Nocturnal Seizures

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

L

Levihope

New
Messages
25
Reaction score
0
Points
0
Hi,
I'm Melanie and I have been waking up with my heading bobbing up and down and after several months of this, I've found myself working with a neurologist who seems to think I am having siezures--simple partial seizures. I'm awake a lot of times when they happen. Sometimes I wake up right before them, and I woke up right after one this weekend.

Anyway, still driving, pretty scared, and looking for answers. My biggest concern is why. I'm not sure if this is even the right forum for me to be on since the seizures could be from a brain tumor or MS. The tests are still being done. Kind of crazy stuff.

From what I am reading on here, I'm thinking it's no big "thang" to develop epilepsy mid life, but to me, for now, it's a big "thang."

Anyone else who wakes up at night with partial seizures, known cause?

Thanks so much!
 
Hi Melanie, welcome to CWE!

Definitely in the early going, it all seems pretty scary. Don't worry about whether you're in the right place -- just keep asking questions. One of the best things you can do is gather information -- from your neurologist, and from places like CWE.

The majority of seizure disorders don't have any known cause. Sometimes there's a genetic connection, but in the absence of that or any specific head trauma, you just shrug your shoulders and move on to finding a treatment. I hope the tests can provide some answers for you. While you're waiting, it might help for you to keep a journal tracking when the symptoms occur, and what happens during them. You may be able to identify a pattern, or secondary triggers that are playing a role. Triggers can be things like fatigue, food sensitivities (aspartame, MSG, gluten, caffeine), metabolic issues (low blood sugar, vitamin deficiencies, dehydration), hormone fluctuations (thyroid, estrogen/progesterone), illness/injury/infection, environmental issues (fluorescent or flashing lights, changes in temperature), and/or emotional stressors.

For nighttime seizures, sometimes apnea is involved -- will you be doing a sleep study?

Best,
Nakamova
 
Hi Melanie

I get nighttime seizures as well and Yes the head bobbing up and down, my left hand usually trembles a lot or shake, the right side of my face starts to move ( or twitch as doctor called it ), for a long time now my head does not bob until about 24 hr before I get a seizure so between this and the feelings I get, generally I know when a seizure is coming. I have the headache's afterwards, at the start they felt like mi gran but I am used to them now, after a seizure I usually sleep for about 12/24 hrs depending, but over the last 3 years sometimes I will be good for a few hours and then sleep a little, but epilepsy is part of my life. I have done some weird things without knowing but what the hell somebody laughed ( not me ). Ask questions and read a lot.
 
re: nocturnal seizures

Thanks so much for your responses. This all started in the throws of menopause, and I do notice that when I lay down to go to sleep, a lot of times I catch myself not breathing--so sleep apnea could definitely be an issue. I am scheduled for a sleep study, just waiting for insurance to sign off.

Also, I noticed that many times the head bobbing begins when I turn over in my sleep . . . does that sound right? If hormones or apnea are causing this, is it still considered epilepsy?

The head bobbing seems to be the full extent of any seizure activity right now. I am nauseated during the day with a dull headache, but that could be sinus issues . . . so much to consider.

One last thing, I notice so much more muscle cramping and twitching going on . . . do you think that goes along with this?

Thanks to you both, very encouraging.
Blessings,
 
Hi and welcome!

I have seizures at night as well, but have never had the head bobbing. I don't wake up during them, unless my bladder has failed me. Stupid bladder! I always have the muscle cramps and overall soreness the next day and what I like to call "foggy brain". I hope to see a lot of you here asking any type of questions.
 
If hormones or apnea are causing this, is it still considered epilepsy?
Click to expand...
Epilepsy is a catch-all diagnosis for when someone has had more than one seizure. It encompasses a wide variety of seizure disorders. What they all have in common is that they are characterized by misfiring neurons. Many different things -- including hormones or apnea -- can trigger the neurons to misfire.

The fact that your symptoms started with menopause suggests that hormone fluctuations are playing a role. High estrogen and/or low progesterone can be seizure triggers. With menopause, estrogen levels drop, but progesterone levels do as well, potentially making you more vulnerable to seizure activity. If other causes are ruled out, you might want to ask about trying progesterone lozenges or creams (and avoiding foods or supplements with estrogen).
 
Huskymom, thats funny you say that about your bladder. I'm wondering if sometimes I'm not aware that I am having them at night. The other night I woke up and it felt like I had been punched in my bladder and my upper back was real stiff, and the only thing I could think was that it was the end of an episode.

I notice that when I turn from side to side at night that triggers it sometimes . . . does that make sense?

Nakamova, yes, I've had many episodes, so I guess that would be considered epilepsy. Unfortunately, I get a very adverse reaction to progesterone, which I shouldn't take anyways without a uterus, but I get super, super depressed on progesterone, just one dose will do it. Believe me, for now, the night time seizures are far better than the depression that estrogen brings. But that is valuable information, nonetheless, as it is another clue to discuss with the neuro. I was told right around when they started that I had zero progesterone in my system.

Thanks very much!
 
Welcome to CWE

Melanie,

As you can see from your short time here, you are in the right place. The members of CWE are knowledgeable and compassionate. Please know that you need not be afraid to ask questions. You are in a safe place.

Good luck on your journey.

Tom
 
You must log in or register to reply here.
Back
Top Bottom