hi folks...I have been suffering from headaches now for 5 or 6 years. Initially given a wrong diagnosis of sinus trouble, I basically accepted that I would be dealing with this about twice a year, and tried to pain manage with ibuprofen and sinus relief products. As you all know, this does nothing for such pain. I even tried oxycodone, (from a friend), which also did nothing for the pain. I had heard about CH, but just figured this was a seasonal allergy type problem, so I just lived (loose term) with it. Brutal. Unfortunately, I started to get an attack about a week before vacation, (it is usually earlier in spring, thought I got away with one) and started searching for answers about eyeball headaches. It appears I have all classic symptoms. I think this attack was the worst ever, maybe elevation? We were in the Adirondack mtns. Anyway, I have an appointment with gp next week for starters, not the same who diagnosed sinus.
When the headaches finally disappear, it is like being born again. The next few months will be bliss, until that first sharp pain in the eye, nose or cheek. I am starting to feel a little better now, and should be ok til November or so. I hope.
Thanks for listening....will post after doc visit.
PoconoKevin

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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Unless you can confirmthat the GP has good experience in treating headache, suggest you drop the appt.

Cluster is such a minor case for most docs that they have litled training/experience.
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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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Apart from needing skill in treating diagnosed Cluster, making the initial diagnosis is not simple. Following is not to panic you but to make the case that we need to be working will skilled docs.
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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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And this last reference should make it clear that this is not a do it youself condition when it comes to both diasgnosis and treatment.

Thanks for the reply Bob...I am going to GP for other reasons, and to get direction for the headache problem. I do understand no one here diagnoses, nor should I, but after taking the CH quiz and looking through the log I have kept from the last 4 episodes, it seems the probability is very high that it is CH. Like I said, this has been going on for several years, like clockwork, twice a year, give or take a couple weeks. While waiting for the GP appointment, I am iso a "headache" doctor. I'm from milford, pa. In the northeast part of the state. Thanks again.

Hey Kevin,

Be sure to ask your doctor for the lab test of your 25(OH)D...  If you're still getting hit with headaches, it's a safe bet your 25(OH)D serum concentration will be down around 30 ng/mL.

25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status...  As CH'ers, we need to keep our 25(OH)D around 80 ng/mL to stay pain free.  10,000 IU/day vitamin D3 and the vitamin D3 cofactors usually results in a stable 25(OH)D response of 80 ng/mL.

The following link will take you to a post on all the supplements and doses for this vitamin D3 regimen.  The "how to" is half way down the first page on this thread.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

Your self-confidence that you have Cluster: how do you balance it against the material re. Cluster-LIKE headache?

Our urge to find a quick resolution/relief makes it seductive to accept one of the many fixes, which defines self-help groups, without confirmation from skilled physicians.

Bob, I am not leaving diagnosis to you, me, or anyone else on this forum. I will be seeing a trained physician next week to take care of other issues, sugar, high bp etc....i will initially address it with him since I will be there, and then go to someone with CH experience..at this point, the current attack is about done. I am pretty confident the headaches will be gone by the time I see him. Like I said, whatever this is, it is like clockwork.

Kevin,   Some of the stuff I read here confuses me. We're not supposed to self diagnose but we have a cluster quiz. We're not supposed to self treat but we all do. Yeah, I get the importance of a correct diagnosis but I think you came here looking for support and/or understanding or maybe a shoulder to lean on or maybe compare notes. You've been dealing with this for 5 or 6 years at twice a year episodes so you've got some experience behind you....10 to 12 cycles and you're still alive. You've been finding a way to manage the pain but perhaps not too successfully. I'd like to share some of my experiences with you and you can do with them as you will.

       I'm a spring and fall guy also, 75% spring, 25% fall, March, April and Sept. Oct., till 2013 and 15 when they switched to May. These last 2 May cycles have been tougher to deal with than previous earlier in the year cycles. Usually 2 months long, almost always got slammed all night long with 3/4 to 1 hour ch's starting about 1 hour after going to bed and going to dawn. About an hour between headaches. Daytime too, around noon and 6:00 PM but on a much more sporadic pattern.  I would become vulnerable to a cluster anytime I slowed down for the day, daytime naps are deadly. Which led me to exercise. I couldn't understand how these monsters knew it was night time, figured it was my metabolism slowing down for the day (correctly or not, I still don't care) so I started running. First time I tried it  (ran just before going to bed) I slept through the whole night. That never worked again but the next night when they came back, I threw some clothes on and took off running anyway. I killed that headache in 5 minutes and 100's more in the following years, the only requisite being that I had to get winded to the point of almost gasping for air. It's was also a great distraction technique. But it didn't work very well for the daytime hits. I went my first 5,6 7 or 8 years that way. Now we have oxygen. And prescription drugs. And thanks to this forum all the self help ideas people have come up with over the years. That includes D3. This disease definitely requires a proactive approach, most of it coming from you, the victim.

   There is certainly lots of stuff here one can learn.

    Welcome to Clusterville and may this cycle end soon.              Sean


    P.S. My diagnosis in 1996 was arrived at with nothing more than an oral interview about half way through my very first episode.

That's a great post Sean !
Hey Kevin,    One thing with this horrible disease, is that there are many similar mimicking ones, very much like it !
Some, not very pretty !
This is probably why guys like Bob, who has a wealth of support information to offer, pushes the need for proper diagnosis. Generally, a suitable headache specialist will run a cat scan or MRI, to eliminate the possibilty of brain tumors ! Yep, near soiled me nappies when I was given the reason why I was having one !  But, that's the realities we must face, its not a good feeling waiting for results, But an elimination process we all must go through.  Getting a Proper headache specialist is a real must, a lot of us on here have gone through the mill with even neurologists fumbling there way through treating us, with no real experience in the condition, So shoot for the best you can find, Bob often asks where are you from and can give you a list of all the recommended ones that have experience in this disease.
At the end of the day, Sean is right, once diagnosed, sufferers do really become the experts !  There's a hell of a lot of them on here, in all shapes and sizes.
If it does end up being diagnosed as cluster headaches, then you've come to the right place.
regards
colin

Welcome to Clusterville... and we're here for support and all have big shoulders..

One great thing about this site - you come here and know YOU ARE NOT ALONE... There are thousands of us here who KNOW what you're going thru and can tell war stories that will have you crying (or laughing - cause we tend to tell our stories in a funny way most of the time).

We push for docs who UNDERSTAND CH cause so many of us have been thru so many who didn't have a clue. Our best advice - once you've been accurately diagnosed - learn all YOU can about CH (the archives here are wonderful for that). Reason - you'll be your own best advocate for treating this disease.

We can tell you what works for most of us (like O2 and D3) but you have to find what works best for you and sometimes your doc just isn't up on the latest research on CH. That's where YOUR research comes in.

AND don't go away just because your cycle ends. Brush up on everything before the next one hits so you'll be prepared for it.

Keep us informed on your progress.. We do CARE..  :-*