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travisk

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First Time here
Feb 14^th, 2010 at 6:28pm

Im a newbie here. Really happy to have found this place. My attacks started 7 months ago. Usually have at least five attacks a week usually one a day. Havent had a break yet more than four days. Dont have medical insurance so havent seen a doc yet. Would have went to the hospital with the first one because i thought i was going to die but was hiking the appalachian trail and was a 10 mile hike to a road so i just sat there. By the time i got off the trail knew i wasnt going to die so i thought i could tuff it out. Fast foward 7 months and i am now depressed and have considered suicide during the attacks. Going to the neurologist asap dont care if i have to spend all my money on docs and meds. Honestly cant think of a better way to spend it. It took 7 months but these ch's have broken me. Even when im not hurting im sad and scared. hard to type this without cryin. Just need a break. And some sleep. Looking foward to seeing the doctor and hopefully get at least a week without a CH. My record so far 4 days but when they come after a break they are longer about 2 hrs instead of 1 and much more painful. Well thats my story thanks for bein here and its good to know im not the only one who screams and pulls out my hair. I prefer to pull out my leg hair because i can hide the bald patches. p.s. it really sucks when i run out of hot water in my shower

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BC_Battler

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Re: First Time here
Reply #1 - Feb 14^th, 2010 at 6:59pm

Welcome,

I am so sorry you are having a hard time right now, but this is a good place to come for support.

I am also sorry that you are unable to see a doctor; I can't imagine what that must be like. I do hope you get to see one soon, though, so you can treat your situation appropriately.

Please do know that many of us have been where you are now, and many of has had similar thoughts to yours. But we have found ways to cope, ways to even thrive and survive; and so will you - this CH thing is something that you can beat, or at the least, learn to to co-exist with.

When you need a group to listen / to vent to / to ask questions of, you are always welcome here.

I wish you all the best, Travis. Please feel free to message me if you ever need some support. Take care -

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travisk CH.com Newbie Offline I Love CH.com! Posts: 24	Re: First Time here Reply #2 - Feb 14^th, 2010 at 7:32pm Thank you i will found this place last night and my moral has improved a hundred fold
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Guiseppi

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Re: First Time here
Reply #3 - Feb 14^th, 2010 at 7:58pm

Good news is there are some very effective treatments. For now, go buy some energy drinks, Rock Star, Monster, any containing caffeine and taurine. Chug one of these at the first sign of a hit, many can abort or at least really reduce a hit with these.

Read the oxygen info link on the left and really push for it with your doc. It's been a very effective treament for many, I can abort an attack in less then 10 minutes with just oxygen. I'm a 31 year episodic sufferer and haven't found anything that'll touch oxygen for effectiveness with the total lack of side effects.

Good luck in getting in to see the neuro. An accurate diagnosis is critical as there are so many variants of headaches.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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travisk CH.com Newbie Offline I Love CH.com! Posts: 24	Re: First Time here Reply #4 - Feb 14^th, 2010 at 9:04pm thanks already bought the drinks got ten for now and the doc my dad worked for for twenty years as an eeg tech will hopefully get me in and get me a script for the o2 thanks for readin my story and the tips lookin forward to less painful attacks shorter will be nice to
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bejeeber

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Re: First Time here
Reply #5 - Feb 14^th, 2010 at 9:59pm

Hey Travisk - great that you have a line on some O2 - there's a very good chance it will work well for you if you follow the oxygen info to the letter, including non-rebreather mask.

Considering the severity of your case, I imagine a hi flow regulator will likely need to be ordered too.

GOOD thing you found this site - there are many potentially effective ways to beat back this beast we call CH.

Please keep hanging around, researching here and chatting - lots to learn and discuss.

If you haven't found out the hard way already, alcohol triggers a massive hit for most of us BTW.

Also, I hate to tell you this, but doctors have a particularly lousy track record treating CH patients and they are generally ill informed, to put it politely.

Your best hope is to find a headache specialist type neuorologist.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Bob Johnson

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Re: First Time here
Reply #6 - Feb 15^th, 2010 at 7:14am

Working with a headache specialist is very important. Too many neurologists do not have training/experience to handle this complex area of medicine.

Don't assume you have cluster. There are too many disorders which appear to be cluster but are, in reality, another disorder. Why a good Dx is essential.
=======

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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Bob Johnson

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travisk CH.com Newbie Offline I Love CH.com! Posts: 24	Re: First Time here Reply #7 - Feb 15^th, 2010 at 8:26am Drank a monster at the onset of a ch last night. The way it started i was petrified because it was painful almost instantly so i slammed a monster 3-5 min later nothing no pain no shadows i am amazed!!!!!!!!!!!!!
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: First Time here Reply #8 - Feb 16^th, 2010 at 12:05pm do you have a neurologist you are pleased with? what city are you in?
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bejeeber

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Re: First Time here
Reply #9 - Feb 16^th, 2010 at 3:06pm

travisk wrote on Feb 15^th, 2010 at 8:26am:

Drank a monster at the onset of a ch last night. The way it started i was petrified because it was painful almost instantly so i slammed a monster 3-5 min later nothing no pain no shadows i am amazed!!!!!!!!!!!!!

Wow - that's fantastic to hear. I was becoming a little skeptical about the energy drinks (since they hadn't ever come close to aborting an attack for me when I tried them), but this report has me remembering that there's almost no treatment that is guaranteed to work for everyone with this dodgy CH condition.

It's a voonderbar thing to see someone come on here and find out about something that'll bring them some immediate relief.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Newsh CH.com Newbie Offline I Love CH.com! Posts: 6 Bristol UK Gender:	Re: First Time here Reply #10 - Feb 16^th, 2010 at 6:03pm Travis, welcome, it feels good to be part of something so crappy, caffeine is the way forward for me as well but there are so many people with great ideas, views and advice on this site. We should all get together and rub our heads in unison. Good luck to you Newsh
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