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Vivid Nightmares with physical pain - Onfi and Carbatrol - Some understanding of my story.

Tue, 12/02/2014 - 19:08

I suffer from Primary generalized seizures due to a car accident back in 2010 just pasted my 4th year mark now from the time of my accident, it wasn't a major one though the car might say otherwise, I didn't suffer bleeding or any external injury but just two weeks after I started having grand maul seizures at the age of 27. So I can't say I've been suffering threw it as much as some of you, but I do suffer from partial and generalized seizures with a brain that looks like a chrismastree on a EEG scan.

As these years have gone by my seizures increased I went on every medication you've probably ever tried. After my last major seizure that caused me to bust my head open and suffer a supdermal hematoma and 5 lovely staples into my head and a dislocation on my shoulder likely my 70-80th (had 4 more sense steptember)  I've been better or I wish I could say that. I could go on into detail about my problems but I just wanted to put you into a breif understanding of my life and situation. I've on some meds had vivid dreams sometimes nightmares, but sense my change and addition of Onfi things started to get a bit worse, at first I was going onto a does of 20 MG's a day doesn't seem like much I'm sure compared to the 600MG's I take of Carbatrol. The effect it has had on me has caused me to have the most vivid dreams of my life, I'm a person who doesn't watch horror movies but has alot of knowledge of just about everything who studies for hours every day about everything you could think of, so when my brain thinks about something it's got alot of information to pull from. When I first started off my dreams where so voilent I called my doctor because they got to the point of me beating people to death with no control over my thoughts or actions and took place in places I actully live and go to. So they pulled my does down imiditaly to only 5MG's a day yet even after I still have dreams that disturb me to the point of waking up because I feel physical pain dreams so detailed you'd think I was describing a big budget movie to you. Dreams striking my deepest fears. I'm not sure how to cope with it, I've explained to my doctor my reactions but without a second drug I know I'll start having seizures more often, at it's peak I was having them atleast once a week, I lose total control of my own body and violently flash about competely catonic yet contracting every muscle in my body so needless to say the risk of injury to myself is very high and nearly always results in the dislocation of my shoulder, scratches/cuts you name it. So I'm really in a rock and a hard place, I know physically dreams aren't supposed to hurt you, and I checked myself but I know that these dreams cause me that is my brain to completely lose itself in a reality created inside my own mind and it scares me. I don't know if I'm asking for advice or just wanting to get this off my chest to some people who might understand better what I'm going threw, after last night I had to be put under to have my shoulder placed back in because the tendenon damage is so extreme it's causing me to on a near bi-weekly basis to come out. The seizures have cost me most of the functional use of my right arm due to the extreme damage it's done but now with the dreams occouring more and more I'm not even sure what is worse, not knowing when your asleep or... How do some of you cope with it? With this? I've been lucky as of late and my seizures atleast the major ones the grand mauls have been controled. Soon I'll be getting an VNS but I know even with that I'll still be on the meds and I know I'll still have seizures. I've always been very sensitive to medications last night I found I was in the 3% of patients who react with muscle spaziums to a sedation drug so by the time I woke up nearly an hour later thankfully still breathing (had scares like that too being forced to stay awake after my O2 levels dropped). I've got a birthday coming up in little over a month and I'm thankful I'm still here and alive, and while my dreams are never a refleaction of the reality I live in or the fears I have in it it's become a point in my life that makes me wonder what's worse, my nightmares or the danagers of everyday life and risk. How do you all cope? Because if even my dreams cause me pain as real as what I feel here where is the stopping point? Where is the normalaity? Thank you to whoever takes the time to read all this, I'm sure and aware there are those who have it worse off then myself so I apologize for that.

Comments

The question to ask anybody

Submitted by Anonymous on Wed, 2014-12-03 - 10:58
The question to ask anybody is What is normal? Follow that with What do you consider controlled seizures?An accident can cause epilepsy in many people. While I wasn't in a car accident my epilepsy was caused by scared brain tissue. The scar tissue was from a hemmorage to the brain. The hemmorgae was from a blow to the head, The blow to the head was because the rung on the ladder I was on came out. I hit the top rail on the bunk bed spining my head which hit the bottom rail with my mouth. I was taken to the docs office. I was fixed up 32 stickes in the inside of my mouth and 4 teeth were knocked out. Hey back then they looked at the things that had to be taken care of and there was no MRI. So I do know that a blow to the head can and does cause epilepsy. Each persons understanding of normal is different from the next. The same with controlling ones seizures. I have a little hair loss which can come from the medication I take. When I said that a friend asked why I don't get off the medication. I informed him I would rather not have hair then have seizures. Someone can understand that, Control of my epilepsy is not and probably never be complete control. I have a seizure every 10-14 days. Those seizures are seconds long. It takes seconds to get back to normal. I can have one while standing and talking in a group of people and they would know nothing of the seizure. So to me even tho I would love to nave no seizures what so ever I also know I may never have it. I have been blesses to not have an grand mal seizures since 1970. I havent had a convulsive seizure since then either. Focal seizures can generalize which means cover the entire brain and in those seizures a person goes into a onvulsion which looke like a grand mal. I know the seizures I have now and know if I need to back away from what I am doing.  There are dangers around everywhere. A person can walk out into the street and get hit by a car. A person can be trapped in a burning building. Just think of all the things yo uhave read about or heard in the news about a persons deathSo yes there is danger in the world.I also know a person can have dreams for some time and then they go away. I do hope this helps and you do get the assistance you need Joe

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