Random's story sounds alot like mine. My first seizure, (although I wasn't sure whether or not that's what it was) happened in 1996 while napping on the couch with my 12 month old baby. I awoke on the couch to find myself "soaked" and thought my son's diaper had leaked. I felt so disoriented, exhausted and weak. I rolled off the couch and when I tried to stand I collapsed to my knees. I began to mutter a common obscenity (oh #@*$ !) and a deadening pain shot through my tongue. I stumbled into the bathroom and pulled myself up to the sink to look at myself in the mirror, both my legs had "charlie horses", I was shaking and it felt like something was pushing me back down. I opened my mouth and my tongue was so swollen it looked like it didn't fit in my mouth and it had a huge row of bloody teeth marks across the tip of it. I was bewildered and scared and I crawled back to the living room to make sure my baby was okay-he was still sleeping soundly as if nothing had happened. I grabbed the phone and called my dad because he was the only one I knew of that would be home at that hour and told him what I thought had happened, my speech real slurred. I also told my husband when he came home from work. Unlike Random, I didn't go to the doctor as I was unsure if it actually
wasa seizure or not because there were no witnesses and I had never had a seizure before-I mean, who gets them in their sleep, right?
On February 25th, 2000 I was awakened by a sheriff/paramedic in my bedroom saying my name repeatedly and asking me if if I was okay. Glaring at him I tried to utter the word "WHAT!?" and had a familiar excruciating pain in my tongue causing me to whince as I had once again bitten it. Same charlie horses in my legs and weakness I felt that day in 1996. I was taken by ambulance against my will after being asked if I had done any drugs or if I had drank any alcohol, or if I was on any medications. I had stopped taking paroxatene for "depression" (which rarely helped me anyway and only seemed to make me angry instead of depressed) months before the incident and was on no other drugs, prescribed or otherwise, and did not drink at all. I was given a battery of tests-MRI, EEG, CT-scan--that turned up no tumors, lesions, bleeds, scar tissue, etc. I was given a prescription for "depakote" (which I never filled) as I had reported at the hospital that this had happened to me before.
I refused to take medication for something that I believed was just a sympton of a serious problem they had not identified and I believed that if I took the medication it would only alleviate the symptom while the "problem" continued to "grow". My refusal prompted the onset of another seizure in 2003 while, again, sleeping. By the end of 2003 I was having a seizure every other month, without failure, during menstrual cycles or within days just before or after, while sleeping. I never consulted a doctor for any of them as I knew they would only try and get me to take "the drugs"! Talk about stubborn and stupid!
I kept a sleep diary for over two years, trying to identify a link between food, sleep, mood, drink, sleep patterns, etc. to the onset of seizures, by changing everything, one thing at a time-to no avail. I was told repeatedly by my husband, "I just know I'm going to wake up one of these days and find you dead beside me! If you don't take the medicine I'm getting a divorce!". I didn't want him to leave me but why couldn't he understand I had to know! The only links I ever found for all the seizures were sleep, caffeine intake, and mentruation.
Since I had meticulously documented the dates of all the seizures I had them narrowed down to approximately
1 every 56 days . The "knowing" it was coming, just a question of "when", now was affecting my ability to sleep as I found myself in bed, staring at the ceiling at night, afraid to fall asleep, asking myself, "Am I gonna have one tonight?". After I stopped sleeping, I stopped eating, and I lost 25 lbs. in 3 months. I began having chest pains frequently at the age of 36 and I broke down and made an appointment at a cardiologist's office, and he told me if I didn't make some changes I would not be around in a year. I knew what he was talking about but I didn't share that information with him, and I had another seizure coming any day now according to my sleep diary. I made an appointment with that same neurologist that prescribed the meds that I wouldn't take so long ago, who now was asking me "what are you doing here? I can't do anything for you if you won't take the medicine." as I sat on an examining table sobbing. I had to admit to myself, out loud, that I was epileptic. Period. I requested a medication that could serve as not only an anitconvulsant but a mood stabilizer as well because I was pretty sure I am bipolar as well. My doctor explained that epilepsy could have caused the bipolar disorder but I am pretty sure that I was bipolar ALOT longer than I had been epileptic and often wonder if that caused the epilepsy. My doctor was shocked that I had already been keeping a sleep diary and that he had never had a patient who kept one without having been told to and had let it go on for so long.
I haven't had a seizure since July of 2006, but I have caused myself irrepairable brain damage in my quest to find answers. I always had a high IQ (common sense was obviously a little lacking though!) and feel that I am now "stupid". I have short term memory loss and embarrassing moments of fumbling for words, and I cannot have anything caffeinated (including chocolate
) after 5pm because it gives me a "spinning" sensation when I start to fall asleep-- and I still have no answers. But thank God it appears to be over.
I have never had the occasion to share my story with a single person who actually believed the "sudden unexplained onset of sleep seizures every other month" story, but I'm thinking now after reading Random's post, ( first seizure being in August and the next being in October, who knows how the interval between seizures would have worked out?) that she might believe. Thank you for sharing your story.