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Medical Forum / Diseases and Disorders / Epilepsy / June 2006Withdrawing from phenobarbital-LONG POST
Hi gang, as I have shared with the group, I am seeing a epileptologist at the Idaho Comprehensive Epilepsy Center. If any of you are not getting good control with your seizures, or you haven't found the treatment that works for you, meaning the side effects are unacceptable, I encourage you to go to a comprehensive epilepsy center. The average person waits something like 14 years before they finally get help. If you haven't been helped within a couple years, you need to get to an epilepsy center. I started to slowly withdraw from phenobarbital after first slowly adding keppra. It was going to take 10 months to get off the phenobarbital. Now I think it will take longer. I was decreasing my dose by 1/2 a pill per month. The pills are 32.4 mg each and I started with four. I am down to two pills per night, but I noticed flu-like symptoms this week. I had reduced my medication on the 18th. Then I remembered that I had these same symptoms last month and the month before. I just thought I had a touch of the flu and it went away in four or five days. I called the doctor's office and he agreed that my symptoms were withdrawal symptoms. So he told me next time to drop the decrease even slower. I will get a prescription for the next lower dose (I think it's 15 mg) because it really doesn't work to cut a pill into quarters ;-) I'm not upset about the side effects. I'm actually happy that I figured out what was wrong. Doctor Wechsler told me next month to time my reduction to hit me on a weekend. I am so much looking forward to getting off this drug. I have already noticed a difference in my mental ability. Yesterday I was riding in the car with my husband and doing some math in my check book. It seems like my math skills are quicker, but I was still having problems with my word skills. I think math skills use a different part of the brain. Anyone know that for sure? Also since I've started to decrease my phenobarbital my dreams are much different. Very unusual dreams, and I can actually remember them when I wake up. I've been working like crazy. All of a sudden my website design clients are crawling out of the woodwork needing redesigns and new designs. I had to get two clients up and running quickly by today because one (a cafe/deli) is being reviewed in our local newspaper today. You might be interested she is from Poland. http://www.tresbonnecuisine.com/ Take care, Julie > Hi gang, as I have shared with the group, I am seeing a epileptologist > at the Idaho Comprehensive Epilepsy Center. If any of you are not [quoted text clipped - 18 lines] > (I think it's 15 mg) because it really doesn't work to cut a pill into > quarters ;-) *** When I was reducing dose of a different pill (Tegretol), it was also a pill that could be broken in half-- rather than drop e.g. half a pill (of 4), we did a week of 2 pills one night, 1.5 pills the next, 2 pills next then 1.5 pills for a week, *then did 1.5 pills for a week, **then night dose of 1.5 pills and 1 on alternate nights for a week, then *1 pill each night for a week... We did bloodwork for my type (Tegretol) at end of the week I took only one pill (200mg) down from the 2 per night, and then 2 weeks after I was off the full night dose of Tegretol. Around middle of this we started up a newer pill I was to take at night time for my type of szrs. I wondered if they might be dropping your dose faster than was working, and if you could use (above) a week of alternate nights? between a dose and its lower step? The pharmacy could possibly tell if that would work better, since they get the scripts the Doctors may not have time to read. // > I'm not upset about the side effects. I'm actually happy that I figured > out what was wrong. Doctor Wechsler told me next month to time my [quoted text clipped - 8 lines] > different. Very unusual dreams, and I can actually remember them when I > wake up. ***G. I had thought we only remember dreams when we wake up during them-- we supposedly have 4-6? REM sleep dreams during the night (Rapid Eye Movement)... so it sounds? like you might be having more restless sleep during the withdrawal than you usually have? // > I've been working like crazy. All of a sudden my website design clients > are crawling out of the woodwork needing redesigns and new designs. I [quoted text clipped - 4 lines] > Take care, > Julie > *** When I was reducing dose of a different pill (Tegretol), it was > also a pill that could be broken in half-- rather than drop e.g. half a [quoted text clipped - 12 lines] > that would work better, since they get the scripts the Doctors may not > have time to read. // Thanks for the advise, G.R, but actually the doctor is very well versed in how to slowly drop off phenobarbital. He is a neurologist who specializes in epilepsy. He told me that because this barbituate has been in my system for so long - 30 years - we will have to be very careful in the reduction. That is why we will change it next month to even less of a reduction. Also I do not reduce it in a matter of weeks, I wait a month before I take the next step. I spoke to another doctor at a recent conference and he said the same thing, that you have to do it very slowly, but he definitely recommended changing drugs. >>Also since I've started to decrease my phenobarbital my dreams are much >>different. Very unusual dreams, and I can actually remember them when I [quoted text clipped - 4 lines] > Eye Movement)... so it sounds? like you might be having more restless > sleep during the withdrawal than you usually have? // Actually the change in dreams has been continuous since I started taking Keppra and going off phenobarbital. So I was thinking maybe it just has to do with being less drugged out on phenobarbital. Julie >> I wondered if they might be dropping your dose faster than was >> working, and if you could use (above) a week of alternate nights? [quoted text clipped - 9 lines] > even less of a reduction. Also I do not reduce it in a matter of weeks, > I wait a month before I take the next step. My own case perhaps isn't comparable as I was on phenobarbital for only ~2 years and not 30, but still enough time to develop an addiction. I believe that your problem is the physical addiction to a barbiturate. > I spoke to another doctor at a recent conference and he said the same > thing, that you have to do it very slowly, but he definitely recommended > changing drugs. My doctor wrote out a ~1 week schedule for me of phasing out the phenobarbital dose and phasing in the dilantin dose. I went through a rough period following that and always attributed it to the fact that he has prescibed too high of a dose of dilantin for me. Perhaps part of the problem was withdrawal. >>> Also since I've started to decrease my phenobarbital my dreams are much >>> different. Very unusual dreams, and I can actually remember them when I [quoted text clipped - 8 lines] > Keppra and going off phenobarbital. So I was thinking maybe it just has > to do with being less drugged out on phenobarbital. My nightmares have been more or less the same under dilantin as with phenobarbital. > My own case perhaps isn't comparable as I was on phenobarbital for only > ~2 years and not 30, but still enough time to develop an addiction. I > believe that your problem is the physical addiction to a barbiturate. Yes, that is true. And in my case because it has been thirty years, it will take longer to slowly get off the drug. > My doctor wrote out a ~1 week schedule for me of phasing out the > phenobarbital dose and phasing in the dilantin dose. I went through a > rough period following that and always attributed it to the fact that he > has prescibed too high of a dose of dilantin for me. Perhaps part of the > problem was withdrawal. About 15 years ago I tried going off phenobarbital and on newer AED meds. Both meds I tried made me miserable. But after discussing my side effect with my new doctor, we have come to realize the side effects I was experiencing was not necessarily the new drug, but rather the effects of withdrawing from phenobarbital. And back then that doctor had "slowly" taken me off phenobarbital in a matter of a couple weeks. I just remember being so miserable that I felt like life wasn't worth living. I wasn't told that my problem was withdrawal from phenobarbital, but my understanding at the time was that I couldn't handle the new drugs. That doctor put me back on phenobarbital. I was discussing this with someone the other day. This experience actually kept me from trying any of the new drugs for 15 years. Because I didn't want to go through that misery. I am so glad that I am working with a doctor that has the experience. He consults with other doctors at epilepsy centers, so I have a lot of confidence in him. That is why instead of fearing going off the phenobarbital, I am excited about the future. But I do realize it will take a very very long time, possibly over a year. My doctor told me this from the beginning, so I knew what to expect. Julie > > My own case perhaps isn't comparable as I was on phenobarbital for only > > ~2 years and not 30, but still enough time to develop an addiction. I [quoted text clipped - 21 lines] > understanding at the time was that I couldn't handle the new drugs. > That doctor put me back on phenobarbital. *** What I described earlier was reducing Tegretol (one that also shouldn't be stopped abruptly) night dose from 2 pills to replace them with another med. (Frisium). That was done over 8 weeks, and bloodwork done at week 4 and about week 10 (after being off the night dose 2 weeks). The replacement pill in my case was started about week 3 or 4, and increased at wk. 8 (mgs. aren't comparable between the 2 pills so I didn't list them). (I still take the morning dose I've used since about 1995.) I had just wondered if rather than trying to get off a pill in one week (I put **s above in your post), if it should have been spread out over 1-2 months. My tablets were solid and could be broken in half so moving down from 2 solid tablets (4 halves) was earlier to do that some other types of pills. I thought usually a Dr. wouldn't dump a med. faster unless someone was having e.g. an allergic reaction to it, and that would have shown up earlier in its use? than in your case.. G./ > I was discussing this with someone the other day. This experience > actually kept me from trying any of the new drugs for 15 years. Because [quoted text clipped - 7 lines] > knew what to expect. > Julie I corrected 2 typos in reply below. ... Background noise in my house caused mis-checking of my typing before I hit send.... I need earmuffs... G./ > > > My own case perhaps isn't comparable as I was on phenobarbital for only > > > ~2 years and not 30, but still enough time to develop an addiction. I [quoted text clipped - 50 lines] > > knew what to expect. > > Julie >>> My own case perhaps isn't comparable as I was on phenobarbital for only >>> ~2 years and not 30, but still enough time to develop an addiction. I [quoted text clipped - 31 lines] > week (I put **s above in your post), if it should have been spread out > over 1-2 months. My memory wasn't certain about the timeframe but I was fairly sure that it didn't matter in relative terms. It doesn't as it turns out, but I just dug out the slip he wrote up and it amounts to 3 real weeks of phenobarbital reduction. Wk 1 3x64mg/day pheno per normal dose, add 200mg dil/day to the mix Wk 2 reduce pheno to 2x64mg/day, dil up to 100 + 200mg/day Wk 3 reduce pheno to 1x64mg/day, dil up to 2x200mg day Wk 4 no pheno, dilantin 400mg/day It would have worked out much better if the idiot hadn't prescribed an overdose of dilantin. At my body weight, pretty average, the dose should have been 300mg/day, not 400! I was stumbling into walls, seeing double when looking at the monitor with red fringes around it all. Felt gawd-awful too. Reduction to 300mg relieved that misery and I gradually got to where I am today and it took awhile. In retrospect, that "awhile" might be the time it took me to get over my barbiturate addiction and stabilize. Things aren't right and never will be, I suppose, but it's all much better than when I was on phenobarbital. Too bad he hadn't started me on it. > I have already noticed a difference in my mental ability. Yesterday I was > riding in the car with my husband and doing some math in my check book. > It seems like my math skills are quicker, but I was still having problems > with my word skills. I think math skills use a different part of the > brain. Anyone know that for sure? It can be said that antiepileptic medications can slow down the brain in an effort to prevent the uncontrolled seizure events. Therefore, when one would come off the medication, or go to a different medication, one might notice a change in one's ability to think.
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