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Medical Forum / Diseases and Disorders / Epilepsy / July 2006Switching from Depakote to Keppra - has anyone else ? Also Iron in Liver ???
After a long ordeal of blood, genetic, CAT scans and a liver biopsy my hematologist and Gastro suspect my Depakote is building up the Iron in my liver - plus the fact that I am Anemic with Beta Thalassemia Trait which was baffling them since I should have a iron deficiency. I'm starting Keppra tmrow which my Gastro says is more liver safe along with Neurontin.... But me and my Neurologist choose Keppra instead. Can anyone tell me about their trials and tribulations with Keppra especially if you were switched from Depakote and/or had iron in your liver Im finding a wealth of info out there but nothing about us patients experiences.... Thanks George > After a long ordeal of blood, genetic, CAT scans and a liver biopsy my > hematologist and Gastro [quoted text clipped - 16 lines] > > George Welcome to the group, George. I was put on Keppra the beginning of this year. My neurologist is taking me off phenobarbital and before we started the very slow reduction he wanted another AED on board to protect me from a seizure caused from withdrawing from the phenobarbital. The only problem I had was feeling drugged at first, but I think that was because I still had two drugs to start. Now the symptoms I am having are related to withdrawing from phenobarbital. The Keppra is working great. An interesting side point. We discussed all of my options and my neurologist (who happens to be an epileptologist) said that if he had to take an AED he would choose Keppra because it works well, with less side effects. Take care, Julie > > After a long ordeal of blood, genetic, CAT scans and a liver biopsy my > > hematologist and Gastro [quoted text clipped - 34 lines] > Take care, > Julie Julie, I used this group eons ago back before the web emerged and all we had were these newgroups and not a friendly interface like the WWW. Its helpful to finding other patients and information. I was on Dilantin & Phenol for years - phenolbarbital did alot to my memory, cognitive functions, daily tasks, etc etc but it worked well for the seizures. Even a phenol IV left me in a zombie state for over a week - i was never so sedated in my whole life. I never had withdrawl symptoms even with other controlled substances like ativan so I was lucky in that respect. Thats great Keppra is working for you......is their a primary medication you are taking or just the Keppra ??? What have you experienced if you dont me asking ??? appeite, dizziness, other side effects ?? Thanks alot George > I used this group eons ago back before the web emerged and all we had > were these newgroups and not a friendly interface like the WWW. Its [quoted text clipped - 16 lines] > > George Hello George, The doctor wanted me to go on Keppra first to make sure withdrawing from phenobarbital didn't trigger a seizure. So those are the only AEDs I'm taking. We were thinking that I might be able to go off AEDs. I haven't had a tonic clonic seizure for 11 years. I have had two EEGs since I started this drug test and they are both the same showing a little slowing in the (I think it's the right temporal lobe). So I'm not sure yet if I will try to go off Keppra after I get off phenobarbital. I'll be on phenobarbital probably for about a year. The last contact with the doctor - they said the next time I drop my dosage I should slow up the time between dropping the dose. For example, I had (4) 32.4 mg pills to start with. On the 18th of each month I would take away 1/2 of one 32.4 pill. I am down to 2 pills now. But because of the withdrawal symptoms, he told me to wait about 6 weeks until I drop it again, and to time it for a weekend so it doesn't effect my work. Since I work for myself, from home, that really doesn't matter, but I guess he was thinking of my need to get to my clients during the week. I started Keppra slowly before I started taking away the phenobarbital, so we would know which symptom was caused by Keppra and which was caused by withdrawal. I don't remember anything specific being a problem. I was feeling overly drugged at first. Which I think surprised my doctor. But I think that was because of taking both drugs. The interesting thing is that I went to a chiropractor, which I had never done before. I was going to see if he could help me out with my shoulder (dislocated it many moons ago during a seizure). After the first session with the chiropractor I told my husband that I felt different as far as my feeling drugged. My coordination was better. I could talk more clearly and walk straighter. I didn't have any expectations in going to the chiropractor, so I don't think it was a placebo affect. I talked to my neurologist about it and he said, if the chiropractor helps me then, great, but he has seen too many cases of people injured from them adjusting the neck, so I told my chiropractor that we won't do that adjustment. I went to see him yesterday because I thought maybe he could help me with the symptoms I was having from withdrawal. My headache is minor now. And the ache down my spine is almost gone. So he was able to help. The only thing I can think of that may have been a side effect of Keppra is that they say you can feel irritated. That has happened a couple times, but doesn't everyone feel irritated once in a while. I'm a pretty calm and laid back person, so I guess it was unusual for me. Take care, Julie > > I used this group eons ago back before the web emerged and all we had > > were these newgroups and not a friendly interface like the WWW. Its [quoted text clipped - 64 lines] > Take care, > Julie Julie being the 3rd day I'm having better coordination, etc. but my appetite, dizziness and even my mind/body felt seperated last few days - my only other option was Neurontin which would have made me in a zombie state like when I had a phenolbarb IV after my last Grand Mal 16+ ys ago Its a gradual process with the Depakote especially - and i had to map the schedule out and sort the medicines in my medicine planner To make matters more complicated my Hemoglobin went down after they took blood from me to get iron out of my liver so I was zonked after that and now this within weeks of each other..........im glad im not driving too much - i take the train to work so its alot easier on me during this transition Be glad your getting off the phenolbarbital do you feel improvements with your memory, etc ? It did a real number on me for years Thanks alot for you feedback - i really appreciate it George > being the 3rd day I'm having better coordination, etc. but my appetite, > dizziness and even my mind/body felt seperated last few days - my only > other option was Neurontin which would have made me in a zombie state > like when I had a phenolbarb IV after my last Grand Mal 16+ ys ago Hi George. Although you aren't and probably won't be using it, I just wanted to respond to your fears about Neurontin. It seldom actually has undesirable side effects for most people and is one of the best in that regard. I currently take 3x600mg = 1800 mg/day of Neurontin without side effects. It also didn't control my seizures just by itself and it's been the phenobarbital and now dilantin that I get memory loss and clumbsiness from among other things. > > being the 3rd day I'm having better coordination, etc. but my appetite, > > dizziness and even my mind/body felt seperated last few days - my only [quoted text clipped - 7 lines] > my seizures just by itself and it's been the phenobarbital and now dilantin that > I get memory loss and clumbsiness from among other things. I dont know if i mentioned it wasnt my neuro but my Psych who prescribed it for me - but for sleeping......and it did work ....too well............my docs said it might just take some time to adjust but I need to be coherent to get around NY City and with my balance which was severely affected - then again everyone has different reactions and side effects......... Im glad the Neuro is working for you !!!!!!!!! Gettting the right regimen that works can be a tedioius and troublesome process for many - oddly enuff since I have begun the transition im not noticing my petit's/aura's for the last few days........ I hope this works George > Be glad your getting off the phenolbarbital do you feel improvements > with your memory, etc ? It did a real number on me for years > > Thanks alot for you feedback - i really appreciate it > > George I do think my memory is getting better. It will be interesting to see how much better it gets as I get closer to being off it all together. Right now I'm only half way there. Take care, Julie > > Be glad your getting off the phenolbarbital do you feel improvements > > with your memory, etc ? It did a real number on me for years [quoted text clipped - 9 lines] > Take care, > Julie Its a known side-effect that it hampers your memory and other mental functions heck when i couldnt remember my phone #, brothers name, had trouble adding etc etc right after I was put on it phenolbarb was the culprit........yet it did work !!!! Plus I was finishing college - more like struggling and begged my neuro to get me off it otherwise i would have never made it George > > > Be glad your getting off the phenolbarbital do you feel improvements > > > with your memory, etc ? It did a real number on me for years [quoted text clipped - 22 lines] > > George Howdy! I haven't had any problems with Keppra! Never had a problem with Depakote either, but they always kept a close watch on my liver while I was taking it! Dave > Howdy! > > I haven't had any problems with Keppra! > > Never had a problem with Depakote either, but they always > kept a close watch on my liver while I was taking it! Hhmmm - I can't still be the only person on this newsgroup that is also on keppra with a combination of other meds, and still gets regular grand-mal seizures approx 2-3 times per month, plus several other smaller types of attack's regularly daily! Keppra is definitely NOT working for me, so in my last meeting with my neuro' he has just suggested to me that I keep my tegretol, as my seizures always begin to increase without it, increase my zonisamide, and completely wean me off my keppra for another new drug called Pregabalin. My point is, yes maybe Keppra works well for individuals with simple partials by itself, but maybe it might be wiser taking it in combination as two small doses with another med' - it might even be easier to get back to normal if it doesn't actually work! Good Luck Sofie  SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ Sofie, Getting the right medication(s) isn't an exact science especially with our Epilepsy.. Luckily we have more medications and more advanced testing to work with than decades ago, but its not as simple as a blood test..... Luckily since my transition began with Keppra as im phasing out Depakote I am still droggy, eyesight blurry, appetite increased (from the Depakote as me and my pharmacist figured out) and possibly lower hemoglobin but I cant confirm that right now. My aura's/petit's/spells also have stopped...I'm hoping it stays that way after the Depakote is diminished...... I read Keppra is one of the "Add on" medications which is used with Tegretol, etc... My Hematologist and Liver doctors were both baffled with my low hemoglobin and high iron which were explained genetically and with other tests to be: -Beta THALASSEMIA trait (usually with low Iron, but not in my case!!) -Positive for heterozygous (both parents) presence of the H63D mutation in the HFE gene (Negative for the C282Y mutation) -Hemachromotosis from Iron overload which is why they told me to stop Depakote and take more liver-safe medication such as Keppra or Neurontin Have you explored Vegal Nerve Stimulator or other options ?? You learn the most from communicating with other patients to find out what they are doing; try their doctors, etc etc Have you tried an Eplileptologist ??? Good Luck George > > Howdy! > > [quoted text clipped - 21 lines] > > Sofie As for a big change im encountering that baffled my pharmacist is my appetite.....I'm so hungry in the afternoon and evening She thinks its from the Depakote decreasing.....and so do I Im calling my Neuro about it tmrow......everthing else seems to be ok lately but its a relatively new medicine and not much is known or available about it ........to be continued........... thanks alot george Here is an update of my transition: major symptoms/changes/problems: - hunger the first week due to the drop in Depakote my pharamacist deduced - dizzyness, co-ordination problems - alot of blurry vision on and off - NO MORE PETIT'S/AURA'S !!!!! Depakote and or my liver situation might have made the medicine ineffective 2 more weeks and then im off Depakote forever..... luckily this Keppra is working out - finding the right medicine is never easy and its worse when your in a situation with my liver and only 2 liver safe meds for seizures are out there!!!! It pays to research and ask around i wasnt sure if this newsgroup was being used much since web sites are all over Thanks alot George
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