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GrilledPepper

Night seizures one hour after falling asleep.

There's plenty of stories on here about people having night seizures. I have about 2 seizures per day, simple partial and always conscience.

Half of my seizures occur at night almost exactly one hour after falling asleep. I usually wake up with a strong seizure feeling coming on and then about 3 secs later the fun begins with intense right side shaking, lasts for about 2 mins. Starts in my right hand goes down my whole right side and finishes with my right hand.

Seems that night seizures are pretty common on this site but what happens to the body around the one hour mark from falling asleep? That seems to be a trigger for me.

Read all about it at: http://www.thegrilledpepper.com/2010/03/seizure-activity/

Thanks!

Comments

Re: Night seizures one hour after falling asleep.

Either I read through your story too quickly, or you never did say: what were the video EEG results??

Anyway, yes, I have had night-time seizures. Usually they occur just as I am nice and relaxed and about to fall asleep. Before I was on medication i would also get them just before or just after I've woken up. Medication has helped with the AM ones, but I'm still waiting for the daytime and PM ones to come under control I've been awakened at night with them a few times as well.

I, too, would like to know what happens to the body to trigger seizures at the various stages of sleep. Is there something hormonal that goes on? Something in the neurotransmitters within the brain??

Re: Night seizures one hour after falling asleep.

Unfortunately after 4 days and 8 seizures in the hospital the only thing the Dr said was, "You have very interesting seizures". There was no extra brain activity on the EEG so the video part was all he could look at.

About 2 weeks later (July 16, '10) I went in for a Somatosensory Evoked Potential (SEP) test. My impression was that it was a seldom used test but was kind of the next step in trying to locate a trigger.

Since then the Dr.'s office has never called me back with anything further to try. After several unanswered/unreturned messages I finally was able to get a hold of my nurse and I basically told her that I wanted to start decreasing my meds since they don't seem to be working. She conferred with the Dr then gave me a safe decrease schedule with a warning that they didn't feel that it was a good idea. I was on 5000mg of keppra a day and now I'm on 3500mg. The only difference is that my seizure activity has been decreasing. She then said in a cheery voice that all my test results came back as "normal". When I mentioned that I'm still having 2-3 seizures a day all she said was that the Dr was still analyzing the results. That was a month ago and I still haven't heard anything from them...

I could go on and on about this but suffice it to say that I no longer have faith in what the "normal" way of treating this and the doctors are the first ones to admit that they are just guessing with their medication levels. I've seen several doctors and have asked about the effects of diet, nutrition, and exercise on seizures. When my Neurologist came out and said "look, all I know how to do is prescribe medication" I knew that this was the wrong path for me.

Re: Night seizures one hour after falling asleep.

I started a thread a short while ago called "considering dumping my AEDs", so I, too, have wrestled with this. I started having seizures out of the blue 4 months ago, and I am still in the process of being diagnosed (routine EEG and MRI were normal). My seizures were called "partials" but my present neuro. is confused because some seem more like generalized ones, however I do not lose consciousness.

My own research (many, many hours) suggests the possibility of jacksonian seizures, in which a seizure starts as a partial but can secondarily generalize - when this happens, consciousness can be maintained. I also believe the origin is in the frontal lobe, possibly from one of the deep structures in this part of the brain, since some of the so-called confusing aspects of my seizures - and the normal routine EEG - entirely fall within the category of frontal lobe seizures. I am being referred by my first neuro to another neuro for a second opinion. Both are "just" general neurologists, as the wait to see a seizure specialist here in B.C. Canada is over a year.

I am on no where near the amount of medication you are/were on. How did you even get up in the AM with all that in your system?! I was started on a high (but typical) dose of a common med while in the hospital and I ended up with drug toxicity, so the neuro. has had to take things a little more slowly and cautiously with me (ie. a very "safe" med. and slowly increasing the dose to target levels). This tapering-on process is where I am at now, so seizures are not yet under control, but I am hopeful as I'm already starting to see improvement.

Having said that, I still have questioned the rationale of taking anything, because I do not yet have a firm diagnosis. After reading your story and the amount of meds. you've been on with seizures still not under control, I think you have even more of a right to be questioning taking the meds than I do!

I'm not a doctor, so take this next part as just an opinion. But, you might want to look up dyskinesia. It is a rare type of movement disorder that is often mistaken for epilepsy. Many Drs. do not consider it as a diagnosis right away, because it is not as well-known as epilepsy. What I've read about it suggests to me it might be worth researching, and then if you feel it could "fit" you, ask what your neuro. thinks.

Re: Night seizures one hour after falling asleep.

Interesting that you mention you feel the origin is in the frontal lobe.

This all started for me in October 2009. I had a high fever, went to lie down, and ended up having a grand mal seizure. An MRI showed that I had a tumor on the frontal lobe along the motorstrip. I had brain surgery at the beginning of Nov and 30% of the tumor was removed, the other 70% was too close to the motorstrip so it was decided to radiate the rest.

The day after surgery I had my first conscience seizure while in the MRI tube (not so fun). I had about 7 or 8 more that day. They loaded me up with keppra and dilantin and the seizures went away completely. The tumor was diagnosed as a slow growing Grade II Oligodendroglioma.

I put off radiation until March and in the meantime I was back at work, driving again, and life was turning back to normal. Then on March 4th I went in for another routine MRI before scheduling the radiotherapy treatment. Two hours later I had a massive, 45 min long, full body seizure that I was conscience for the entire time. That kicked off all the seizures I now have that we're trying to get under control. The doctors admitted that I probably had a reaction to the contrast dye.

Anyway, from March to July I experienced sharp increases in seizure activity each month and the doctors just kept piling on the meds. Finally near the end of July I decided to start changing my diet, seeing a nutritionist, and a few other things. The results so far is that August was the first month where I saw a decrease in seizures. The end of August I started reducing my meds and so far September is lower than August.

So I'm not saying I have any real answers just yet but for me it appears that the medications I've tried aren't helping anymore.

The Jacksonian seizures you mentioned sound more like what I have than Dyskinesia. I'll keep researching that.

In the meantime I still need to figure out what is happening to my body and/or brain 1 hour after falling asleep. I had 2 seizures last night. First one woke me up after falling asleep and 2nd came on 1 hour after that. It's almost to the minute each time.

Re: Night seizures one hour after falling asleep.

Sorry to hear you had 2 seizures last night; I did, too :( Well, one for sure. I was at that about-to-fall-asleep stage, and had a "moderate"seizure that did generalize. I think I had one in my sleep, because I woke up with a headache, very weak arms an legs, and a sore jaw. I used to wake up like this fairly frequently before I was even diagnosed with seizures - it wasn't until seizures occurred while I was awake that I was diagnosed with a "seizure disorder" . I have what are definitely night-time seizures once a week, because they will wake me up. Other times I suspect I do not wake up but I will still have the weakness and headache (and sometimes a sore jaw) even after 8 hours of sleep.

You mention diet changes: it might be worth finding out if you have celiac disease (basically, a severe form of gluten-intolerance), because it can be related to seizures as well. I was diagnosed with celiac disease 3 months prior to the seizures starting. I started a gluten-free diet right away. The seizures started well after this diet change, but stil I believe there is a connection somewhere, somehow. My current neuro. does not believe there can be a connection (research it yourself - there DEFINITELY is a connection).