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Topic: Hello (Read 382 times) |
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Judo_Tom
New Board Newbie
Im really glad I found this place :)
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Hello everyone.
This is my first post and i just wanted to introduce myself.
I have not officially been diagnosed with cluster headaches but i am now positive i have them. for the last 4-5 years of my life at times i would get severe migraines centered around my right eye.. once i got one i knew life would be hell for 1-3 months with an attack or two a day gnerally speaking.. ive been to 4 docs and they never narrowed it down but always checked my eyes or sinus for problems. I plan on printing a ton of info out and going to a doc with it or trying to find a specialist who could help in the NEPA area (northeast pa) or near binghamton ny
unfortunately i am w/o insurance for a week or two and im just entering another cycle so i am looking for other ways to reduce teh # of attacks, reduce the pain from attacks or aanything else that might help.
oh and i like judo 
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EmpressJMB
New Board Veteran
No Brain, No Headache
Posts: 114
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Re: Hello
« Reply #1 on: Oct 1st, 2004, 9:43am » |
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Hi Tom! Sorry your here but glad you found us. I live not too far from you in Hamburg, NY. The Neuro's around here seem to be pretty informed. I go to the Dent Neurological Institute in Amherst, NY. They are amazing! I think you could find something closer, probably. They also have an office in Orchard Park, NY. (Home of the Buffalo Bills...Oh, be quiet the rest of you!  ) I hope your insurance kicks in QUICK! The doc's and med's get quite expen$ive as you can imagine. In the meantime, read, read, read all you can. The info to the left of your screen really helped me. I have only been here 3 weeks today. I have also been PF (pain free) 3 weeks today! Although the CH beast is trying to sneak back in, I can feel him. The phone number for Dent is 716-250-2000. If nothing else, maybe they can refer you to someone closer. Good Luck and stick around; there's alot to learn around here and great support when your having a hard time. Janet
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
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lionsound
CH.com Alumnus
New Board Hall of Famer
breathe
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Re: Hello
« Reply #2 on: Oct 1st, 2004, 9:49am » |
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Welcome Tom!
Sorry your head hurts, glad you're here.
Check out the links to the left and read, read , read!
Especially the one on OXYGEN INFO.... affordable,compared to meds, without insurance and for a lot of us it works great.
Also be sure and take the cluster quiz. And read lots of the threads on the board...tons of helpful info there too.
No matter what your "official" diagnosis ends up you should see a neurologist . Try to keep track of your headaches in a calendar or diary so you can bring that with you. bringing the printed info is a great idea. (even without ins. you might want to schedule that appt now because sometimes they take forever to get)
Please ask us any questions you may have.
PF wishes for you,
lionsound
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E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
 
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Re: Hello
« Reply #3 on: Oct 1st, 2004, 9:55am » |
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Hey another Martial Artist....
Welcome aboard and although I do wish that you do not have CH, if you do you are in the right place!
First and foremost makesure that you get a proper diagnosis for there are some other headaches that may present themselves similar to CH yet might respond to different treatment.
Not all treatments work for everyone and being that you have no meds @ this point nor have you been officially diagnosed, there are a few things that might be able to give you some relief non-medicinally.
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be a savior.
MAny of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
Have you taken the "quiz" located to the left of the website?
All in all dude, pain sucks but this place will offer you tons of support if you need to be here. Kinda saved my life and apparently 1000's of others 
Pain free wishes to you and gather as much info as you can.
Good luck,
Eric
not a doctor!! just some things that have sometimes worked for me
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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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JJA
New Board Old Timer
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Posts: 279
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Re: Hello
« Reply #4 on: Oct 1st, 2004, 10:19am » |
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Hey, I grew up just outside of Scranton, in Moscow...I still return to the area to visit the family once in a while.
I am sorry to say that I don't know of any specialists in the area. The only doc that helped me was GP in Honesdale. (Dr. Gustanis as I recall) He was great because he didn't pretend that he knew about clusters. He would pull out a book right in front of me and read what the headaches were and how to treat them. He diagnosed me with the same book! Unlike many docs that pretend they know and treat CH like migraines (my last doctor asked how my migraines were when I returned for a follow up.) Anyway, it might be best to get educated here and find a doctor that will listen to you until you can find a specialist.
I agree about trying melatonin. It gave me a lot of relief.
Jesse
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| « Last Edit: Oct 1st, 2004, 10:20am by JJA » |
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Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
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karma
New Board Hall of Famer
I love YaBB 1G - SP1!
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Re: Hello
« Reply #5 on: Oct 1st, 2004, 10:25am » |
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Hi Tom,
Getting a proper diagnosis is the first step. But in the meantime here is what works for me.
When you feel a hit coming on do something that significantly icreases your heart rate. Get the blood flowing to other parts of your body. It will usualy work for me if I get going at the very first signs of a hit coming on.
Drink a couple red bulls cold and fast. This helped when the cycle was ending and the twinges were pretty frequent.
If youv'e gotten hit and the pain has arrived learn to relax, breath deeply and go with the flow. Getting all worked up and tense seemed to make the hits last longer. This one can be hard but with some practice it get easier. Ice packs and drinking lots of cold water during the hit also help.
Try and stay away from the over the counter pain relievers it is pretty unanimous that these can make it worse. At the very least they don't help
Good luck, read and educate yourself.
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Judo_Tom
New Board Newbie
Im really glad I found this place :)
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Posts: 25
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Re: Hello
« Reply #6 on: Oct 1st, 2004, 10:26am » |
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thanks everyone i really mean it too.. and im sure you know how i feel finding this place.. especially after years of suffering with NO help.
i havent tried melatonin for the CH but i have it so ill try it.. i generally get my worst attacks around 7-11pm though not while sleeping..
thanks for the NY doc info i will call them asap
i took the quiz and a few others on the www and its DEAD ON i mean i couldve written teh quiz not knowing anything about CH just to see if anyone else suffered like i do the cyclical nature... same time of year. duration of the attacks the pain .. same side head.. red eye.."dropped" eye.. the rocking back ad forth.. the ill do anything to not feel the head pain like punch the floor , myself whatever..the alcohol trigger (sux)..
i really need relief.. w/ my life now im not at my house often and getting an attack in public is not fun, not safe and not cool 
how much is o2 ifi have to pay
how much is imitrex inj's if ihave to pay..
ackk i have a 1000000000 questions but ill keep reading.. i know theyve been asked so i wont bug you guys/gals too much..
and truly thanks again.
Tom
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Judo_Tom
New Board Newbie
Im really glad I found this place :)
Gender:
Posts: 25
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Re: Hello
« Reply #7 on: Oct 1st, 2004, 10:49am » |
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so caffeine and exercise as i feel the attack coming on could help? does it help stop or prevent the attack or weaken the scale.
btw my bad attacks are easily 8's,9's and some 10's on the kip scale so even if i can bring them down a bit it will really help.
and i do know when there coming.. i normally have 10 mins or so advance warning and the warning sign is a feeling of increased pressue in/around my right eye
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Judo_Tom
New Board Newbie
Im really glad I found this place :)
Gender:
Posts: 25
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Re: Hello
« Reply #9 on: Oct 1st, 2004, 12:00pm » |
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thanks for the link..
im definately going to stop at a few fire depts. and ask for help
has anyone else done this.. might start a thread on the main page
and exercise and caffeine i will try as well next attack
thanks again!!!!
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don
Guest
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Careful with the exercise, it triggers an attack for me.
It's an individual thing, wont know till you try.
I'll be over in the corner on my lazy boy if you need me.
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Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
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Re: Hello
« Reply #11 on: Oct 1st, 2004, 1:16pm » |
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on Oct 1st, 2004, 1:12pm, don wrote:| I'll be over in the corner on my lazy boy if you need me. |
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I don't think Jonny's lazy, Don. That's really not very nice of you to call him that, you know.
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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don
Guest
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You shittin me?
That would be the nicest thing I've ever said about him.
Besides.....he's to lumpy. (didn't think I got it did ya Canadian broad?)
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Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
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Re: Hello
« Reply #13 on: Oct 1st, 2004, 1:40pm » |
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on Oct 1st, 2004, 1:28pm, don wrote:| (didn't think I got it did ya Canadian broad?) |
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wow. I AM impressed. Guess I'll have to start getting up even earlier to fool YOU, huh? The crack of noon just won't do anymore.
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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don
Guest
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Quote:The crack of noon just won't do anymore.
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Is that when the seals start popping their little heads threw the ice holes?
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Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
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Re: Hello
« Reply #15 on: Oct 1st, 2004, 6:28pm » |
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Welcome from over in Jamestown, NY. Lots of us around today. Here are some things that have been used by many:
Running. Draws blood to muscles and helps some that way.
Cold water, the AC, cold cloths, ice, frozen peas, etc. Things that affect circulation seeem to help.
Sleeping in a recliner can sometimes prevent at least one attack a night.
Here is a technique that I used very successfully:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
I hope your insurance kicks in soon and et us know how things are going.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
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Re: Hello
« Reply #16 on: Oct 1st, 2004, 8:15pm » |
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Hey Tom,
I've aborted more CH with caffiene than anything . Watch out for the intake though. It may start a bad cycle of rebounds. Welcome to clusterville. I keep a dozen spoons in the freezer for the eye. Dont freezem to your lid though. The people here have lots o info. Dont let the beast have his way keep up the good fight.
BB
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It wasn't me I didn't do it
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Judo_Tom
New Board Newbie
Im really glad I found this place :)
Gender:
Posts: 25
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Re: Hello
« Reply #17 on: Oct 5th, 2004, 10:42am » |
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hello,
i tried the caffeine last nite and it started to help but didnt abort it.. and then it kicked in full gear
i slammed 2 redbulls with ice really quick and then stopped..
how much caffeine do you use to abort.
thanks
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thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
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Re: Hello
« Reply #18 on: Oct 5th, 2004, 9:14pm » |
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If a couple of red bulls and coffee dont do it ...it wont.
Watch your intake of total caffeine during the day it will cause rebounds. 
BB
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It wasn't me I didn't do it
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Judo_Tom
New Board Newbie
Im really glad I found this place :)
Gender:
Posts: 25
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Re: Hello
« Reply #19 on: Oct 7th, 2004, 12:28pm » |
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thanks i think im going to stick to drinking water during the day. at times ive drank about 2 gallons a day so hopefully that will help..
then just save the redbull when i get an attack
any reason to not mix the caffeine with either o2 or imitrex injections?
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thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
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Re: Hello
« Reply #20 on: Oct 7th, 2004, 10:47pm » |
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Ya man ,lots. Caffeine is a trigger for some lifesaver for others. If you have an altenative watch the caffeine intake. I was fightin the demon once with the caffeine and was up to about a case or so of Mt Dew a day,ended up having rebounds and triggering the CH.
And then one of the bad neuros I was seeing says take two apsirin and drink a coke. Should have kicked him.
BB
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It wasn't me I didn't do it
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