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Topic: Beast is in the box ... (Read 399 times) |
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TonyG1
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Dare I say it ... no I won't .... for me, at least for now (knock on wood), it seems the beast is put back in the box and the box is chained and locked tight .... thank you verapamil !!!!  I guess I'll officially know when I start tapering off of the verap ( a week or so from now) Fingers crossed but I've not had so much as a shadow lately --- hope I'm not jinxing myself 
Here is what I got from this cycle ... an official diagnosis, a low cholestrol diet, went from smoking Marlboro Reds to Marlboro Ultra lights (working toward quitting), a general practioner, a neurologist, a brain scan (MRI / MRA), a WHOLE bunch of knowledge gained from this website and the folks here who share so freely (thank you all !!!) --- Sounds kinda like a shopping list ...
I'll be on the board from time to time with any new info I may come across and to hopefully provide some level of support to others.
Again, thank you all !! I wish you all many PFDANs !
Tony
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don
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Re: Beast is in the box ...
« Reply #1 on: Mar 21st, 2005, 8:12pm » |
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Sounds like you got a package deal there and a good one at that!
Enjoy your PF time!
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Kris_in_SJ
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Re: Beast is in the box ...
« Reply #2 on: Mar 21st, 2005, 8:25pm » |
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Congrats Tony - on another cycle completed and done.
Please stick around. Share what has helped you with others who come here. You might find you're repeating yourself alot, but it's worth it if you can help even one other clusterhead.
Enjoy that PF time! Many hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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TonyG1
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Re: Beast is in the box ...
« Reply #3 on: Mar 21st, 2005, 8:33pm » |
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on Mar 21st, 2005, 8:25pm, Kris_in_SJ wrote:it's worth it if you can help even one other clusterhead.
Enjoy that PF time! Many hugs,
Kris |
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Thanks Kris ! I'll do that, I couldn't agree with you more!
BTW Don -- Yep I got the full package and more I think -- this was the first cycle I ever sought medical treatment ( 8 or 9 cycles later - about every two years or so.
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E-Double
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Re: Beast is in the box ...
« Reply #4 on: Mar 21st, 2005, 8:42pm » |
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on Mar 21st, 2005, 8:33pm, TonyG1 wrote:
Thanks Kris ! I'll do that, I couldn't agree with you more!
BTW Don -- Yep I got the full package and more I think -- this was the first cycle I ever sought medical treatment ( 8 or 9 cycles later - about every two years or so. |
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Thatta boy  ...Glad to hear it and ditto on the first cycle seeking treatment.....This place is very special!
Happy for ya!
E.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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debz
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Re: Beast is in the box ...
« Reply #5 on: Mar 21st, 2005, 11:50pm » |
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Tony,
That's great news! Congrats, and enjoy, it truly is wonderful to be free. I am happy to hear of your remission.
Ditto what you said:
Knock on wood... me too... I think we found this place around the same time. Verapamil gave me my life back, a far cry from my last cycle. Almost 11 weeks into it, I am about to try weaning off the verapamil as well. Still shadowing here, but less and less frequently now. I realize how very fortunate we are that the meds worked for us. This time. I wish I could say I have made as many healthy changes as you have! A pat on the back for ya Tony.
And what you said --this website and the people here are amazing -always ready to help and repeat themselves over and over. A real special place (you're so right E-dub, -btw -heya!).
I'll be hanging around too. I had a real wakeup call after an 18 year remission. I recently read that MS affects 0.1% of the population, about the same as CH... but who has heard of CH, while everyone has heard of MS?
Anyway, my point, lots can be done. There is an annual bike race here, the MS 150, where people ride their bicycles from Houston to Austin to raise money for MS research. How about a CH150??? CH150s in many cities... Why not? After hanging around this place, and my own limited experience, I understand that CH can be as debilitating as MS, and just as deserving of big fundraisers and big research. For instance, why are some of us chronic, and others have long remsissions? A real puzzle in my mind for a disorder that current thinking says is related to our body clocks. Just one question of many that could lead to better treatments or even a cure.
Tony, you and I, being out of cycle (fingers crossed), we have more energy and time now to work towards outreach and fundraising, and to support others dealing with CH.
Don't mean to hijack your thread, just some thoughts running around my head --this is about you! And again, best to ya.
And thanks to DJ and everyone that posts here --I appreciate all your efforts.
be well, and pfdans.
Debbie
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Shared pain is lessened, shared joy increased; thus do we refute the law of entropy. -- Spider Robinson
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Charlie_-_Florida
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Re: Beast is in the box ...
« Reply #6 on: Mar 22nd, 2005, 12:01am » |
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PF days....great.
Happy the Verapamil worked for you.....For me NO.
Sufferer for over 40 yrs........tried it all.
My Rx....with 80 % good results.....Prednisone (Ugh), and Imitrex (Restricted daily use).
Anyone have anything new they have tried ?
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survivor13
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Re: Beast is in the box ...
« Reply #8 on: Mar 22nd, 2005, 12:07am » |
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hey that's great! verapamil and melatoin did it for me, i think! at least that's what i was takin' when they stopped. April 11 will be 120 days. 
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Jeepgun
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Re: Beast is in the box ...
« Reply #9 on: Mar 22nd, 2005, 11:15am » |
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FANTASTIC!! Congratulations! May it continue. PFDAN'S!
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jokrs2
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Re: Beast is in the box ...
« Reply #10 on: Mar 22nd, 2005, 1:09pm » |
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It's awesome to read so much great news. Hoping your PFD&N's continue. Blessings, Joe
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Given strength, courage & a sound mind!
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sandie99
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Re: Beast is in the box ...
« Reply #11 on: Mar 22nd, 2005, 1:31pm » |
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Tony,
that's just wonderful! I'm so happy for you!!!
I hope the beast stays away!
Many PF days,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Belle
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Re: Beast is in the box ...
« Reply #12 on: Mar 22nd, 2005, 4:33pm » |
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I just got off the Verap myself. Glad to hear your on your way to doing the same. Hope the pain stays away forever for ya guy.
Belle
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Take the time to stop and smell the roses!
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TonyG1
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Re: Beast is in the box ...
« Reply #13 on: Mar 22nd, 2005, 7:29pm » |
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on Mar 21st, 2005, 11:50pm, debs wrote:Tony,
...
Tony, you and I, being out of cycle (fingers crossed), we have more energy and time now to work towards outreach and fundraising, and to support others dealing with CH.
Don't mean to hijack your thread, just some thoughts running around my head --this is about you! And again, best to ya.
And thanks to DJ and everyone that posts here --I appreciate all your efforts.
be well, and pfdans.
Debbie |
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First, thank you all for your good wishes !!! This was the first cycle on verap but oddly enough I can differentiate between the verap holding the beast at bay and the end of the cycle ... weird. I do know it will be back but for now let it RIP.
I only hope and pray ALL of you can find some respite (especially you folks who are chronic!) -- I think we all are made of some tough stuff but I'm amazed at the strength of the chronic folks here.
Debbie - I agree -- In terms of time to further the cause for outreach, general education of ppl on the condition, etc. I plan on checking around locally and to check with the Neuro's office (they specialize in treatment of HA ppl ) at my follow-up appt. next month about local support networks where I may be able to put my experiences to some good use and volunteer some time and funds.
Actually didn't take it as you hijacked the thread ... it wasn't intended to be about me and my cycle per se' (don't get me wrong -- glad it is over for now!!! ) -- my intent was to sort of share the thought that there is hope for cycles to come to closure and for respite and peace to be achieved to some extent!
I'll echo you in thanks to DJ and all who post here !!! You all are GR8 !!!!!
Best of luck and I truely wish you all PFDANs !!!!
T.
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KMT
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Re: Beast is in the box ...
« Reply #14 on: Mar 23rd, 2005, 9:52am » |
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Congratulations! YIPPY! I am happy for all that are PF now. Hope you stick around I know I have benefited from all who come on this sight. Even though I whine a lot...
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aka...................................................... KimY
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Gator
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Re: Beast is in the box ...
« Reply #15 on: Mar 24th, 2005, 12:29pm » |
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Happy to hear another person's cycle coming to a close. May the beast never darken your doors again.
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TonyG1
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Re: Beast is in the box ...
« Reply #16 on: Mar 24th, 2005, 9:29pm » |
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on Mar 24th, 2005, 12:29pm, Gator wrote:Happy to hear another person's cycle coming to a close. May the beast never darken your doors again.
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Thanks Gator! I wish the same for you all as well !!
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maria9
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Re: Beast is in the box ...
« Reply #17 on: Mar 24th, 2005, 10:47pm » |
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TonyG and Debs, here is a good place to start if you are looking toward helping to fund clusterheadache research.
http://www.maps.org/support.html
Scroll down until you see the clusterheadache research.
Marsha
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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maria9
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Re: Beast is in the box ...
« Reply #18 on: Mar 24th, 2005, 11:21pm » |
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Or you might be interested in the clusterhead necklace, your purchase of which will help fund the study at Harvard.
http://www.clusterbusters.com/necklace.htm
Marsha
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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debz
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Re: Beast is in the box ...
« Reply #19 on: Mar 24th, 2005, 11:44pm » |
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Maria,
Thanks for the link. MAPS is an amazing organization, for all they are doing for CH and other conditions. Breaking the taboos against medical uses for schedule 1 drugs (psychedelics and marijuana) is a tough job. The legal and social barriers against this worthwhile research are huge, and the scientists who go this route are to be commended. Very worthy of our support, whether by sending a donation or working towards the outreach cause on a grassroots level.
Tony, great idea to work with your HA clinic for CH outreach. And, we can always volunteer some of our talents to OUCH.
Hoping for future PFDaNs for all.
Debbie
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Shared pain is lessened, shared joy increased; thus do we refute the law of entropy. -- Spider Robinson
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