Hello cluster folks. My name is Seth Parker and i have been dancing with the beast for seven years now. Im 31 years old and I reside in Boone, North Carolina, go mountaineers. When my headaches began they were episodes a few months out of the year during the spring and especially the fall (the demons season). Now the demon rules me over the past 2 years I have become chronic with at least 1 headache every day usually more, 1 is a great day. I average around 5-6 daily and during the fall and spring up to 20 or more on many days. With each delightful little cluster sending me into a toe tappin, skullcrushin, snot spewing, o2 sucking, mutant break dance.

Since the beginning of this whole ordeal I have tried all sorts of things to try and ease the pain and return some sort of normalcy to my life. From alternative medicines like strange dirt flavor asian tea and other worthless herbal remedies, lots of acupuncture, magic mushrooms, LSD, cranial massage, Rashi healing, and meditation practices. With only the mushrooms and LSD giving me some temporary relief for a few hours or so. Wouldn't do the LSD again its to hard to regulate a dose and things got to crazy. For the record I'm not the kind of guy that would normally try any of those alternative medicines under normal circumstances.  As far as modern medicine goes I have tried zonenesimide, topamax, verapamil, gabapentin, a millon steroid tapers, pure O2 (my saving grace), sumatriptan injection (love it and hate it), lidocaine injections, and some other things I cant remember. Most of these had little to no effect and topamax turned me into Jack Nicholson from the shining (here's Johnny). I still take verapamil and gabapentin although I dont know if they help at all. Lithium was added to my regimen yesterday its one I didn't want to try but we're running out of options now. The lidocaine injections seem to give about 10%  reduction in frequency and severity for a day or two but I'll take what I can get. Sumatriptan vials, screw the auto injector 6mg is too much 2.5-3mg with a insulin needle works but sometimes makes me sick. Better than the beast though. Pure 02 the second love of my life after my wonderful bride to be Katelyn. I use a man sized tank a day and without that I would need a milk jug of sumatriptan a month to get by.

Well I just wanted to introduce myself and say how happy I was to find this site today. I've never met or even spoke to another person with cluster headaches before. We are the great white buffalo of the headache world. I've been going through the worst cluster I've ever had for the last 2 months. To read your experiences and to know that there are others like me out there that truly understand this hell ride almost made me tear up.  I look forward to contributing to this community in anyway I can and I'm just relived to have found some people who I can finally relate to on a cluster headache level.

Hi Seth and welcome to the place where people understand just what you go through with CH as we all either have it or support someone with it.

Really pleased that oxygen works for you. I'd suggest you read our oxygen page (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) as there may be some hints or tips that can help you use it even better. What flow rate do you use and have you got a non-rebreather mask? Do you hyperventilate whilst using it?

With the verapamil, what dose are you on? Often people haven't been given a high enough dose, with many needing 360-480mg a day but some go to around 1000mg a day.

Have you read up yet about how we've been using vitamin D3 with a success rate of over 80%? I'm just over 2 months short of being CH pain free for 3 years, all thanks to D3. I'd strongly recommend you look at this.

Keep reading and ask all the questions you can think of.

G'day Seth. All headaches are horrible but at least you're now among people who understand and care.

Importantly, have you been formally diagnosed with the beast we call CH? It's important because there's other headache types which mimic it but don't respond to our typical treatments.

I noticed in your post that you get up to 20 headaches in a day which is a helluva lot for CH so I thought I'd suggest you google paroxysmal hemicrania. The pain of individual hits is quite similar but the timing and duration are quite different. It's also quite easily managed.

Please let us know how you're getting on because we care.

Appreciating that Boone is not the center of the universe anymore than Casar (my previous nest!), first question is: who is treating you ? Doc have training and/or good experience with complex headache disorders?

Given your history, my first reaction is: need for a headache specialist.  (Even if you had to drive to W-S, Greensboro, Asheville, et al, once you got settled with effective treatment program, subsequent visits would be limited.)
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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. (Don't assulme that a neurologist has the sklls. Majority of them have meager education/training with Cluster.
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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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Second reaction is the possibility that you don't have Cluster. See: 
Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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As I noted in this posting, I stopped adding to the list because it just grows and grows. The key point, however, is that you can have the classic Cluster symptoms but not have a headache disorder. So, need a sharp doc to think along these lines.

Since you have used many of the standard Cluster meds without consistent good results, it raises the preceding suggestions rather strongly for me.

Print the PDF file, below for you infro.

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Hey Seth..welcome to the forum. Just wanted to let you know that you have a fellow CHer that feels your pain..truly!

I live up near Mt Airy and have found a Neuro in Winston that was recommended by other CH sufferers when I was trying to be diagnosed.

Dr Paul Martin treats many of us in the area..both chronic and episodic and has for many years. He will try to get you in asap if you are in cycle and is very knowledgeable and caring. I think Boone should be no more than 2hrs for you.

He's with Triad Neurological...give them a call, tell them I recommended him and that you are in cycle. My name is Judy Keene. He will run some tests on you to make sure you have CH..if not he will find out what it is.

Good Luck and praying for pain free days.