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        Cluster Headache Help and Support >> Cluster Headache Specific >> Ive been lost-
        
(Message started by: rapunzel on Apr 26^th, 2006, 8:10am)

Title: Ive been lost-
Post by rapunzel on Apr 26^th, 2006, 8:10am

and not around the board, but here I am again.

I have experienced some very weird things, and am currently trying to be normal again.
Since I posted that the CT scan showed I had a stroke, I apparently had another one. WHy do things only once, eh? I had what could have been a kip10 that included the top of my head, I lost sight in my left eye but I didnt get the typical cluster eyepain, my left arm went numb and the left side of my face itched so badly, I could envision scratching it off. My neck went into some sort of constricting spasm. All of this last for about an hour. The neuro said that was most likely a second stroke. I havent had that many weird things occur but stuff that has/is happening is rather aggrivating.
My left side apparently is expiring. :P I fell down the stairs and broke my left leg- the tibia bone. The way I fell caused MAJOR tissue damage and I almost took out my hip also. The leg is healing very well, however it is at the "ohmygod it ITCHES so bad-I could scratch it off" stage. I discovered the hard way that it hurts much more to fall as an adult. Kids bounce, adults do not.

SInce the second stroke, perhaps the first- I dont remember because I could have been experiencing the left sided weakness after the first one, before I knew about it. ..anyhow, my left side is "slower" than my right. It makes typing rather interesting and I have to backspace and correct many many mistakes all the time now and I used to be able to type really fast and accurately. I now have these weird 'blank out' stages- my husband says 'you left'. They dont last long, and I couldnt tell you what it is or where I go. lol. Just stare out in space for a few seconds. It happens randomly- the most apparent time was when I was reaching for the ranch dressing at the supermarket.

I forget things very badly. I couldnt remember my managers name, had to ask my husband. I couldnt remember my dads phone number. I couldnt recall my best friends name. etcetc. I write everything down now. *sigh*
I had an EEG, and my neuro said "it is pretty normal". Which is great news, I suppose. Probably not as good as 'really normal' but not as bad as 'pretty abnormal'. Then he quadrupled my Elavil dose and told me to come back in a month.
So, my headaches have changed. The cluster cycle that I was in that was waking me up in the night still happens, but not as often. Maybe two nights out of a week now. They arent as bad as they were. However, I experience pretty heavy shadows during the day, and also full blown clusters in the evening- not every evening but just occasional. The pain is different now- it includes the very top of my head, like an axe going straight down the middle, still my left temple, left eye, left side of my nose, etc...however- not every time, but many- my throat/neck feels like someone is pressing their fingers into it- on either side of my throat, carotid artery area(?) I really have to concentrate so I dont panic that I am choking, because I am not choking-but it hurts as if someone was trying to choke me. Airway is not constricted at all, but I have to fight the panic anyhow.
Yesterday, I was minding my own business-lol, arent we always?- reading a book and got my @$$ kicked. Big bad kip-10. I was home alone. I scrawled it on a piece of paper-my head and throat. That was for my husband in case he came home and I was passed out/dead/ etc. Its sad but we have made the cluster be the lesser of two evils now. He always asks me when I am being attacked, "Your throat too, or just a cluster?" Just a cluster. :o I never thought I could experience anything worse. But cluster plus throat is worse for me. It let up and then came back fullblown within minutes. It was a fullblown-rolling on the floor sobbing kind of bad, My husband came home in the middle of it. It lasted fortyfive minutes. I just told my dad on the phone about it, and he said "You probably strained your eyes when you were reading".
*sigh* yep, thats it. Eye strain. :-[ Answers like that are why we sufferers feel alone until we find this board.

Title: Re: Ive been lost-
Post by alchemy on Apr 26^th, 2006, 8:18am

wow! talk about having your hands full. I hope everything works out and that you get some pf time soon.
jim

Title: Re: Ive been lost-
Post by pattik on Apr 26^th, 2006, 8:32am

OMG, what an ordeal for you. I'm glad you can still use your keyboard, and get some support here. Recovery from stroke can seem to take forever, but people can and do come back from it. I'm wishing you a very speedy recovery, and please stick around if you can. Big vibes to you. Pat

Title: Re: Ive been lost-
Post by marlinsfan on Apr 26^th, 2006, 8:54am

You're on your way back, Rapunzel. Hang in there and be strong.

Title: Re: Ive been lost-
Post by Charlotte on Apr 26^th, 2006, 8:23pm

Whew, OMG. I'm speechless. I will be thinking of you.

Charlotte

Title: Re: Ive been lost-
Post by rapunzel on Apr 28^th, 2006, 8:51pm

Thanks all. Still getting hit, and getting very discouraged today. I made a doctors appt for next week (Thursday) with my gp- I want to get a referral for someone to do a neurovascular workup. I need to find out what the throat thing is- I cant stand it. It is going to make me insane. I tried researching online but I cant find anything that it could be. Its not a muscle spasm. It happens with the clusters and is sometimes accompanied with some kind of heartbeat swooshing in my ears.
hopefully they can make it go away.

Title: Re: Ive been lost-
Post by Karla on Apr 28^th, 2006, 9:42pm

So sorry you are going through this. I will be praying for you.

Title: Re: Ive been lost-
Post by superhawk2300 on Apr 29^th, 2006, 11:37am

I am thinking good thoughts for you - you are not alone.

Jamey