Welcome to the board Big Mac. I’ve had CH for 34years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. That's typically what Topomax is used for, but it's not the typical first round prevent, Verapamil is the most common first line prevent, I use lithium, it blocks 60-70% of my attack. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post " Anti-Inflammatory Regimen and Survey” It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

Let us know what area you're from maybe we can refer you to a doc that's CH knowledgeable.


Read everything you can on this board, with CH, knowledge is your best ally. We’ll help you all we can.

Joe

Curr Treat Options Neurol. 2011 Feb;13(1):56-70.
MANAGEMENT OF CHRONIC CLUSTER HEADACHE.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.
SourcePain Neuromodulation Unit, Department of Neurology, Headache Center, Carlo Besta Neurological Institute Foundation, Via Celoria 11, 20133, Milano, Italy, leone@istituto-besta.it.

Abstract
OPINION STATEMENT: Primary cluster headache (CH) is an excruciatingly severe pain condition. Several pharmacologic agents are available to treat chronic CH, but few double-blind, randomized clinical trials have been conducted on these agents in recent years, and the quality of the evidence supporting their use is often low, particularly for preventive agents. We recommend sumatriptan or oxygen to abort ongoing headaches; the evidence available to support their use is good (Class I). Ergotamine also appears to be an effective abortive agent, on the basis of experience rather than trials. We consider verapamil and lithium to be first-line preventives for chronic CH, although the trial evidence is at best Class II. Steroids are clearly the most effective and quick-acting preventive agents for chronic CH, but long-term steroid use carries a risk of several severe adverse effects. We therefore recommend steroids only if verapamil, lithium, and other preventive agents are ineffective. In rare cases, patients experience multiple daily cluster headaches for years and are also refractory to all medications. These patients almost always develop severe adverse effects from chronic steroid use. Such patients should be considered for neurostimulation. Occipital nerve stimulation is the newest and least invasive neurostimulation technique and should be tried first; the evidence supporting its use is encouraging. Hypothalamic stimulation is more invasive and can be performed only in specialist neurosurgical centers. Published experience suggests that about 60% of patients with chronic CH obtain long-term benefit with hypothalamic stimulation.

PMID:21107766[PubMed]
=======
Pain. 2012 Sep 29.
Success, failure, and putative mechanisms in hypothalamic stimulation for drug-resistant chronic cluster headache.
Leone M, Franzini A, Proietti Cecchini A, Bussone G.
SourceDepartment of Neurology, Headache Centre and Pain Neuromodulation Unit, Fondazione Istituto Nazionale Neurologico Carlo Besta, Milano, Italy. Electronic address: leone@istituto-besta.it.

Abstract
Drug-resistant chronic cluster headache (CH) is an unremitting illness with excruciatingly severe headaches that occur several times daily. Starting in 2000, a total of 19 patients with long-lasting chronic CH, with multiple daily attacks unresponsive to all known prophylactics, received stimulation of the posterior inferior hypothalamic area ipsilateral to the pain as treatment. We report long-term follow-up (median 8.7years, range 6-12years) in 17 patients. Long-lasting improvement occurred in 70% (12 of 17): 6 are persistently almost pain-free; another 6 no longer experience daily attacks but rather episodic CH interspersed with long-lasting remissions. In 5 of 6 almost pain-free patients, the stimulators have been off for a median of 3years (range 3-4years). Five patients did not improve: 4 had bilateral CH, and 3 developed tolerance after experiencing relief for 1-2years. Adverse events are electrode displacement (n=2), infection (electrode n=3; generator n=1), electrode malpositioning (n=1), transient nonsymptomatic third ventricle hemorrhage (n=1), persistent slight muscle weakness on one side (n=1), and seizure (n=1).

THIS EXCEPTIONALLY LONG FOLLOW-UP SHOWS THAT HYPOTHALAMIC STIMULATION FOR INTRACTABLE CHRONIC CH PRODUCES LONG-LASTING IMPROVEMENT IN MANY PATIENTS. Previous experience was limited to a median of 16months.

IMPORTANT NEW FINDINGS ARE AS FOLLOWS: STIMULATION IS WELL TOLERATED FOR MANY YEARS AFTER IMPLANTATION; AFTER SEVERAL YEARS DURING WHICH STIMULATION WAS NECESSARY FOR RELIEF, A PERSISTENT ALMOST PAIN-FREE CONDITION CAN BE MAINTAINED WHEN STIMULATION IS OFF, SUGGESTING THAT HYPOTHALAMIC STIMULATION CAN CHANGE DISEASE COURSE; TOLERANCE CAN OCCUR AFTER MARKED LONG-LASTING IMPROVEMENT; AND BILATERAL CHRONIC CH SEEMS TO PREDICT POOR RESPONSE TO HYPOTHALAMIC STIMULATION.

Copyright © 2012 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

PMID:23103434[PubMed
====
PDF file, below.

Wow- Thank you everyone for your replies and support. I honestly was not expecting that. each have shared a great deal of info which I am excited to start going through and basically educate myself on your experiences.

I can't emphasize enough how much I mean the word Thank you.

It is comforting to know that I am not alone.

-John