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no peace when im awake. no peace when im sleep



Telling me to give up my license is like telling me to quit my job. Even when I have the seizures I still go to work and feel fine. I could definitely get hurt at work but I still have a job to do because ssdi just doesnt pay the bills. Its the same story with driving. I never felt dizzy while driving. I did have the grand mal pass out seizure that one time when I got to the store but this was not while I was driving this was as soon as I walked into a store I'd never been to before. I didn't even feel slightly dizzy while driving. I guess what Im saying is these seizures only happen when Im laying in bed either while Im sleeping or after I wake up. When Im keeping my mind occupied doing things like working and driving I dont have time to think about seizures so it just seems like the anxiety and thinking its going to happen is what triggers it which has only happened these 2 times when I was laying in bed. Not saying it wont happen while working or driving. just saying if i get rid of my car, i wont have reliable transportation, and will be at home more laying in the same spot and doing the same thing that triggered the seizure before.


Also I told my neuro about what happened in my sleep at Thanksgiving and the night before my appointment with him in February and he said it was just parasomnia. The day after I wrote my last entry I had a bad episode of parasomnia. I woke up at 4:30 a.m. and couldnt fall back asleep. By the time I got sleepy again, it was almost time for me to go to work so I tried to take a quick nap but my mind was stuck in the half sleep half awake stage so I had nightmare after nightmare. My body kept jerking me awake. I heard screaming. I was screaming. I heard my dad's laughter repetitively in my ear. I got up got ready for work, drove to work, and as I was backing into my parking spot the car just kept going in reverse even though I wasnt pressing the gas. I was laying on my side so I could feel someone pulling me back in my sleep. It felt like someone was digging their finger in the middle of my head. I had to go to a mental hospital. I as crying and screaming but nothing would stop the nightmares and they felt so real. I don't know if the 2 seizures I thought I had while I was sleep were real or if it was just sleep paralysis. Basically Im just saying its daily activities like driving and working that keep my brain occupied and take my mind off the anxiety. Its stagnant activities like laying in bed that seems to trigger the anxiety.


My neuro told me to see a psychotherapist for the night terrors, nightmares, and sleep paralysis which he called parasomnia. He did suggest that we checked my keppra levels since it has not been changed since my stroke 12 years ago but when I called my doctor the other day they said my level was normal. I do NOT want to change meds. My neuro suggested I do that when he thought the keppra was making my white blood cell count low 2 years ago. He witched me to lamictil and I had a seizure twice (once riding in the car with my mom and the 2nd time riding in the car with my dad to the neurologist appointment). The first time I was talking to my mom about me having a seizure and I think those memories triggered it. The 2nd time I think it was just the anxiety and recent memory of the seizure with my mom that triggered it. But these seizures were different. I just felt like I was dreaming. I didnt pass out and I could talk but it was this annoying out of body feeling and dizziness that lasted a couple minutes. Needless to say my neuro put me back on my keppra.


Sorry this is so long but really. I have people telling me "don't drive, don't go to work, I don't need to be living by myself." But what am I supposed to do? Dont take a shower? Don't walk around my apartment without my brace? Dont catch the bus because I might fall into the road standing at the bus stop? Im sorry it is just frustrating. Im trying not to get depressed but with seizures life just isnt worth living. I had all these brain surgeries and a stroke to fix the avm and stop the seizures. I did my best to get on with live. So why is it bothering me now? Am I just supposed to live under a rock and try not to fall asleep for the rest of my life until the doctors can figure out whats wrong with my brain this time?


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Well Katrina,


I read what you wrote here and as a fellow survivor of 9 years now I don't know what to say. The doctor suggested you check your Keppra levels since it had not been changed in 12 years and you called the doctor they said your levels were normal. Is it suppose to last 12 years that's a long, long time???


I'm no doctor but somewhere along the medical trail something is not right from what I'm hearing you say in this blog. Seems to me checking that Keppra level is the one thing to do to be sure that is not the cause of what you are having now! It's just not normal to me!


And you get no peace awake or sleep?? That don't sound like nothing is wrong somewhere.

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Katrina :


I hope you get your answer soon to all your troubles. what I have found keeping my thoughts on positive track has reduced my anxiety. & that's law of attraction. positivity attracts positive things in life. read the secret book.



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Katrina: you are trying to justify your response to what is happening to you. I really feel you need to deal with this head on.


You are a bright and gifted young woman. If you honestly feel this is anxiety related, why haven't you called a psychotherapist and made an appointment? Obviously this is not going to go away on its own. Medically you checked out. And your Neuro is on top of the problems. It is time to take the next step. Debbie

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Debbie just told you what I was trying to say to you. You said your neuro doctor told you to see a psychotherapist but you didn't yet. I hope you can use your dad's insurance or somehow, someway see that kind of doctor and get a handle on what's happening with you. Don't put this off any longer you need help!

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Ray's Keppra levels were fine but the medicine made him crazy. It could be as simple as that, not you but a side effect. They switched him and he was instantly "cured". A psych expert is the one to ask.

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Katrina: You are dealing with a lot. To me, you are a prime example of staying in the game after stroke. Hang in there! Henry

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