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Narcolepsy & epilepsy
Sun, 02/01/2009 - 11:09I'm new here. It's one of those things that I kept meaning to do. But this has been on my mind a lot lately, so maybe someone has some insights.
I'm epileptic & narcoleptic, taking provigil and lamictol (which is also supposed to help me with bipolar disorder). I was taking carbamezapine with good results, except I wasn't functional. I walked around (when I wasn't sleeping) in a complete fog. I talked my neurologist into trying me on other meds, but so far my narcolepsy and epilepsy both seem to be poking back through to the surface (more frequent seizures and crashing at 7-8 pm, even while eating dinner). Is there anyone else around here with both? If so, what has helped?
Comments
Re: Narcolepsy & epilepsy
Submitted by Revelation 21.4 on Wed, 2012-07-18 - 17:35
Hello I have both narcolepsy and epilepsy. Just to give a brief backround. I was diagnosed with JME or generalized epilepsy around 12/13 years old and have had off and on seizures ever since. Most of my seizures or grandmal(myoclonic). I haven't had a petite or partial in over a decade. They only happend early in my teens near diagnoses. Since my teens years.. probably near end of puberty 17/18 I noticed that my sleep rythm was off. I started to develop insomnia. I started experimenting with different supplements like Valerian,GABA,Magnesium, Melatonin, Herbal sleep tea's, 5-htp, and many others. For years they helped with insomnia till I got into my mid 20's and a lot of things did not work like they used too. Around 26 years of age my narcolepsy symptoms really became manifested. I was just exhausting all the time and noticed I would completely crash in the afternoons every day at work. I started out going to my PCP for tests and nothing would ever come back abnormal. I saw a pychiatrist and she thought it was just depression and wanted me on zoloft but I ignored that and kept increasing my supplement doses to mask these issues before the issues became so bad I had to quit work. I eventually got on state medicaid and this is what really helped me get to the right doctors. I casually went to a sleep Dr. just for my insomnia because I never saw one. Had 2 sleep studies and both confirmed I had narcolepsy without catoplexy. I was 28 at this time. I fall into REM sleep within a few minutes and stay in that stage the majority of the night. Always wake up tired no matter what. This explained a lot. All while I was experiencing these problems my seizures came back. I was actually 3 years seizure free without medications from 23-26 years old. Because I was not sleeping much and so poorly I started to get seizures from the sleep deprivation. Since they have started at 26 again I've had problems getting them under control and all while dealing with the side effects of the AE medications. I started out with zonegran, controlled them well but I also slept well So I believe this was the major reason it worked. I started to develop severe depression and suicidal thoughts though so I had to get off that. I switched to lamictal. Lamictal was very stimulating for me and gave me anxiety and severe insomnia. I could not sleep without trazodone or lorazapam. Because of the lack of sleep I had the most seizures in my life while on lamictal for almost a year. I think it was actually pro-seizure for me even though the Dr. was denying the evidence. Soo then I switched to depakote because the lamictal wasn't controlling the seizures. Depakote worked but again like zonegran it helped me sleep but eventually it's sleep effects faded away and seizures returned after a year. It seemed to also intensify the sympoms of my narcolepsy. Severely vivid dreams and excessively tired constantly. It also led to depression and a lot of weight gain. Because of all that NOW I'am on KEPPRA. I was initially feeling better getting off the depakote but once the KEPPRA finally kicked in the mood issues arrived and continue to get worst. I now understand the Keppra "RAGE". My heart starts pounding with anger for irrational reasons. The doctor tried putting me on zoloft to level me out.. well that made me worse! I ended up getting serotonin syndrome and almost had to go to the hospital. So where am I know after all these years? I'am currently still recovering from serotonin syndrome but the Keppra "RAGE" symptoms are still here and the doctors don't know what to do for me. I have 2 appointments next week. One with a pychiatrist and one with the sleep DR. I'am truly tired of the narcolepsy being ignored and the neurologist trying to treat both at the same time. The epilepsy medications only make the symptoms of narcolepsy worse. Especially depakote. I feel like I have a big decision to make.. treat the narcolepsy or treat the epilepsy? That is the question. Treating just the epilepsy has got me nowhere so far. I feel that if I treat the narcolepsy and get quality sleep the seizures should go away. We'll see...
So I basically have been dealing with narcolepsy symptoms from 17-18 years on. I am currently 29. The most noticable symptoms started around 25 years old. The last 5 years have been hell going on and off medications and just dealing with having both disorders which makes treatment so complicated. My quality of life is very poor and has been that way for too long. I feel that I may have to make a more radical decision soon with my health because the Doctors haven't been that helpful.
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away" - Rev 21:4
Hello I have both narcolepsy and epilepsy. Just to give a brief backround. I was diagnosed with JME or generalized epilepsy around 12/13 years old and have had off and on seizures ever since. Most of my seizures or grandmal(myoclonic). I haven't had a petite or partial in over a decade. They only happend early in my teens near diagnoses. Since my teens years.. probably near end of puberty 17/18 I noticed that my sleep rythm was off. I started to develop insomnia. I started experimenting with different supplements like Valerian,GABA,Magnesium, Melatonin, Herbal sleep tea's, 5-htp, and many others. For years they helped with insomnia till I got into my mid 20's and a lot of things did not work like they used too. Around 26 years of age my narcolepsy symptoms really became manifested. I was just exhausting all the time and noticed I would completely crash in the afternoons every day at work. I started out going to my PCP for tests and nothing would ever come back abnormal. I saw a pychiatrist and she thought it was just depression and wanted me on zoloft but I ignored that and kept increasing my supplement doses to mask these issues before the issues became so bad I had to quit work. I eventually got on state medicaid and this is what really helped me get to the right doctors. I casually went to a sleep Dr. just for my insomnia because I never saw one. Had 2 sleep studies and both confirmed I had narcolepsy without catoplexy. I was 28 at this time. I fall into REM sleep within a few minutes and stay in that stage the majority of the night. Always wake up tired no matter what. This explained a lot. All while I was experiencing these problems my seizures came back. I was actually 3 years seizure free without medications from 23-26 years old. Because I was not sleeping much and so poorly I started to get seizures from the sleep deprivation. Since they have started at 26 again I've had problems getting them under control and all while dealing with the side effects of the AE medications. I started out with zonegran, controlled them well but I also slept well So I believe this was the major reason it worked. I started to develop severe depression and suicidal thoughts though so I had to get off that. I switched to lamictal. Lamictal was very stimulating for me and gave me anxiety and severe insomnia. I could not sleep without trazodone or lorazapam. Because of the lack of sleep I had the most seizures in my life while on lamictal for almost a year. I think it was actually pro-seizure for me even though the Dr. was denying the evidence. Soo then I switched to depakote because the lamictal wasn't controlling the seizures. Depakote worked but again like zonegran it helped me sleep but eventually it's sleep effects faded away and seizures returned after a year. It seemed to also intensify the sympoms of my narcolepsy. Severely vivid dreams and excessively tired constantly. It also led to depression and a lot of weight gain. Because of all that NOW I'am on KEPPRA. I was initially feeling better getting off the depakote but once the KEPPRA finally kicked in the mood issues arrived and continue to get worst. I now understand the Keppra "RAGE". My heart starts pounding with anger for irrational reasons. The doctor tried putting me on zoloft to level me out.. well that made me worse! I ended up getting serotonin syndrome and almost had to go to the hospital. So where am I know after all these years? I'am currently still recovering from serotonin syndrome but the Keppra "RAGE" symptoms are still here and the doctors don't know what to do for me. I have 2 appointments next week. One with a pychiatrist and one with the sleep DR. I'am truly tired of the narcolepsy being ignored and the neurologist trying to treat both at the same time. The epilepsy medications only make the symptoms of narcolepsy worse. Especially depakote. I feel like I have a big decision to make.. treat the narcolepsy or treat the epilepsy? That is the question. Treating just the epilepsy has got me nowhere so far. I feel that if I treat the narcolepsy and get quality sleep the seizures should go away. We'll see...
So I basically have been dealing with narcolepsy symptoms from 17-18 years on. I am currently 29. The most noticable symptoms started around 25 years old. The last 5 years have been hell going on and off medications and just dealing with having both disorders which makes treatment so complicated. My quality of life is very poor and has been that way for too long. I feel that I may have to make a more radical decision soon with my health because the Doctors haven't been that helpful.
"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away" - Rev 21:4
Re: Narcolepsy & epilepsy
Submitted by woodye85741 on Sat, 2011-09-17 - 20:15
Gee, I never get to see a full length movie. Cant go for car rides of much length. Always nodding off despite full nights rest. Let me rephrase that, My body wants to flush out the meds I take so I DO get up frequently at night. ADD/ADHD fill all my waking moments. Such a life.