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cant take anymore


CagedBird

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I think I've been having seizures in my sleep. It started like maybe a month or couple weeks ago. I cant remember. I was trying to fall asleep and I remember having a dream but it was like I was in and out of consciousness. I just remember feeling like someone was pushing me into my bed and I was pulling my pillow to keep from falling. This happened again but once again I thought maybe it was just a nightmare or something. Thanksgiving morning it happened again but this time I knew it was a seizure. It felt like someone was pushing my head into the pillow. Luckily I had drank a lot of water so I woke myself up about 4:30 or 5am. My dad asked me if I was okay because he said I had been banging on the wall about a hour ago. I told him I was okay. It was his birthday so I didn't want to worry him. I later discovered I'd bitten my tongue. I was probably banging on the wall for someone to help me because I was trying to wake myself up. These type of seizures have never happened to me before. I don't feel nauseous or dizzy and I never feel like Im having one in the daytime. It is only in my sleep when this has been happening.

 

I almost had a seizure last Monday when I went to get my suprascalpular injection. Ever since starting back on the baclofen I have been super sleepy all the time. The day I went to get my injection, I'd already fallen asleep twice on the bus and in the waiting room so I probably shouldn't have got pre-medicated. but i tried it anyway. The nurse gave me a shot of benedryl in my arm to "relax me" then left me in the room by myself. I fell asleep but when I opened my eyes to see the nurse had returned I almost had the seizure. I had to snap myself out of the trance, walk down the hall, get on the bed, roll over, and take off my shirt so they could reach my shoulder. Of course I wasnt sleepy anymore. If anything I was more scared a seizure would come. Next time Im just going to get the injection straight. I had to sleep the entire rest of the day and I still felt in a daze the following day.

 

I just cant take this. Im tired all the time. Im scared to fall asleep. My doctor hasen't even set up OT because my old doctors have not transferred my medical records and I only have 2 more weeks with bioness. I did catch up on the time I skipped and now I am up to 2 90 minute sessions a day. Sometimes I see more movement in my knuckles and my thumb is responding a lot more but I still wish the rep wouldve programmed it to open my hand. It always brings me to tears to try to pry my fingers off the hard plastic when Im done.

 

Other stuff has happened. My visit home was horrible. I cried everyday. My mom upset me and my dad upset me but I don't feel like going into detail. I've also done so much walking sometimes I don't think I can make it home. Today I almost fell trying to make it back to my neighborhood from the bus stop. The sharp pains going up my leg were too much for me to bare any weight on that left side.

 

I finally have my own place, license, bioness, I start my new job tomorrow and now I still can't be happy because I got to worry about family, not being able to walk, seizures, and wasted money and time on technology thats not going to work for me. I cant take anymore

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oh honey ----- talk to mom and dad !!! and sweety get to your nuerogolist right away.... do not wait -- do this now !!! make sure the nuerologist is aware of your bioness --- there may be a link --- for some the bioness can stimulate seizure activity.... I am a believer in the bioness and dan still has seizure before and after introduction to the bioness --- but i just want you to know there may be a link and to make an informed choice ( with your doc) ... hopefully ethyl sees the post and can help you sort through things --- hang in there honey---- nancyl

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Katrina, I just want to say prayers coming your way. I can understand how frightening and disheartening the seizures are having seen what happened with Ray. I agree, get to see a neurologist as soon as you can.

 

(((hugs))) from Sue.

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Could be one of your meds, have they changed recently? Because after Ray started having seizures, they took him off a few that could have been the cause. If you look at side effects of most neurological pills, quite a few list seizures as one possibility.

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Katrina,

I feel so bad.

Please do make up with your Mom and Dad. You do not need that heavy load.

Tiredness all the time is bad. Those muscle relaxants can really sedate you. Have you considered a different one that might cause less sleepness.

you have spunk. Just keep going. You have amazed me with the strides that you have made.

Definitely see you neurologist. You need to have those seizures checked out.

Keep working with the bioness. Research what Nancy said about the bioness and seizures. Then you can discuss this with the neurologist.

I will pray for you.

Ruth

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Katrina :

 

please get it checked by neurologist. I strongly feel you need to start working on your acceptance. As I have told you before don't make yourself happy or unhappy based on whether your left hand works or not, you are so much more than your left hand, please realise happiness is a choice & state of mind. you have accomplished so much even with your disability, so be proud of yourself.

 

Asha

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Katrina, I don't know how many baclofen you take a day... maybe 3? Maybe it would be easier to start them slower....like if you were taking none, then 1 a week the first 2 weeks, then 2 a day for 2 weeks.

 

You may be over-walking. Nothing good will come from driving yourself into the ground. Use the bus and reject the idea to walk instead, or you will be too exhausted to do well at your job.

 

You know how bad it hurts everytime you take off the bioness, that's what it would feel like everytime it opened your fingers, because you are not ready to do that yet. It would do know good to strip your muscles and tendons away from the bones, as long as they are that tight.

 

I'm going to play the devil's advocate here, and disagree with everyone. I have no way of knowing if your family is supportive or not... but perhaps the fact that he heard you thrashing against the wall and didn't bother to check might be a clue.

 

Everyone has family troubles, but the difference is, if there are ever times when they make you feel better. Some people have no idea what it's like to have a family that is detrimental to your own well-being. I had to let my mom go, in order to not have a heart attack myself, as she is a very cruel woman. I don't know about your family, whether they are cruel or you are over sensitive. Only you know if they do you more harm than good. If it is harm, stay light touch with them, and don't GO THERE and fall back into the pattern of hardship that you have already grown up in. If that is the way it is.... I really don't know. But I do know, that sometimes family is not the best thing.

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All I can add from my own experiences are just don't give up, in or out and it will all work out for your good!! Look at what you have already overcome in your life!! The big battle has been won by YOU!! No more up hill it's all down hill now, no more climbing so the course is clear don't add any obstacles in your path!!

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Katrina, Speaking for myself, I can say that nothing worth having comes easily. And I also understand that you must be feeling like, "Enough trial and tribulation, already! I've been thru enough! And, you would be right. But, I think that you owe it to yourself ( and your hand) to try and find out what the problem is, and if it can be fixed. So, my vote is that you should see a neurologist first, before deciding to quit. In the meantime, keep on keepin' on! Becky

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