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Old 08-19-2002, 11:12 AM   #1
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Question Phenobarbital, nocturnal seizures

I had my first seizure ever in October of 2000. I had just quit taking Paxil for 3 months and went off of it cold-turkey. My "sample pack" ran out and I didn't want to be 27 years old and already on a daily regimine of prescription pills. Paxil also clouded my reality and made everything "seem" better when really my problems were still there. Three days after I quit, I had my first seizure ever. I wonder if the Paxil started this condition but that is another topic altogether.

I didn't go on any AED's at the time because I thought I would be lucky enough to be a single episode case because no one in my family has ever had epilepsy and I was having withdrawl symptoms from the Paxil. I eventually did have a second seizure, almost eight months later while taking no meds. I had auras for hours leading up to the second seizure and I had felt that weird feeling a few months earlier but no seizure. I didn't know what it was and I am not sure if I had auras warning me of my initial seizure as as was having withdrawl effects of the Paxil. Every seizure I have had since, I have had auras. One other time I was having auras in the morning so I went back to bed and woke up later and was fine. I never had "auras" or seizures before I took Paxil. I would say that 50% of my auras become GM seizures but I always have auras (so far).

Anyway, here is a list of the seizures I have had so far.

1st-10/9/00
2nd-5/30/01-prescribed 400mg Dilantin
3rd-4/5/02-6:30 A.M. (woke from sleep) prescribed 750mg Depakote and slowly weened off Dilantin due to raised liver enzymes.
4th-8/11/02-9:30 A.M. (woke from sleep)
5th-8/11/02-1:30 P.M. (woke again from sleep)-prescribed Phenobarbital

All grand mal

When I called the Nuero and talked to the nurse, she said my Depakote level was fine and acted rather put out with a "I don't know what to tell ya" attitude. I told her the last three seizures I had were in my sleep and she said, "I'm going to go ahead and write you out a prescription for Phenobarbital." The prescription states to take it at night but I don't don't want to be on more prescription medicine. I have heard that Phenobarbital is addictive and eventually can cause seizures. I don't need more problems.

Should I take the Phenobarbital (1gm) every night before bed or should I just save them and take them when I have an aura? I have heard Phenobarbital is good at stopping seizures as they occur.

I am 29 years old currently and I pray that someday I "outgrow" this epileptic condition or at least get it under control. It is really taking it's toll on me mentally. I am scared to even leave the house anymore. The last seizures I had really took me awhile to recover from (around a week), but maybe that's because I had two GM's so close to each other. I felt really mentally drained and my memory felt washed but it is slowly coming back.

I don't live the most perfect of lifestyles either. I still occationally drink a few beers and I know this does not help my condition. I smoke pot frequently also. Having E doesn't want to make me do these activities less either although I know I should. It's actually quite the opposite. I have never had a seizure while drinking or smoking pot, but I almost always did the previous day before a seizure.

Also, the nurse said nothing about not driving. Can I still drive? Can you drive if your seizures are nocturnal? I live in the state of Missouri and the law here is 3 months no driving as far as I know but I have seen people in here that state that that does not apply to nocturnal seizures. I was only driving 12 miles a day to work and back and I think that will be the extent of my driving for the remainder of my days, or at least until I go a few years seizure free. I would never be able to live with myself if I hurt someone. I didn't ask the nurse 'cause she already sounded like she was going out of her way to help me. Kinda sucks cause I like my Nuero but his nurses need to either get a better attitude or get into a profession that they want to do. I quess everyone has a bad day every now and then. I havn't drove since I had my last seizures and I don't think I am going to for 3 months but I am just curious.

Anyway, any comments or suggestions about the Phenobarbital would be greatly appreciated as well as any other comments or suggestions anyone may want to make. I am looking for answers and suggestions.

 
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Old 08-20-2002, 08:13 PM   #2
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Hello. Regarding the Phenobard, if it is a pill, you should be taking it as prescribed wich I imagine is every night. I have not heard of using it only in case of auras which are by the way simple partial seizures themselves. It takes at the very least 30 minutes to dissolve, and then it has to get into your circulation to be effective so saving it for use in case of auras doesn't make sense to me. Are you seeing a general neuro or an Epileptologist who specializes in Epilepsy and who sees Only epilepsy patients; no headache patients, etc. I cannot stress enough how important it is to be treated by an Epilepsy Specialist at a good patient oriented Comprehensive Epilesy Center. Please read How to Find a Doc or Facility. I think there is a thread here called that. From my own experience and from havind read other's posts, docs and staff tend to blow us off! They should not do that and if one does, I do let them know that I didn't at all appreciate it. I also look for another doc. Please do find a good Epleptologist. All patients deserve to be treated with dignity and respect. I don't care how bad that nurse's day was. She is su[posed to be professional. If they have a complaint dept, tell them you didn't appreciate iut. That way may keep it from happening again. Do find the Specialist, Epileptologist!!! That nurse didn't seen to put a great deal of thought in the decision to add Phenobarb to all that you are already taking. Too much meds can cause seizures too! You will find a lot of staff as well as general neuros who do not know epilepsy as well as you do. That is a real shame and is inexcusable, but it is true! Tattoo

 
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