Hi All,

Discovered this site a couple of weeks ago and it is very informative.

Just wanted to share my story with all you fellow sufferers, so here goes....

8 years ago I can still remember lying in my bed being awoken by this excruciating pain in my head like no other I'd felt before, basically behind my left eye and when I feel around my temple area on the left side of my head I can feel a swollen vein, I was originally scared of what it was however I remained headache free for a few days, then it all started to go downhill!!!.

From there I would get at least 1 headache per day upto 5 a day and yeah, they were bad.

Times were tough for me then and I had a lot of stress going on, I was 20 and just started an accounting career so I had exam stress and money stress to cope with and thought it would get better, I went to see a neurologist who diagnosed paroxysmal hemicrania and gave me indometacin which had absolutely no effect whatsoever.

As time progressed my situation got better, I dealt with the headaches as and when they happened and the headaches went into remission (and were in remission for approx 3 years), I started enjoying my life without the burden of a day/night being ruined by headaches.

2 Weeks ago.......... BOOM!! started again a lot worse than they were, I'm getting at least 3 per day not to mention that I haven't had a decent nights sleep in 2 weeks, my record number of attacks whilst I'm sleeping is 5.

Been to the Doctor who gave me indometacin again which again, hasn't worked so I've decided that I'm going to try out the strategies for relief on this forum and find the one which works best for me in the hope it goes into remission again.

Just wanted to introduce myself, and my story.

Regards,

Mike

hey Mike Barry here.sorry to here this man..yes these things are devastating..no words can describe this kinda pain.and to be man,and have something like this drop you in your tracks is awful,embarrasing,and unlike anything anyone can experiance.God Bless ya brother..hope you find help..Barry

Welcome Mike. Glad you found us but sorry you had a reason to. I'm not a doctor and can't diagnose your pain but if the indomethacin is not working you probably don't have paroxysmal hemicrania. If you can, try to find a doctor/neurologist the specializes in headaches. On the left side of your screen is a yellow button 'cluster quiz'. Taking the quiz can help you learn about your condition. Please keep us in formed. We want to try to help you.

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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Read the last para. of this before you make a decision

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.
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Why it's so important to get off to a good/accurate start. Many conditions appear to be Cluster but are not: need to get a clear playing field right off the bat.
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Your changes of getting the problem under control  are very good. It does take patience to: get a good diagnosis; and then try a variety of effective treatments until the one which works for your body is identified. Just a forewaring that patience & persistance are life skills for us!
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Read and learn: boxes on the left; messages, of course;

These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.

Hi Mike , If indomethicin isn't working then you don't have PH, because indo should work absolutely. You most likely have cluster headaches as the two are often confused. Ask your neuro for imitrex auto injections. It comes in pills and nasal spray too but these take too long to get into your system. The injections are easy to use - just a button to press - and will abort the worst CH in about 5 minutes.

Often, diagnosis relies on trial and error. Each drug works for it's own kind of head ache, and will not touch the other kinds. If imitrex works then you have CH.

Also ask for oxygen, but, this is important, You must have a high flow rate of at least 15 litres per minute(25 is better) and a non - rebreather mask, and get on it at the first sign of an attack. If you get either of those wrong then it won't work, but get it right and it will also relieve a bad one in a few minutes.

Some times when you are asleep, by the time you wake up the pain has ramped up too high, so that's when I fall back on my imitrex injections. I also never leave the house without them. They are my new best friend.

I hope you find what you need soon,
let us know how you get along.
Maz.

Hi Mike

With uncertainty about your paroxysmal hemicrania diagnosis with the lack of response to indomethacin I too strongly suggest you consult a headache specialist to get a definitive diagnosis.