I think i am having nocturnal seizures help/advice please!

Nakamova

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That's great! And not uncommon with epilepsy -- most people with epilepsy have normal MRIs.
 
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so what does dr. do if after egg he sees nothing,but I know I am still having nocturnal seizures... I just want to find out what is going on at nights. read above if forgot. thanks alot
 

Nakamova

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Is there any way you can videotape your nocturnal seizures? A detailed description of your symptoms (and perhaps a video) can help the doc to make the diagnosis in the absence of a positive EEG.

Many people with epilepsy will have EEGs that are normal, so in those instances neurologists make the diagnosis based on the symptoms alone. If the neuro isn't sure, he might recommend trying a small dose of anti-seizure medication to see if it helps.
 
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You seen my posts,where I said like donna about 2 or 3 times.I had like i remember waking up briefly several times and later on in the night i had another dream type sensation that i had a seizure & i could feel one of my legs went really tight and stiff and almost hanging in mid air but i could not do anything to stop it.
..So do many people have this?? I had cpl where as ssaid in my prev. posts. I think I had these dreamlike state of seeing myself, pulling my neck back and leg out stiff.I would wake up and remember seeing that in my mind?My neck was sore from pulling on kit,so I believe it did happen..But I dont know the facts.. I havent remember since 2 weeks ago,though I still wake up so stiff back and abs. So tight get up take a celebrex in middle of night
 
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I have not ever woken up feeling nausea or with headaches. Do most people with nocturnal seizures have them? thanks
 
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I dont get nausea or got headaches. Are this most common?,If have nocturnal seizures? I believe totally that i have been having though..
 
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Can I ask room? Do most people with nocturnal seizures have nausea in morning when wake up and headaches? I dont. Thanks
 

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Is there any way you can videotape your nocturnal seizures? A detailed description of your symptoms (and perhaps a video) can help the doc to make the diagnosis in the absence of a positive EEG.

Many people with epilepsy will have EEGs that are normal, so in those instances neurologists make the diagnosis based on the symptoms alone. If the neuro isn't sure, he might recommend trying a small dose of anti-seizure medication to see if it helps.
This is exactly what my neuro is doing. I had an EEG 3.5 years ago that showed nothing so I wrote it off as me having no problem. My symptoms have continued to get worse. I got a new neuro doc and she thinks it's seizures and is trying meds to see if symptoms lessen or go away.

I had a sleep study done about a year ago for insomnia. I wonder if it picked up anything? I think they would have told me if it did but maybe you have to specifically look for seizures to spot them?
 
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Can I ask room? Do most people with nocturnal seizures have nausea in morning when wake up and headaches? I dont. Thanks
 
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Hello Donna,
I was diagnosed with nocturnal seizures, only in my sleep. I have never had a seizure in an awake state.
It sounds like you may be experiencing the same things. I had dreams of seizing while seizing. I've fallen out of the bed, I've fallen into the shower and I've even woke up downstairs not knowing where I was.
For the first year every doctor I told that I was seizing in my sleep, blew me off. Even though I'd even been removed from my home still having a seizure by the paramedics.... Even the ER docs argued with me.
I had to find a primary care physician who listened to me and didn't just dismiss it because it didn't sound right to him. He then referred me to a neurological sleep specialist who specializes in Epilepsy at OSU. This doctor does overnight studies and has a whole floor dedicated to EPILEPSY. This doctor was my saving grace. I don't think I would've ever gotten a true diagnosis without him.
I wouldn't have made it that far if I hadn't have contacted a neurologist that specialized in sleep study...he had me spend the night and found that I was having small seizures every 15 minutes.
His report is another way I was able to get my primary care physician to listen.....that got me a neurologist and then a neurologist that specialized in EPILEPSY.
Not even a doctor can tell you how you feel, don't give up on trying to get them to listen.
You live in that body!
Also, pay attention and see if you notice being very sore when you awake and start going through your day and look over your, body from head to toe for bruises that you know you didn't have.
You talk about your leg...pay attention to whether or not your leg is very sore or restless. It may just be a sore hand or foot, shoulder, arm, shoulder blades, rib cage, stomach muscles anything that didn't hurt before you went to bed.
I hope this helps and don't not tell your doctor, tell them and keep telling them until they listen.
I hope this helps
 
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I am so nauseated after a bad seizure while I sleep that I can't eat for days and if I try I throw up immediately. MY doctor had to give me pills for nausea because I was losing 10 lbs in 3 days.
 
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Seen my nero. today for results from EEG etc. Graph did show nocturnal seizures in test, Mild but still there, Those nights hooked up. No way I thought I had any. Couldnt even deal with all those wires and cam etc. So put me on neurontin.. I take lots nsaids before bed for muscle tightness in mornings... Nexium for acid reflux. So never I woke up nausea from even bad seizures.. Just letting out info. Thanks and if anyone can share etc. np
 
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you know those dream like state,of seeing yourself having seizure?? People have they have.. Well I know I have had like 4 of those in last 3 months.. Told my nero. He looked at me like??? didnt . Is this posible? I swear I seen myself pulling my head back by cupping my hand under chin and oy legs out stiff.. Woke up neck sore etc..I dont remember seeing any more in last 2 months, But did wake up with face flat in pillow, out of breath..Just other night,knowing I had bad one.So If he sees mild ones on chart,Thoser I have ,I think or bad. Can those actually be Mild?? Thanks. Looking for understanding
 

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Hi roadrunner, I know this is over a month that you sent the last message, but i just wanted you to know that i have similar experiences as yourself. I have found that they often get worse when I am tired or stressed. the main scary one is the sleep paralysis with hallucinations. For me I am semi awake in my dream state and i am paralyzed, time has a strange existence in this state - i'll try to explain, i can feel time passing but I'm not quite sure how long has passed, also something will happen and then time will seem to 'loop' back on itself and i am back to a previous part of the sleep paralysis. Also during this time I can be thrown out of my body and seem to walk around the room and sense evil things in the room, and i become quite scared. It takes ages to get back into my body. Anyway, enough said - I also get auras audio and skin related ones. Cheers Anne.
 
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AnneN, ty and yes so strange how this and why.. So do you think every night,We are hasving seizures then? Little ones to bigger seizures. Or they all are mild,Just a seizure?I have woken up see lamp by bedside knock over, sleep walking to. Sore to the point of pain in muscle,back,stomach. I just take nsaids before I sleep does help for am
 
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anyone please, I have been as read my posts. Nocturnal seizures.. Now last night scared me alot.. Has anyone woke up by coughing like you passed out lack of oxygen. from seizure.. Wow i did, one time month ago was on stomach face dwn. in pillow. but this one I think was on my back..Woke up coughing and heart racing. etc Has any heard of this. thanks....
 
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anyone please, I have been as read my posts. Nocturnal seizures.. Now last night scared me alot.. Has anyone woke up by coughing like you passed out lack of oxygen. from seizure.. Wow i did, one time month ago was on stomach face dwn. in pillow. but this one I think was on my back..Woke up coughing and heart racing. etc Has any heard of this. thanks...
 
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