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Medical Forum / Diseases and Disorders / Epilepsy / November 2003don't go into the light
Unfortunately I started having seizures again. I haven't had one in over 5 months. I realized the other day when I started to have a seizure, I guess it started with a strong aura. I felt so drawn into it. It felt so good at first like I wanted to go into it. It was like "going into the light". Then I felt like crap when it was all over. I had a seizure 2 days in a row. I realized it's because I started getting my period again. I've been breastfeeding and the baby is 6 months now. I guess I wasn't under control after all. Kris > Unfortunately I started having seizures again. I haven't had one in over 5 > months. I realized the other day when I started to have a seizure, I guess [quoted text clipped - 4 lines] > breastfeeding and the baby is 6 months now. I guess I wasn't under control > after all. My seizures were associated with my cycles for many years, then when I got closer to menopause they were mid cycle, and for a good year or so prior to an abrupt menopause, they came whenever they wanted. It is weird how hormones can influence the body/brain. I've never used the pill or had hormone replacement therapy, and I wonder if that would have made a difference. I don't recall seizures during pregnancy, but that was a longggg time ago, and I didn't know I had epilepsy back then. I do remember shopping when my youngest was a baby (I always shopped with my kids as there was no one to watch them) and having seizures right in the store (back then it was simple partial seizures). Back then I didn't know they were seizures, and I hadn't started my calendar, so I didn't know then they were associated with my cycles. Since I wasn't diagnosed with epilepsy until a year before menopause, I don't know what kind of benefit hormone therapy would have had. I just want to bring up something I noticed with my seizure pattern because it sort of helped me predict if I was over with them or not. I used a calendar to mark not only the days but the time of the seizures and there was a definite pattern. There would be the first seizure of the period, 12 hours later another, 6 hours later another, 3 hours another, 1 1/2 hours later another, 45 minutes later another. Notice how the time is cut in half for each subsequent seizure. After that last seizure, the pattern would reverse, so I could kind of estimate when the last seizure was going to be. It was definitely not fool-proof because once in a while an extra seizure would be added to the end of the cycle (like the next day). To me, it was kind of helpful knowing this pattern because I could plan on avoiding certain activities during that time. I thought this information might be helpful to you although I realize this might not be true in your case. Barb > Kris > > Unfortunately I started having seizures again. I haven't had one in over 5 > > months. I realized the other day when I started to have a seizure, I guess [quoted text clipped - 35 lines] > > > Kris Always known that mine are mid-cycle. They tie in with a massive release of hormones. Doesn't help with the control of them but at least I know why they happen. Around when I ovulate I have seizures - always my worst risk time. My second worst spell is my period, but never as bad as ovulation. I reckon hormones have a lot to do with when I have seizures but there have not been many studies into this. Is this possibly because the medical profession is male dominated? I'd like us to argue for it to be more than anecdotal evidence :-) Ali > Always known that mine are mid-cycle. They tie in > with a massive release of hormones. Doesn't help [quoted text clipped - 8 lines] > like us to argue for it to be more than anecdotal > evidence :-) Ali I was under the belief that there was actually a lot of studies documenting this. Research into therapies for it don't seem to have gotten very far as yet. I work in an epilepsy research lab that's looking into hormone-related therapies for epilepsy. Seems to be a pretty tricky business. I'm not doing that work myself. I can never keep all those hormones straight. :-) Here is an abstract from a very recent review on catamenial epilepsy. You might be able to pick it up at your local university medicine library for just photocopy charges. 1: Neurology. 2003 Sep 1;61(6 Suppl 2):S2-S15. Catamenial epilepsy: Pathophysiology, diagnosis, and management. Foldvary-Schaefer N, Falcone T. Departments of Neurology (Dr. Foldvary-Schaefer) and Gynecology and Obstetrics (Dr. Falcone), The Cleveland Clinic Foundation, Cleveland, OH. In women with epilepsy, seizures can be influenced by variations in sex hormone secretion during the menstrual cycle. The proconvulsant effects of estrogen have been demonstrated in both animals and humans, whereas progesterone has been found to have anticonvulsant properties. Catamenial epilepsy affects approximately one-third of women with epilepsy. This type of epilepsy has generally been defined as an increase in seizure frequency beginning immediately before or during menses. However, three distinct patterns of catamenial epilepsy have been described: perimenstrual, periovulatory, and luteal. The diagnosis of catamenial epilepsy can be made through careful assessment of menstrual and seizure diaries and characterization of cycle type and duration. A variety of therapies for catamenial epilepsy have been proposed, including acetazolamide, cyclical use of benzodiazepines or conventional antiepileptic drugs (AEDs), and hormonal therapy. However, evidence for the effectiveness of these treatment approaches comes from small, unblinded series or anecdotal reports. Larger multicenter trials, as well as further investigation of the pathophysiology of the disorder, are needed to identify the most effective treatment for women with catamenial epilepsy. I guess this would explain why I started getting seizures when I was 11 and I started getting my period. Kris > > Always known that mine are mid-cycle. They tie in > > with a massive release of hormones. Doesn't help [quoted text clipped - 57 lines] > with > catamenial epilepsy. > I guess this would explain why I started getting seizures when I was 11 and > I started getting my period. [quoted text clipped - 60 lines] > > with > > catamenial epilepsy. Found this really interesting Klenow - it was my GP that told me that evidence was 'only anecdotal' when I suggested a pattern to him. He had asked me if I had spotted any triggers but he was only interested in flashing lights, cream cheese sort of answers! Sorry for my ignorance but I don't know what you mean by catamenial epilepsy. Cheers, Ali. I agree 1000% on the comment regarding anecdotal evidence. That's why I like this discussion group so much -MDs simply don't know what I'm talking about. > > > Unfortunately I started having seizures > again. I haven't had one in over 5 [quoted text clipped - 80 lines] > like us to argue for it to be more than anecdotal > evidence :-) Ali I attend regular epilepsy research meetings and often speak with neurologists, psychologists and psychiatrists who "specialize" in handling epilepsy patients, and they regularly complain about how little GPs know about epilepsy. In fact, according to my professor, pharmacists get much more training about epilepsy than the MDs do at the medical school here (he's the one doing the training for both). It therefore seems reasonable to take what your GP says with a grain of salt until you've spoken to a specialist. Seems that way to me anyway. > I agree 1000% on the comment regarding anecdotal evidence. That's why I like > this discussion group so much -MDs simply don't know what I'm talking about. [quoted text clipped - 83 lines] > > like us to argue for it to be more than anecdotal > > evidence :-) Ali I have a great neurologist (a woman!!) who recently wrote a book about women and epilepsy, called Women With Epilepsy: A Handbook of Health and Treatment Issues, edited by Martha J. Morrell, M.D. and Kerry Flyn, M.A. (Cambridge University Press) It includes a whole chapter on seizures and the menstrual cycle (catamenial seizures) as well as chapters on sex, menopause, hormones, pregnancy, other health issues, and a historical perspective of women and epilepsy. A whole host of prominent people have written chapters in it including Orrin Devinsky, MD who is a pretty big name in the field. I was just given the book yesterday when I went to see Dr. Morrell and haven't had a chance to read much past the 2nd chapter. But, I like what I've read so far and have learned a few new things, which is great since I was diagnosed 12 years ago. On the aura front, I also have an amazingly euphoric feeling before a seizure--it's like being inside sound and color. Sometimes wonder why it is I take medicine--until seizure time--then I remember and the whole cycle starts over again. Anyway, check out the book I mentioned if you have a moment and hope it helps. --Joanna > I agree 1000% on the comment regarding anecdotal evidence. That's why I like > this discussion group so much -MDs simply don't know what I'm talking about. [quoted text clipped - 83 lines] > > like us to argue for it to be more than anecdotal > > evidence :-) Ali My epilepsy started soon after I started taking contraceptive pills, which I suppose could be regarded as hormones kidding your body you're pregnant. That was more than 30yrs ago but I soon learnt from the British Epilepsy Assoc. that epilepsy does show a tendency to start or stop at puberty, pregnancy or menopause. Mine did seem to be related to my menstrual cycle even when I was not using contraceptive pills. They haven't stopped with my menopause. Unfortunately, my menopausal symptoms have been very bad and doctors take my husband's word that I am better when I'm on HRT. It has taken about 3yrs to persuade a consultant psychiatrist that I should be given any anti-depressant because he was so frightened that I'd have more fits. Chris L. In article <fyGqb.14341$9M3.12671@newsread2.news.atl.earthlink.net>, > Unfortunately I started having seizures again. I haven't had one in over 5 > months. I realized the other day when I started to have a seizure, I guess [quoted text clipped - 5 lines] > after all. > Kris
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