Hello all.  I have never been on a forum, or message board so I am unsure of how all of this works.  But I would love to introduce myself.  My name is Katy.  I am a 32 year old stay at home mother of 2.   I've suffered with "headaches" for several years.  I was finally diagnosed with migraines, roughly 7 years ago.  Nothing they prescribed me helped.  Until they gave me imitrex injections.  I randomly got the shingles at age 28 and they misdiagnosed it bc of my age. So I ended up being treated for residual pain afterward with Neurontin. When I was on Neurontin, I had NO attacks.  Not a one.  So I asked to stay on it and my GP allowed it.  Then in May of 2013 I found out I was pregnant with my 2nd child so I had to stop all meds.  I was fine throughout most of my pregnancy.  Only a few attacks.  But I had my sweet girl on 1-16-14 and about the end of february the hateful pain returned. It was immediate and INTENSE.  I was at the grocery with my husband, and the familar burning sensation started in my left nostril. I knew what was happening so we headed home to administer my injection.  I'd done a bit of research on Clusters over the years.  Migraine fits next to none of my symptoms.  I get a burn in my nostril, like a hot poker is being shoved up my nose. I have light sensitivity, I constantly press on my eye socket on my left side.  My left eye gets really blood shot and my eye and nose water/run just on that side.  I get KNOTS along my left shoulder and shoulderblade. I have pain behind my eye, and my teeth & jaw hurt.  Finally my GP diagnosed me with clusters, as I was having pain the same time daily and suffering several attacks daily and suddenly would be fine just as suddenly as I was in evil pain.  I hae read into a few different treatments, and I decided to try a few.  I am currently on Neurontin, xanax, and I have an imitrex injection kit.  I also take a Taurine supplement twice daily and bought D3 IU in 5000mg.  I only got that one yesterday and I am curious as to the usefulness of it, how it works, why it works....etc. I am fortunate to have a supportive husband and family, but truly they can't possibly understand what it feels like. And I commonly feel like a failure as a mother and wife bc I am unable to do the simplest of things.  I realized recently that I have simply Accepted the constant threat and dread and the ache that never leaves my face as my lot in life.  I realized this last week when I got a plain old run of the mill sinus headache.  I felt pain on my right side for once and was baffled that I had just gotten use to feeling pain on the left side like it was normal.  So I am currently on a mad crusade to find a cocktail of whatever it takes (hopefully herbal or natural supplements) to feel normal for a few days here and there.  I am NOT a pain killer type gal... I would prefer to avoid drugs, I only take the few things my Dr prescribes.  I am looking forward to meeting other people who understand and would LOVE to hear any tips and stories that you all want to share! PF wishes to all! =)
~Katy

When we are in pain and deeply frustrated the temptation is to try a variety of meds an other treatments, seeking relief. The problem is: if you pain is relived you won't know what has done the job. You're left having to take everything lest you lose control.

Self-diagnosis and self-treatment isn't a wise route.

Headache is a far more complex areas of medicine than we are lead to believe. There are many disorders which mimic Cluster but which are no headache disorders.

Suggest that you seek a headache specialist who can do a good diagnostic work-up and see where that takes you, treatment wise.
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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.
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Also,

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.

I am new to this also. I do not suffer from this, but my husband does. I feel so helpless when he is suffering. hoping to get some encouragement and some ideas for hope in helping him through this.