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New here, HELLO (Read 846 times)
mmcmichen
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New here, HELLO
Jan 6th, 2014 at 10:00am
 
I had my first cluster headache when i was 19. I had it while hanging concrete ciding from a ladder. It was terrible. only lasted about 20 minutes. Didnt have another one until I was in my early 20's. I was a manager at a fast food place. I had them for a month straight. Almost lost my job from them.

Didnt have them again until a year ago when i was working in savannah ga in a warehouse. This time they almost killed me. was on the way to work early in the morning and had one while i was driving. I quit my job and moved back home.

One time I had one in the dentist office, while I was getting my tooth pulled... the next 45 minutes were the worst in my life.

I did however figure out what my trigger was.  Fumes ----  I dont know what triggered the headache when i was 19 but the rest of my cycles were triggered by exauhst fumes. When i worked at wendys, i was around the grease vats and they would only filter out about half the fumes from the burning grease and when i worked in the warehouse in savannah ga, diesel fumes were causing them. They were operating diesel fork lifts inside the plant.

Ive been on all sorts of medicines. They gave me some shots that i was suppose to inject myself with but they were 200 per script. I had two kids and couldn't afford them. I was allowed to come use the oxygen at the hospital whenever I needed but by the time i got up there and checked in, it was over.

I found my trigger and adjusted my life around it and havent had anymore since i moved back from Savannah GA. I do not   stay around any kind of fumes for a prolonged time.

Ive been cluster free for over a year and I hope it stays that way... god please dont let them come back..
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Bob Johnson
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Re: New here, HELLO
Reply #1 - Jan 6th, 2014 at 10:51am
 
Glad you have come to the surface! First,
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location
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Since you are not in a cycle with attacks coming  regularly, it would be a good chance to: learn as much as possible about Cluster; get lined up with, if at all possible, a headache speciaist.

The goals would be to get a firm diagnosis that you have Cluster (much confusion in some situations); get the doc to line up a treatment program so that you will be ready for the time when attacks appear; and, to have a working relationship before an emergency situation appears.

Reading regularly here is a good learning tool but you might also explore:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.
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Explore the buttons, to the left of this page.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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These are sites which you can explore as you have time and get some good background understanding about Cluster.
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Encourage you to not start some programof self-treatment until you have a firm diagnosis from a skilled doc. There are many conditions which mimic Cluster and it's important to know, clearly, what you are dealing with

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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. 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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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« Last Edit: Jan 7th, 2014 at 9:00am by Bob Johnson »  

Bob Johnson
 
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wimsey1
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Re: New here, HELLO
Reply #2 - Jan 7th, 2014 at 8:51am
 
Bob's right, you do need a firm diagnosis. But, assuming you do have clusters, don't be too quick to accept fumes as your only trigger. This is tantamount to saying fumes cause CHs which is not true. I know you categorized fumes as a trigger but CHs come and go pretty much as they choose. If we could just nail down every possible precursor we wouldn't need abortives, but we can't and we do. Good luck and God bless. lance
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