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Have you ever had a seizure during sleep?

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Posted 6/20/2013 8:35 PM (GMT 0)
Hi there,

One of my lyme symptoms are seizures. They are conscious seizures, meaning that I am completely aware the whole time. The seizures can involve 'staring' episodes (where my whole body just goes on pause), tingling/numbness, difficulty speaking, and involuntary movements. The movements usually involve the right hand/arm. Sometimes, the movements may involve other parts of the body and, at times, it may also involve the left side of the body. The seizures last anywhere from 20 minutes to 3 hours (much longer than that when they first hit and before I received any treatment).

A neurologist dianosed that this is not an epilepctic seizure (no, because it's lyme disease). The neurologist asked if I ever had a seizure when I was asleep. I said "I don't know. But, I don't recollect ever waking up because of a seizuire." in other words, the movements have never woken me up.

Once, I did wake up from a 'focal stare' seizure. Actually, it is more that I was falling asleep. I was in that half-asleep, half-awake mode. I was just beginning to dream. It was just outlines, no details in the picture yet. But, the picture literally 'paused' -- as if I were watching a movie and someone pressed pause on the remote control. It was so bizarre and unexpected that I 'woke up' from this half-asleep phase and said to myself "what was that?" Then I felt another wave of a focal stare and said "AHHH... I am having an episode' (I used to call them that, because at the time I did not know they were 'seizures'.)

So, I have a question for anyone having seizures as a part of lyme. Have you ever had a seizure while you were asleep? If you did, how do you know? Did you wake up? Did your partner wake up and tell you? Also, if you did have a seizure during sleep, can you please tell me if your seizures are conscious or unconsious?

Thank you.
Posted 6/20/2013 8:57 PM (GMT 0)
I didn't realize all of those 'episodes' could be consider seizures! I've experienced all that you have explained, and now that you have described your seizure while asleep - I've had those too. My first question when I read the title of this thread was, how would a person know - I mean they were asleep, right? LOL!!

I've experienced both conscious and ones where I went into a trance like state and couldn't move - or breathe as far as I know - fortunately they didn't last very long!!! LOL!

Most of my seizures happened when I was using abx, or shortly thereafter though. I haven't had one since I started using Holistic medicine - co-inky-dink? maybe? I don't know.

One of the worst things that have happened to me while asleep is giving myself a black eye, not once, but three different times!! I finally took a picture of my black eye because they were always healed by the time I got to my LLMD! I know I would wake up directly after hitting myself like that though - because my head hurt pretty bad, or I "fell" out of bed - very unusual for me, or I didn't know what woke me.

I have also had what is called Lyme seizures - where there is uncontrollable shaking. Mine used to get so bad that I would "bounce" right off of whatever I was sitting or laying on - including my Holistic Practitioners treatment table! LOL! She couldn't believe her eyes - it was kind of funny later!

I don't know if this helps or not, but I hope so!
Posted 6/21/2013 1:35 AM (GMT 0)
Wow. I don't know about you, but I found the 'paused dream' absolulely fascinating. I am an analyst by trade, and I can't help but look at the logical side of things. And I found that specific episode the most insightful. I always felt a large part of my brain go on 'pause'. When the dream/movie in my head went on pause too, it just matched so well what I was 'feeling' when I was awake and going through those episodes. I would just 'pause' and be consciously waiting for the pause to end. "Someone press PLAY!" LOL!

I did not know that 'uncontrollable shaking' was called lyme seizures. I have had really bad 'shivers' before. I feel really cold and my whole body (including legs and arms) is 'shivering' really intensely. Does this sound like the 'uncontrollable shaking' that you have had? This is not the norm for me, but it has happened a handful of times.

Honestly, I was kind of hoping that people would say "No, I am not aware of seizures while I sleep." Sounds like you have definite proof of having them while asleep though! I have definitely 'hit' myself repeatedly while awake and having an episode, but not while asleep.

Basically, now I am wondering why I have never woke up with them and/or had my husband wake up. At first, many of my siezures were just focal seizures (the 'pausing' kind) with little to no movements. I could easily see myself sleep right through that. But over time, the movements became quite intense. So, why have the movement never happened while I am asleep? I can only assume that it would wake me up.

Could they possibly be stress induced??? That makes no sense though. I logged every symptom for maybe 4 weeks straight when all of this started and there were no signs of a pattern anywhere. Also, the seizures are strictly seizures for me. No sense of panic and no 'doom and gloom' type feelings. I am just observing and waiting for it to end. Sometimes I get upset when an intense one hits out of the blue and it hasn't happened in a while. Or I may get upset if it is an exceptionally bad episode. But usually it is not an emotional event.

No, I am certain they are not stress induced. But, why would I not be waking myself (or my husband) up with these movements? What is special about the night time?

Maybe I will have to google that one. Maybe I can find answers out there somewhere.

If anyone has any insights, please do share!
Posted 6/21/2013 6:01 PM (GMT 0)
LOL! At first the paused dream scared the beejeebers out of me!! It wasn't until it happened a few more times that I was able to not worry about it much. Then I started 'pausing' during the day too. Not able to really respond to anything in any way, just staring and watching what was going on around me. Kind of semi-aware of things.

about the seizures while asleep again, my dogs (two of them anyway), who are forever right at my feet as I sleep. Although there was that period of time where they wouldn't even sleep near me! My poor hubby was really crowded and would wake up because he was being pushed out of the bed!! LOL!

He would tell me about how the dogs wouldn't even get near me and that I would sometimes "thrash around" in my sleep. Because my mind was so compromised, it took me a while to understand that I was having small seizures during those times.

It wasn't until I started just passing out that I began to realize there was more to all of this than I realized - because the only time I would pass out was in the middle of the night when I would get up to go potty!

I actually posted about this on this forum. LOL!! I found one of my posts where I talk about it!! WOW! smhair Talk about a blast from the past!! Notice that I had to write only a couple of lines together so that I could still read what I was writing -thanks to the neuro Lyme. I still try to break up my posts so that those with neuro Lyme will have an easier time reading them.

Anyway, here's that post, just for giggles! www.healingwell.com/community/default.aspx?f=30&m=1504644


Depending on what you take/do at night to get to sleep, you may sleep right through them. I used to be so amazed that my dreams would mimic what my body was doing at the time - it all flowed so well that it took a long time for me to understand this!

Yes, it's really, really bad shivers essentially. I got them all too often. I do believe that is more related to your adrenal health than the infections - although the infections are usually what causes our adrenals to have issues in the first place!! I saw it as a running down of my 'batteries'. My body and my mind were quite compromised by that time.

Of course all things Lyme usually worsen with stress, but I don't think many are caused by stress alone. It's usually a part of the disease process, some organ or function that isn't working well any more due to the diseases we have, or something similar.
Posted 6/21/2013 6:06 PM (GMT 0)
This is another post I made way back when - I'll only copy and paste this one, as it's in the middle of the thread, but I have to include it here! It's too funny not to!! turn

"I was going through this passing out phase and one night I got up to use the potty, everything seemed fine until I got into our hallway leading to our bedroom - which has very hard tile - and I remember thinking that I had to make it to the bed before passing out. I recognized the feelings that usually occurred just before I would pass out, so I could tell that I was on my way down. Well I didn't quite make it to the bed -fortunately as I would have landed right on top of Hubby & he was still sound asleep! I woke up with my face in one of Hubby's work boots, thinking "Man! Am I ever glad he doesn't have bad foot odor!!! Giggle!!"

LOL!! Here's the link in case anyone is wondering:
www.healingwell.com/community/default.aspx?f=30&m=2197758
Posted 6/22/2013 10:17 AM (GMT 0)
Whenever you have bad shakes or shivering, take your temperature. I'd be interested to see what your core body temperature was at the time.

My daughter has been diagnosed with epilepsy for the past 8 years. I've learned a lot over that time.
Posted 6/22/2013 12:12 PM (GMT 0)
I have the same type of seizures you speak of, I have had them since I 2012. My LLMD is trying everything they can think of to stop the seizures, she even called a seizure expert. I was getting them up to 8 times a day, now I get them about twice a week.

My treatment is ondamed machine ( a stronger rife) , and oxygen, with buhner's herbs. As I have been in treatment I do see lots of improvement, I average about one bad day a week now instead of about one good day every few weeks.

Sometimes I freeze up, and can't move anything, other times my whole body just shakes, and I can't talk. I am aware of what is going on around me, but I can't stop it.

I talked to someone in Canada who had the same thing, and she has a rare tick born virus once they found it, and she was treated for it , it want away.

I am sorry you are going through this as well, Lyme disease is bad enough, the seizures makes it so much worse.

justme
Posted 6/22/2013 12:31 PM (GMT 0)
Georgia Hunter,
When a person is going through those kinds of shakes, they can't do anything but sit/lay there and hope that they end soon. I couldn't even grab a hold of the arm of a chair to keep me from falling off! Trying to grasp something as small as a thermometer would have been impossible for me.
Posted 6/22/2013 1:56 PM (GMT 0)

Traveler said...
Georgia Hunter,
When a person is going through those kinds of shakes, they can't do anything but sit/lay there and hope that they end soon. I couldn't even grab a hold of the arm of a chair to keep me from falling off! Trying to grasp something as small as a thermometer would have been impossible for me.

A family member could use a forehead strip, ear thermometer, etc. A temperature drop would indicate a hypothalemic involvement and would help find the root cause.

My opinion is there is an electrolyte imbalance at the time of the seizure. My daughter was paralyzed once for an entire day. She couldn't move anything but her eyes. She could talk though. You think of a potassium issue when this happens, but it could be another electrolyte. My daughter had taken Augmentin prior to her paralyzation. Augmentin is amoxicillin and clavulanate potassium and I think the ingested potassium contributed to her problem that day.

We all have a seizure threshold and sometimes, environmental or genetic factors cause our seizure threshold to drop. Medications, stress, and hormones can do this as well. With Lyme, I would think an environmental influence would be the cause. Our internal environment with Lyme is in such a disarray, it would be easy for a membrane stabilizing element like calcium or potassium to be periodically skewed. Testing for this would prove useless as the levels return to normal after the event.
Posted 6/22/2013 11:35 PM (GMT 0)
Hello Traveler!

My god, the things we can laugh at once they are past! LOL! I can say that I have never passed out. I think that would be even more scary than the seizures!!


Hi Justme!

Yeah, the seizures suck. For me, it is defiinitely the most difficult symptom. When it happens at work, people find it quite scary. At the same time, it is the only symptom that other people can 'see' and hence 'believe' that I am not well.

I find it interesting that all of our seizures are similar and 'conscious'.

I have some questions if you don't mind. Have you ever had a seizure during sleep? How long would one of your seizures last? Can they be long-lived?

Lastly, you wrote: "I talked to someone in Canada who had the same thing, and she has a rare tick born virus once they found it, and she was treated for it , it went away." I don't suppose you recollect what virus it was? I figure you would would have said so the first time round if you remembered, but I figure no harm in asking, right? LOL!


Hello Georgia Hunter!

First when these things started over a year ago, I ended up going to ER on several occasions. Each time, they did blood work to look for what was wrong. This blood work was always done when I was in the middle of a long seizure. Only once did something come back abnormal. My PO4 (phosphorous) tested low. Mine was 0.69 and 'normal' is supposed to be in the range of 0.80 to 1.45.

At that time, they gave me a liquid supplement to drink to bring my phosphorous back up. But, it was only that one time. All other blood tests ran at the hospitals and at my family doctor's have always come back normal.

I have had other 'wierd' symptoms happen too with the siezures, on occasion. One of the rare symptoms is that I have had one hand go very cold while the other is normal. Interesting to note that the first time this happened, both hands were under a blanket.

The doctor's have never noted that my temperature was high or low. If I ever get the 'shivering' happen again during a siezure, I will try to get someone to take my temperature. However, I have not had that particular symptom happen in quite a while. And I will hope that it never happens again! :) But if it does, I will try to remember to have my temperature checked and I will let you know the results. I'll also check it during a normal seizure (God, that is a horrible sentence to be able to write.)

Thank you to everyone for your responses!!
Wishing you all the absolute best of health!
Posted 6/23/2013 6:39 AM (GMT 0)

Hi there, wow, that's some scary stuff! I marvel at the resilience it shows that you have good senses of humor.

Thank goodness for odor-eaters and good foot care?

I posted a thread about epilepsy and either manganese or magnesium a while back - brain fart - I don't remember which. It might be worth a look.

 There's some research linking seizures with a shortage of one of those. I think it was the Manganese. I found the info because of the announcement that Lyme is Manganese dependent.

Since that didn't show in your blood tests it may not apply, but maybe the causes vary?

I had my whole torso start jumping around in violent shakes a couple weeks back for the first and I hope only time. I'm not here for me, it's my son who has Lyme but it was definately some kind of convulsions. I thought my blood sugar was dropping at a weird time. There may be many causes?

Who knows what nerves the nasty little bug is using as a trampoline.

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