last resort mono-med

[Rhea]

Doc. just prescribed zonegran yesterday. Lyrica didn't works, partials all the time, gained 8 lb in one month-- ugh. So, after trileptal-didn't work
lamictal- rash
lyrica- yuck
sulfa allergies, blah blah
this is his last defense of mono therapy drugs. I don't want to go to using 2 or 3 drugs for control, but I also can't live with this many seizures. deja-vu, spacing, smelling weird things, all the other stuff-- I just want some thing to work!!! Hopefully, this is it and the added side benefit is maybe i will be able to lose all the weight I've gained on these things!! (My fingers are crossed that I"ll get a good side effect finally)) Has anyone else lost weight on zonegran or is there a thread I can look up? the search gives me too much to find this specific question. :huh: (at least right now, when I'm not firing on all 8 cylinders anyway)

 

[Nakamova]

If you have a sulfa allergy you SHOULD NOT take Zonegran. It's contraindicated. In addition, you need to watch out for metabolic acidosis:

Rash occurs in under 5% of patients. This reaction usually occurs within the first four months of therapy, and is especially likely in patients with a history of sulfa allergy (which is therefore a contraindication). The rash associated with Zonegran may take various forms, from small red spots or blotches on the surface of the skin to large blisters. It may be preceded or accompanied by itchiness. If severe, it may require treatment with an antihistamine or steroid.

On 2/23/2009, the US Food and Drug Administration issued a warning that the antiepileptic medication zonisamide (Zonegran) can cause metabolic acidosis in some patients. Metabolic acidosis is a condition of excess acidity (low pH) in the blood. The condition can manifest with a variety of symptoms, including chest pains, heart racing, rapid breathing, stomach upset, kidney stones, confusion and other symptoms. People who are already prone to have metabolic acidosis from kidney disease or drugs such as acetazolamide (Diamox), certain diabetes drugs or the ketogenic diet may be more prone to develop zonisamide-induced metabolic acidosis. Young people are also more likely to develop the condition. Metabolic acidosis is detected by measuring blood levels of bicarbonate (worrisome if less than 17 mEq/L), sometimes along with arterial blood gas measurement for levels of oxygen, carbon dioxide and acidity. Once diagnosed, the condition usually is treatable, most directly by stopping zonisamide. The FDA recommended that healthcare professionals measure serum bicarbonate before starting treatment and regularly thereafter.

I don't know whether I was suffering from metabolic acidosis when I was on Zonegran (the warning came out after I tried it), but it certainly gave me a painfully acid stomach, and by the time I went off of it I was eating as many alkaline (non-acid) foods as I could, to soothe my tummy. I did lose weight on Zonegran. (It's called the "Supermodel Drug" -- because it makes you skinny and stupid.) It suppressed my appetite and irritated my stomach. As a result I ended up with low blood sugar which triggered a seizure, and I had to go off of it. It definitely affected me cognitively too.

Sorry to be so negative, but you asked...

 

[Rhea]

that's the kind of stuff I was looking for, not quoted verses from a web site touting the new wonder drug. My doc knows about the sulfa, I think he's weighing the risks and benefits, because not EVERY sulfa drug I've been on has created an allergy. I'll check into the acidosis, and see what's up with that and what to consider. This just keeps getting more complicated and I'm looking forward to having some control somehow. Whatever it takes---So yes, let me know real life things I should know. Knowledge is power, information is strength!!

 

[daisy.girl]

I was allergic to Zonegran. This is how it effected me.

I took Zonegran for about 2 months. After about 4 weeks I started a cough that would not go away....no cold, no fever, no sorethroat....just a cough....than a week or so later I would awaken to a swollen face, eyelids and hands....as well as itchy hands throughout the day. Then I started to awaken during the night 4-5 times just soaked with night sweats....then I began to cough up blood. It is a rare side effect of Zonegran.

I did not lose any weight.

But....every drug is different for every person. It may work fine for you. Wish you the best of luck.

 

[RobinN]

After witnessing Rebecca experiencing an increase in seizures on medication, my intuition tells me that you need to do some journaling and consider that the number of seizures you are having is due to the toxins from the meds in your system.

Have you considered eliminating them (since you are having so many while taking them) and flushing your system of toxins and starting from scratch?