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        New Message Board Archives >> Oct-Dec 2003 >> Sorry about the length...my 1st post.
        
(Message started by: dkirin on Dec 4^th, 2003, 10:07pm)

Title: Sorry about the length...my 1st post.
Post by dkirin on Dec 4^th, 2003, 10:07pm

This is my first post on any board :-[ I have spent the last several days (in-be-tween bouts with the beast :( ) reading past posts on this board. :) I am so happy to have found ya'll!! I'm sorry about the length, but I wanted to give you some background. I had ch's as a child and totally blocked the memory. My sister reminded me about them in 97. In 93 I was driving (a van full of :-[ Kirby cleaners) down a mountain toward Sylva NC when I got hit with my first ch as an adult. No idea what was going on, only pain behind my left eye so bad I couldn't see, barely able to get off the road. Lasted about 45 minutes then disappeared. Gradually increased in frequency to 8-10 per day until I found a neuro who knew about ch in 97. Finding O2 & trex for abortives I could finally stop the beast, I thought I had it made. Then experienced my first remission from the beast using propananol and topamax ;;D However >:( the beast wasn't finished with me. I had 2 more remissions of about 6-8 months then wham :'( May of 2002 I got hit with a 10 in front of my clients and coworkers at Craggy Gardens on the Blue Ridge Parkway. The biggest change was that the headache didn't go away. It stayed no better than a 4 until I got a referal to MHNI in December 02. Stopped the ch the day they put me in the hospital with an IV drip of steroids. Dx a secondary classic migraine and had RFA on the left. Totally pain free for 6 weeks, then bam headache on the other side. Another secondary migraine variant on the right that crossed over and reactivated the one on the left. RFA on the right but the pain only went to a 2. CH's restarted in June 03 and nothing has stopped it. O2 only works on about 8 of 10 ch's and they worked up to 1 every 1 1/2 hours like clockwork. Shadow's and both migraine variants that have been accompanying ch have made my life hell ever since then. Doc's have thrown their hands up and said they don't no what else to try. Presently taking verapamil qid doxopin 2 hours before bed, 18 ml of melatonin at bedtime, indomethacin, baclofen for background pain, along with O2 prn. I have been working as a substance abuse counsellor in a 42 day inpatient setting for 2+ years and a detox for 3 years previous to that, for the local area mental health program. I got hit 8-20-03 on the way to a 12 step meeting with clients and coworkers present :-[ and nowhere for me to go use O2. Freaked them all out, sent me home until Docs release me and they won't. I have had to give in to the beast and apply for disability retirement and SS disability. Many thanks for what I read in the archives, I feel like I already know some of you ;)
Bill

Title: Re: Sorry about the length...my 1st post.
Post by cootie on Dec 4^th, 2003, 11:05pm

Hi Bill........you'll find alot of companionship here....and similar stories....hopen you can find sum mix that works for you and become PF soon or at least get better faster relief. Pam a round about supporter

Title: Re: Sorry about the length...my 1st post.
Post by hootchdom on Dec 5^th, 2003, 4:05am

Welcome,

I'm sure you will find this site to be a god send. Use it to its fullest. Its got great wealth of info if you take the time and read past posts (I've gone to perscribing my own meds) because my docs have also thrown up their hands.

When you feel like you need to vent. VENT !!!! Some one will read it and some will respond. Some one always seems to be around 24/7 to support and has been there and done that. So take advantage of it.

I'm at my witts end also, you might want to check out the alternative thearpy. It has caught my interest and I'm very seriously considering it.

Pain Free Days
Hootchdom

Title: Re: Sorry about the length...my 1st post.
Post by thomas on Dec 5^th, 2003, 8:22am

Welcome Bill. I hope you can find some relief soon. :)

Title: Re: Sorry about the length...my 1st post.
Post by dkirin on Dec 5^th, 2003, 6:17pm

Thanks for the support 8) I appreciate you taking the time to read such a long post :) I have no plans to make a habit of writing at such length, but I felt I should give the appropriate background the first time ;) here's hoping for many PFDAN for all Clusterheads.
Bill

Title: Re: Sorry about the length...my 1st post.
Post by jonny on Dec 5^th, 2003, 6:29pm

Welcome home, bill

And welcome to the family, becareful of some of the others they will yell at you and call you names.

Me?, im your pal ;;D

..................................jonny

Title: Re: Sorry about the length...my 1st post.
Post by dkirin on Dec 5^th, 2003, 6:41pm

Thanks Jonny 8) As for being yelled at...I've got pretty thick skin.
Bill

Title: Re: Sorry about the length...my 1st post.
Post by 12gagueblast on Dec 6^th, 2003, 1:24am

couldnt find a place to use 02? ive used it in front of others may times if they dont like it they can F themselves. Hope all goes better for you and you can get some PF time. :)

Title: Re: Sorry about the length...my 1st post.
Post by dkirin on Dec 6^th, 2003, 12:12pm

We were traveling down the interstate hwy at the time, raining like crazy. Nowhere to go and nothing I could do until we could get off the hwy.
Bill

Title: Re: Sorry about the length...my 1st post.
Post by fubar on Dec 6^th, 2003, 1:22pm

on 12/05/03 at 18:29:43, jonny wrote:

Welcome home, bill

And welcome to the family, becareful of some of the others they will yell at you and call you names.

Me?, im your pal ;;D

..................................jonny

That's Jonny, the voice of reason. Actually, in a previous life I think he was a nun. ;;D

Just don't ever say the "M" word.

Welcome aboard the the Good Ship Heads-that-Pop.

-fubar

Title: Re: Sorry about the length...my 1st post.
Post by ClusterChuck on Dec 6^th, 2003, 2:13pm

Welcome abord, Bill. Sorry you have to be here.

on 12/06/03 at 12:12:31, dkirin wrote:

We were traveling down the interstate hwy at the time, raining like crazy. Nowhere to go and nothing I could do until we could get off the hwy.
Bill

on 12/06/03 at 01:24:07, 12gagueblast wrote:

couldnt find a place to use 02? ive used it in front of others may times if they dont like it they can F themselves. Hope all goes better for you and you can get some PF time. :)

I agree with 12guague, F'em, if they don't like it! There have been MANY times I have the O2 on while driving down the street! I keep my tank right next to me. It is better to be suckin on the O2, then trying to drive with one of these, with no chance of stopping it sooner!

Chuck

Title: Re: Sorry about the length...my 1st post.
Post by jonny on Dec 6^th, 2003, 3:02pm

on 12/06/03 at 13:22:24, fubar wrote:

Just don't ever say the "M" word.

Just what do you mean "M" word?....I do my share for that cause....just click the top link at the bottom of my posts ;;D

...............................jonny
[smiley=finger.gif]

Title: Re: Sorry about the length...my 1st post.
Post by fubar on Dec 6^th, 2003, 3:16pm

You know there really is a LMAO.com? LMAO

Title: Re: Sorry about the length...my 1st post.
Post by Patrick_A on Dec 6^th, 2003, 7:07pm

Yea, when Jonny drives down the road, all of the sheep back up to the fences!
Watch out for Jonny! ;;D

Patrick