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AllShookUp

AllShookUp

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Hi all, New to this site and new again to epilepsy.

I was diagnosed with epilepsy at age of 5 yet 'outgrew' seizures by age 12 and stopped medication at 14.

Since 2002 I have been experiencing periods of fatigue, I'd cycle in and out of the fatigue with the length of time increasing with each bout of fatigue. I now exist in a cloud of fatigue with periods of worse fatigue. I have also begun to have neurological problems in balance & weakness (during worse fatigue) and constant muscle twitches.

These neurological problems are what got me to convince my pcp to send me to a neurologist. Now after years of searching for answers, the neurologist has come up with something that finally makes sense! He believes I've been having seizures again and just not been aware.

This seems so weird to me as I was aware of my seizures as a child. At least I thought I was until I discussed mom who told me I did indeed have absence seizures while watching TV. I didn't know!

I guess my question is, has anyone else experienced this... I went for almost a decade with only fatigue as a symptom... I am so excited to maybe start feeling better...
 
Hi ASU, welcome to CWE!

I don't have the same seizure history as you, but I hope you get some answers about what's going on soon. Does the neuro think that your seizures are happening at night, or throughout the day as well? Will they do an EEG and/or sleep study?

Best,
Nakamova
 
Thank You for the welcome Nakamova!

The neurologist wasn't sure about when the seizures occur. He did order a sleep deprived EEG (Ugh) a MRI and some blood work.

However in conversation with others, it has become apparent that they have a hard time getting my attention sometimes. I'm not sure about that being an absence seizure as I am aware I have hyper-focused and it is difficult to drag my attention away sometimes. ADD runs in my family and I do have a hard time focussing some days and find that when something captures my interest I can tend to over do it, hyper-focusing, excluding a lot of other sensory input!

Sleep is another story as I never seem to be refreshed. I have sleep apnea and use a cpap machine. So quite possible at night. I just went through a sleep study in December for sleep disturbances and they hooked me up to wires etc. but the study came back normal.
 
You have my sympathies about the sleep-deprived EEG -- I just did one yesterday after staying up for 24 hours. No fun. Binge-watching TV can only take you so far...

There seems to be a strong correlation between sleep apnea and seizures for some people, so there's a good chance that that's part of the equation for you. You can read about sleep apnea and seizures in the CWE threads found at the link below:
http://www.coping-with-epilepsy.com/forums/tags/sleep apnea.html
 
A good bit of times unless there is someone there to see me have the seizure I don't know that I've had it. I have been sitting on the couch and my husband will asking me how I'm feeling and I'll tell him I'm ok, why? That's when he tells me I had a seizure and I had no idea that I did.

A lot of times after a seizure I'll be very tired too. This could even go on into the next day too.

Nice to meet you!
 
Thank you valeriedl. Good to know that it's is quite possible to be unaware!
 
The first time I ever had one, I would have had no idea what had happened if my boyfriend had not been there.
He insisted on getting me to go to the doctor and I argued with him the whole time. I knew something was not right, I felt tired and achy but I had studied most of the night and figured I might be coming down with the flu or something. My boyfriend kept trying to tell me I had had a seizure in the night and I wouldn't believe him.
 
AlohaBird, It seems so strange to think of having seizures and not knowing. I've been seeing a lot posted about nocturnal seizures. Some people know and some never do. I never really feel achy just tired (not sleepy) all the time.
 
Now that I've had them for 30 years, I pretty much do know when one has happened. It's a particular kind of tiredness. You just know.
I very much hope that you aren't still having them in 30 years.
 
So the tests have come back. MRI fine and the EEG shows eliptiform activity from the left temporal lobe when hyperventilating and sleeping.

My neurologist doesn't have a diagnosis though. Because I don't have full out seizures, the abnormal activity in the brain could also be from other causes like migraines. I don't have what I would characterize as migraine headaches but I can have headaches and usually quite a few in a row (cluster?)

The doctor has prescribed topiramate (which treats both seizure and migraines) and I'm very hopeful this will give me my life back. :)
 
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