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        New Message Board Archives >> Jul-Sep 2003 >> what is Legally Diagnosed with clusters?
        
(Message started by: surfshi on Sep 14^th, 2003, 12:05am)

Title: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 12:05am

I was reading the archives and ran across this, what is "Legally diagnosed" with clusters. is their a legal form or something we fillout.... never heard of it. Surf...

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 2:24am

LOL...Never heard of that. Must just mean that a doc has official said "By George...I think you've got CH"

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 2:24am

I seen you in chat. Was you having as much trouble as I was ?

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 2:30am

I was having a terriable time at it. don't know why the name comes up twice as logged in? I thought it was something I was doin wrong which wouldnt be unusual for me in navigating. I suspect that I will soon figure it out maybe in a couple of months thats the routine anyway with the new stuff,

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 2:33am

was reading the archives again. So from experience is CH a disability as far as disability at ssa is concerned or are they still uninformed. heard of any cases off the top?

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 2:34am

lol...i didn't see anything coming up twice. I was looking for my posts to be at the bottom like most other chatrooms. DUUUU :-[ It's back asswards ! I think I got it now :-[

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 2:36am

Unsolved Equations>> did you get the E mail I sent You? Retrieved your IM. was about to retire to the shower and then sleep I hope.

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 2:38am

No. I seen that you said you e-mailed me but I didn't recieve it. Did you get my e-mail address right ? Or did I give you the correct addy ?
Its e-mailme@insightbb.com

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 2:40am

I'll post it here for all.OK its late but her it goes. now were did I put It...must have been the celexa

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 2:42am

lol...cool....post it

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 2:42am

I shall attempt to retrieve it ?

Title: Re: what is Legally Diagnosed with clusters?
Post by ClusterChuck on Sep 14^th, 2003, 2:47am

Seeing the thread is going this way, surfshi, did you get the email I sent YOU?

Chuck

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 3:09am

Hello UE, thanks for responding, The QS I had is this. I went to the University for a procedure that I had had several years back their for a nerve block.Excuse me for not knowing the type as I did not keep that good of records anwaytill now that is, had to learn the hard way as at the time I thought I was the only one with these . I now Know different. Anyway the last block I had made my head go numb on the right side and at the base of the skull. This was expected as the Dr. said it would be simuliar to the numbness you get from the dentist after the nivicaine shot.The numbness lasted about 5 hours. Ihoped that this was going to ward off the demon, but this round had no avail. Anyway...I had asked for the block that I recieved 3 years prior, I tried to recall if my head went numb 3 years ago and I don't recall it did... What block I recieved three years agodid break up the cycle so theirfore I went for it again.The odd thing was the Dr. said that so and so did not keep very good record ofwhat procedure he used for a block,ya right,after I got thinkin about it.The last one had no effect this round.Would you have any insight as to the block that was administered B4. I remember that I drove home right after the procedure 100 miles, and even recall the attack I had on the way home in fact I could tell you exactly were aaai was at the time also....Anyway the B4 one seemed to work so thats the one I sought out, but I doubt thats the one that was administered to me. The "Backup Doc got it ordered for me that day when I drove up Oh ya and he was also the one I had backin out of the room as fast as he could...For real.Thanks for your time and input. Like I said, I guess I had to learn the hard way,now I'm here. My life would have been alot better if it had been sooner. Surf

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 3:12am

only recieved notice that a post had been made to this subject?

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 3:17am

The nerve block you had was definately not a Spenopaletine block. The Facet block requires you to be sedated and it's performed in an operating room like setting with X-Ray machines for guiding the needles, so I doubt it was that. The Occipital Nerve Blocks are also needles to the back of the neck at the bottom of the skull. It involves injected a steriod and an anestesia (sp) like medicine which may cause numbness. In fact, I was told it is like what the dentist give you to numb your mouth. I surely couldn't tell you for sure...but by what you have described...I would bet that it was the Occipital Nerve Block. These blocks are usually temporary and OC Blocks in the future may be less effective. Your body has a way of 'getting around' or getting used to the blocks.

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 3:27am

Checked out the islands last night it's going to be a tough decision...Hmmm... Tomorrow we vote remember..tehehe

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 3:33am

OK the OC is the one they gave me last time as I now recall, so they sid. I did ask for the one that had the steroids in it so that must be the one...Yup...But B4 I had no recall as to the head goin numb although the procedure was identical to that as the OC block. Surf

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 3:42am

In the past what seems to work is if I can Break the cycle. not abort with IM but break it up with steroids usually will get me on the path to getting the demon back to were he belongs...But man I hate the prednisone now...yup I do, really hate it...the IM is great for aborting...I think of it as success begins when the body resets, thats what my body must do B4 the clusters will leave.RESET...Surf

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 3:44am

Thanks Unsolved Equations for the clarifications and your input.. Surf

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 3:45am

Ever tried a DHE treatment ? It MAY break up your cycle. If you've never had it, it's definately worth a try. It won't break mine, but damn I feel good while on it !

PS > Crashing out 4 the ~~night~~ morning...catch ya ~~tomorrow~~ later today

Title: Re: what is Legally Diagnosed with clusters?
Post by surfshi on Sep 14^th, 2003, 3:44pm

hay UE what is DHE. Surf ..... or anyone ...

Title: Re: what is Legally Diagnosed with clusters?
Post by BobG on Sep 14^th, 2003, 4:40pm

DHE = Dihydroergotamine

http://www.clusterheadaches.org/library/medications/dihydroergotamine.htm

Lots of information under the buttons on the left and at the OUCH site.

Title: Re: what is Legally Diagnosed with clusters?
Post by UnsolvedEquation on Sep 14^th, 2003, 8:23pm

DHE...Don't know much about it 'technically'....but I do know it's a vasoconstrictor and works great for me. It has to be given at the hosptial so they can keep track of your BP. I also require something before hand so I don't puke my head off. It is given every 8 hours via IV and it keeps teh beast away. I feel great while on it and it has worked everytime. It is given in hopes to break the cycle of HA's but I get it just for a break from the HA's since mine always return. That's all the info I can give. If you need more, better do a search on it "DHE 45". Good luck

Title: Re: what is Legally Diagnosed with clusters?
Post by forgetfulnot on Sep 14^th, 2003, 8:28pm

Dead.

Lee