hi I'm shell..I have been suffering from cheads since I was 17 and I am now 37..I have been to my doctors numerous times over the years and have always been told that they are stress headaches even though I tell them that I am not stressed. I actually had no idea what I was suffering from until I described my symptoms in a pub one night and a man with whom I shared a mutual friend said it sounded like cluster headaches and I could find information online. I looked the very next day and couldn't believe how the descriptions of these terrible things matched exactly what I had suffered from for so many years. I feel that compared to some of the horrific stories I have read that I have had it quite easy but I obviously do not feel that way in the midst of an attack..I find that alcohol is the worst trigger for me and try to abstain completely when I am in a cycle of attacks. I generally suffer during the night and generally have 2-3 attacks if I have drank alcohol. I am currently in a cycle and have just started a new job ( probably not the best time ). My new job is more physically demanding than my old job and have found my attacks occuring more often and increasing in severity,I had 5 attacks last night and although I have not been in pain today I can still feel the tenderness on the top of my skull and down the right side of my face. I've never noticed this before and wonder if anyone else has this?

First, 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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Your opening statement restates the experience of far too many of us: docs who have poor training in treating complex headache disorders. Right off the bag, urge you, if at all possible,to find a headache specialisy (NOT a  neurologist).
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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.
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Get a good work-up before you start using any treatment. The doc needs a clean slate for he work-up and he needs to exclude some important conditions which mimic Cluster but which are not headache disorders.

While starting to find a doc, etc., read head, buttons left, plus the messages.
And,
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 shell, and welcome,
Like Bob said, it's always best to check in with a headache
specialist to get a proper diagnosis. As for alcohol, normally
the first sip of alcohol will trigger an attack in most folk, so
your attacks coming during the night seems to me that
alcohol isn't the trigger for you.

Cheers, Hoppy.

G'day Shell, and if you think alcohol is a trigger then you're welcome to store it at my place until things improve.

This is a free service along with all the help and advice we can offer.

Welcome home.

Hi. I probably didn't explain myself very well. If I go out and drink I usually get an attack within an hour or two of drinking and also get maybe 2 or three during the night aswell so I try to abstain from drinking and that usually does the trick however in this cycle I am getting 3-5 during the night even though I'm not drinking and they seem to be more severe and leaving tenderness all the next day. :-)

Hi shell,
Their is one thing you can try if you haven't tried already,
that is Melatonin, you need to take 5-15mg 2hrs before
going to bed, this is known to keep the beast at bay
during the night for lots of us cluster heads, it can take
a couple a weeks to kick in. You can buy them at any
health food store or pharmacy if your in the US, otherwise
you can get them on line from Biovea.

I note your in the UK. You could give Ouch a call
on 01646 651 979, and they could put you in touch
with a headache specialist in your neck of the woods.

Cheers, Hoppy.

thanks will give it a go...at this point I will try anything :-)

With the Melatonin you need to get the regular ones,
not the slow release as they don't work as well when
it comes to CH's. Also, have you tried Imigran 50mg tabs,
you can buy them over the counter at your local pharmacy.
Take one with a hot cup of coffee at the first sign of a CH,
and its known if you take one before going to bed can also
keep the beast at bay, but this counts as part of the
recommended daily dosage.

Hoppy.

does it have to be coffee and if so why?? the only reason i ask is cos I don't react well to alot of caffeine.. not so much the ch's but i tend to get very shaky if I have too much.. I usually limit myself to one coffee and one tea a day

Hi Shell,
No, it doesn't need to be coffee, any drink to wash it down
is fine, coffee is just my preferred drop lol.

Hoppy.