Having Seizures In my Sleep

[Solicitous]

Hi all.

I am certainly in a frustrating jam. I have not had a good night sleep or daytime nap for a long time. I don't mind having S at night cause I can sleep things off.

But every time I go for a nap in the day time, I wake up with my pillow soaking wet, and I wake up in such a panic having a terrible aura, and today I went kind of biserk...a little psychotic.

My problem is that I am trying to get detoxed from benzopine meds which I found out that being on so many benzo's can cause you not to have a proper sleep and to bring on seizures in sleep.

I can not go on any anti S meds except for ativan until I get off of the benzo's.

This is something that needs to be addressed immediately, but I have to wait at least 3 months to get in to detox.

I was thinking about asking my doctor about going on Carbamazepine, since it is suppose to help my sleep situation, but I am terrified of the nasty side affects. (A skin rash that can be fatal)

In the old days they would have put me right in to the hospital, but now with the way our health system ...if you still have a pulse...get in line.

At the end of my rope.

:bigmouth:

Thanks

Norm Beam

 

[Nakamova]

Have you considered melatonin? It's an over the counter sleep aid. People use it to counteract jet lag, and it's helped others here at CWE to sleep as well.

Also, is there any way you can forgo the afternoon nap?

 

[Solicitous]

Thanks.

I will try melatonin.

I need my afternoon nap do to other medical condition M.D.

I was wondering if my wife woke me up in an hour of my nap, if it would stop the vicious aura before it happened.
Willing to tru anything at this point.

Thanks again
Al the best
Norm Beam

 

[epileric]

I was thinking about asking my doctor about going on Carbamazepine, since it is suppose to help my sleep situation, but I am terrified of the nasty side affects. (A skin rash that can be fatal)

Remember that the possible side-effects listed are just that "Possible side-effects. I've been on Carbamazapine for decades with minimal problems.

From what I know the rash from Carbamazapine is very rare & I never knew it could be fatal. All meds have side-effects & nobody really knows how they will be effected until they try the medication.

After describing what you're going through, it sounds to me like the risk (which I see as small) might be worth it. Personally I see being restricted from taking AED's as being much more dangerous, especially if you're made to stop taking them cold turkey.

 

[Meetz1064]

Hi there

Norm. I hate to be nosy, but are you on the benzos for seizures in the first place? I know I use a benzo to control my myoclonics. I also use Carbamazepine (Carbatrol) to control my tonic clonics (t/c's). And I use melatonin as a sleep aid--it is a naturally occuring hormone that our bodies make. However, my body does NOT make it due to a cyst in the gland that makes it. So, I take the melatonin instead to sleep--and I do sleep.

Are you using other things to help you relax? Listening to relaxing music? Stress-releasing activities before you go to bed or nap? For some people napping just makes things worse..... And you may want to keep an E journal....

BTW, welcome to CWE. I'm sure you're going to like it here. Lots of people to meet, things to learn, and a great dinner party atmosphere. Mr B, our host, has built us an AWESOME home here....

Take care.

Meetz
:rock:

 

[Endless]

Hi, Norm,

Problems sleeping is tough. I have seizures in my sleep, too, and just HATE it when I wake up to them. It's extremely unsettling.

You've got lots of meds running around in your bloodstream, which doesn't help the situation. Natural remedies and behavioral stuff seems pretty pale in comparison, but it helps some.

There are tons of sites on the internet that have info on sleep hygeine. Here's one: http://www.treatyourpain.com/resources_files/SLEEP HANDOUT.pdf

The strangest thing helped me: a full-spectrum light alarm clock. It wakes me up with very bright full spectrum light instead of noise. It has helped reset my sleep clock, so to speak. I feel better all day. The light can also be used during the day as a pick-me-up. Costco had them recently. Don't know if they still do.

Hope things get better for you.

 

[Solicitous]

I went to the health nutristionist store yesterday and bought a bottle of Valerian Root 300mg. After taking one before I went to bed, WOW, I slept the whole night through with out any episodes. It was the best sleep I had in a long time. And I woke up actually feeling refreshed, something that never happens.

Not promoting anytthing, just sharing my experience.

Have a great one.
Norrm Beam

 

[Nakamova]

That's great Norm!

Valerian tea is often recommended as an alternative epilepsy remedy, probably for the sedative qualities you experienced.

 

[Endless]

Norm, this is the BEST news! I am so happy you found something that works.

 

[Endless]

Norm,

I happened on this website today. It's from a clinic that does extensive work in alternative therapies for epilepsy. They evaluate different therapies based on objective scientific data. And when there is a lack of research that shows evidence one way or the other, they say so. They don't just say "don't do it" like a lot of other doctors do.

They have some concerns about valarian for long term use, due to it's affects on GABA receptors. This can increase seizures. I found their drug/herb interaction matrix near the bottom to be interesting also.

http://pcs.hmc.washington.edu/Epilepsy/EpiInfo/CAM.html

To understand what GABA receptors are, I looked in Wikipedia: http://en.wikipedia.org/wiki/GABA_receptor

And to understand how it affects epilepsy, I read this: http://www.scientificblogging.com/news_releases/gaba_receptor_implicated_in_epilepsy

If you are really curious, check this out. It talks about how some epilepsy drugs specifically work, as in augmenting GABA receptors, But it's really heavy reading: http://www.landesbioscience.com/curie/chapter/1202/

I always wondered how our drugs work. Here's a site that explains many of them: http://137.172.248.46/treatmen.htm

 

[Solicitous]

Thank you so much.

I will visit all the sites. Sure sounds interesting.

Take care.
Norm Beam

 

[Endless]

Hey, Norm. Tonight I'm solidly with you. I had a simple partial in the middle of the night tonight. It was the one I hate most, a fear seizure. If you've had them, they feel like your a terrified deer caught in headlights. It's awful. I woke up to an aura. That undescribable feeling that's a cross between forboding, something's horribly wrong, a weird feeling in my stomach and my head, and something else that's just beyond words thrown in. Then the seizure hit and for a minute or so, that's all there was. All-engulfing fear. Ugh.

Now it's about 2 in the morning and I can't sleep. That weird feeling is still in my stomach, my ears are ringing, and I'm afraid to close my eyes. My seizures come in clusters, and I just don't want another one. My mind knows staying awake won't keep them away (probably the opposite), but here I am up and awake anyway and just feeling rotten and still rather scared.

I'd reach for a drink to erase it all away, but that would only make it much worse. I don't care if valarian affects GABA receptors. Hey, Norm. Pass the teacup, please.

 

[Eve]

I suffer from nocturnal seizures. The last 3 nights I have been awakening from them and getting migraines as well. I am on Keppra I used to take Carbatrol but went off of it due to a bad liver blood count. I used to take Macalt for migraines and I just recently had to stop because it was giving me chest pains. N ow I am taking Relpax for migraines and it doesnt work as well as the Maxalt but at least I dont get chest pains with it.

Ummmm.Melatonion, maybe I should try it. Is it safe to take with the seizure drugs and how much of the melatonin do you take?????????:e:

 

[Endless]

Hi, Eve. I don't know about the dosage. Look here for some safety info on different supplements. There are summary tables at the bottom: http://pcs.hmc.washington.edu/Epilepsy/EpiInfo/CAM.html

 

[thijmen]

i know just wat you mean i am finaly *thanks to operation * rid of the big attacks but still got the aura's in my sleep so then when i sleep i sometimes wake up more sleepy the i went in try melatonin it is really good makes you sleep good but fcourse it can not take away the aura's and for the carbamazipine i use it now for a long time and everything is ok you dont just get every side affect that stands on it otherwise i wouldnt be here ^^ so please when your doc tells you to try try it it works good for me

greets thijmen

 

[Eve]

Hi, Eve. I don't know about the dosage. Look here for some safety info on different supplements. There are summary tables at the bottom: http://pcs.hmc.washington.edu/Epilepsy/EpiInfo/CAM.html

thanks for posting that link. Alot of useful info. Maybe I will hold off on trying that Melatonin. Right now I am taking Calcium, Vit D, Magnesium Vit B6 and Mutio Vit B Complex .

I've been getting my vitamins from jigsaw and I have been happy with the quality and service.

 

[Endless]

I think melatonin is somewhat undefined, according to that site. It only cites anecdotal evidence of some increase of seizures. Anecdotal evidence is pretty worthless, IMHO - it isn't reliable and doesn't show how many people, under what circmstances, etc. Anecdotal evidence can be very slanted. But if even some reports of increased seizures makes you nervous, then stay away.

My neuro suggested melatonin. I've tried it in the past and it didn't make a difference for me, but it has for some people.

 

[Eve]

Maybe I will ask my neurologist about the melatonin. But it seems like most of the time when I ask him about supplements he gives me this "don't ask me " look.:crazy2:

The last time I told him about a problem sleeping he suggested Lunesta and now my insurance wont pay for it.

 

[RobinN]

Dr Blaylock's recommendations
neurosurgeon, researcher

Q: Are there supplements for a 19-year-old who
has nighttime sleeping seizures?
— Linda C., Lynchburg, Va.
A: Since seizures often occur during sleep, they are
frequently not diagnosed. There are many newer
observations concerning seizures that can offer new
ways to control them. One of the links most often
overlooked by physicians and even neurologists is
hypoglycemia. We know that, in healthy people,
dropping the blood sugar rapidly can precipitate a
seizure, and those prone to seizures are much more
sensitive to hypoglycemia.
Studies have shown that a buildup of the
excitotoxin glutamate in the brain triggers the
majority of seizures, and most of the newer
antiseizure medications block glutamate receptors in
the brain. When blood sugar falls, brain glutamate
levels rise. So, avoid sugar and high glycemic foods,
especially around bedtime. Potato chips are a major
culprit, especially those with excitotoxin additives,
like MSG. Magnesium plays a major role in
regulating glutamate receptors and has been shown
to reduce seizure risk. Take the magnesium three
times a day. The last dose should be made by mixing
500 milligrams of magnesium citrate/malate with 4
ounces of water. This allows rapid absorption and
promotes good blood levels.
Another anti-seizure supplement is L-carnosine, a
natural compound that suppresses seizures triggered
by excitotoxins. It also protects the brain. The dose
is 500 milligrams three times a day, to be taken 30
minutes before each meal.
DHA, which promotes brain development and
repair, has been shown to reduce seizures as well.
The dose is 1,000 milligrams a day. Omega-6 oils
increase the incidence of seizures, so they should be
avoided as much as possible. It has also been shown
that all antioxidants reduce seizures, especially if
used in combination. Vitamin B-6 (as pyridoxal
5-phosphate) reduces brain glutamate levels and can
reduce seizure risk. The dose is 25 milligrams to 30
milligrams a day. Melatonin (time-released form) is
another nutrient that helps: Take 3 milligrams to 9
milligrams 30 minutes before bedtime

 

[Endless]

Hey, I take it back about the full spectrum light. I noticed this morning that it made my ears ring, like the computer & TV do. I'm beginning to suspect I'm photosensitive.

I don't know why that light would make me react. It's an LED light, not florescent (how do you spell that?! Bernard, my fuzzy head needs a spellcheck function)

Can all light types elicit a photosensitve response in people?