Well after 6 years they are back and in full swing. I remember this site and am thankful that it is here as then you feel not so alone in pain. Not thankful anyone endures the same pain but thankful that there are others out there that understand the shear horrific pain cluster headaches are. I am trying to keep afloat with this bout....has been a little over a month with them and this time around i am trying to keep positive. I have wisdom in this area now that i didnt before. I am currently using oxygen...which is my only life saver for sure. Was researching online and saw that some do brain surgery and that it is effective. has anyone here done this? I think i will talk with my doc, for a cure for the rest of my life would deffinately be life changing. As these CH wear on me physically, mentally and definately emotionally i am trying to stay positive knowing something has got to give, but as they continue im finding it harder to remain positive. Praying for all that suffer. Remember to ask God to be with you thru them......it has helped me, i dont feel alone when i know he is by my side. Thank you for providing this amazing site. ...... now back to the oxygen. <3

Hey RyAnn,

I've done the same thing too - lost my forum info and had to start from scrtach with a new identity.  :D

Like so many others I'm sure, I've also been there with the serious consideration of anything including brain surgery to stop the madness. I noticed that article just posted here yesterday about the deep brain stimulation surgery that has shown 60% success so far.

If you could just find an effective preventative, use the O2 to abort any breakthroughs, and ride this episode out that way, I wonder if that would be preferable to surgery?

That's basically what I did for my episode last year, with the addition of an imitrex injection here or there when the O2 wasn't there or wasn't working, and I was able to prevent or abort all attacks. That's something that's easier said than done, I know, and it certainly involved some good luck, good fortune, and help from others.

Anyway, like a very rapidly growing number of others, I've now decided to look into "busting" as a preventative, and that's how I hope and wish to prevent my entire next episode. It's success rate so far appears to be more like 75-80%. Here's a good Newsweek article on the subject , which is an indication of how this natural, but not without some stigma, approach is gaining some recognition and acceptance.: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Meantime please hang out here a bunch for the latest info and advice on stuff like melatonin at bedtime (some CH'ers find 9 mg or more prevents night time hits).

I scanned the files on surgery which I've saved and believe this statement fairly describes the state of the art at this point.
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The first sentence (in BOLD) stands alone as a word of wisdom!
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Headache. 2008 Feb;48(2):313-8.
Occipital nerve stimulation for headache: mechanisms and efficacy.

Goadsby PJ, Bartsch T, Dodick DW.

Headache Group, Institute of Neurology, The National Hospital for Neurology and Neurosurgery, Queen Square, London, UK and Department of Neurology, University of California, San Francisco, CA, USA.

HEADACHE DISORDERS ARE COMMON PROBLEMS IN MEDICINE AND IT IS THIS COMMONNESS THAT OFTEN PROVIDES AN AIR OF THE SIMPLE OR OBVIOUS. PATIENTS EXPECT DOCTORS UNDERSTAND HEADACHE; INDEED DOCTORS EXPECT THEY MAY UNDERSTAND HEADACHE, AND IN TURN SINCE SIMPLE TREATMENTS EXIST AND CAN BE PURCHASED FROM A SUPERMARKET, THE VERY CONCEPT OF THE DIFFICULT HEADACHE PROBLEM HAS A PEJORATIVE CONNOTATION. A decade ago none of the authors were using device-based therapies to any substantial extent, and now hardly a week goes by when we will not see a patient who has considerable potential to benefit from such approaches. Here we cover the most promising of the device-based approaches, neurostimulation therapy using occipital nerve stimulation. Far from proven and with much work to be done, this is an exciting potential development for patients and doctors. Other device-based therapies, such as deep brain stimulation for cluster headache and patent foramen ovale closure, are covered elsewhere.

PMID: 18234048 [PubMed]
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That I've saved so few files reflects the inconsistency in reporting success/failure of surgical approaches. I can imagine exploring such treatments if you have found no relief from the conventional medical treatments but surgery is an expensive, iffy, and not (for some approaches) entirely safe.

We continue to suggest working with a headache specialist, not a general neurologist, if at all possible.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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.

Hi RyAnn,

Before you even consider a surgical approach, please, please look into clusterbusting. Many are finding complete relief, a total elimination of CH from their lives; some for many months or even years. Many here are using this approach and are members on both forums. Please check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. As an introduction to this method, Pinkfloyd gave a couple of talks that you can watch here:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. On this forum, scroll down the topics in "Medications, Treatments, Therapies" to the most widely read topic on the forum: "Time for the 75-80% to stand up and be counted" started by Pinkfloyd. Good luck.

Ron

I just want to say how thankful I am of all of you. I am struggling to concentrate as my energy is so low and my eyes are sensitive. It warms my heart that there are people like you out there that unfortunately know the shear pain and share your wisdom. I am willing to try anything at this point. Just want you all to know you are so much appreciated. When i feel a little more like myself i will really be able to read all of these comments. Just gotta say I love this group and am thankful it is here. Prayers for all of you, that you have a good nights rest and that tomorrow brings a healing hand to us all.  ;) ;) ;) ;)

Welcome back to the nut house.....sadly he never seems to lose your address does he? Do look into the clusterbusters site, it's given life back to some of our more stubborn cases.

This advice won't help you for now....but stick around off cycle. No need to post, but visit at least once a month to read up on what's working! We're constantly discussing what we use, and how we use it, refining our techniques to reduce pain! You can never have too many tools in your box when fighting the beast. Wishing you peace and some pain free time soon.

Joe