Hello friends,
I had some questions in mind, I hope you can help with them

1) The first thing is that my CH has reduced in severity and frequency now I'm only getting around 2 per day and they are less severe. I'm getting all the usual symptoms blocked nose, droopy eyelid but I'm not getting red and watery eye. So is it still a CH?

2)Painkillers like naproxen and few more like diclofenac don't seem to work in reducing my headache. Is it normal because they never worked.

3) I went to a neurologist and told him my symptoms so he said these are the typical symptoms of a CH but I can't have it because I'm a female and females never get CH, so I'm lying. But I was diagnosed with CH by other doctors(headache specialist) and they never said anything like females don't have it.

4)A doctor prescribed codeine but I have heard it's habit forming so don't want to try it unless it really provides some relief, do you know if it works?

That's all
Thanks

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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Absolutely agree with Mike. Your doc is not competent to be treating you.
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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.

Bob Johnson wrote on May 9^th, 2015 at 10:40pm:

Thanks for your time Bob. I'm not continuing treatment with that doc he treated me like a liar.

I agree with all the other answers regarding symptoms, meds etc.

I also share your frustration at being told you can't have CH because you are a woman. I've been there too. Have a look for one of my previous threads - I think its titled "what a waste of time" on the general message board.

My neuro couldn't even be bothered to listen to me any more as I clearly disagreed with his diagnosis, and he sent someone else to see me at my last appoitment. I was so angry about it, but it turned out for the best because his replacement was a woman and she totally agreed with me.  She spoke the same language (clusterish) as all the folks on this site,  and for the first time I really felt I was talking to a doctor who understands. She agreed to take me on her list, so the other waste of space has been dumped.

Don't waste your money or risk your health with pain meds. Follow the advice you've been given about D3, oxygen, prevetatives etc, but if you still need an abortive med ask for sumatriptan ( may be called imigran or imitrex) auto injections. They're brilliant.

maz wrote on May 10^th, 2015 at 10:07am:

That doctor was a total waste of time and money. I guess D3 and oxygen are the best options that I have got, The only problem is that I cant carry my O2 cylinder everywhere.

maz wrote on May 10^th, 2015 at 2:39pm:
The problem is that I'm allergic to the injections can't use them.

winner19 wrote on May 10^th, 2015 at 11:13am:


Sumatriptan is the generic drug name, with imitrex and imigran being brand names used around the world.

Since you're allergic to to it, I'd also be cautious about any of the other triptans which are commonly used to abort CH and migraines, e.g. maxalt melts and others. I'd always discuss this allergy with any doctor who prescribes you medication to abort a CH with pharmacists being a good backup as they are often more clued up than many doctors about drug interactions.

winner19 wrote on May 10^th, 2015 at 11:21am:


There are options around O2 portability including having one in the boot of the car and park nearby to where you are, one at work (where you can use it discretely), etc. What I'd also do when in cycle was to have a small cylinder that fitted in a backpack that I could carry around plus it had my other CH supplies like Red Bull, etc.

maz wrote on May 10^th, 2015 at 3:13pm:

I had told my doctor about the allergic reaction to sumatriptan, since it was severe he told me not to take it. I have tried 2 more types of triptan and got allergic reactions to them as well so my doctor is avoiding any type of triptan.

BarbaraD wrote on May 11^th, 2015 at 7:47am:

I'll ask my doc whether he can prescribe it for me, whether it's suitable for me or not. If he prescribes the medicine I'll let you know how it worked.