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Topic: Sorry about the length...my 1st post. (Read 396 times) |
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dkirin
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Sorry about the length...my 1st post.
« on: Dec 4th, 2003, 10:07pm » |
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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  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
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cootie
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Re: Sorry about the length...my 1st post.
« Reply #1 on: Dec 4th, 2003, 11:05pm » |
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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
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hootchdom
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Re: Sorry about the length...my 1st post.
« Reply #2 on: Dec 5th, 2003, 4:05am » |
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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
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thomas
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Re: Sorry about the length...my 1st post.
« Reply #3 on: Dec 5th, 2003, 8:22am » |
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Welcome Bill. I hope you can find some relief soon.
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dkirin
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Re: Sorry about the length...my 1st post.
« Reply #4 on: Dec 5th, 2003, 6:17pm » |
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Thanks for the support  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
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jonny
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Re: Sorry about the length...my 1st post.
« Reply #5 on: Dec 5th, 2003, 6:29pm » |
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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
..................................jonny
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dkirin
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Re: Sorry about the length...my 1st post.
« Reply #6 on: Dec 5th, 2003, 6:41pm » |
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Thanks Jonny As for being yelled at...I've got pretty thick skin.
Bill
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12gagueblast
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Re: Sorry about the length...my 1st post.
« Reply #7 on: Dec 6th, 2003, 1:24am » |
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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.
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dkirin
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Re: Sorry about the length...my 1st post.
« Reply #8 on: Dec 6th, 2003, 12:12pm » |
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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
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fubar
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Re: Sorry about the length...my 1st post.
« Reply #9 on: Dec 6th, 2003, 1:22pm » |
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on Dec 5th, 2003, 6:29pm, 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
..................................jonny |
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That's Jonny, the voice of reason. Actually, in a previous life I think he was a nun.
Just don't ever say the "M" word.
Welcome aboard the the Good Ship Heads-that-Pop.
-fubar
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| « Last Edit: Dec 6th, 2003, 3:17pm by fubar » |
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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ClusterChuck
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Re: Sorry about the length...my 1st post.
« Reply #10 on: Dec 6th, 2003, 2:13pm » |
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Welcome abord, Bill. Sorry you have to be here.
on Dec 6th, 2003, 12:12pm, 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 |
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on Dec 6th, 2003, 1:24am, 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. |
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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
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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jonny
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Re: Sorry about the length...my 1st post.
« Reply #11 on: Dec 6th, 2003, 3:02pm » |
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on Dec 6th, 2003, 1:22pm, fubar wrote:| Just don't ever say the "M" word. |
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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
...............................jonny
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fubar
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Re: Sorry about the length...my 1st post.
« Reply #12 on: Dec 6th, 2003, 3:16pm » |
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You know there really is a LMAO.com? LMAO
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Patrick_A
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Re: Sorry about the length...my 1st post.
« Reply #13 on: Dec 6th, 2003, 7:07pm » |
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Yea, when Jonny drives down the road, all of the sheep back up to the fences!
Watch out for Jonny!
Patrick
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Do you think that when they asked George Washington for his ID, that he just whipped out a One Dollar Bill?
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