Hi everyone,
Boy am I happy to have found this forum. I am a 27 year old female and have been experiencing CH's since I was 21 (the same time I was diagnosed with celiac disease, I always thought there might be a correlation but I guess not). It all started so suddenly -- at first I was diagnosed with migraines until 1 year ago when I was finally diagnosed with cluster headaches.I knew it was not migraine due to the symptoms but alas, many doctors disagreed. Luckily I have always taken Sumatriptan (after: Fioricet, Fiorinal, Axert, Relpax, Indomethacin) and that works the best for me. In the middle my doc thought I had Hemicrania Continua but since the Indomethacin didn't help she finally diagnosed me with CH. I have all the same symptoms everyone else seems to have (nights are the worst, my attacks are spaced about 7 hours apart, after which i am popping another triptan, usually about 4-5 in a 24 hour period) with 1 exception -- when I am having an attack I do not pace. I have to sit still in a quiet, dark room with an ice pack and wait for the meds to kick in.
My cycle usually starts every 3 months and lasts for 1-2 months. But guess what, I did not have a single attack in 2016 and i thought it would be my first pain free year until 7 days ago when my cycle began. Worst possible timing given the holidays, I am also travelling on Friday and have never done so before during a cycle so have no idea what to expect. Needless to say I am extremely disappointed. I am a drinker and am upset that my holidays will be spent in pain while the rest of my family will be relaxed and enjoying.
I haven't tried O2 or any other remedies -- any HELP or ADVICE or simply words of encouragement will be so very appreciated. Thanks in advance CH family. I am so glad I found you.

Sanaar,
       
Start here and read then ask a lot of ?

Medications,  Treatments,  Therapies Read up on the Vitamin D

Mark.

Before startin another round of "may-be" drugs, consider finding a headache specialist. You'll incsrease the odds of find both the correct diagnosis and the correct treatment.
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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. 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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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.

Thanks Bob! I am actually seeing a headache specialist, who did diagnose me with cluster headaches and kept me on Sumatriptan  50 mg (she had me try Gabapentin as a preventative but I did not feel so good after starting that). My job (public relations) and the city I live in (Manhattan) requires me to me extra aware at all times and the Gaba made me extremely dizzy and drowsy. I will try the D3 regime and hope for the best. Till then i will continue 4 triptans a day every 7 hours (on the nose, my attacks are like clockwork!!). Ugh :(

I believe I understad that you have tried one preventive med and it didn't work. Has you doctor other preventives? (Not at all unusual to have to try several meds to find one effective.)

sanaar wrote on Dec 20^th, 2016 at 1:05pm:

I am actually seeing a headache specialist, who did diagnose me with cluster headaches and kept me on Sumatriptan  50 mg (she had me try Gabapentin as a preventative but I did not feel so good after starting that). My job (public relations) and the city I live in (Manhattan) requires me to me extra aware at all times and the Gaba made me extremely dizzy and drowsy. I will try the D3 regime and hope for the best. Till then i will continue 4 triptans a day every 7 hours (on the nose, my attacks are like clockwork!!). Ugh :(

So your headache specialist is using sumatriptan tablets as a preventive? Normally the triptans are used as a CH abortive.

Have you tried some of the more common CH preventives like verapamil, lithium and topamax?