Hey there,

So I'm new to the site. I just got diagnosed with cluster headaches on aug 28th of this year. I use portable oxygen and maxalt.
I'm also writing a research paper for my writing class (I'm a freshman in college) on a community I am a part of and I chose to do cluster headaches because I am finding out that not a lot of people know about this horrific disease and how it can affect a person.
My teacher is letting me use blogs as a source and said I could interview someone on here and potentially use it in my paper. I may not use it at all, but I do have to have at least 1 interview with someone from my community. Please note that your screen name WILL be omitted and only "jane doe" or "John Doe" will be used to reference you.

My questions are:

1. When were you first diagnosed?
2. How often do you experience the cluster headaches during a flare?
3. How do you describe the pain? Please use as much detail as you can!
4. What makes them better/worse? (For example, I noticed that artificial sweeteners will cause a headache within minutes to an hour after consuming it)
5. Does your insurance company cover the cost of your treatments?
6. If so, how expensive are they?
7. Do you use oxygen as an abortive treatment for the onset of the headaches?
8. If so is it always effective?

Thank you so much in advance for any help you can offer!!

Oxyrockin wrote on Oct 29^th, 2014 at 2:07am:


Here's where you're going to run into trouble with this bunch. We're all different and treatments are all different and we all react differently. The archives are a great source for reading up on this...

The google site that Aussie suggested is really an eye opener.. But it's hard to watch. And if you've ever seen another Clusterhead go thur one of these... well that's hard to watch also - it's like looking in the mirror.

Most of us were diagnosed after going thru a lot of other diagnoses. For me it was harmones, eyes, and a few other things... then we hit on what it actually was.

I'm not sure what a "flare" is.. if you mean an episode.. that varies with the person. For some it's a couple a day (or night) for others it's 10-12 a day. Then there are the chronics.. we're the ones who don't go 30 days without one.

In describing the pain... I had a child without benefit of any drugs.. I'll take that any day over one CH.. I've stood on my porch and screamed at God to Kill me at times..

We all have different "triggers". Personally the only thing I've ever found to "trigger" mine is the barometer. Foods, smells and nothing else seems to bother me. At one time beer did, but even that doesn't bother me these days. Just the barometer is constant. Let it go up.. and Boom!

Insurance is something we've argued about for years. they want to argue about our treatments (Imitrex and O2 especially). CH is expensive and a lot of us have spent a fortune on meds and treatments for some relief.

About 75% of this board swears by O2, but only if used RIGHT and with the right mask. A lot of doctors (most of them) don't really "get it" and neither do the O2 suppliers. I use a Demand Valve on my tank (which delivers O2 up to 60 liters a minute) and get relief in minutes IF I get to it at the onset.

And NO, nothing is ALWAYS effective.

A lot of us have gone on the D3 regimen (see Batch's post for that) and have had great results. I've been pain free for over a year now (after being chronic since 97).

My best advice to you is to read read read here and you'll probably find more confusion than you ever wanted to know. But we're ALL different .. that's the only Positive thing here. We suffer the same malady, but we react differently to different things.. (I couldn't take Maxalt any way - it makes me sicker than a dog). We all have different ways of coping with this and we come here because our families and friends and co-workers DO NOT understand what we go thru.

good luck with your paper. 

"Screw what other people think,when I'm experiencing a headache I could give 2 shits less about what other people think."
I think that goes along way to answering question #3.
My neuro tells me one of his CH patients tried to jump to his death from a fifth floor hospital room window once.
That should explain a lot .

A  comment on your present treatment: Oxygen is hardly convenient when your in class, etc. I assume that's why the maxalt but, for Cluster, sumatriptan is the preferred abortive because of its fast, potent effect.

It's critical that you take an abortive at the earliest sign of an developing. Delay to see if it's the real thing will gretly reduce the effectiveness or not be effecive at all.

You should, now, be using a preventive (Verapamil being first choice). The maxalt, is an abortive to kill attacks which get by the preventive med but PREVENTING attacks is the first line of defense.

Print the PDF file, below and use to discuss options with the doc.
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You'll be living with Cluster for a long time and it wold be best to work, if at all possible, with a headache specialist. Most docs, even neurologists, receive meager training re. complex headache disorders.
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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 or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Read/learn! We need both the medicine and emotional strength that comes with knowledge.


These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Finally, if you plan to stick around:

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. (This will add your location, just below your name, every time you post a message.

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Your questions:
1. age 35
2. Never had regular cycles; they hit randomly.
3. Classic descriptions you read in any source: intense, focal pain, sometimes radiating into the lower jaw (mimicing dental problems), in the eyes, sometimes the temple.
4. Never found foods, etc. but always using alcohol and exposure to solvents during an active period of attacks.
5. yes.
6. So many years ago that cost figures not worth digging up. (I'm 78 and have aged out of attacks for 10-yrs.)
7. Tried few times but inconsistent benefit.
8. No.