hello everyone. so here's my epilepsy history. the abbreviated version, anyway. i'm just gonna put this banana here because i like bananas. :banana:
i'm new here. when i was about 12 i had a grand mal seizure which led to testing. my initial diagnosis was generalized epilepsy. i am now 26. since i was a preteen i've been encouraged to join forums and/or support groups but always ignored those suggestions. i think i was in denial for a very long time, especially in my teens. i think a big part of my denial stems from the fact that i mainly experience absence seizures. most people don't recognize them as seizures.
in college i was taking topomax for a couple years, which at first was great for treating my seizures, but turned out to be a terrible time overall. i lost a dangerous amount of weight for my height/frame. the medication also hyped up my generalized anxiety to the point that i was having regular night terrors, occasional night hallucinations, and becoming agoraphobic during the daytime. i was so engrossed in my anxiety at the time that i had no idea what i was going through was really just a result of the medication. thankfully when i went off it, i gained the weight back pretty much over night.
anxiety has been more of an uphill battle for me. i am anxious about pretty much anything there is to be anxious about under the sun.
a couple of years ago i had a neuro in boston who wanted me to do a 5 day in hostpital video eeg because i had described some symptoms that sounded to her like they might not be symptoms of generalized epilepsy, which has always been my diagnosis. at that time i was on 6 pills (3000mg) of keppra and 1000mg of depakote. i was told my dosage would me lowered slowly and that i would be sleep deprived. well, my dosage wasn't lowered much and the nurses barely sleep deprived me. chilling out in bed relaxed watching tv, i KNEW i wasn't going to have a seizure. my triggers are always stress and lack and sleep. i was aggravated at the end of the week and was sure that nothing had shown on the eeg... and I was right. despite that my neuro still wanted to raise my depakote. i didn't at all comprehend why. it could have been that she was explaining it poorly, or it could have been that she was just trying to appease me after a crap week in the hospital. either way, i left insisting i was not going to take any more medication.
fast forward a couple years to 2015. i'm living with my parents after christmas in order to save some money before heading off to do some traveling. my mom wants me to see a neurologist before i go to make sure everything is alright. i agree and find someone under my new healthcare. i'm a little skeptical when he would like me to do an at-home video 3-day eeg, but i agree because he is by far the most thorough, personable neurologist i have ever encountered...
i wore the dang electrodes on my skull all weekend, and felt much the same way i did during that first video eeg. super irritated and convincved that the video would show zilch. so, when i went for my followup, i guess i was quite upset and shocked to discover the opposite- that i am apparently still having absence seizures "all the time, constantly". i found this hard to believe and even my mom did. she was in and out of my room a ton that weekend (i mostly stayed in bed watching movies). he strongly recommended that i completely switch up my meds. basically a reversal...
so i'm going from 3000mg keppra / 1000mg depakote to
25000mg depakote / 15000mg keppra + 50mg topomax
i was upset about the change because i hadn't felt like for the past few years anything had particularly warranted a change. the way he explained it to me, though, was that i/others may not realize i'm having absence seizures, but that i still have them so frequently that it walks the line of being a larger problem. i guess i am just supposed to trust that because he is the doctor.... i did get a second opinion from a highly regarded eeg sepcialist who agreed with the medication change, so there is that.
so far the shift has been kind of miserable. thankfully i work full time for my stepdad and he has been letting me miss mornings at work because i've been so lethargic, even though i'm in bed by 9pm. i've also had waves of nausea that come and go, confusion, inability to concentrate.. and so on. at work i notice i'm really slow doing simple things i can normally do really quickly, and at yoga my balance has been all over the place and i've been really anxious and fidgety in svasana the past several days. please assure me these things pass!
i'm new here. when i was about 12 i had a grand mal seizure which led to testing. my initial diagnosis was generalized epilepsy. i am now 26. since i was a preteen i've been encouraged to join forums and/or support groups but always ignored those suggestions. i think i was in denial for a very long time, especially in my teens. i think a big part of my denial stems from the fact that i mainly experience absence seizures. most people don't recognize them as seizures.
in college i was taking topomax for a couple years, which at first was great for treating my seizures, but turned out to be a terrible time overall. i lost a dangerous amount of weight for my height/frame. the medication also hyped up my generalized anxiety to the point that i was having regular night terrors, occasional night hallucinations, and becoming agoraphobic during the daytime. i was so engrossed in my anxiety at the time that i had no idea what i was going through was really just a result of the medication. thankfully when i went off it, i gained the weight back pretty much over night.
anxiety has been more of an uphill battle for me. i am anxious about pretty much anything there is to be anxious about under the sun.
a couple of years ago i had a neuro in boston who wanted me to do a 5 day in hostpital video eeg because i had described some symptoms that sounded to her like they might not be symptoms of generalized epilepsy, which has always been my diagnosis. at that time i was on 6 pills (3000mg) of keppra and 1000mg of depakote. i was told my dosage would me lowered slowly and that i would be sleep deprived. well, my dosage wasn't lowered much and the nurses barely sleep deprived me. chilling out in bed relaxed watching tv, i KNEW i wasn't going to have a seizure. my triggers are always stress and lack and sleep. i was aggravated at the end of the week and was sure that nothing had shown on the eeg... and I was right. despite that my neuro still wanted to raise my depakote. i didn't at all comprehend why. it could have been that she was explaining it poorly, or it could have been that she was just trying to appease me after a crap week in the hospital. either way, i left insisting i was not going to take any more medication.
fast forward a couple years to 2015. i'm living with my parents after christmas in order to save some money before heading off to do some traveling. my mom wants me to see a neurologist before i go to make sure everything is alright. i agree and find someone under my new healthcare. i'm a little skeptical when he would like me to do an at-home video 3-day eeg, but i agree because he is by far the most thorough, personable neurologist i have ever encountered...
i wore the dang electrodes on my skull all weekend, and felt much the same way i did during that first video eeg. super irritated and convincved that the video would show zilch. so, when i went for my followup, i guess i was quite upset and shocked to discover the opposite- that i am apparently still having absence seizures "all the time, constantly". i found this hard to believe and even my mom did. she was in and out of my room a ton that weekend (i mostly stayed in bed watching movies). he strongly recommended that i completely switch up my meds. basically a reversal...
so i'm going from 3000mg keppra / 1000mg depakote to
25000mg depakote / 15000mg keppra + 50mg topomax
i was upset about the change because i hadn't felt like for the past few years anything had particularly warranted a change. the way he explained it to me, though, was that i/others may not realize i'm having absence seizures, but that i still have them so frequently that it walks the line of being a larger problem. i guess i am just supposed to trust that because he is the doctor.... i did get a second opinion from a highly regarded eeg sepcialist who agreed with the medication change, so there is that.
so far the shift has been kind of miserable. thankfully i work full time for my stepdad and he has been letting me miss mornings at work because i've been so lethargic, even though i'm in bed by 9pm. i've also had waves of nausea that come and go, confusion, inability to concentrate.. and so on. at work i notice i'm really slow doing simple things i can normally do really quickly, and at yoga my balance has been all over the place and i've been really anxious and fidgety in svasana the past several days. please assure me these things pass!
