Hello everyone. I'm new to the boards, but I wanted to introduce myself and say that I'm so very very tired of this dance. Don't get me wrong, I'm not a chronic sufferer, but any level of episode is more than enough for me.

I'm now 37 and I've been dealing with these things since I was 6 or 7. I've had so many MRIs, CTs and other tests that I'm surprised I don't glow in the dark! I was finally correctly diagnosed when I turned 23.

My episodes are actually down in the last few years with only 2-3 episodes a year and each episode lasting for 1-3 attacks. The biggest help for me lately has been my new fiance. She practices a special therapeutic massage technique known as SET therapy. While it doesn't prevent an episode, it definitely shortens it dramatically.

I'm just here for support/community and to converse with others who know what I'm going through.

Good luck to you all and remember that while we may not be able to kill the Beast yet, we are here to fight it together.

Hi theacerbic1,   [smiley=wave.gif]
We all know what you go through. You have come to the right place for help and advice. Read these boards thoroughly and you will find many hints and tips.

We are not able to kill the beast, but we can lock him up!  No doubt over the years you have tried many different meds but you  don't say what you have tried, so you may already know this. You will find posts about a vitamin D3 regime. Sorry I can't post a link (computer dunce) but I'm sure some one else will come along and do it for you. This regime has had fantastic results for 80% of those who try it. It's simple, cheap (especially if you shop around on line) and good for you even if you didn't have CH. You will need a blood test to be sure you have reached the right levels, but it is entirely possible to become completely pain free. Please give it a try.

Also, on the left of your screen there is a tab titled "oxygen info", highlighted in yellow. Oxygen is most peoples fave method of aborting attacks. BUT, you must administer it properly - all the info is there.

For a quick fix in an emergency, try chugging a red bull, really fast at the first sign of pain. The combination of caffeine and taurine in a sudden hit often does the trick. It doesn't work for every one, but many CHers swear by it.

Try to get your doc to prescribe sumatriptan auto injections, (may be called imitrex or imigran where you live). That will abort an attack in a few minutes for most.

Finally, keep coming here. No matter how wonderful your supporters are, and all our supporters are, they cannot possibly understand what you go through unless they feel it for themselves, and I wouldn't wish it on my worst enemy. Here you have a whole new family - the Clusterheads - and we will listen to all your rants and raves without complaint, and with complete understanding.  It often helps to talk, and not have to explain.

Hope this helps.
Maz.

Thanks Maz. I will definitely look into the D3 regimen. I came across this site a few years ago, but never took the time to reach out. Now I am.

Thank you again and I look forward to sharing and listening with everyone.

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. Follow this line and your ID will show up below you name at each posting you make.
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Would be helpfu, before you start any self-dirtected treatment, you would give some background infro: what kind of doc is treating you?, what has been your history of meds used--name, dose, duration of use, etc.

Unless we have some focus on your history, we're left to wandering around in directions which may not be of help to you.

Thanks Bob. I have updated my Location field in my profile.

I honestly have given up on trying most anything. I haven't seen a doc in years for this. I tried Imitrex right after it came out to no avail and I've done a number of other things.

Recently I've been trying more "homeopathic" remedies like melatonin and valerian root and even specialized massage therapy to varying degrees of success  :(

I need to do a much better job documenting what I'm doing and also keeping track of the pain levels of each headache. This should be easier now that I've found the Kip Scale!

Any advice or guidance is greatly appreciated. I've dealt with this for 30 years and just figured I was stuck with the hand I'd been dealt...

In the last 20-yrs there have been sufficient changes in treatment Cluster that a good review would be useful. In the meantime, see the PDF file, below. Lists the current medical treatments and some evaluation. So, compare your experience with this list as a starting point.

If it's a literal truth that none of the standard meds work for you--then we have the potential that you don't have Cluster but, perhaps, one  of a number of disorders which mimic Cluster. See:

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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The other major concern is that so many docs, and this includes neurologists, have meager training in headache disorders and most not much useful experience.

If you have the option:

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Painful to read research shows many folks taking several years and multiple docs before they find the skill they need. Certainly, many of us have had this experience.

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Welcome to the battle-room, theacerbic1.

Agreed, can't kill it yet, but we can keep on keepin' on, together.

Sounds like you're on the down-hill side of the slope, as myself. My episodes are quite random now, after receiving a predictable a$$-whipping for the first 18 years, including when a CH will hit. But I'm not suffering through 3-4 months at a time like I was years ago...a couple weeks, with some PF D/N intermingled with 45 minute battles, instead of 3-4 hours. I've never used any RX for preventive/abortive...just have my own ways to cope for the most part. PM me if you want to learn some techniques...I posted a little of what I do already on the board, but I can link you to it.

Hang in there, cuz I think we're both through the worst part of it now. I've seen this side of CH since 2008, so it's not a short-lived relief from the same old clusters I was so accustomed to. I feel there is a brighter side of this that some of us can and will experience...hopefully you'll be there beside me...hope many others will reach this stage as well...would to be nice to have that to look forward to, if only we could understand what makes up or triggers the transition...that would be ground-breaking, or beast-busting, to be more specific.

May many more PF D/N be coming your way!!!