Hi Russell here. I have been suffering CH for a little over 8 years. I don't respond to prophylactics, or O2. Imitrex is effective but expensive and limited by my insurance (4/month) so most of the time I go somewhere away from people and sweat it out.

I've had some success with Steroids, but the relief time gets shorter each time I go there (Down to just a week or two now).

I'm just here to see how other folks cope and help if I can.

Looking forward to talking with like minded (or out of their minds) people.

It's hit and miss to try and work thru such situations withou working with a skilled doc. If at all possible;

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.
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But, when the usual main stream meds don't work it's time to consider that the issue may not be Cluster.

See:     Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

Hi Russell

A couple of tips:  Continue to collect your allotted 4 per month even when you are not in cycle. That way you'll have a stockpile when the beast comes along. Also,Do you have imitrex injections? If so, google "cluster headache splitting injections" There is a you tube clip of a guy in a cap showing you how to get 2 doses from one injection. Most people find 3mg is enough and they don't need the whole 6mg.

How did you take your 02. For it to work on CH you must have a flow rate of at least 15 litres per minute (25 is better) and a non re-breather mask. If you get either of those wrong then it won't work.

Hope this helps
Maz.

It's very common, with Cluster, to have to change both meds and doses over a period of months before finding the combination which works for you. It's not a one-fix kind of disorder.

See the PDF file, below. It makes it clear that patience and and a skilled doc are essential

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Thanks Bob for all the links. It comforting that you aren't alone out there.

Hi! I'm new too! Welcome, and congrats for being so brave to make it through 8 years, you're really strong and I bet nobody knows how you try each and every day!

{ big hug }

They're right, give o2 another chance!
- non-rebreather mask
- higher lpm ( actually I've been rationing my tanks, and realized maybe that is why i only have 80% success rate with o2, because I use almost half the flow rate, which does work a lot of the time, but not all the time. I need 8-13 generally, but now I will try higher too, I see here 15-25 works best, you can try it with me! )
- 100% tanks only, the 80-95% generator just beeps and makes me sad. lol.

rotating ice packs, always one lying around here somewhere, heh.

good luck! hang in there, you can do it!

:)

[edit: to say 15-25 lpm is best! :) ]