Seizures in my sleep.

[Endless]

I need an answer to this postical confusion state that happens right after the seizure. My wife usally finds me trying to climb out a window. She calls 911 and the medics try to hold me down. We all get beat up during this period because Im trying to escape for some reason. We need an answer.

Mike,

It happens. There isn't an answser, other than getting your seizures under control.

I have my house "baby-proofed" against my hurting myself during a complex partial. I have the kind of lock on my front door that has to be opened with a key on both sides and I keep the key in a drawer near the door, my windows have double locks that I can't open when having a seizure (too complicated), I keep my knives in a bottom drawer I'm not likely to open, etc.

Is it possible to make your exit points too hard to open when unconcious or confused?

 

[Mike]

Seizure control is the answer! Reducing my Trileptal too quickly was my problem. I dropped from 300mg. at bedtime to nothing when I should have cut it in half for six months. Im back on the 300mg. at bedtime and that should regain control. Thank you for your quick responce. This fourm is so supportive! People open their lives up to help each other,very cool!

 

[Endless]

Wow, Mike. That'd do it!

Will you let us know how you are doing while you are reducing your old dose gradually?

 

[Jbo57]

behlen,
Sounds like you have a form of Sleep Apnea.


I have 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.
Now maybe my Neurologist can reduce my meds.
I'm surprised that finally after 28 years I finally get an answer.

Randy
__________________

Randy...thanks for the insight. I have sleep seizures about every 2-3 years. Never thought about it being related to a sleep apnea...although I had a "breakthrough" seizure about 2.5 years ago...only one I've ever had that wasn't sleep related...so I guess I can throw sleep apnea out the window for me...but I'm thrilled someone else has found a solution.

 

[Jbo57]

I wonder in I am having seizures in my sleep and how would I know. I often wake up at night very sweaty and cloudy headed. Afterwards I cannot go back to sleep. My mind wonders constantly. I have been diagnosed with complex partial epilespy for serveral months. Now that I am on lamictal (keppra did not work) I am still having approx 3 to 4 a week during the day. I am not sure how many or if any at night. During my sleep study the Dr. said I had a few while sleeping. Does this happen to anyone else? Also I have noticed after having a seizure that I am very irritable and the slightest thing gets me upset not to mention I feel really run down. Very depressed and dissapointed every time I have one. I often wonder if they will ever go away and will I ever be able to drive.

Forgive the delay in responding to this. I have just joined and saw your post. I can't speak for everyone, but I have had sleep seizures since about 1977. When I wake up, my muscles are sore...I've usually bitten my tongue...I am wandering around scared out of my mind...and I don't remember much of the recent past. So for me, at least, it's not hard for me to recognize that I've had a seizure. However, the last one I had about two weeks ago was a little different. I've been suffering from anxiety ever since that seizure which is really different and strange for me.

 

[Jbo57]

Mine happen in my sleep period too! Seizures last a few minutes but what follows is a nightmare! Postical confusion for about 40 minutes afterwards. My wife cant stop me fron trying to climb out the window. Are there any injectable drug that would help her to stop me? An Ativan injection would work perfect.

Now that sounds a lot like me...glad to know I'm not alone. I usually get over them in a day or two...however, I've had a strange anxiety since the last one two weeks ago. I actually went to the E.R. because I was sure I was either:
a. Having a heart attack
b. Having a stroke

My right arm went numb...then felt like it was asleep...then felt like it was freezing...then all the above. I also still feel that sensation as well as feeling like I have butterflies the size of Sherman Tanks flying in my belly and it's really affecting my sleep...I used to love night time...now I dread it. Anyway, enough about me. I am just glad to know that there's others out there.

 

[Mike]

The belly thing sounds like an aura to me. I have right temprol frontal lobe seizures,with an aura that starts in my stomic.

 

[Jbo57]

The belly thing sounds like an aura to me. I have right temprol frontal lobe seizures,with an aura that starts in my stomic.

Thanks Mike. I'm really confused on this "aura" thing. I've seen it mentioned in quite a few places on the forum, but really don't understand it. It sounds like something that happens before a seizure, but since mine are sleep seizures I really don't have any warning. If an aura is a precurser to a seizure...then I'm pretty sure this isn't an aura in that I've been feeling it off and on...more on than off...for the last two weeks since after my seizure.

I loved your quote at the end. I'm a minister and serve good people who love me and pray for me and I'm convinced that everything will be fine...just impatient in that I want things to get back to normal...TODAY.

 

[Nc123]

My son is 20 and has had 4, I guess they are tonic clonics where he just begins uncontrolled shaking and unconsciousness for a couple of minutes then takes about 10-15 minutes to be fully alert but has a migraine at that point. All 4 have occurred in his sleep in the morning, luckily with his girlfriend at his side to call us and or 911. The paramedics always seem to be a little worried that he isn't up and talking a few minutes after it. Blood sugar has been a small issue, slightly elevated in the ER but he has had every test known with no answers until we started discussing different possibilities and his primary doctor came up with hypoxemia being possible. We think he has sleep apnea from what his girlfriend describes and a sleep study is scheduled for the 26th of this month. But another thing that is interesting is that he has memory of thinking he wakes for a second and is throwing up before he hears his girlfriend calling out and then the seizure begins. We are also going to check into renting a pulse oximeter to put on his finger and see if we can tell what the level gets down to but the sleep study will tell us that too.

 

[gigi]

I just had a nocturnal seizure last week, my seizure of choice. My husband says that I make a noise, then my T/C last about 60 seconds to 2 min. He says I get up and move around, and he has to keep me from running into the wall. He lays me back down, and my first recollection is his face in mine announcing that I have had a seizure. I compare that moment to being in another dimension. The silence is deafening, except for his voice. He helps me dress and takes me to the emergency room. The ride there is 20 min., and I am still a little confused, by the time we arrive I start to be alert. I can answer questions from the nurse with ease. My dilantin has been increased 100 mg. Now my eyes are shifty - yuck. I had a panic attack yesterday, which seems to follow a seizure, because I fear going to sleep. I had a 7 year stretch without a seizure, wipe the slate clean again! :bigsmile:

 

[Jbo57]

Gigi...I can relate. My seizures seem to last a little longer but since my wife has seen so many of them, she keeps me from running away and then gets me back to bed and the next day things should be ok. This time they weren't but that's life and I'm well on my way to recovery. Thank you for sharing.

 

[gigi]

jbo57:

The anxiety or panic attacks seem to be a residual of a seizure. Not too surprising most of us have these reactions. If not the seizure that's the cause, it's the meds. My husband takes me to the emergency room due to the fact that my biggest trigger are my electrolytes being off. The hot months are when I have most seizures (40 years now), so blood work is essential, plus getting some intravenous fluids. So, living in the south may not be my ideal home! I pushed myself, saw the red flags, ran right past them and bang! Turns out I am not made of steel.
Take care of yourself :bigsmile:

 

[Nc123]

Gigi, I understand your pain. Hope you don't have any more. I thought it was an accomplishment not having one for 3 months then - boom. We still have so many questions. We can't seem to link anything, even heat as we have still had no summer yet in southern California. One thing that is upsetting me now is that my sons girlfriend told me he is scared to go to sleep and is therefore sleeping less. He also expressed this to me. His girlfriend isn't sleeping either as she is now listening for his breathing. This is so difficult. I wish I could take this away from him.

 

[gigi]

Nc123

Having your child with this disorder has to be disheartening to say the least. I am 53, and it still upsets my Mom when I have a seizure. The best way for your son to approach this is from a proactive position. Like any other problem in life - the fear can have a stranglehold on us. Keep working with the health care professionals. That is but only one area of treatment. This is not just about medication anymore.
Lack of sleep is a trigger. Yoga is wonderful, for the entire body-men love it too! Less caffeine, or none, very little prepared foods - the neurotoxins are killers for our brains. If you have not already done your research on this, it is well worth it. Alcohol is a big trigger. Hopefully the sleep study gives you answers. The medical community has never had an answer for my seizures, I have what is called a low seizure threshold - under the right conditions I can have a seizure, whereas someone under the same conditions would not - they would have what is called a high seizure threshold. I take a supplement called 5HTP. It raises serotonin levels, which helps with anxiety and depression. Everyone is different, so we can all tolerate different supplements. Taking baby steps, and a day at a time is a good start. He can concentrate right now on how to feel empowered, until they find a cause, or if idiopathic (no known cause) how to take preventive measures AND apply them. Just getting a good nights sleep can be his goal for now. :clap:

 

[Nc123]

Gigi, thank you for your advice and good luck to you for no more seizures. My son has started practicing deep breathing and his girlfriend is getting him into yoga. He has always been very athletic as it is. We cook everything from scratch at home and avoid eating out and processed foods for the past couple of years. We are hoping for some real answers after the sleep study and we are also getting a referral to an ENT because he has never been able to breathe out of his nose due to what he thought was allergies but instead may be the fact that his nose has grown crooked in the past couple of years. His seizures didn't begin until thanksgiving day 2009. However he apparently had a lower seizure threshold due to an electrolyte imbalance seizure when he was 6. We never thought he would ever experience this again.
We also have a strong family history of growing tonsils and adenoids that get too big and have to be removed and that could be blocking his air as well. We have discussed that fact that his seizure threshold is going to be lower forever for him and he can't become an alcoholic or anything. Good thing! But he will have to be diligent in taking care of his body too.

 

[gigi]

Nc123:

Well it sounds like yall have the bull by the horns on this! His future looks bright!! :rock:

 

[Jbo57]

jbo57:

The anxiety or panic attacks seem to be a residual of a seizure. Not too surprising most of us have these reactions. If not the seizure that's the cause, it's the meds. My husband takes me to the emergency room due to the fact that my biggest trigger are my electrolytes being off. The hot months are when I have most seizures (40 years now), so blood work is essential, plus getting some intravenous fluids. So, living in the south may not be my ideal home! I pushed myself, saw the red flags, ran right past them and bang! Turns out I am not made of steel.
Take care of yourself :bigsmile:

I agree completely...you do what you have to do. I, too, live in the south and everyone acts surprised when it gets 105 in August...like it's never happened before. One very small correction. In my latest case it wasn't panic attacks, this last seizure threw me into anxiety disorder which was pretty much a 20/7 kind of thing. But the doctor, I think, has it figured out and I'm feeling much better. You take care yourself as well.

 

[Jbo57]

Gigi, I understand your pain. Hope you don't have any more. I thought it was an accomplishment not having one for 3 months then - boom. We still have so many questions. We can't seem to link anything, even heat as we have still had no summer yet in southern California. One thing that is upsetting me now is that my sons girlfriend told me he is scared to go to sleep and is therefore sleeping less. He also expressed this to me. His girlfriend isn't sleeping either as she is now listening for his breathing. This is so difficult. I wish I could take this away from him.

That is a VERY common and loving response on your part. This is probably one of the most frustrating of all sicknesses. It's terribly hard to find a cause for it, it comes on in it's own time and it really disrupts the way you want to live. I can relate to the being afraid to go to sleep. What I can say is that there is an answer...it just hasn't been found yet. They are finding new medications every day and while they may not stop the seizures completely...they will reduce them. God bless you and ya'll hang in there!

 

[Ori]

My last nocturnal seizure (happened just as I was lying down, before sleep) I regained consciousness much more slowly and painfully than usual. And I was screaming. For four days I've been foggy, anxious and have had this tiny but nagging headache.

 

[sandi]

Have you had the video EEG or a sleep study done?
My son has Sleep Apnea and We realized that when he woke he would Run,
through the house, out the door until he came to.
My suggestion is to talk to your Dr, also maybe he could give a med for sleep at night.