Hello!
I've been watching this site for some time now and decided to join in.
Guess I'm hoping it's more an outlet for me than anything else.
Just got to get it out. So here goes.
I was diagnosed with ch more than 17 years ago. My father had them
back before they cooked up Imitrex (poor guy) but he is one of those
who outgrew them in his mid-50s. Paternal Grandmother had some serious migraines. DNA?
A little over a year ago I went chronic. Official diagnosis is DRCCH
(drug resistant chronic cluster headache). It's been quite a battle with the beast for the last year. Just trying to hang on to my life, my career,
my identity.
My Neurologist is a very talented guy with experience with ch, but after
about 6 months of trying everything he knew he recommended that I seek treatment elsewhere and recommended MHNI. I did a little research on them and went with my Neurologist's referral in spite of some of what I'd read about the place.
It only took 3 painful months of expensive and ineffective therapies to realize we had different priorities. What a waste of time.
By this time I was in a bad tailspin. Using oxygen as my 1st abortive weapon of choice against the demon at every opportunity. But it doesn't always work for me. My headaches come very quickly, 0 to 9K. in about 7 minutes flat. So if I can't get to the O2 in about 5 minutes, it's to late.
Of course on a boatload of prophylactic meds as well,
I have been chewing through all the Imitrex my insurance plan provision would allow in less than the 30 day renewal period. When I ran out each month it was all I could do not to panic.
I'd been reading about hypothalamic DBS and peripheral nerve stimulation and asked Doc to refer me to Mayo Clinic. Reasoning that if anyone is going to fool around with nerves or brain it would be the best I could get.
So made my appointment and waited. In the mean time things were getting bad. I had maxed out on the 24 hr. limit of Imitrex several times here and the beast would come back for more. My only option short of a lead pill was to visit the local emergency room for the "headache cocktail". I was there weekly for a while.
My Neurologist decided to put me in the hospital, remove the Imitrex (for concern that I was rebounding) and use O2 and DHE as abortive therapies while transitioning to some other preventative regimen.
I had been calling Mayo Clinic daily in hope of a cancellation that would get me in sooner and ironically the day before I was scheduled to go into the hospital here at home with my Neurologist, they had an opening for that same day.
Had to drive all night, got 1 & 1/2 hrs. sleep at the hotel in Rochester, but I wasn't  about to miss the appointment.
Met with some really sharp Doctors there. Bottom line, I am a candidate for peripheral nerve stimulation(occipital nerve). Just received approval from the Ins. co. for the implant trial and have it scheduled. The Belgium study stats look great.
I have more hope now than I've had in a long time.
Neuro

Thanks for the welcome BrettK,
I have been over just about every inch of this site and I agree it is very informative. It's good to know there are other people with this condition who want to stay in touch, support and encourage each other.  I have never wanted to share this pain with anyone, but the reality is you do share it with those you love. They too pay a price. I've never posted on an internet forum before yesterday. I'm hoping it will be therapeutic for me. Maybe I can learn from someone else's experiences or someone could learn something from mine.
It is interesting to read here of some of the medicines or therapies that have worked for some people. My Neurologist and I used all of the conventional therapies over the years and got a bit more creative this last year of my discontent. It is my understanding that Imitrex is the only drug that is FDA labeled specifically for CH. Everything else is an "off label" application. Not to say they are not effective. They often are as I'm sure you know. Primarily the preventatives, Verapramil, Lithium Carbonate, Depakote, Prednisone, Indocin, various antihistamines, beta blockers, ect. and the list goes on, seem to work for some people.
And That's great! I'm glad they do. They just aren't working for me anymore.
Yeah, I will keep you all informed how it goes with the (ONS) Occipital Nerve Stimulation. It is the "off label" application of a (SCS) Spinal Cord Stimulator. This is the trial phase. They will implant 1 lead that has 8 contacts on the end over my lucky left occipital nerve there at the base of my skull and the other end comes out of my body and will be attached to an external neurostimulator / generator. They will program some baseline settings based on their experience and the data from the Belgium study, then adjust specifically to the patient if necessary. The trial will last 3 to 5 days, then they will remove the lead. The Doctor will analyze the results and determine if meets the threshold of effectiveness to proceed with the implant. If so, about 3 weeks later the lead is placed over the target area/occipital nerve completely under the skin and to the implantable pules generator. There are several SCS makers out there, this Doctor prefers the Boston Scientific, Precision Plus system, it is the smallest unit available, has the longest warranty on the battery and is very flexible in the settings and allows the patient to increase / decrease signal strength and switch to other programs with completely different settings as the need arises via a remote that is about the size of a pager or cell phone.
Check out their website if you are interested in the technical stuff.
Sound pretty cool to me, a lot better than swallowing a plethora of drugs that for me are no longer effective and/or can have significant side effects.
Out of ink.
Take care brother BrettK. You are not alone.
Neuro

P.S.
Is anyone else out there plugged into one of these for ONS for CH?
I'd sure like to hear about it.

Hi Neuro,

it sounds like you've been round the block a few times with CH so I'm not going to offer advice. Glad you decided to join in and share your experience with us.

We'll all be rooting for you and hope that the treatment works.

regards & PF days,

Melvyn

Author is one of the leading headache docs in the world!
------------
The Lancet 2007; 369:1099-1106

Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients
Brian Burns MRCP a,   Laurence Watkins FRCS b   and   Prof Peter J Goadsby MD  a c

Summary
Background
Cluster headache is a form of primary headache that features repeated attacks of excruciatingly severe headache usually occurring several times a day. Patients with chronic cluster headache have unremitting illness that necessitates daily preventive medical treatment for years. When medically intractable, the condition has previously been treatable only with cranially invasive or neurally destructive methods.

Methods
Eight patients with medically intractable chronic cluster headache were implanted in the suboccipital region with electrodes for occipital nerve stimulation. Other than the first patient, who was initially stimulated unilaterally before being stimulated bilaterally, all patients were stimulated bilaterally during treatment.

Findings
At a median follow-up of 20 months (range 6–27 months for bilateral stimulation), six of eight patients reported responses that were sufficiently meaningful for them to recommend the treatment to similarly affected patients with chronic cluster headache. Two patients noticed a substantial improvement (90% and 95%) in their attacks; three patients noticed a moderate improvement (40%, 60%, and 20–80%) and one reported mild improvement (25%). Improvements occurred in both frequency and severity of attacks. These changes took place over weeks or months, although attacks returned in days when the device malfunctioned (eg, with battery depletion). Adverse events of concern were lead migrations in one patient and battery depletion requiring replacement in four.

Interpretation
Occipital nerve stimulation in cluster headache seems to offer a safe, effective treatment option that could begin a new era of neurostimulation therapy for primary headache syndromes.

Affiliations

a. Headache Group, Institute of Neurology, National Hospital for Neurology and Neurosurgery, London WC1N 3BG, UK
b. Division of Neurosurgery, Institute of Neurology, National Hospital for Neurology and Neurosurgery, London WC1N 3BG, UK
c. Department of Neurology, University of California, San Francisco, CA, USA

Bob,
Thanks for the info on this study. I had not seen it before.
I had been presented another study also published in Lancet by Doctors in Belgium, DelphineMagis, Marta Allena, Monica Bolla,
Voctor De Pasqua, Jean-Michel Remacle, Jean Schoenen dtaed
March 8, 2007. Results and disucssion look very promising, great statistics.
"Weekly frequency of cluster headache attacks.......a reduction of 79.9%."
"Mean attack intensity......reduced by 44%"
I will see if I can get a copy of the one you site here, sound interesting. Thank you.

What is it with the mushroom agenda?
I realize that I am fortunate enough to have an insurance co. that can do the math here and see the cost / benifit ratio and approve of this route for my treatment and I don't blame anyone for trying ANYTHING that would give them relief from this intense pain. But "Screw that surgery crap"?
Put the pipe down dude, there are other methods out there that have the imperical data sets to support them. I choose to go that way given the choice. Keeps my name out of the newspaper as well.
Update you all later,
Neuro