Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. The condition is named fr...
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Anyone on cpap therapy able to get off their meds?
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I had my first seizure, in my sleep 25 years ago. At the time, I noted to my doctor that I was sleepy a lot, and he said just get some more sleep. EEG was fine, but I was put on dilantin anyway. 5 years later, and after no more seizures, we wanted another baby, and asked the doctor about getting off of the dilantin and he said" don't worry about it, if the baby turns out funny looking you can just blame your husband. " I weaned myself slowly off of it, got pregnant, and and had no more seizures until the baby was 10 months old, not sleeping hardly at all, so I had another one in my sleep. I ended back on dilantin, which worked fine for about 8 years when I started having problems with "space out" seizures. By that time sleep apnea was being talked about, and since I have always had problems with my sleep, and snored loud enough to wake the dead, I asked for a sleep study. It was inconclusive, because I did not sleep long enough to get good data, and no follow up was done. Just more meds that didn't work much, or made things worse. Speed up about 10 years, I couldn't stay awake hardly at all, a new neoro came on board, so I asked for another sleep study. Mega severe sleep apnea, I stop breathing at least 89 times an hour, almost twice that much if I sleep on my back. I have been very successful with my cpap machine, it is my best friend, and I no longer have seizures. The last one was a tiny one 7 months ago when I as switching over from dilantin to a generic version. I want off of the med, but my doctor gave me the lecture . I have had many eegs, and none of them have showed any problems, the mri done 12 years ago was fine. I don't drink alcohol. I don't drive, and never have. I will get a battery back up for my cpap machine before I go off of my meds. My doctor wants me to wait until september, then do a mri and an eeg before she and I decide what to do with the dilantin. I fully understand the dangers of seizures, but I think the risk of continuing on dilantin for a lifetime is worse than my current risk of seizures. Thanks for reading my ramblings, any thoughts? Virginia
Posted on 05/15/08, 09:05 am |
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I tried everything else, but that was 10 years ago. I believe the reason dilantin helped is because it is a sedative, so I am able to sleep a little more than with the other meds, and it also dilutes the blood. I'm not too sure about the exact terms, but sleep apnea can make your blood thick. When I was having hundreds of little space out seizures a day, I added a daily aspirin to my regimin. The seizures were cut in half . My neoro at the time thought I was nuts " you know aspirin isn't an anti-convulsiant." Of course it isn't , but I needed more oxygen in my brain, and aspirin did the job. I don't take it now, because of the dilantin. My neoro now is the kind just told me to take vitamin D to counteract the effects of the dilantin. I renewed my prescription, and I'll let my insurance pay for these tests, but I'll go to the other doctor in my HMO if I can't get her to agree that she is casting an arm that isn't broken. Virginia 
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Hi Virginia,
Vitamin D alone won't help combat problems associated with Dilantin. It's one of the AEDs that is known to cause osteporosis so you need to be taking a daily dose of both Calcium and Vitamin D with it. http://www.newsinferno.com/archive... Unfortunately, no neurologist told me that (the drugs were new) and after decades on AEDs, I have osteoporosis.
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I take a calcium supplement, with d and magnesium. I have just started this , however. Before the last year, I was too doped up on anti-depressants to give a care. Like you, no doctor told me to do this. My mother had severe problems with osteoporosis,I do not want to take that chance. Thanks for the link, I'll look at it. Virginia
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