New & Questions about Nocturnal Epilepsy

[kabibbles]

Hello everyone, my name is Amy, I am 38 years old. I hope someone can help me with what is going on with me, because it is literally driving me crazy.

This has been happening for the past 7 years, and came out of nowhere. Just as I am starting to drift off into a deep sleep it feels as if I am just starting to get into a dream or sometimes I get the sensation of falling. It feels like my heart has stopped beating and I get the sensation of air hunger and I am startled awake and I am in a very confused state. My whole body jerks - legs, arms, head, I often sit up, heart pounding trying to catch my breath - this feeling only lasts for a few moments and I lay back down only to have it happen over and over throughout the night - this can go on for hours - in clusters every 2 to 5 minutes apart. I have occasionally bitten my tongue or cheek, I sometimes grasp my pillow when a very strong one comes on. I am fully aware of when this happens. Once I am asleep I am out for the night, they do not reoccur even if I get up to go to the bathroom, I am able to go right back to sleep with no jerks.

My doctor said these are hypnic jerks and had me on .5 mg (1 tablet) of Clonazepam - this was working pretty well for awhile. I was getting slight "baby" jerks down to 1 or 2 a night. The effects of the Clonazepam seem to have stopped working and the jerks came back stronger and more frequently. I went back to the neurologist he upped the Clonazepam 1 1/2 tablets, and he had me do a sleep deprived EEG, thinking it might be a rare form of nocturnal epilepsy. I am waiting on the results of it, but I am fearing it is only going to be another test that shows nothing. The extra meds got me back to the baby jerks, but I noticed during one my head turned back and forth and one only my hand was fluttering.

Does this sound remotely like nocturnal epilepsy, has anyone else experienced the same thing? I should mention I am not stressed and to my knowledge have never had an anxiety attack.

Thank you for any feedback.

Amy

[Bernard]

Hi Amy, welcome to the forum.

The head turning and hand shaking would be consistent with a complex partial seizure, but those should involve impaired consciousness (ie. you wouldn't be aware of what was happening).

When my wife last had a QEEG done, there was a significant difference in brain activity with the eyes open and eyes closed. Have you had an EEG done when you were trying to fall asleep (to measure what's happening when the problem occurs)?

[kabibbles]

Hi Bernard

When my head was turning like that I was starting to come to, so I don't know how long I was doing that.

I only had the sleep deprived eeg done last week. They gave me 15 minutes to fall asleep - didn't happen. I am hoping my doctor will do a 24 hour sleep study, where they hook me up and let me go home to sleep. I have a feeling being in strange surroundings is making it harder for me to sleep.

Years ago I had a sleep study done, and I could not fall asleep, so as far as what I experience it didn't happen that night. My primary said it was anxiety, told me to see a shrink and sent me on my merry way.

So after years of torment I finally found a neurologist/sleep specialist and he actually listened to me and didn't blow me off as a head case. I would be thrilled if the SDeeg showed something abnormal, then at least my neurologist would know which drugs to treat it with.

Amy

[Wally]

You may want to consider having a sleep study done to test for sleep apnea.

[skillefer]

Hi Amy! Welcome to CWE. As you can see, a wonderful place to ask questions. I hope your doctor can find a test that will help diagnose what you have. In the meantime, you might want to start keeping a journal.....list everything you eat and drink, and how much....as well as how much sleep you get every night, and any stress you might have. See if there's a pattern that emerges.

[Georgiagirl88]

Hi Amy,

Well..you sound extremely similar to my situation and seizures. I am 41 yrs. old. After at least 5 to 7 years for the worst of it..12 for more minor spells..I was finally diagnosed with complex partial seizures /left temporal lobe. I wake up feeling almost exactly like that. Please read my original post and I think I pretty much describe exactly how I feel. I am awakened..and even though I feel out of it..I actually know what is going on.
I went to multiple specialists. Neurologists and Epileptologists.Also, I will say I had multiple sleep studies and eegs/mri's and the seizures did not show up until later. It can be tricky getting a diagnosis sometimes. Please feel free to write me or private message me at any time. Best of luck!

Michelle : )

[Belinda5000]

Amy,I'm had seizure's 46 yrs and nocturnal just as long.
a nocturnal seizure is just a seizure that you have in your sleep.
If you had it in your sleep it was a nocturnal seizure.
that sounds like one but you need to talk to your neurologist.

I just happened to have a nocturnal seizure early this morning about 1-1:30am
I just call them my screaming seizures all they do is wake me up out of my sleep.

Belinda

[RanMan]

Kabibbles,

It could be the way you sleep and something is causing a blockage in your airway.

If your brain isn't getting enough oxygen due to mild Sleep Apnea, and you find yourself waking up in a "postictal" state (out of it, confused, angry or over agressive or still feeling tired and not rested) you should get your Doctor to refer you to a sleep specialist. They will do an EEG while you sleep.

You may find out that you have seizures during your sleep as a result of you stopping breathing and possibly reduce your medication.

This could cure other health problems as well.

Maybe it's worth checking into.

I have recently been dx'd with Chronic Obstructive Sleep Apnia.
After my sleep disorders test the Dr. showed me the EEG from one night, I would stop breathing up to 50 times/hour and had 3 seizures and that I was waking up "post ictal" (moody and spaced out)
I have recently purchased a CPAP machine which provides constant air pressure and have noticed a vast improvement.
No more snoring (the whole family sleeps better now), more energy when I wake up, better REM sleep, improved memory (less short term memory loss), and most of all ~ NO MORE NIGHT SEIZURES.

Randy
__________________
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day

[JLynn]

Just wanted to share that I can relate to you in the sense that I get these "jerks" that you describe while I am wide awake, as well as when drifting off to sleep. Especially if someone makes a sound, I about jolt out of my bed it is so strong. My doc recently increased my medication, and it is helping quite a bit so far. Best wishes to you too!
Jlynn

[kabibbles]

Thank you everyone for your input. I was tested for sleep apnea years back, but I think I was so anxious to go to sleep and have it happen that it didn't. I am hoping my neurologist will let me do another sleep study from home. When I sleep I have to have 1 pillow, any more and the air hunger feeling is worse.

I don't know if my neurologist thinks these are just normal twitches as I go to sleep, these are full body jerks or jumps. I know what normal twitching feels like and that does not bother me.

I still have not heard back from the doctor, I don't know if that is a good sign or not. I know he is only in the office I go to on Thurs and Fri, so I am hoping he calls by tomorrow with good or bad news....

Amy

[alivenwell]

I know that sleep apnea can be treated with an oxygen mask when you sleep. If you get one of those masks, please make sure there is a surge protector attached to it.
Surge protectors are usually used for computers to prevent high electrical voltages or to make sure they remain on if there is an electrical blackout.

[Meetz1064]

of the same issues, and for me, they are a combination of myoclonic and tonic clonic seizures.

The myoclonic are the "jerks" ... the "falling" feeling that goes along with it. And they can happen at any time of day, but often in sleep. I've even been known to pitch a book across the room with them. And I was on Klonopin (Clonazepam) for them, too.

The tonic clonics, which I have under control, are USUALLY in my deep sleep. Occasionally they happen as I'm drifting off, or waking up. There have been a few blips (like when I've fallen asleep in the shower), but only a few.

I've had sleep apnea....110 pounds ago. It's gone now. And, I think it contributed some, to the myoclonics, because they were much worse then as opposed to now. I do still have them, but not nearly as often.

Good luck!

Meetz

[kabibbles]

My doctor doesn't think it is sleep apnea because of my age and weight - apparently I don't fit the category .

I have had one episode where I woke up out of a sound sleep with the jump. The majority happen as I am going to sleep.

Amy

[Mike]

Ive had complex partials for 30 years for the best part of 20 years they have been nocturnal. In the earily days when they would happen during the daytime I would always have an aura first meaning the focus is in or very close to the temporal lobe. as a matter of fact, before the seizures went full blown, I would have only auras for nearly 2 years only after I had been drinking alcohol the night before. My point is that even while seizing I would still have memories of the experince. Loss of conscious doesnt always mean that dont remember. Thats somthing only someone with years of experincing seizures could possibly tell you. Maybe my life has purpose after all. That would be one of those blessings that I could turn into somthing good for someone else. By just sharing my experinces, I could help someone not suffer.

[tedwins]

Don't rule out sleep apnea. I had what my wife thought were seizures in the middle of the night. We went to the doctor and he suggested a sleep doctor, who then had me do a sleep study. Just because you may not be overweight does not mean you don't have apnea. I am close to my ideal weight, but I have a small airway that obstructs so I need a cpap machine.

A year later after using the cpap machine and getting much better sleep, I now have had complex partial seizures not in my sleep. Sleep studies are expensive, but having sleep apnea can create a lot of problems for your health if you don't get it taken care of.

I still don't know if the sleep apnea is specifically the cause though, since I've also had a head injury where I was knocked out for quite a while when I was little.

[RobinN]

I would also highly suggest that you look into Neurofeedback. Maybe it is just the way your brain functions as it is drifting off to sleep. Perhaps if it learned a new method to do this you would bypass the difficulty that you have been having. Neurofeedback has been extremely helpful for my daughters control.

Would be worth a try before getting on the Pharmaceutical Roller Coaster ride.

[Mike]

Nerofeedback is the way to go, Im here to tell everyone thats concerned about medication that its the biggest scam going. Investigate it to see how many times it works for people. Medications are not natural substances and are expelled from our natural bodies and most of the time cause more problems than you had before you start taking them. Read everything about your problems and you will find out that you have more contorol over them than you realize.