Tremors and Seizures while Sleepy

[juneday]

Hi all, I thought I would ask your opinions on my seizures because I've never gotten a clear answer from my neurologist as to why I have them and what might be causing them and also just...I'd like to hear your thoughts.

I'll be 18 in a month. I'm a female and I'm on 200 mg of Zonegran. I also have had migraines since I was very young.

I had my first seizure when I was in the shower when I was 13. It was a grand mal; I passed out and my eyes rolled back in my head and I had a migraine afterward; the whole shebang.

Since then I had one more in the shower-then I went on the Zonegran. Then one in the hospital when I was taken there after that seizure. Then I had one while I was sleeping (only evidence of this was I woke up fatigued with a very bitten tongue).

I sometimes have what I call "tremors" even though I'm on medication. Basically they'll happen when I'm in the shower sometimes or when I'm tired in the morning or when I'm trying to fall asleep at night-typically anytime my eyes are closed and I am in a state of drowsiness. My hands and arms will jerk and shake randomly. It's not like a seizure, but it is annoying and worrying. If I open my eyes at all when this is going on, they automatically stop.

I have been told by my neurologist to avoid caffeine and chocolate because they could cause migraines, and he thinks my migraines cause my seizures ( I think because he doesn't know what else could cause them. My EEG and MRI and CAT scans have all come back fine.) I try to avoid them as much as possible, but until now I have had the occasional glass of caffeinated tea or piece of chocolate.

This morning, I woke up early and checked my alarm. I tried to go back to sleep but as soon as I closed my eyes, I started having tremors. They were worse than they usually are. I don't remember much about it except me vaguely thinking that this was bad and I needed to open my eyes so they would stop.

My mom said I was making a lot of noise and talking loudly. She came to see what I was talking about and said I was conscious, and not having a grand mal seizure, but incoherent. Then she said when I did start speaking clearly I kept repeating that I needed help.

I had a migraine this morning afterward, and don't remember much about it as usual, but otherwise I feel fine.

I guess all this is to say-what do you guys think these tremors are? And why do you think I have them? Any thoughts would be appreciated.

 

[Porkette]

Hi juneday,

Welcome to CWE! I've had seizures for 45 yrs. and take my word migraines relate to seizures because before I started having seizures I had migraine headaches when I was just a kid.

You may want to ask your neuro to do a sleep study on you along with a e.e.g. and e.k.g. at the same time. I had this done and found out I was having seizures in my sleep but I didn't even realize it only I felt more tired in the morning.

Start keeping track of your seizures and write down what time they happened on a calendar along with the type of seizure you had. Also write down when you start and stop your monthly cycle because often hormones changing can trigger seizures for some people. I would often have seizures in the shower when my hormones were changing and then my neuro told me that hot water hitting a persons head can sometimes fire up the neurons in the brain and in turn trigger seizures you may want to make the water a little cooler. Also lack of sleep and stress are the 2 main things that can trigger seizures.
Have your neuro do a spect and pet scan on you since they found no problems these tests show a lot more detail of what's going on in the brain and it may help find out what the problem is. I wish you the best of luck and May God Bless You!

Sue

 

[juneday]

Hi Sue, thank you very much for your advice! I will start keeping track of my cycles, and I'll turn the water down in the shower too. Next time I go to the neurologist I'll ask if he'll do a sleep study on me and a pet scan.
Isn't it interesting/odd how some people who have migraines, or had them as children, go on to have worse issues like seizures, and some don't?

God Bless you too!

 

[valeriedl]

I sometimes have what I call "tremors" even though I'm on medication. Basically they'll happen when I'm in the shower sometimes or when I'm tired in the morning or when I'm trying to fall asleep at night-typically anytime my eyes are closed and I am in a state of drowsiness. My hands and arms will jerk and shake randomly. It's not like a seizure, but it is annoying and worrying. If I open my eyes at all when this is going on, they automatically stop.

I'm not sure if this is the same thing that you are talking about but every so often I'll get a 'jerk' or two in my arm or leg. I don't know what causes them.

Also when I'm on the phone with someone and writing down things, usually a person I don't know like the phone company or people like that, trying to write down things that are important, like directions on how to fix something or instructions on how to make something work, my hands will start shaking like crazy. It's sort of like I'm nervous and I want to make sure I get it all written down right. When I get off the phone with them the shaking will stop.

Opening and shutting my eyes has never done anything to help.

I have been told by my neurologist to avoid caffeine and chocolate because they could cause migraines, and he thinks my migraines cause my seizures ( I think because he doesn't know what else could cause them. I try to avoid them as much as possible, but until now I have had the occasional glass of caffeinated tea or piece of chocolate.

I do try to stay away from things with caffeine in them and alcohol but having a glass or two of them usually doesn't cause problems. I've never had a problems with chocolate.

My EEG and MRI and CAT scans have all come back fine.)

There are many people who's test results have come back normal but they do have epilepsy.

This morning, I woke up early and checked my alarm. I tried to go back to sleep but as soon as I closed my eyes, I started having tremors. They were worse than they usually are. I don't remember much about it except me vaguely thinking that this was bad and I needed to open my eyes so they would stop.

My mom said I was making a lot of noise and talking loudly. She came to see what I was talking about and said I was conscious, and not having a grand mal seizure, but incoherent. Then she said when I did start speaking clearly I kept repeating that I needed help.

I had a migraine this morning afterward, and don't remember much about it as usual, but otherwise I feel fine.

This sounds like a seizure. I had a seizure this evening that I was completely aware of what was going on but I though it was 7am and I kept asking my husband if we were going to school today. Both of us haven't been in school in over 20 years. When I came out of the seizure I was still confused a good bit about what day it was, if it was morning or night and it took me a little while to realize that I wasn't going to school.

I've had other seizures similar to this where I haven't blacked out and know what's going on around me but I'm repeating the same thing and really not making sense about what's going on.

I don't always have a migraine/headache after a seizure. How bad the seizure was and how long it was seems to determine it.

As Porkette keep a seizure diary and write down as much about the seizure that you are able to. Before my neuro appt I print it out for him in a basic form:
Month - Number of seizures I've had
Date of seizure, how long it lasted, what I did during it, if I hurt myself in any way like bit the inside of my mouth or fell, if I had a headache and anything else that I think might be important.

He laughs about this, in a positive way saying it's my fancy paperwork, but it helps us discuss things a lot better during the appt. He even keeps it in my file.

 

[juneday]

I think what I call "tremors" are actually myclonic jerks, now that I have done more research on them. They are also what I get as a precursor to a seizure, but the large majority of the time they do not develop into full tonic clonic or even partial seizures, I just jerk and twitch until I open my eyes or it stops on its own. I just wished my medication prevented those, too.

Thank you, valeriedl, for your advice and thoughts. I appreciate it. Your seizure you talked about sounded like the one I had Saturday.

 

[Nakamova]

Yes, the jerks and tremors may well be myoclonic seizures. It's not unusual for them to happen when someone is falling asleep or waking up, though they can also happen at other times of day. They are not always epileptic in origin, but if you already have an epilepsy diagnosis, then they are more likely to be related to that. You can read more about them here: http://www.epilepsy.com/learn/types-seizures/myoclonic-seizures

I have been told by my neurologist to avoid caffeine and chocolate because they could cause migraines, and he thinks my migraines cause my seizures ( I think because he doesn't know what else could cause them. My EEG and MRI and CAT scans have all come back fine.

It doesn't sound like he is an epilepsy specialist. Migraines can co-occur with epilepsy, but if you have an epilepsy diagnosis they are more likely to be a kind of seizure called a partial seizure, which can involve auras, headaches and loss of memory. They wouldn't "cause" more generalized (convulsive) seizures, but would be considered a precursor to them.

The majority of epilepsy cases are considered "cryptogenic" -- no primary cause is found. For whatever reason, a person has a lower than average seizure threshold and is more susceptible to seizures. Sometimes you can find a secondary trigger -- like caffeine or chocolate, or fatigue, or hormonal fluctuations as Sue suggests above. But it's different for each person, so keeping a seizure/symptom diary is a great way to potentially identify and avoid those triggers.

You might find this link helpful:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[uberduper]

Hi Juneday,
I'm 46 and have temporal lobe epilepsy as a result of a childhood brain tumor. For years, my epilepsy was poorly controlled. In 2015, I began a strict diet, the ketogenic diet, which has done an excellent job getting the seizures under control. I'm followed by a neurologist who is a strong advocate for the ketogenic diet in cases where medication doesn't seem to be working. It's definitely worth discussing with your doctor. I wouldn't recommend trying it out on your own. Good luck and I hope your situation improves.

 

[seagull]

I was meaured and given filter specs to wear over ordinary specks it said to sstop migraines by 25% and I situation today that normally migraine overtures I had nothing maybe try them