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Topic: Greetings, the Board (Read 1030 times) |
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Spindrift
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I'm very glad to have discovered this place, which wasn't around to the best of my knowledge during my last major CH cycle. What a great service to everyone who goes through the very personal hell of these damnable things!
Without boring you all with my history - no doubt not dissimilar to many of yours - I find it interesting when I reflect back on my 49 years to note that, although I had my first "major" cluster episode perhaps 6 or 7 years ago, I'd been experiencing similar pain since my mid 20s. Sporadic and never up to the levels I'd eventually experience.
That major attack lasted 2 months, and I'm nearly a month into another one now. In the intervening half dozen years I've gotten the occasional CH, every few months for a night or so but nothing that stuck. Lucky, I guess.
I've learned so much from reading everything here. When I was "first" diagnosed those 7 years ago, the doctor prescribed Fiorinal. I knew nothing of anything else, and took it when the pain became unbearable - the Kip scale is an excellent tool and I, like most of you I'm sure, have gritted teeth those 2 am pacing sessions desperately trying to weather a 10 while questioning the wisdom of continuing to breathe.
Anyway, I saw a new doctor the other day who didn't seem to know too much about these things. Offered to refer me to a neurologist but since I have minimal insurance I wasn't in a position to do that right now. Ditto an MRI. He gave me some more Fiorinal, and another doc in his office had the week before given me something called Ultracet. Neither one of these is anything to beat the band about, I should add. One of these days I'll have to hie me to a neuro doc. But I'm always hoping the end of the cycle is just another couple of shots to the head and droppy lid away....
My thanks to everyone for the wonderful support, and especially to DJ who created this board. I'll leave you with a CH Haiku:
Here in Florida
I call mine The Hurricane,
No eye, naturally.
Thanks for listening,
Spindrift
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Mark C
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Re: Greetings, the Board
« Reply #1 on: May 10th, 2003, 6:57pm » |
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Welcome to the board,
Sorry you need us......but glad you are here. There are many tools avaliable to Clusterheads today. This is the best place in the world for support and information. I will attach a link from the OUCH site to get you started. Read, read, read....and then read more. Knowledge is power. You may have to educate your current doctor...in a nice way of course. 
Click here.
PFDAN's
Mark
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Spindrift
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Many thanks, Mark. I'd visited the OUCH site a few weeks ago, briefly, and will go back there and do some more reading! I really appreciate your taking the time to respond to my post.
SD
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brain_cramps
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Re: Greetings, the Board
« Reply #3 on: May 10th, 2003, 11:56pm » |
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spindrift:
like mark said... read, read and read some more...
when you have quetions, i'm sure there's lots of people willing to try and help.
keep us posted,
PFDAN,
grant 
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Callico
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Re: Greetings, the Board
« Reply #4 on: May 11th, 2003, 2:03am » |
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Welcome aboard. Find a neuro who is familiar w/ch and let him know right up front that ins. is minimal. I have none and let my neuro know up front that I was self pay andhe had been very good to not order tests that were not necessary, and to try me on some of the more inexpensive meds first. First suggestion, O2! Second suggestion, O2! it works for many and is relatively inexpensive.
Wishing you PFDANs.
jc
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Spindrift
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Re: Greetings, the Board
« Reply #5 on: May 11th, 2003, 10:23am » |
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Thanks Grant and JC - very nice of you to chime in and I'm glad to be here!
With Appreciation,
SD
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jonny
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Re: Greetings, the Board
« Reply #6 on: May 11th, 2003, 10:28am » |
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Somebody smash the new guy with an oar so he sits down ;D
Start rowing SD
Sorry you have to be here, but welcome aboard.
...........................................jonny
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cathy
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Re: Greetings, the Board
« Reply #7 on: May 11th, 2003, 10:51am » |
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Spindrift
Welcome to the clusternut house...sorry your a clusterhead but happy to meet you!!
Cathy 
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cootie
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Re: Greetings, the Board
« Reply #8 on: May 11th, 2003, 11:52am » |
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'WACK'....ok he's sittin now......(jus jokein)....welcome Spindrift......there's alot for ya ta learn here.......and lots of laughs and ribbin.  oar wacker Pam ;D ;D
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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jonny
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Re: Greetings, the Board
« Reply #9 on: May 11th, 2003, 12:13pm » |
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LMMFAO....Cutie ;D
..................................jonny
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Spindrift
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Re: Greetings, the Board
« Reply #10 on: May 11th, 2003, 12:45pm » |
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jonny, pam, as soon as I can convince this mako to release my skull from its jaws I'll be happy to climb back in the boat. Or you could just drag me.
Thanks,
Spin
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cootie
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Re: Greetings, the Board
« Reply #11 on: May 11th, 2003, 12:51pm » |
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I think that's called trollin isn't it Spindrift ? Trollin with a spin Pam
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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jonny
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Re: Greetings, the Board
« Reply #12 on: May 11th, 2003, 1:05pm » |
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Have you tried 02, Spin?
If not you should!!!
...................................jonny
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Spindrift
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Re: Greetings, the Board
« Reply #13 on: May 11th, 2003, 8:35pm » |
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jonny, thanks for the tip on the o2, it's something I mean to look into. Meanwhile, checked out your very impressive website! I assume the photos were from a CH meeting? Since they looked like normal folk I assume everyone had taken your advice... since no one was screaming.
Anyway, thanks again for all the support everyone.
Spin
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Mr. Happy
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Re: Greetings, the Board
« Reply #14 on: May 11th, 2003, 10:04pm » |
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on May 11th, 2003, 8:35pm, Spindrift wrote:| jonny, thanks for the tip on the o2, it's something I mean to look into. |
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Nonononononono Spin........O2 is not a "Tip"! Tips are what Rabbi's amd gamblers do. This is more of a Potential Reality Enhancer......Get to O2 20 minutes ago. Avoid the rush. For more information, at a _Modest_ Royalties fee, go HERE. Bookmark it when you're done.
There's a REASON why some yell about O2.......
RJ
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Charlie
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Re: Greetings, the Board
« Reply #15 on: May 12th, 2003, 12:28am » |
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Welcome aboard Spin. If you've been around here as you say, you now know what a bunch of crackpots we really are  I'm the only sane one of course. The others are all against me.
Glad to have you and here is my crazy but for me, a very effective technique:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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Spindrift
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Re: Greetings, the Board
« Reply #16 on: May 12th, 2003, 7:31am » |
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Hey Charlie - I can't thank you enough for taking the time to write such a detailed description of that redirecting technique.
Man, the people on this board are great!
I intend to try it the next time I get an attack.... which should be later today, I'm figuring. I'll report in this thread if I'm successful.
I'm finding that this episode of attacks is shifting around during the day. When they began a month ago they were hitting at 8-9 at night and then again between midnight and 2 am. After awhile they moved to mid afternoon. Now I'm getting them at 7 am. Strange. They're also changing location within my head - from the temple area to behind the eye, and the concomittent tearing up and nostril clogging are increasing.
Ain't life wonderful!
A few years ago my brother sent me an audiocassette of some mental pain reduction technique, which I tried with no great results (btw for you statisticians, he gets migraines but no clusters). It wasn't to the best of my recollection anything to do with redirecting blood - nothing that specific - but had more to do with general relaxation and concentration on the pain. There was a buildup to actually putting one's hand on the painful part of the body and "taking away the pain". As I said, results were..... mixed. (it didn't work)
I've also been reading the various posts and links about oxygen and it seems like a winner. One question: I am, or at least used to be, a certified diver. Somewhere around here I have a scuba tank and regulator. Assuming I can get a doctor's prescription for O2, and I'm pretty sure my doc will write me one, can I use the equipment I have? Obviously the delivery system is different for scuba in that you jam the regulator in your mouth instead of putting a mask over mouth and nose. But divers are well used to breathing this way, and for sure you're getting 100% of the stuff in the tank and no outside air!
Again, as always, I'm grateful to everyone here who's trying to help.
Many thanks,
Spin
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Not4Hire
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Re: Greetings, the Board
« Reply #17 on: May 12th, 2003, 7:59am » |
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spindrift wrote:
Quote:| Somewhere around here I have a scuba tank and regulator. Assuming I can get a doctor's prescription for O2, and I'm pretty sure my doc will write me one, can I use the equipment I have? Obviously the delivery system is different for scuba in that you jam the regulator in your mouth instead of putting a mask over mouth and nose. But divers are well used to breathing this way, and for sure you're getting 100% of the stuff in the tank and no outside air! |
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...this may work if you can make the connection from the USP medical grade o2 tank to your regulator and mouthpiece... not being familiar with the SCUBA fittings/threads/etc. ...I cannot say...... but remember that SCUBA air is regular compressed air (mix of nitrogen and oxygen) which IS NOT what you want....
...there may also be issues with PRESSURE in the medical o2 tank.... we'd hate to see ya blow yerself up if the SCUBA reg isn't rated to handle the 2000-2200 p.s.i. that a full USP tank has....
..again, I don't *hablo* SCUBA, so YMMV..... hope this helps.....Steve(N4H)
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echo
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Re: Greetings, the Board
« Reply #18 on: May 12th, 2003, 8:09am » |
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Welcome to the MB spin. Sorry you had to search us out, glad you found us.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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maggie_may
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Re: Greetings, the Board
« Reply #19 on: May 12th, 2003, 8:26am » |
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Welcome aboard, Spindrift! Glad you found us but sorry you needed to.
maggie
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
The human spirit is stronger than anything that happens to it. - C.C. Scott
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Spindrift
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Re: Greetings, the Board
« Reply #20 on: May 12th, 2003, 8:40am » |
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Steve, Echo, Maggie - thanks so much for the warm welcome!
Steve, to answer your question: most scuba tanks today, including mine, are rated to 3000 PSI (there are, I think, some that go higher). And yes, I realize that divers breathe air and we're talking about pure O2.... which might make it too expensive to fill a tank that size to the required pressure. Worth an inquiry at an oxygen supply house, I'd figure. And I was wondering about the efficacy of using a standard scuba regulator with the tank, obviating the need for any medical gewgaws at all beyond the precious balming gas itself.
Hope that clears it up. But btw, I wasn't sure what your acronym "YMMV" meant..... Your Mother Makes Velvet? Yaks Meander More Viciously? Yalta Meant Moral Victory? Yes, Maurice Mainly Vomited?
Speaking of internet abbreviations, it took me awhile but I managed to decode the following:
IHYA - I hate your ancestors
YPCW - You pathetic, creeping worm
GFY - good for you (or, something a tad less complimentary that begins with the word “go”)
EMS - emergency medical services (or, eat my shorts)
HWYLATGSBMT!- Huh, will you look at that green stuff between my toes!
ILSHLFIPFMNAE - I'm laughing so hard, lymph fluid is pouring from my nose and eyes.
YKMUM?HH - You know my uncle Morty? He's hypoglycemic
TCJV - The cat just vomited
ISWYWE - I sure wish you were electrocuted
ASGIP - A single green, iridescent plum *
DTMIAHNO! - Don't tempt me, I already have nine ocelots!
HR?THR? - Herman Rotblatt? THE Herman Rotblatt?
P! - Peccary-eater! (or, in Rhode Island, Pudding)
SPLOOTH - Dadgummit, I just finished waxing those glands! (use this one gingerly... it requires some finesse)
M!BAMNR! - Mom! Billy ate my new rodent! (not to be confused with MBAMG, which means Moth Butter Angers Myron Ghent. Except in Maine, where it means Simple Felonies For Simple Lives)
TART - Trust all relevant technologies**
DUMI - That remark you just made... I really can't describe it... I would say perhaps that it has a certain lack of pith, but no, there's more, much more... it bespeaks a turn of mind both puerile and nonsensical... no, dratit, that's not it either... it, uh, really goes far beyond that... yes, into the realm of the absurd, the grotesque, the abysmally bad... in fact, if pressed I'd have to say that what you just said is by far the stupidest, most inane and deeply idiotic thing I HAVE EVER READ IN MY LIFE AND I HOPE THAT YOU GO OFFLINE RIGHT NOW, SLIT YOUR WRISTS AND JUMP OFF THE NEAREST TALL BUILDING. THANK YOU. GOOD NIGHT. GO AWAY. GET OUTTA HERE. LEAVE ME IN PEACE.
(* This one means nothing, and I wish people would quit using it)
(**this one's so square it hurt me to type it)
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Not4Hire
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Re: Greetings, the Board
« Reply #21 on: May 12th, 2003, 8:56am » |
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....SGTSATMFTSOTN*
(so good to see another twisted mind find this ship of the night)... you'll undoubtedly be hearing from MrHappy as well... that is, if CocktailHour hasn't arrived...heh)... hey RJ: DUMI..... ;D
oh yeah, YerMileageMayVary.....
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Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
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Spindrift
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Re: Greetings, the Board
« Reply #22 on: May 12th, 2003, 9:01am » |
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Ah, cocktails..... I remember them fondly. Talk about a headache catalyst!
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oringkid
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Re: Greetings, the Board
« Reply #23 on: May 12th, 2003, 12:55pm » |
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Welcome Spindrift! I love your sense of humor already!
LOL (Look Out Ladies)
You will know you are accepted when someone tells you to STFU (See The Funny Underwear)
You may also see LMMFYBO which of course means
Lewd Males May Furtively Yank Bulging Organs
So be careful! LMAO (Largely Materialistic Anal Orifices)
SAS (Stupid And Silly) Sherry
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Spindrift
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Re: Greetings, the Board
« Reply #24 on: May 12th, 2003, 6:11pm » |
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hmmm..... anal orifices, bulging organs, underwear: are you trying to tell us something, sherry?
In any case, TYFSANW*,
SD
*meaning either Thank You For Such A Nice Welcome, or The Yogurt Fermented Slowly As Nudelman Wept
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