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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › NEWBIE IN THE HOUSE

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NEWBIE IN THE HOUSE (Read 844 times)

glades250

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southwest florida

NEWBIE IN THE HOUSE
Apr 11^th, 2009 at 1:17pm

Hi everyone. Sorry we got to meet like this huh? I live in SW Florida. Been a victim of CH for too many years. Of course out of site out of mind. But its back. Stress in my life has decreased by 80% happy to say for the last 6 years. Since then my attacks have chilled out to about every three years instead of every year SO FAR.

I just recently came down with a bad cold and that seemed to trigger my attack. Cold air KILLS ME and seems to trigger an attack. Cool air blowing in my face is murderous. Imetrex has been my saviour. But insurance only leaves me with choosing which attack to treat. I'm gonna try the Imetrex tip posted on this site and spread out the med. Hope it works. I'll do anything!!! The next best thing is Valium. Which I only get when I can't stand the pain and go to the ER which I've done a few times. It don't work like triptans but it mellows me out and sharpness is not as severe. HOT STEAM is my best friend. It gives me some relief. I've taken my pepper spray, put some on my finger and snort it. OUCH!! But it seems to do something to relieve some of the edge. My friends think I'm nuts. I tell them that getting ran over by a semi would help ease the pain too. Haven't got there yet. Well enough about me ramblin on. You know the pain. My prayers are with you all and pray for a friggin cure. Rrrrrr! I'm so tired of it.

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: NEWBIE IN THE HOUSE
Reply #1 - Apr 11^th, 2009 at 1:37pm

Sending along a couple of lists of the most current treatments. A good option to Imitrex is zyprexa (Olanzapine) in the Rozen article. For many of us it will abort an attack in 10-minutes and on a per dose basis is less then Imitrex.

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

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

Bob Johnson

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glades250 CH.com Newbie Offline I Love CH.com! Posts: 6 southwest florida	Re: NEWBIE IN THE HOUSE Reply #2 - Apr 11^th, 2009 at 1:43pm Thank you very much. LOL. You show more concern than my DR. Thanks again.
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Linda_Howell

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Re: NEWBIE IN THE HOUSE
Reply #3 - Apr 11^th, 2009 at 2:09pm

because what we need is a vaso constrictor (that's what Imitrex does) the majority of us find cold (a vaso constrictor) to help somewhat. A few find heat better but personally I can't understand why... since heat is a vasodiolator. YOU do whatever it takes to find relief.

You don't mention oxygen. Please check out the 0xygen link to the left in yellow. I can abort an attack in under 10 mins. sometimes and 02 is safe, cheap, no side-effects and it works for about 75% of us.

Hope that this cycle is short and you'll be PF for another 3 years.

Linda

Hurt people.....hurt people. Think about it.

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: NEWBIE IN THE HOUSE
Reply #4 - Apr 11^th, 2009 at 2:20pm

If you want to cast about for a better doc:

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

; On-line screen to find a physician.

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

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.

Bob Johnson

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glades250

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southwest florida

Re: NEWBIE IN THE HOUSE
Reply #5 - Apr 11^th, 2009 at 8:09pm

Thanks again for the info. I forgot to mention the oxygen. When I've admitted myself to the ER, they gave O2 on top of injections of pain meds. I have sinus problems and the air flow coming out aggravates it worse. Its like I have an exposed nerve in my sinus or something. Kind of like sensitive teeth when cold or hot touches it. That sharp ice cream brain freeze multiplied by 10000. I don't know why but cool dry air triggers. putting my head over a pot of steamy water with a towel wrapped around my head gives me relief. I think mostly for the sinus part of it. Not so much the CH. I go to a ENT doc Thursday. I've gone to three different docs. One of which has been the most helpful in all fairness. Six years ago when I first tried Imetrex, he gave me a script which insurance would only give me so much. He gave me all of his samples from the office left by the distributors and called other Dr friends who gave me all there Imetrex. That got me through a miserable five weeks.

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