I'm 26 and I've been dealing with clusters for 7 years misdiagnosed as migraines. I never really felt like migraines fit what I was dealing with. The only thing I have ever found to help is stadol nasal spray but am finding most doctors won't prescribe. I've tried lots of meds and a few like indomethacin made them worse. Wondering what advice you might have as things to try. I've tried Topamax, Depakote, Verapamil, Indomethacin as prevents. I've tried Imitrex, Axert, Zomig, Amerge, Maxalt, Frova, Prednisone, and Ketorolac as aborts. Don't really like the stadol but it makes the pain bare-able.
Thanks in advance,
Valerie

You might also want to share the dosages of things you've tried like verapamil and topomax. Many CH'rs are often underprescribed for these meds, and working with your doctor on a higher dose may bring better results. 

O2 is the way to abort!

Before venturing into treatments, the central question is: are you working with a headache specialist? Without this special set of skills/knowledge in your camp, treating CH can be a crap shoot.
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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 or ; On-line screen to find a physician.

5. 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.

6. 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.

Welcome to the board. It'll start sounding like a broken record but do look into oxygen. 32 years of these damned things and nothing comes close. My mother in law has started sewing "tank tops" these cute little skirts to put on oxygen tanks to make them less imposing. Because on cycle..I am NEVER more then a few feet away from an oxygen tank. It's that scary effective!

For a prevent you haven't mentioned lithium. Don't let the hollywood stereotype of a drooling zombie scare you. The doses we use it at are relatively low. I was a cop for 30 years and even my beat partners couldn't tell when I was on it. It blocks 60-70% of my attacks if I am strict with avoiding my big triggers....for me that's alcohol, sustained stress, and sleep cycle disruptions. Triggers vary big time from person to person, take sa lot of trial and error. (And DAMN the errors hurt!)

Keep asking questions, very few doctors on this board but we have a wealth of real time exprience.

Joe

[quote]Nighttime sufferers, trying to avoid stimulant effects of caffeine, have had enough success with melatonin that it seems worth a try.  Sleep through the night, herbal, cheap etc. [/quote

I'll ditto that! I started taking 3-5mg of melatonin to no effect. Upped it to 15mg/night, and it works very nicely. I think Bob posted an article on its effects in the 9-18mg range? My headache specialist agreed, too. So it works and a doctor agrees. Not bad...a two bagger! lance

Quote:


ABSOLUTELY!!!!!!!!!!!!! 02

ABSOLUTELY NOT Stadol! 

yes,  please DO tell us what dosages of those other meds you are on.  We have heard from new folks whose Dr.s have them on such low dosages of verapamil, etc. that we all sit here and shake our heads at those Dr.s stupidity.   Of course it isn't working....dosage is far too low.

Same thing with 02.  Some Dr.s prescribe 02 reluctantly.  And then they give a scrpt for 02 to be delivered at 4 or 6 lpm.   Most of us here have a regulator that goes to at LEAST 25 lpm.  and can abort in a very short time.  Those with 45 and more can abort even faster.


Linda

Mosaicwench wrote on Jun 28^th, 2010 at 11:21pm:


My treating neuro is like minded...I've been up to 960-1040 mg/dy. She didn't blink and I've had relatively few side effects.....

Now, the question is...anybody...WHY can a clusterhead tolerate what would put a "normal" on the floor...UNDER the bed??????

shaggyparasol wrote on Jun 28^th, 2010 at 10:50am:


Shaggy I want you to know that I think I love you! Tried Monster "at first twinge of an attack" and so far no cluster today! Which is awesome news cuz I can't tell you the last time I was PF from 10am - 3pm. Normally I try to avoid caffeine but I'll definately be trying this again!

Get yourself O2. As much as we always talk about the effective abort quality of oxygen, we don't often enough emphasise the phsycological effect it has.

For me at least it is an extremely relaxing thought that I have something in the other room that will almost universally kill an attack within 5-10 minutes.

If you have tried all conventional prevents to no avail check out alternatives on clusterbusters.com. The only treatment that has given me relief after years of sometimes 30 useless pills a day.