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Bladehamster

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Hi, I have epilepsy and have been taking carbamazepine for several years now.

The worst thing that happens to me is that the seizures often occurs when
i am asleep, making me sick in the morning and unable to report to work.

This is now very serious and it makes me have a phobia of sleeping.

Anyone have any tips on how to sleep without really sleeping?

:-(
 
Hi Bladehamster, welcome to CWE!

First off, if you are still having seizures, perhaps you need to have your medication adjusted. Have you talked to your doc about this?

Second, do you want advice on how to sleep or how to stay awake? I wasn't sure. If you are having a hard time falling asleep, here are some tips: If you exercise, do so about 5-6 hours before you want to go to sleep. Avoid eating close to bedtime, unless it's a very small snack. Avoid evening caffeine. When you get in to bed, try progressive relaxation -- this involves slowly tensing and relaxing your entire body starting at your feet and working your way up to your head and neck. In addition you could try listening to relaxing CDs -- there's a particular sleep set (I've forgotten the name right now) that's pretty effective. You could also try taking melatonin, an over-the-counter sleep aid. It's used by folks to get over jet lag, and by some people here at CWE as well, and it's considered very safe.

As far as the seizures go, can you tell what is triggering them? Sometimes it's possible to pinpoint particular stressors -- fatigue, certain foods or activities, dehydration, etc. -- and then learn to avoid them. Keeping a seizure journal can help with this.

Hope this helps, and that you feel free to explore this forum. There are places to ask questions, as well as vent and chat.

Best,
Nakamova
 
Thanks for the welcome :)

No i haven't talk to him about this but always i get medication adjustment and i am tired of it. I am going to try sleeping on a recliner to see if it helps.

Have a nice day :-)
 
Hi, Bladehamster.

Welcome. I'm glad you found this forum. It's full of wonderful people with lots of knowledge.

I know how you feel. I have fear seizures (simple partials) at night that make we wake up terrified. I felt like I am dying. If I wake up and it isn't a seizure I am still afraid - the seizures have conditioned me to expect the mind-numbing fear. It makes me afraid to sleep. I've had some nights now that are seizure free, but if I wake up at night I'm afraid to go back to sleep.

There is no substitute for sleep. You've gotta do it. It's how our brains and bodies replenish themselves. If you skip sleep it could trigger even more seizures.

If your seizures aren't under control it's so important to call your doctor. Your meds probably need adjusting. You can try melatonin or taurine to sleep, but it won't fix the root cause of the problem - the seizures. They will still wake you up.

Will you let us know if you call your doc, and what the results are? I'm so hoping things get better for you soon.
 
I too have nocturnal seizures and I know what you mean about the fear of sleeping. However, it's also important to recognize that for E patients sleep is crucial. A couple things I have found helpful: Magnesium (the container I get is called CALM) and this helps with seizure control (magnesium) as well as falling asleep. I take it before bed. I also use the Delta Sleep System which I know helps me sleep and I truly believe helps the seizures as well since it's designed to help you get through the stages of sleep (REM) smoothly and for me I tend to seize getting in and out of this stage. The Gluten Free diet also works to control my seizures. You should also talk to your neurologist about your meds. Good luck and I hope tihs helps.
 
Just now reading your post from last year and wondering if you are still using CALM and the Delta Sleep System. Are they still helping you? And were you able to stick with the gluten-free diet?
 
I don't have seizures in my sleep but I do know that if I am stressed about something I am more prone to have a seizure. It could be that you are afraid to fall asleep and that could be what might me causing them.

I know that I have trouble falling asleep at times. I've started reading when I get in bed to go to sleep. This usually knocks me out but it may take an hour. Maybe try finding something that will relax you and will help you to fall asleep?
 
Welcome Blademaster

I've been on carbamazapine for decades now. I've found that often in the morning I see floating spots as a side-effect. Something I've noticed is that it's usually when I don't eat immediately that I get side-effects

It is stressful for your stomach so have something to eat before you take it or take it with milk. Hopefully that'll help your side-effects.
 
I really can't remember but isn't tegretol one of those sodium channel blockers? If so, you have to make sure you get enough salt too. I'm pretty sure you are also suppose to avoid grapefruit while you are taking it according to my neuro.
 
Sleeping Meds and an OES

Seizures at night were never a big problem for me; but lack of sleep was a trigger. I never had a problem falling asleep, the problem was I would wake up after an hour or two and stay awake. I now take one Temazepam (15 mg) 1/2 hour before I go to bed. I also avoid eating after dinner. Works pretty good. Plus, my Old English Sheepdog comes up and lies across my chest when I first get into bed, a very calming effect.
 
fear

Endless can you tell me about the fear seizures? Because there are 2 things that always will happen during my spells -Fear soo intense -No other part of the brain can even function and tears when it ends I am confused and crying.
There is no specific fear i have recollection of.
 
Hi, Sandy.

Oh, man. If you are having fear seizures, I'm so sorry. They suck big time. I hate them the most of any of my seizures. Even more than the complex partials where I lose conciousness and do wacky or dangerous things.

The fear seizures feel like all-consuming, huge fear. I feel like a dear in headlights. It's not that I can't move or speak. It's more like it doesn't even occur to me to do so, even if someone is talking to me. All there is is the seizure - it's so big, that's all there is. Someone else in here likened it to the terror you would feel half way down jumping off a building.

I'm not afraid of anything in particular. It's just a huge emotion. No increase in heart rate, sweating, shaking, or anything else. Just intense emotion. It lasts between 30 seconds and 2 or 3 minutes. And the feeling is unmistakable. Very different from being just afraid or sad on some days.

Though, I have to be careful because after the seizure I tend to become afraid of whatever I was thinking of before or after the seizure. Guilt by association. Even if it is something stupid like asphalt or a neighbor. I have to use my logical brain to think myself out of that.

Hope that helps. And here's hoping your seizures are under control soon so you won't have to go through that any more.
 
fear

That's it in a nutshell, at least some of them -I had never heard of them before
referred to as fear seizures. the doc said I didn't have temporal lobe seizures as they show up on eeg That is why the doc kept saying to me it was a panic attack- But I was sitting in his office there was no change in BP, temp
anything -I walked in fine a little shaky but hey I'm sometimes like that all day
blankness,then fear so extreme it smashes you (but it's un named) your not afraid of some-thing specific,then the tears, sometimes a jerk or two nothing.big or a shudder (strong)
I don't have much vision and I do hear but have problems speaking But it's seconds so, Unless your looking you might miss it- then wiped of course you feel
down -cause you've just used every glucose molecule in your brain.And it's so scary.You think it's like Death or something.
Daytime or night they have occurred.
 
Sandi,

Fear seizures very likely wouldn't show up on an EEG. They come from the Amigdala, which is very deep in the brain. Traditional electrodes often don't pick those up. The Amigdala is too deep.

If the seizure spreads to other parts of the brain it's more likely to show up.
 
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