New to the site and from what I have been reading I guess I can be considered new to cluster head aches.  I have only be suffering for about 4 years.
mine started at about 43years old.  I was misdiagnosed at first with trigeminal neuralgia...(not that that diagnosis was any worse...lol) after two different doctors I was properly diagnosed.  my doctor put me on Verapamil and I suppose it works...it does nothing to stop the CH but I am afraid to see what the severity would be if I stop taking it during a cycle.  My CH happen usually around 12:45am and last about 45min to 2hr.  right side, around the upper and outer eye area, roots of my teeth in my upper jaw, sinuses and saliva ducts.  for me I get a bit of relief by standing in the shower with hot water pouring on to my face as hot as I can stand it...my doctor says I am just trading one pain for another...lol... sometimes I wonder if he really "gets it".  anyway, I went two years without a headache.  stopped taking the meds and everything... then they returned.  I went back on the meds and now I am waiting for the cycle to stop again.  Something new with this cycle is that I also get them sometimes during the day. usually between 12pm and 2pm.  the daytime attacks are not as severe as the night attacks but they are still plenty painful...just keep pushing on my eye and blowing my nose and try to get some work done and draw as little attention to myself as possible.  my biggest fear is that I am "working up" to something bigger with my cycles.  my doctor said there is a treatment of cutting the trigeminal nerve as a "permanent" solution. I am not sure how I feel about that and have decided to try and live with it for now.  anyway, sorry for the rambling first post...I am trying to distract myself from the headache I am having as I write this.  I look forward to reading through the site and hopefully finding something that will help me deal with this.  I am glad I found this site and thanks to all that made the site happen.

Hi Chappy,  I too was wrongly diagnosed with trigeminal neuralgia,but it's an easy mistake for a doctor to make as the resulting pain is very similar to CH. I saw 6 doctors in 5 years before I got a diagnosis.

I also considered that surgery but the risks are huge. Think about it. You will be cutting off the main nerve of your face - yes the pain will stop, but your facial features may drop like palsy, you may not be able to blink or speak properly. Your eye will run and you will probably drool all the time. And if thats not enough, you won't feel any other pain either, so you won't know if you have infected teeth etc. The surgeon I spoke to also warned me that the risk of serious stroke, or death is as high as 16 to one. Those odds are too short for me.

Most doctors and even some neuro's don't "get it". Hence why so many of us are years before we find the right doc who does.

You are already taking verapamil, but are you taking a high enough dose. I don't take it myself but I believe you need about 480mg for it to be effective. Some one will come along and tell us if I've got that wrong. 

Ask your doctor for Sumatriptan auto injections. It may be called imitex or imigran depending on where in the world you live. They are easy to use and will abort the worst CH in 5 - 10 minutes. High flow oxygen will do the same but you must have a flow of at least 15 litres per minute with a non-rebreather mask. If you get the flow or the mask wrong it won't work, but used correctly will abort in 10 - 20 minutes (usually, for most of us). Both of these are recognised and most widely used treatment for CH, which your doctor can check on if necessary.

Something to try - at the very first sign of pain (don't wait) drink a redbull or similar energy drink, really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick so any energy drink with those ingredients will do. It doesn't work for every one but many people here swear by it.. Cheap, easy to get and easy to use so nothing to lose by trying.

Daytime attacks are common and "normal" (can CH be called common and normal????) and I get them often. At the worst of my cycle I can get between 6 and 8 during the day and another 6 or 8 through the night. Thankfully this does not happen too often.

Finally, check out the vitamin D3 regime which you will find all over this site. Send a pm to Batch ( he devised the regime) and tell him about yourself and he will tell you all about the regime. It's been like a miracle for so many of us. If you decide to go down that route come back here for info on the best and cheapest places to buy.

Hope all this helps. Keep coming back, as between us we know more about CH than any doc ever born. After all, we have them and they don't. ::)
Maz.

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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It appears that you have a doc who doesn't know how to treat Cluster. If at all possible, start looking for a headache specialist or, if not possible, don't settle with a doc who cannnot outline his experience & training in treating this comlex set of disorders.
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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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I would not assume, givenyour past experiece with you curewnt doc, that you have Cluster. There are many disorders which mimic Cluster but which are not headache disorder. Point being: essential to get a good diagnosis before launching into any form of treatment. (Note the last sentence, in caps, above.)

Hi Chappy welcome this site has been a life saver this last week , this my first very severe bout with CH ,not having any relief i am now on 9 th day. You will find so much reat information and for my part it helped alot dealing with my anxiety .. thought i had brain cancer or a stroke. Ouf ! Hope you find what you need , like someone here told me , resd read and read, so get acquainted with the Devil .

All,
thanks for the welcome and all the great info.
Maz, I am not considering the surgery at all, I mentioned it as it was the worst on a very short list of "solutions" my doctor gave me.
like you, I went through a fair amount of docs. 

does this progression sound familiar to anyone?

Me -Doc, I have these terrible head aches around my eye, upper jaw and ear, and sometimes my scalp hurts. and my sinuses are stuffed
PCP - hummm...sinuses are clogged eh? go to the ENT...
20 headaches later
ENT -  everything looks normal up there.  might be allergies.  It is that time of year you know.
10 headaches and a trip to the emergency room at 2am later.
PCP - still having those headaches eh?  go get a MRI and a CT and lets see what we can see.
10 headaches and a high dose of radiation and contrast later
PCP - everything looks good on your scans... it may be a vascular thing... go see this cardiologist...
a few carotid sonograms and EKGs later
Cardiologist - everything looks great, no plaque, good BP, your healthy as an OX...why are you here again?
ME - I get these terrible headaches in and around my right eye, my upper jaw like my teeth roots are on fire and near my ear where my jaw hinges...
Cardiologist - your jaw?... have you seen a dentist?
ME - <facepalm>
PCP - I am sending you to a neurologist
Nuro - so what brings you in today?
Me - WTF... explain everything again.....
Nuro - (without looking up from his paperwork) you have trigeminal neuralgia.  we can do botox, meds, or clip the nerve.
Me - um... I need a second opinion.
Nuro2 - sounds like textbook cluster headaches, lets get you on some verapamil and see how it goes...by the way, you snore pretty bad don't you?
Me - why yes I do...wife wonders if I am going to die in my sleep.
Nuro2 -  go get a sleep study, I am pretty sure you have sleep apnea as well.
Me - cpap and verapamil seems to do the trick (or it just happened at the same time I ended a cycle...)

and now they are back... I am only taking 240mg of verapamil once a day currently.  that is up from the 180mg I started with.  sure do hate the way it makes me feel, sluggish, and forgetful, cant concentrate, no energy.  I will be trying D3 (thanks Batch for the email)

anyway, I will be making an appointment with my doc after I digest the material on this site...

And thank you Maz for the Red Bull tip...it seemed to have worked last night.

Chappy,

Odds are you're vitamin D3 deficient.  See your PCP for the 25(OH)D lab test.  The normal reference range for serum 25(OH)D is 30 to 100 ng/mL.  Unfortunately most physicians will interpret 31 ng/mL as "normal."

As a CH'er you need to keep your serum concentration of 25(OH)D up around 80 ng/mL in order to stay CH pain free. That will require at least 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors: 400 mg/day magnesium, 12 mg/day zinc, 1 mg/day boron and vitamin A (retinol) at RDA.  You can get most of the cofactors from a good mature multi... just not enough magnesium.

I sent you a PM yesterday... It covers all the above and more.

Take care and please keep us posted.

V/R, Batch