Hello compatriots in pain,. 

This is going to be a long post,. last night was a nightmare and I think this is more a therapeutic post than anything else so bear with me. (I feel awful burdening friends and family with my sad story, so this seems like a good alternative   Not sure what I'm expecting but just want to moan for a bit.

First off ,. thank you so much for creating this site!!!!

I came across the site many years ago but never joined or posted. But its given me some real comfort to realize that my seemingly hopeless case is not some abnormality.

My story -  The first time I experienced these migraines (when I hit about 30) I actually thought I might have a brain tumor or something because I had no idea such a debilitating condition could exist. It scared the heck out of me and at that time I went to see a few doctors who really had nothing to say other than keep a diary. 

The last time i went through this was a good five years or so ,. so I'm only episodic , thank god ... i really pray for all the chronic sufferers out there I cant imagine how tough that must be.


My symptoms.. ill try and put it in point form
-   it would generally start with me feeling tension in the base of my neck ,. and just an over 
    all  stuffy kind of odd sensation in my head .. not painful just tight., that's when I start to panic. Its especially  troubling when this happens whilst I'm sleeping .. I wake up again not in pain but with this odd feeling
-   At this point i try to abort the process ,. my only real options are to take my OTC painkillers and jump in a hot shower
-   tension builds , my left eyeball feels a few sizes too big for its socket and its on fire, oddly I imagine this is how it would feel if i decided to put out cigarettes on the back of my eyeball ....extreme tension starts down the left side of my neck accompanied by this electric pulse along the ridge of my eyebrows,.  this is an exquisite feeling of pain that i cannot put into words, like a very fine bottle of whoop ass being opened on my brain ....but
     you know what I mean I'm sure.
-   I want to cover my eye with my hand and hold my neck but at this point they are so sensitive that even a feather touching
    them just intensifies the pain.. sometimes i loose it and go kamikaze and figure ok well i don't care lets try and
    override my pain sensors by massaging them... 90% of the time this is a very BAD idea lol but I'm DESPERATE and 
    semi babbling at this point
-   Often I can tell when its almost over because i start to get real shaky,,. i think this is the point where the pain has basically overloaded my system and I start to just shut it out , if that makes any sense,. sometime i get a weird pins and needles wave over my body then boom it winds down real fast and within 5-10 mins I'm 100% normal again but tired.... that always amazes me , I thank god ,. then wonder if all that really just happened because its surreal in some ways to go from one extreme to another so quickly
-   After effect is that my left eye is so exhausted it is droopy 


Last nights schedule:
- 8:30pm watching a movie felt it come on, immediately stopped the movie took an ibuprofen painkiller and jumped in the shower, luckily i got it in time so no pain.
- 9pm went to bed , dreading what was to come..
- 11pm feeling funny , migraine starts , intense but very short only about 30-40 min's then subsides
- 1:30am up again  same thing again...
- 3:30am rinse and repeat ,. too afraid to get back into bed, fall asleep sitting up on the
  couch
- 5:30am up again with migraine,. again a short one .. off to work 6:15 feeling kinda normal

This is not the norm , the day before I had a constant pain (intensity up and down)  from 5pm till 4am.. this drained me.  Its been going on about 2.5 weeks now for this cycle,. I am hoping its coming to a close not as it seems to be dying off in intensity,. even last night (at least they briefer than normal).

That's pretty much my sad state of affairs at the moment. I have not considered taking anything more that OTC painkillers although i am wondering about taking oxygen. I don't like the idea of taking pills so I really want to find something i can take without wondering if I'm actually doing myself more damage in the long run..

Well thanks for listening to my moaning... I wish all my fellow sufferers hope and please know when your pacing around in the middle of the night there's someone else like me doing the same thing somewhere! GL 

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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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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Avoid other medical types unless the assure you of much experience with complex headache disorders. Even neurologists have rather limited education/experience with headache.

Another impotant reasons for using a headache specialist: There are a number of serious disorders which mimic Cluster but which are not headache disorders. You need skill in sorting the wheat from the chaf.