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Old 10-24-2002, 08:43 PM   #1
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Question To those with Nocturnal Seizures...

Do all of you always have only Grand Mal's in your sleep? Just wondering. I have only nocturnal seizures too and experience an "aura" just before it wakes me up all the way. Lights bug me (especially night-driving, police cars, stupid strobelight stoplights)and so do certain sounds (like the racket a MRI machine makes when you're in there). The worst part is the absolute terror that hits you just as you realized what's going on. It's like being trapped inside your own head. Mine always seem centered around my periods. They are mostly controlled by meds, but every now and then (2yrs or so) one or two will slip through. You have no IDEA how WONDERFUL it is to find other people who only have them in their sleep!!! Everyone (even some within the epilepsy "community") has treated me as if I was crazy and there were no such thing as only having nocturnal seizures. Glad to know there's some other guys out there! Thanks.
Addie

 
Old 10-25-2002, 08:43 AM   #2
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AddieNorris
I am very ignorant about differenet kinds of seizures so I don't know if I have grand mal, I don't think so, I always bite my tongue, I never know when I am going to get them, however, it does seem like they do happen around my periods or when I'm under an extreme amount of stress.

Medication seems to control them, I am concerned about long term affects of Dilantin use.

I too am very happy I stumbled onto this site, it feels so good to know there is somewhere to go where other people have had similar experiences. My doctor is pretty arrogant. I think he has been doing this for so long, he has gotten apathetic. I am currently looking for a different doctor.

 
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Old 11-04-2002, 10:59 AM   #3
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Just wondering... are people that have always had daytime seizures suceptible to having nocturnal seizures? I've never had a seizure in my sleep... but if there's a possiblity, I would like to know.

Also, I read in a book (kind of outdated...) that most epileptics seem to have more seizure activity when they are relaxed... and that they tend to keep busy because it suppresses seizures. Is this true? I'm the opposite... If I get stressed, think to hard (heh) / concentrate, or get angry, I get very dizzy and sometimes have small absence seizures or myoclonic seizures. I feel better while relaxing.

Just another thought... I used to feel more likely to have a spell while using the computer before getting glasses. (I'm nearsighted and finally admitted I needed glasses. ) Anyone have any ideas why that might be? Maybe the strain of staring and squinting at the screen triggered the "concentration" factor?

-John

 
Old 11-06-2002, 06:23 PM   #4
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I just wanted you to know that I also have 99% of my grand mals while I'm sleeping whether its night or during a daytime nap... You no what sux...when u wake up from one and your tongue is so sore from all the gnawing on it...happens almost every time

 
Old 11-25-2002, 11:28 AM   #5
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You're not crazy. I started having seizures after my first child was born, so I feel it is somehow hormone-related, including happening near time for my period. I only have seizures when I am asleep, it doesn't seem to be a certain stage of sleep, but anywhere from just dozing off to being in a deep sleep.

My seizures are grand mal, I stop breathing, the whole "sh'bang" and my husband sleeps in fear that it's going to happen again.

So, where can we find out more about controlling this? Preventing this lifestyle of misery??? I am desperate, and I want to live a normal life.

There is hope, I just know it!

 
Old 12-08-2002, 12:09 PM   #6
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Krista2882 HB UserKrista2882 HB User
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Quote:
Originally posted by AddieNorris:
Do all of you always have only Grand Mal's in your sleep? Just wondering. I have only nocturnal seizures too and experience an "aura" just before it wakes me up all the way. Lights bug me (especially night-driving, police cars, stupid strobelight stoplights)and so do certain sounds (like the racket a MRI machine makes when you're in there). The worst part is the absolute terror that hits you just as you realized what's going on. It's like being trapped inside your own head. Mine always seem centered around my periods. They are mostly controlled by meds, but every now and then (2yrs or so) one or two will slip through. You have no IDEA how WONDERFUL it is to find other people who only have them in their sleep!!! Everyone (even some within the epilepsy "community") has treated me as if I was crazy and there were no such thing as only having nocturnal seizures. Glad to know there's some other guys out there! Thanks.
Addie
hi! I have 2 comments.
One is about how you said your seizures tend to center around your period. So do mine, and I had the worst time trying to convince my first neuro that it was true!! He kept telling me no! But the ONLY time I have seizure activity is for a couple days before I get my period, sometimes during it, and then I get seizures again right directly in the middle of my cycle... the only other time I have problems is if I forget to take my meds at the right time (i take tegretol right now 3 times a day, so sometimes it's easy to forget. lol.. i think i'm getting my meds changed tho because the Tegretol doesn't seem to be working as well anymore), so then I mentioned the monthly cycle thing to my regular physician, and he said it's entirely possible because parts of your body retain water when you get your period, and then in the middle of the cycle, and in some women, their brain might swell a bit, which can trigger seizures in people who are succeptible to them. he gave me anti-inflammatories to try, which i haven't tried yet because he told me to take them 2 days before i get my period, but I can never catch it in time. grr..
and my second comment was that I don't know if I exactly have noctournal epilepsy, but the time when I had a gran mal was during the night (I was actually awake though, but trying to sleep), and sometimes the smaller seizures wake me up during the night, or i'll be having a minor one when i'm just waking up in the morning, and then it'll stop once i've completely woken up....
but that's not the only time i have them, so i don't know. the neuro still hasn't really figured out what kind they are or why I have them...


 
Old 12-13-2002, 08:27 AM   #7
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Seizures which are triggered by hormones like during your period are called Catamanal( sp), Nocturnals are actually while you sleep in certain phases of sleep. SOme people have them just as they are drifting off to sleep, some while in deep REM sleep, others just before waking in the morning. My son has the last and possibly in deep sleep as well.
I do not think you are more prone to them if you seize in the day. Depends where in your brain the seizures originate...

------------------
Son, 11 with Epilepsy
__________________
mom of 2 teens who have battled seiuzres.

 
Old 05-01-2005, 10:36 PM   #8
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Re: To those with Nocturnal Seizures...

Bumping for a new member. Phoebe

 
Old 05-03-2005, 08:21 AM   #9
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Re: To those with Nocturnal Seizures...

Addie,

I feel the same way about being trapped in your head. You can hear people around you panicking and you can't tell them that you have Epilepsy or to calm down. Also my night time seizures are almost always accompanied by scary hallucinations. I see big giant bugs or scorpions in my bed or on me and want to scream, but can't. The thing is, people around me see me "spazzing", as my mother calls it, but in my head I am thinking, "Oh great, I'm having a seizure. I'm going to have a terrible headache today". I have temporal lobe epilepsy but do not lose consciousness.

 
Old 05-03-2005, 01:45 PM   #10
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hot day HB User
Talking Re: To those with Nocturnal Seizures...

Quote:
Originally Posted by AddieNorris
Do all of you always have only Grand Mal's in your sleep? Just wondering. I have only nocturnal seizures too and experience an "aura" just before it wakes me up all the way. Lights bug me (especially night-driving, police cars, stupid strobelight stoplights)and so do certain sounds (like the racket a MRI machine makes when you're in there). The worst part is the absolute terror that hits you just as you realized what's going on. It's like being trapped inside your own head. Mine always seem centered around my periods. They are mostly controlled by meds, but every now and then (2yrs or so) one or two will slip through. You have no IDEA how WONDERFUL it is to find other people who only have them in their sleep!!! Everyone (even some within the epilepsy "community") has treated me as if I was crazy and there were no such thing as only having nocturnal seizures. Glad to know there's some other guys out there! Thanks.
Addie
Hi
I only have nocturnal seizures, my neurologist thought i wasnt being quite truthful with him (so medication wasnt working etc.) but then i recently moved to a new area and got a new consultant. when he read my notes and heard my description, (just like yours) he was delighted-he did his 'big thing' at med school on nocturnal epilepsy, and i finally had some-one who believed me. Now my meds are sorted and for the first time in my life i've been fit free for 2 months-i know it doesnt sound much but to me its huge.

 
Old 05-04-2005, 06:51 PM   #11
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Re: To those with Nocturnal Seizures...

I have bitten my tounge with every fit,Your right it does suck.Had 5 gran mals in one day.Took me almost a month to be able to talk again properly.

 
Old 05-21-2005, 09:00 PM   #12
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Re: To those with Nocturnal Seizures...

Hi,

I know what you mean, it is nice to speak with people who have the same causes as you. My fits are the same, i only have them while i am sleeping and they only way i can really tell is if in the morning my muscles feel like i have run a marathon (i think it is because i tense up when i have my fits) and also if my boyfriend starts complaining that i beat him up!!

It is really strange because all of the normal triggers don't really affect me - lights, noise all of that i am fine with. The only real trigger i have is stress and that is probably the most annoying thing because as much as you try you can never really aviod stress - it just happens.

Thanks
Emily

 
Old 06-16-2005, 03:36 PM   #13
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Re: To those with Nocturnal Seizures...

I sieze in my sleep as well. Gran mals as I wake up, jaw locks open, eyes bugging out of my head...totally paralyzed thinking " God just wake up already and get this over with!" This happens when I'm awake too, the only good thing about the sleep ones are that I don't feel myself gasping for air and passing out. Being totally conscience during these is horrible!

 
Old 06-28-2005, 12:33 PM   #14
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Re: To those with Nocturnal Seizures...

Hi, I am 53 and a male, just started having nocturnal seizures. All tests were negative. My neuro thinks its from pain medication and or nutra sweet and caffeine. The last one was early morning and I had 4 in a row. I don't get any symptoms prior to it happenning. I lost short term memory after that last set. This is so weird to me because I'm scared to death. Does anyone else have sensitivity to smells afterwards? It took 3 weeks for my tongue to heal and my back is all out of wack. Frank

 
Old 06-28-2005, 03:33 PM   #15
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Re: To those with Nocturnal Seizures...

JDGirl, I wouldn't expect you to be aware of any of that until after it was over, and then you may have to ask someone what happened. People generally are not conscious during grand mals or other generalized seizure activity. If you are awareof these events as they happen, I would encourage you to see your Medical doc for a thorough checkup. I am not joking since several things can cause seizure activity if that was, or events similar to what you describe. Some definitely warrant a docs attention. What does your Epileptologist say these events are? Phoebe

 
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