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Hi All
Have a question hope someone can assist with.
I was put on Keppra when i first started having seizures (nothing showed on MRI, EEG etc), it worked for 18 months then I had breakthrough seizures and they upped my dose to 2500mg a day from 1250mg. After a few months of feeling ok (ish) I started having dizzy spells, nausea, really bad headaches etc.
My nurse thinks I may have been having seizure buildups, but I had no breakthrough so i had Clobazam for three days which seems to have⦠read more
@A MyEpilepsyTeam Member the clobazam seemed to take the symptoms away but really drowsy on it.
@A MyEpilepsyTeam Member and @A MyEpilepsyTeam Member there are specialist and I have one now, she is much better than the general Neuro I had before, hopefully they can stabilise it with little side effects. Just so long between appointments and she is a bit indecisive. Which doesn't help!
I'm no doctor, but this sounds exactly like my experience with Keppra and Tegretol.
*spits and touches iron*
I've had great experience with Depakote (almost 20 years now), but everyone's chemistry is different. Perhaps genomic testing, to see which types of pharmaceuticals would be most compatible with your body, would help in the prescriptive process -limiting the amount of nasty side effects you have to go through while finding your balance.
@A MyEpilepsyTeam Member and @A MyEpilepsyTeam Member: great point! the best medical treatment I've received was from epileptoligist clinics!
Hi @A MyEpilepsyTeam Member. Your welcome . Happy that I could help you some.when I do re research on side effects I go to www.drugs.com. But I'm sure there are many sites if you used your search engine.
I was wondering if there are just normal Neurologists in the U.K. Or are specialized Neurologists that actually understand Epilepsy. I only ask that, because where Ilive , ( in the USA πΊπΈ) I have an Epileptologist. Even over here, there are so much of them. If we live in and around the big populated cities, we have a chance of finding an Epileptologist. But if I were to live in a small town , I would have less of a chance. I only ask because if you were able to find a such specialist, you would have less of a chance hopping through hoops and maybe get a straight out answer with your struggles. I would be frustrated if I was told not to worry about the rashes. Even if ts not on the side effect list , doesn't mean that your not allergic to something in the ingredients.
We'll take care . Hope you can get this solved.
@A MyEpilepsyTeam Member Hi Randy thanks for the detailed useful response as always. It's interesting you should mention the side effect of upping the dose. I actually started getting REALLY bad rashes within a week of upping the dose, first every few days, then more or less daily, also accompanied by the occasional swollen lips.
I put up with things for a few months (since I wasn't having grand mal seizures - thinking it would pass but it didn't.
After seeing various 'specialists' (which I had to push for) It was identified as Hives - I have never had a skin condition before in my life!
Yet of course they all (neuro, immunilogist etc) said it's not the drug!. I was told to take antihistamines to control it and see if it goes away wait up to six months!.
I'm sure it's the dose increase as legs and stuff were itchy before the increase after I started on medication - but there were no breakouts until the dose increase.
As I have learned from this site (and having a really terrible neurologist initially) you have to do your own research and guide the docs, so thanks all for sharing your information and providing advice.
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