It's an outer body experience! er um no it's a sleep seizure?

[GoldSeraph]

Hi Bernard and co-posters,
Thanking you all first with regard to all the work you do for others. I've been experiencing some kind of episode for years during the in between stages of sleep. Up until previously for years, I thought I was having outer body experiences and or psychic connections! But then I started to question it when the experiences turned uncomfortable and I was not able to shield myself from these negative episodes, where others psychics were. I googled like crazy and came up with sleep seizures, which fit me to the T.

This is a typical explanation of an episode for me. First I hear loud music or cricket like sounds. Then a foreboding doom or feeling scared. Then my body, mostly the right side, will vibrate slightly to violently. Then I feel like I am being sucked into a vacuum. I am awake, have my eyes open. Visually things looked warped sometimes and sometimes I see different men in the room. I am able to move, once I am done with the vacuum feeling and communicate with them. This entire episode can repeat itself over and over again....seconds for each one. Which leaves me nauseous and my balance unstable. It can happen day or night, but always in between sleep stages.

Presently, and for a long time....I feel so drained. I approached my endocrinologist recently and he said it sounds like the classic simple partial seizure. At present, I am setting up a consult with a neurologist.

Does anyone have some similar to what I've explained? If so, how were you diagnosed? What meds did you go on? Any suggestions? Thank you all! Diane

 

[Nakamova]

Hi Diane, welcome to CWE!

I approached my endocrinologist recently and he said it sounds like the classic simple partial seizure.

You have a very smart endocrinologist -- smarter than many neurologists. I have to agree, your symptoms sound like simple partials in every way.

Simple partials can sometimes be tough to diagnose because they don't always show up on EEG. But a good neurologist should be able to make the diagnosis from your description of symptoms alone. It's possible that an overnight sleep study would be helpful as well. You can read a bit more about simple partials here: http://www.epilepsychicago.org/epilepsy-facts/seizure-types/partial-seizures/ and here: http://www.epilepsy.com/epilepsy/seizure_simplepartial. I'm sure CWE members will chime in as well.

Here are some of the drugs used to treat simple partials: lamictal, topamax, trileptal, tegretol, depakote, keppra... Everyone reacts differently, and what works well for one person won't necessarily be perfect for someone else. Hopefully whatever you treatment you try will click the first time.

This link provides good information for ways you can tackle epilepsy-related symptoms right now:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[GoldSeraph]

Dearest Nakamova,
Thank you for your kind words of support and the links. Yes, I really lucked out with my endo. He did chuckle and say that he couldn't go into it any further with me because it was very complex...we both laughed and I said, I know...I need a referral. I will check out the links. I have no strength these days and the episodes are becoming more and more frequent. They seem to run in clusters for lack of a better word. Like yesterday I heard music while working on my computer and that night I had one. By clusters I mean that they would happen several days in a row, four to seven episodes at a time. Thank you so much!

 

[Nakamova]

If you aren't already, consider keeping a symptom diary. It can be useful to show the neurologist once you get the referral, and it might also help you identify patterns or triggers. Triggers can be just about anything -- the #1 trigger is fatigue, but triggers can also be related to diet or metabolism, food sensitivities, low blood sugar, dehydration, hormone fluctuations (thyroid, estrogen), infection/illness/injury, photosensitivity, and just about anything else that can cause physical, physiological, or emotional stress. If you can isolate and avoid a trigger, there's a chance that you might be able to at least reduce the number of seizures you're having. Keep us posted.

 

[momof3boys]

Yes I do agree, It sounds a lot like a simple partial seizure. I have simple partial seizures and for me, I get the following symptoms....

They start out with a feeling that something isn't right.... then I get a funny up rising feeling in my stomach, a nausea feeling.... I get a feeling of fear that over comes me, my heart begins to race, I get a tingling feeling that starts on my left side of my body, which works its way up to my face, where it feels like a million needles are attaching the roof of my mouth... during this, my head feels as though someone is forcing my head to turn to the right, and then it leads to my right side jerking. they last for seconds. afterwords I have a headache and Im weak and tired. Im able to hear whats going on, people speaking to me, but I cant respond to them during the seizure. Its scary that our own bodies can do this and you have no control over it at all. Im glad you have a doctor that recognizes these and will send you to a the right doctor!

 

[GoldSeraph]

Yes I will do that. I do have hashimoto's thyroid disease, but it is regulated. I have tried taking a blood sugar level once when I had an episode, it was normal. I do have a few other auto immune diseases going on...nothing serious. But, I have to say that it does cause stress. Plus the fact that I am so fatigued and it seems like it is getting worse...this turns my world upside down. I also I sleep apnea and I don't use the machine anymore. So I'm sure I need to be re evaluated. I just want to get rid of this intense fatigue so badly. Last night I had ten episodes of leg kicking...I mean karate kicks! lol But it kept waking me up. Thanks for helping me out with this.

 

[GoldSeraph]

Kristin, Do you get them in-between sleep stages too? That's the only time that this episode happens.

 

[Nakamova]

I also have sleep apnea and I don't use the machine anymore. So I'm sure I need to be re evaluated.

Sleep apnea and sleep seizures are linked, so if you can find a way to reduce your apnea that may help. This link will take you to CWE threads that discuss apnea: http://www.coping-with-epilepsy.com/forums/tags/sleep apnea.html

Have you tried taking a magnesium supplement before bedtime? Magnesium plays a role in brain health and in releasing muscle tension, and has helped some people reduce twitching, jerks, spasms, cramps, etc.

 

[GoldSeraph]

Nakamova, Thanks I will check the link out. No I haven't tried Magnesium ever. My husband takes it for cramps, so we have a bottle and I will try. You might be right about the apnea....but I also remember getting them while wearing the machine. But there are so many variables with that machine, you know. I could have popped the seal that night. That happened often....so frustrating that I quit using it.

 

[cadsgj]

While the majority of my seizures I have to deal with are not at night, on occasion I do have a night one. Really strange to me in that I half wake up but my eyes do not open... in I guess what one would think is a half dream, everything in my mind gets incredibly HUGE except for me, I am merely this tiny tiny little thing in the world. Not sure just how long it lasts, but when it is does end, I very slowly start to fully wake up. I only remember one time where I woke up after this type of seizure, and when I went back to sleep, this night seizure came right back. When I went to talk to my neurologist about it, he never really had much to say of anything really different. He checked me for this and for that and stated to me that everything was still the same and he suggested that we not try changing medication. Hmmm... never brought it up with him again as it had made me feel like the fool going to him about this, what i thought was a very strange seizure.

Originally, I didn't even know this was a seizure. I had no idea just what was happening. Forget who explained it to me and helped me to understand it, while telling me that some people have more than one type of seizures. Anyhow, I do hope things go well for you and you get good steps forward.

 

[GoldSeraph]

I told my endocrinologist about my equally bizarre night episode and he immediately told me that it sounds just like a classic simple partial seizure...he is the one who has referred me to a neurologist. Thanks for the well wishes!

 

[MuayThaiFighter]

sounds pretty similar to nocturnal seizures I had when I wasn't really being treated at all. They were so surreal. I remember them like dreams but until someone saw them I realized they were not dreams. Last night I had one and its just so unreal explaining it is almost impossible. I swore it was a dream, and my g/f told me I was making continual motions like usual. Hope you get more answers, Epilepsy is very complex.

 

[GoldSeraph]

Muay, yes! After I googled and search...the further breakdown of what it is called was Nocturnal seizures. Although, I have identified different *auras* during the day like smelling cigarette smoke and hearing music. For years I thought I was psychic lol, hence the title of the thread I also sleep alone, so no one can witness. and Yes, I can see by reading that epilepsy is very complex and doesn't always show clear on tests. At least I do know that I will have to start using my cpap machine for sleep apnea...that is certain. Luckily it is broken hehehehe I can put it off for a bit longer