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nocturnal11

Nocturnal seizures

Hi I am new to this site.  Would love to hear from anyone who suffers from nocturnal seizures or is on Tegretol.   I was diagnosed at 19 ten years ago.  I have never had a seizure awake. 

I am on 200mg of Tegretol which controls my seizures.  I have tried to go off medication over the years but my body is so used to the medication I have seizures when I try :( 

I would also love to hear from people who have successfully come off their meds.

 

Comments

Re: Nocturnal seizures

Hey Nocturn,

  I'm new to the site as well and have been having nocturnal grand-mal seizures for the past 5 years.  Although I've gone over three years without a single incident and I've never had one while awake, I was just recently put on medication because of a recent bout of seizures.

  I wish I had some information regarding sucessfully coming off medication but I don't have any experience yet.  However, I would appreciate your advice: Should I "blindly" take the medication prescribed to me if I don't think it's necessary?  My seizures seem to be linked to sleep deprivation and as such I think I can easily prevent them without medication.  However, I just started taking my prescription and have noticed a number of side effects (with no evidence the medication is helping prevent future seizures).

  I was about to add a bit more to this message but figured it may be wise to keep my mouth shut as I don't know who might be reading these forums!

Anyways, best of luck and thanks for any advice!

Re: Nocturnal seizures

Hey nocturn and jm2004,

I have nocturnal TCs as part of my JME. Not successful with the seizure control either although my waking ones have been great! I talked to my doc about going off meds one day and he hesitated then said we'll talk about it when "the day comes". Whatever that means!

Re: Nocturnal seizures

JME?  sorry I have no idea what that is?  Great to hear you waking ones have been great!  "when the days comes'  I cant wait!!!!!!!!!!!!!!!!!!!!!!!

Re: Nocturnal seizures

Oops sorry! Juvenile Myoclonic Epilepsy. Most of my night ones happen towards early morning. I almost always realise them at 5.30 am. Weird eh?

Re: Nocturnal seizures

All mine have been  right before I wake too I would guess around 5am.  I usually wake up and go to toilet feel like i have been hit by a bus I have usually bit my tongue and cheek so i can feel the roughness of my tongue.  I am usually sooo tired I have to go back to sleep for another hour or so.

Re: Nocturnal seizures

Hey Snow,

   So you're stuck with nocturnal seizures but your day-time ones are gone?  What are your thoughts on medication?  If you thought you could control your seizures through other means, would you take medication?

  I really don't know what's going on with mine.  I wake up exhausted and in a fog, with puddles of bloody saliva on my pillow/sheets/blanket and blood splatters everywhere.  It's always in the morning, before my alarm clock goes off, that I "wake up."  I think in total I've had to get over 20 stitches in my tongue, though that's only been two incidents.  The other times were like tongue abrasions or "puncture wounds" (and didn't need to be sewn up).  The puncture ones were actually the most painful.

  A word of advice: If you ever have a puncture-type wound situation: MAKE THE DOCTOR SEW IT UP!  Eating ANYTHING was excruciatingly painful - I had shooting pains going up my jaw, my teeth felt like they were getting pulled out, and (of course) my tongue felt like it was being stabbed.

 

Re: Nocturnal seizures

jm2004,

Heck, if I could control my seizures without meds, I would! I have other health issues though, so I have to be careful with trying herbal remedies and such. There is a very delicate balance to be maintained in there! Yeah I have definitely bitten myself although not as bad as puncturing and needing stitches.

I hate wetting myself from the seizures. I wake not knowing how to clean up and just sit in my wet clothes. That sucks. And then for nights after that, if I wake up in the night, I would have a startle and immediately check to see if I'm dry. The hyperaroused state for the next couple weeks is just so emotionally draining.

Re: Nocturnal seizures

I would love to control my seizures without meds Im just starting to look into other ways.  But who knows.

 I have never wet myself during my night seizures but i know its very common.  My main thing is my poor tongue cops it!  I have never seen blood or needed  stiches but I sure give it a good chomp!  Luckily tongues heal fast!

 

Re: Nocturnal seizures

I know how you feel I have Nocturnal Epilepsy ive had it all my life none of the meds have worked have allways made me supa sick and I bite my Tongue two used to have ulcers blood over my pillow some times but my dentist helped me out and made me a mouth gard :) and its the best thing that has ever happend to me!!

Re: Nocturnal seizures

Thanks for replying!  My seizures I think are definately related to insomnia that I had for many years. 

Were you on meds before?  Or only now after the recent seizures?

The medication I take definately prevents my seizures, so I think Im stuck with them. 

 

Re: Nocturnal seizures

No prob, I'm just really surprised/impressed to find a website like this.  It's cool to actually find some people to talk to that are in a similar situation. 

I don't have insomnia but I am a night-owl and sometimes have work or school early in the morning.  During the past 6 months or so I sometimes got only ~3-4 hours of sleep and have had 3 seizures in less than 3 months.

I've never been on meds before but now that I am, I've realized that I don't like the way they make me feel.  Also, they seem to sap my energy.  In my entire life prior to this, I've taken maybe 5 naps total.  Since I've started taking this medication, I've HAD to take a nap almost every day! It doesn't matter the amount of sleep, coffee, or exercise that I got.

It's good to hear that your med's prevent your seizures but kinda crappy that you HAVE to take them to prevent future ones.

 

Re: Nocturnal seizures

Im with ya on the Medication thing. Was having 2 bouts of nocturnal seizures a year and the Dr. comes up with dilantin just to avoid 2 seizures did not see the logic but took it anyways until side effects got to bad. One thing that you may not know that may make you like your Dr a little better is that Medication is the only treatment they have for seizures, and if they dont offer or give it to you they can be charged with malpractice. I really hate the stigma and the thinking that the meds will fix it all. Ive had all the tests spent all the money tried 10 different medications until the side effects got so bad i couldnt. And up until recently could not see the logic in taking all those miligrams of medication when they cant diagnose me, dont know if its going to work, and dont know why med works. only was having 2 bouts of grand-malseizures a year. And could not get others to see logic. Especially people who see you have it. will not listen to reason or logic. So ya I hear ya with the medication thing. seems like I have all the side effects. I can accept how I feel after seizure but cannot make myself feel like death to avoid 2 seizures. But like life things change and my life has been turned upside down. while working Night shift for 3 yrs and fearing falling asleep but accidentally falling asleep on lunch break and having a seizure. This event has totally changed my life. Just so people know if you havent had seizure at work and you are aware of them you do not have to tell your employer anything. But me having one at work employer was able to ask for all medical records and Dr.s notes. Drs had been worrying about me working there because of the violent clients but still have never had a wakeful seizure so i was ok. Sorry for long message but also for all you nocturnal seizure sufferers never ever let a Dr. write wakeful seizure in your chart which the ER DR did ellude to. And by doing this has made my life so much harder lost license even though ive been driving for 13 yrs with no problems. 30 years with no wakeful seizures and all it takes to change my life is for an ER Doctor from India who barely speaks english to write found fallen on floor after seizure. Which was not true was laying on couch. So at moment no Job no License and no CNA. If anybody has any advice on quickest way to get license and any new treatments i would appreciate it sorry for long response. Last thought if your having very few nighttime seizures and taking meds that dont seem to help but hurt. My opinion is to not take them because there just killing your organs. Also one last note saw on blog that lady was giving 3 mg of melatonin a night and 400mgs of lechithin 4 times a week. To help with better sleep because epileptics suffer from sleep deprivation as is. She reported that 3x a week nocturnal seizures have not accured for 6 weeks. Worth a try I think. First time on one of these sights lots to say. First witnessed seizure 6 yrs ago up until then didnt know what was going on. hard to make people understand and there getting worse which seems to effect my balance memory and emotions. Anybody else wake up from seizure and not feel like youve come back all the way?

Re: Nocturnal seizures

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Re: Nocturnal seizures

Mother of an epiletic child

Hello, My daughter was diagnosed with epilepsy this past week.  She has has 2 gran maul (not sure how to spell that) seizures in the past year and were very serious. We had to put her in the PICU.  This last one they could not get to stop.  It took a lot of medication. 

I saw there are differenty types of seizures I never knew this.  My daughters have happened about 30 min after she fell asleep.  Would this be considered Nocturnal Seizures? 

 I know she has small ones during the day now. She will roll her eyes and smack her lips and stare into space for a few seconds.  I never knew these were actually seizures.

I am very scared as we are new to all of this and working to try and help her.  She is on medicine and it saddens me because its not her.  THe medication makes her different.  I know she needs it but its so hard looking at your daughter and not knowing who she is anymore.

 

Re: Nocturnal seizures

Thanks for sharing  that, how old is she?  I hope you find medication that helps control the seizures with the smallest amount of side effects.  I know different meds are different for everyone.  I was lucky the tegretol they put me on at first helped my seizures and no side effects but I have read so much on this site and the meds can carry alot of side effects unfortunately. It sounds like she could be having nocturnal seizures as well as day time.  My nocturnal seizures are always as Im waking early morning.  Grand mal where i bite my tongue and shake around!   Good luck with everything I know its heartbreaking seeing your daughter go through this as my mum was and I was 19!  But with the right medication and once its under control it will all be much easier : )

Re: Nocturnal seizures

I was just diagnosed with Nocturnal Seizures, I don't know much and I was too shocked I didn't ask the Neurologist anything.  Now as I am starting to put the pieces together I think it makes sense- I booked another appt to see the Neuro this Thursday.  Wondering if the many years of waking up exhausted after a lot of sleep, migranes, sore jaw from clenching (even with a nightguard), bitten tongue, "hangovers" when I don't drink.  I get these symptoms if I go to bed 1-2 hours later than usual or when really stressed out.  I was just put on Keppra and don't have enough information to share anymore.  Good luck!!

It's not something myself or my husband have ever been aware of.

Re: Nocturnal seizures

Hey Nocturn,

I've been living with my boyfriend for the past two years and his seizures are very similar to yours. They only happen at night. Sometimes when he's just going to sleep, sometimes in the middle of the night, but most commonly when he's just waking up, like you. Sometimes he has to miss work because of it.

He was on Tegretol too for a little while. They had him start off with a small dose and slowly go up to a larger one. At first they seemed to be really helping, but it's hard to tell because we never know when he's going to have them. When he started on the full dose everything went down hill. His personality changed, he got aggressive and even violent. So he went off the meds.

He still has seizures now. I can tell you what one of his doctor's told us, which was you can either deal with the meds or deal with the seizures. There's no way to really "cure" a seizure, if you're on meds and the side effects are too bad, I'd say you're lucky. If you don't want to be on meds and you don't have them often you should try to monitor your episodes. Keep a journal, find out how often you have them and what your triggers are. See if you can cut down the amount of seizures you have.

I hope that helps. Good luck with everything!

Re: Nocturnal seizures

I do not take Tetregol, but I tend to have seizures in my sleep. Right now, they have me on the highest possible dose of Keppra (I now take 1500mg twice a day), and I may have to take something else if that doesn't work. After being 2 yrs seizure-free, they are now starting to act up again, and my neurologist doesn't know why. It sucks, because it causes me to miss a day of work (like someone mentioned on here, I feel like I spent hrs at the gym, haha), and I feel light headed and nauseated the whole day. And my tongue hurts. I feel much better knowing I can relate to a lot of people on here.
I have not been able to be weened off of the meds-my neurologist told me it would be like a 90% chance if I were to try to now-and I would have worse seizures and almost fatal. So, I guess I'm still on this medication for the time being.

Re: Nocturnal seizures

It's such a relief to find this site and to know that I am not alone  in having nocturnal seizures. I am 57 and as far as I can remember I have had nocturnal seizures since my mid 20's. I'm only guessing but they might have been precipitated by a couple of concussions. I don't have any other explanation.  I knew I had a problem and felt like a freak but had no idea how severe it was or how to address the problem. Then 3 years ago I developed sleep apenea and had a couple of sleep studies done. Of course they aren't looking for anything like nocturnal epilepsy in these tests but they do measure the number of body movements per hour. The normal number of body movements per hour is 4, I was at 47 and that was while being on clonapin (an anti-seizure medication). I had to point this out to the nuerologist,who ran the sleep study program, and suggest to him that something was wrong with me besides the sleep apnea. After some aurgument, he advised me that the electrical activity in my brain while I was sleeping was similar to epilepsy in that I never (without the clonipin) go into a deep sleep, although he never termed it or diagnosed it as nocturnal epilepsy, but he stills prescribes the clonapin. Thus, and this is my own conclusion, when I dream my body is reacting to the dream usually in a convulsive manner.  As a follow up to that discussion I had an EEG, which according to the nuerologist was good.

So the clonapin has helped but once that wears off the seizures start and these are nightly. Before I started taking it I would sleep for maybe two hours, fall back asleep, then wake up every hour after that and feel exhausted the next day.  Thankfully I've never had a siezure while awake.  The clonapin also has the effect of leaving me drowzy during the day, feeling like I have to fight to stay awake at times. I've tried cutting the dose but that only results in less sleep at night.

For those of you with the problem of biting your tongue at night, which I have had, there is a company called Dream Sleep which makes a mouth guard for sleep apnea which will also prevent you from biting your tongue.