Questions about possible nocturnal seizures?

[anastsia12]

This is my first post here and I've cross posted this also on another message board but although lots of people have read it no one has responded. I just began reading about epilepsy last evening and realize I should be careful not to try and self diagnose.

I think the best thing would be to gather the most important information for my dr. I'm just not exactly sure what that is. The rest of this post is from my other post.

I am going to see my Neurologist but I am wondering out loud if I am right to be concerned. I see others with similar experiences. My Neurologist is a headache specialist so I am hoping he will still listen to my concerns.

A little history. I suffer from bad migraines, enough to be on daily preventative medication and also rescue migraine meds. Ironically the med that is supposed to prevent the migraines is also an anti-seizure med however I am not on a high enough dose for it to affect seizures. My migraines started as a teen and I am now in my 40's.

As a teen I used to get a very short really bad headache and then pass out and occasionally I would get a light headed feeling that would last 10-15 minutes. I would also get migraines that would last up to 10 days. The dr's I saw at the time did lots of brain scans I don't remember exactly what (I was young, lol) None of the tests showed anything. So the only treatment was some pills for the migraines that didn't work.

There one time I passed out when a sonic autoclave was turned on at the veterinary hospital I worked at. I don't remember what happened just that I woke up in another room. They stopped using it when I was on shift after that. By the time I was in my 20's the passing out had stopped.

Epilepsy does occur in my family. Both my double cousin and Grandmother have it.

About a week ago I was sleeping at a hotel with my husband after spending a very long stressful day at the hospital for a family members surgery and early in the morning I was having a dream and kicked out hard enough to wake myself. This occurance is what got me to thinking about all this since my cousin with epilepsy does this same type of thing when he sleeps.

I twitch/jerk very hard in my sleep sometimes early at night or in the early morning hours. Not every night though, usually it is when I am really exhausted or stressed. It will also sometimes happen during a nap. I notice that I clench when this happens and bruise myself from grabbing my own arm or leg. My husband says I also talk, laugh, cry. Have taken clothes off and not remembered. I wake up with really dry eyes. Also have tmj. With all this disrupted sleep I wake up with a migraine often.

Any thoughts are appreciated. Sleep disorder or epilepsy? The migraine pain has become unbearable and I have a strong feeling it's connected to not sleeping well.

thanks for reading

 

[RobinN]

Hi anastsis - Welcome
I too had migraines for 30+ yrs. I was on all meds for it but when daily meds were suggested that is when I decided to look at alternatives. Long story short, magnesium has taken all migraines out of the picture. I only get the squeeze if I don't regularly take it. Mine use to last for 4 days, with vomiting and extreme pain.

Now after I got that figured out.... my daughter began to have seizures. Never a history of migraines, but her first seizure happened the first year she began her menses. The seizures she has (off meds) are Tonic Clonic. She had other seizures when on meds, but they were all very very strange. Now nothing like that shows up since she has been med free for 3/4 of a year.

Migraines are in the seizure family (new news to me) and what you are describing sounds like seizure activity. Rebecca's neurologist recommended that I continue with higher doses of magnesium for her and along with other alternative therapies, such as diet and neurofeedback, we have been able to reduce her seizures from 6/mo to less than 1/mo.

Not that all seizure activity is the same, but yours sounded similar in nature to what we have experience that I wanted to share it with you. However, Rebecca's seizures are all during the day. I know of only one (#2), that she experienced when she was asleep.

 

[RanMan]

Hi Anastsia12
Sounds like you could have a case of sleep apnea where your brain is being deprived of oxygen, (blockage of the air way) causing nocturnal seizures and could be part of the migrain problem.
Have you had a sleep study done? If not, mention it to your Doctor and one can be set up for you.

Randy

 

[anastsia12]

thank you

Thank you for the information

RobinN,

I have tried the magnesium for my migraines as well but I wasn't very compliant with taking it like I am with my regular preventatives. Might be worth revisiting. I wasn't really sure about the correct dose at the time.

Like your daughter my symptoms began right around the time menses started as well. The symptoms have changed over time.

RanMan

I've never had a sleep study but it does sound like something to pursue. I've always had the sleep issues I just never thought anything of it until just recently. My poor husband got a good kick in the back. (that's what started me on this search really) Scared me more then him, I shouldn't be kicking in a sound sleep and feeling panic in my sleep.

My husband says I don't snore does sleep apnea always accompany snoring? Of course hubby sleeps really, really sound and might not even notice, lol. He does notice though when I twitch really hard.

 

[Bernard]

Hi anastsia12, welcome to the forum. :hello:

We have several discussions here about migraines which you might find interesting: migraine discussions

... I twitch/jerk very hard in my sleep sometimes early at night or in the early morning hours. Not every night though, usually it is when I am really exhausted or stressed.

That is fairly typical of seizure activity (to be triggered by tiredness or stress).

It will also sometimes happen during a nap.

If you are needing to nap, you are likely not getting enough good sleep in the first place. Ranman may be right about the sleep apnea.

I notice that I clench when this happens and bruise myself from grabbing my own arm or leg. My husband says I also talk, laugh, cry. Have taken clothes off and not remembered.

These are all consistent with complex partial seizures.

I have tried the magnesium for my migraines as well but I wasn't very compliant with taking it like I am with my regular preventatives. Might be worth revisiting.

Try the ionic form.

Like your daughter my symptoms began right around the time menses started as well. The symptoms have changed over time.

Have you ever had your hormone levels/system checked? They can be a huge factor.

My husband says I don't snore does sleep apnea always accompany snoring? Of course hubby sleeps really, really sound and might not even notice, lol.

Snoring is a common symptom, but is not always present with sleep apnea.

 

[stilldancing_98]

I have night time myoclonic seizures. I do not have any kind of sleep deprevation. All these Ideas are great. I think you should write them down and talk to your neurologist about them. My brother has a deviated septem. He was tired a lot. He had surgery done and it has helped him very much.My son has a deviation and the doctors are going to do a sleep test on him because he has myoclonic jerks. More when he is stressed.Migraines run in our family to. I would suggest a sleep study.And get a scan or mri done right away, they can tell if there is any kind of deviation.They did it with a scan a couple of weeks ago with my son.Good luck and welcome.

 

[anastsia12]

I haven't been back to check the posts for a couple days because I've been really sick with migraines. But I did make the appointment with my neurologist so that's a step in the right direction.

Thank you all for the great information. I am just so frustrated/tired of feeling bad. I am hoping that my Doctor will listen to my concerns with a little patience.

My appointment is for the second week of Jan. I wish it was sooner but with the holidays that was pretty fast for this office.

 

[Mike]

You can find out if your seizing in your sleep by setting up a camara that will film any movment in your bedroom while you sleep. I used this method to find out where my focus is located. I did my own sleep study and sent the film to my nerologest at N.Y.U.

 

[RobinN]

My daughters symptoms are being controlled after making nutritional changes.
Have you kept any kind of journal to the events you are concerned about?

We have found she has a blood sugar issue that was not picked up with the conventional tests. Also processed foods seem to cause her problems as well. We are watching the choices carefully.

 

[Mike]

I keep a journal about it all, I log all the Meds and all the changes. All the tests, all the stuff that gos along with seizures. Right now Im concerned about what happens to the shunt that was placed in my skull in1998 that was supposed to last only ten years. I was thinking that the pressure in my head that was a side effect of prednisone was being caused by maybe that breaking down. With The big E(epilepsy) theres always somthing to pay attention to. Somthing to take note of. If we pay attention and write it all down so that we dont forget. WE learn what works best for us. If we can help ourselfs than we can help others! If we turn our blessings into somthing good for someone else than we will always have them.

 

[RobinN]

Very true Mike. That is why I share what works for my daughter.

 

[anastasia12]

Hello Everyone

Couldn't find my old log on so had to start new. I've gone to a neurologist who is a migraine specialist (yikes, very expensive) Anyway I found all sorts of things out. I am low in vit D so on a prescription now, low in magnesium (had some infusions but need a good supplement) any recommendations?

And the big one is I have adult low growth hormone which is causing all sorts of other problems. And now doing the I hope insurance doesn't deny my meds dance.

No epilepsy. looks like the lgh was contributing to all the nocturnal and other symptoms I was having.

So at this point I will probably just lurk since I do have family members with epilepsy

 

[Meetz1064]

Hmmmmm

Why not try the ionic form of magnesium like Mr B & Robin suggested? I don't have nearly as many headaches/migraines either since I have started using magnesium.

Adult low growth hormone, huh? I haven't heard about that one.....I'll have to go look it up

Feel free to stick around. We'll be here, I promise.

Meetz
:rock:

 

[stilldancing_98]

I want to tell you about midland life insurance. I also have another one. You can not be denied. It's a term insursance. this is what you should go on. It's 2 years what ever you put in, if you pass on before the 2 years are up you get back what ever you put in. But , if and I have a very bad epilepsy, you make the 2 years, it turns into whole life. This is your best bet. If you are over 50 than there is medicare whole life insurance. No questions asked.

 

[stilldancing_98]

And, I have nightmares when it comes to nocturnal seizures now. They have changed so much over the years. My epileptologist sais that those are part of the seizures.He has had them monitored.

 

[RobinN]

Sounds like you have an excellent doctor there. I had to quit going to mine, as I want all the extra med funds to go to my daughter.

I learned something about magnesium. You can have normal blood levels, but it might not be crossing the blood brain barrier. What shows up in the blood test may not be what your brain is actually able to use. I am not sure if there is a test yet for that, but you will know after about a couple weeks whether or not it is working. It really is remarkable. Those days that you know are around the corner, and you would be in a fetal position, are fewer and fewer in number. No side effects.

 

[Mike]

Im not a big fan of vitimins because I used them for many years and from my experince I believe that all the heavy metals, like calcium,magnisum and iron played a big part in plugging up my arteries. My arteries and kidneys were full of calcium oxidates causing kidney stones that needed to be removed and blocked the arteries in my heart so that I needed Bypass surgery.

 

[RobinN]

I have to say that the doctor that recommended I try the magnesium for migraines, actually shuddered when calcium was mentioned. When I said Rebecca's pediatrician at the time recommended mag/cal combination he very forcefully said NO!
He says that calcium is overrated, and we are overdoing it in our diet. I bought some iron, since Rebecca's blood count was low, gave it to her for a few days, and then read a bit more and decided against that mineral. I still give magnesium, as I believe from my research that we are not getting enough in our food.

Magnesium has made such a major change in my life, that I can only say wonderful things about it. I would like for us to get all we need from our diet, but I know for a fact that this is not so. For now we need to supplement, and I attempt to do it carefully. Just as carefully as I would take medication. I made daily notations of any disturbances, or improvements.

 

[Mike]

The B vitimans are important for brain function but when I take alot of vitiman C, I feel like Im supercharged. The doctors told me to stay away from C because it may cause kidneystones. Were all different and our systems react differently. Were lucky to be able to share our experinces and in that learn from each other. I know that Ive learned new information at this site. Its a good thing!!!

 

[RobinN]

We need to understand how the body does and does not absorb the vitamins, and how if we have a diet that does not support adequate supplies of these vitamins and minerals, we can easily become deficient.