picked up prescription late last night, all prepared to take it. The pharmacist hands it to me and says make sure to take it 2x's a day, well I told him what doc said to me and he rebuttled by re-inerating that it's 2x's a day. Guess what? That's right I didnt take it last night. I put a call into dr's for clarification...... that was 2 hours ago!
Azusa
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Hmm it's been 4 days not really feeling anything :/
Hi,
I'm on Zonisamide 100mg twice a day. I noticed about a couple of weeks after I started taking it my appetite started to go up and down (it didn't stop completely) but I was still being weaned off Lamotrigine at that point so I didn't pay that much attention to it.
I was also drinking pints of water which I guess was making me full when I should of been eating. I have noticed though since I have come off the other med one of my seizures is coming back whilst the other is being controlled by this one.
My absence seizures are being controlled but the shaky seizures aren't which is bothering me a bit as I don't see my Neuro again ti August.
I'm on Zonisamide 100mg twice a day. I noticed about a couple of weeks after I started taking it my appetite started to go up and down (it didn't stop completely) but I was still being weaned off Lamotrigine at that point so I didn't pay that much attention to it.
I was also drinking pints of water which I guess was making me full when I should of been eating. I have noticed though since I have come off the other med one of my seizures is coming back whilst the other is being controlled by this one.
My absence seizures are being controlled but the shaky seizures aren't which is bothering me a bit as I don't see my Neuro again ti August.
KarenB
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booboo -- if one of your seizures is coming back, don't wait til August to inform your neurologist. Call or email your doc with this info, and maybe even see if you can get an earlier appointment.
Azusa -- now that Jon has been on Zonegran for over 7 months, his appetite is back to normal. However, he gets the complete dose after supper.
Azusa -- now that Jon has been on Zonegran for over 7 months, his appetite is back to normal. However, he gets the complete dose after supper.
Azusa
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Hmm well my dinner varies sometimes before 7 when I take it and some days including weekends I don't eat breakfast at all when I go to work I eat breakfast but if not I sleep till like 11
Of course I get woken up at 7 to take it
But anyway started taking two 25 mg tablets once in morning and one in evening on Sunday and still no change in appitte it increases next week etc
I'm really waiting for it to take effect :/
I'm going to see my gp as soon as possible. But I'm busy with the wedding planning and also I have my cardiologist appointment 2 days before the wedding ( it's been rearranged twice) and we go away on our honeymoon 2 days after we get married (17th June). My neuro wants my gp to take a more leading role, he said he's there as back up just in case.
Azusa
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Ok guess I gotta wait a while than