Hi, I'm 31 and I have minimum 2 CH every day for 4 years now. The longest period without CH is 3 weeks last year at the end of May.

I have a really good neurologue. I see him almost every 2 months now. But if I need to see him, he will normally see me in the same week or at least communicate with me over the phone.

In the last 4 years we tried everything that normally works (not necessarily in that orders): veramil,  lithium, prednisone, naproxen, oxygen, some very expansive nasal spray... I think Im forgetting 2 other meds

right now I'm taking 750mg 2x day of divalproex and 5ml or 1tsp (1mg/ml) hydromorphone (syrup) when a Ch starts, another 5ml after 45mins/1h after it started, works "better" if I take it like 20mins before. Luckily they are often at the same time everyday so i know approx When to take it...

But the sad part is, with all this, nothing is really working. Even the hydromorphone barely give me a little bit pain relief, and actually a  handful (way too much I won't say how many I was taking but when you panic, you don't really care about counting) of tylenol 500mg was doing The almost the same thing. But i can't take tylenol anymore (order from my 2 doctors, cause I took way way too much when all this crap started..

So now that you know a bit of my story, I would like some suggestions. I must admit that I'm kinda scared to suggest some meds to my neurologue because I don't want him to think of me that I'm a drug addict. I consider myself so lucky that I got this doctor and i really don't want him to think that I'm hopeless (since no meds are working yet) or that I'm a drug addict like I said. I have no history of that kind with drugs, I only the fact that i don't want him to drop me..

I can't take the pain a well as i used too. Sometime the pain is so strong that i feel like my hart was simply gonna stop. Before I was at least passing out when The pain was unbearable. Since veramil I don't passed out and believe I really miss it. Oxygen used to work very well but not anymore.

Don't suggest any meds I've listing above, we really tried them more than once at every dosages possible. I'm not working since I've been diagnosed With Cluster Headaches, so I'm open to any suggestions, even if the medication knock me down like nothing else....etc.. omni getting more and more addicted to Hydromorphone everytimes I take it (4 months now) and it's barely working. If I'm gonna get addicted to a medications maybe I should ask him for something stronger (if there is something stronger..), I guess no matter what opiate, the addiction level must be relatively tue same right?

Waiting for your replies... Thanks for helpedng me.   :-/ :-/

Glad you found us, MolsonEx, because you need help and badly. Firstly, seriously consider your use of opiate drugs as we've heard a thousand horror stories about them and no good ones to balance it out. Fair dinkum, they'll kill you long before the headaches will.

Secondly, and just as importantly, look to the top left of your screen for the button marked Oxygen Info. Probably the best button you'll ever press in your fight against this monster. Next grab yourself some Red Bull or similar and guzzle it straight down at the first hint of a hit.

We'll help you every inch of the way, mate, so long as you'll do your bit and talk seriously to your doc about opiates.

Cheers from down under,

Brian.

Molsen,  From some of your spelling..( neurologue)  I will go under the assumption that you are NOT in the U.S.    I had started a thread a while back to all newcomers to please let us know IN YOUR profile) where you live, so the rest of us can steer you to a doctor in your area.  Unfortunetly it turned into another thread of newcomers just posting their story and few understood that we just wanted newcomers to post in their profile where they live.

We have a list of sufferer recommended doctors all over the world.  If your doctor is giving you narcotics, then you need to find another doctor.  Someone who is educated and knowledgable about how to treat CH. 

You ssaid that sometimes it feels like your heart is going to stop.  Unless it is a reactiojn from whatever drugs you are taking your heart will not stop because of CH.  In fact,  despite what we all think, there are no adverse reactions on the body from CH.  I used to think that at the very least my eye surely would have some damage.  ;D

thanks for the replies guys. And no I'm not from the U.S, I'm French Canadian and I'm using a smartphone, easy to make msitake on that thing. by neurologue I meant a neurologist(?!).

I don't like taking it (hydromorphone..), and He really don't like it too. He prescribed it after communicating with another doctors who recommended it and since we tried a lot of stuff and also because he can easily tell that I'm getting very tired of this situation, we gave the syrup a try. It's the only meds that make the pain less ..painful... I'm at a point where I really don't give a sh*t(sorry) about the side effects if it's gonna get rid of the pain (I don't mean taking more meds that what I have prescribed, I actually very scared and follow exactly the dosages...etc). I know there's a medical operation that can get rid of it but I'm even scared of this so before doing it I want to try everything i can (and sadly if i can afford it...).  That's why I'm here now. The only time before today that i look for informations about CH
Is 4years ago when i came back from the hospital with my diagnostic. And i started crying and a big depression after reading about it. And i have an hard time trusting internets informations... Oh and by the way.. My doctor is a very good one with a very good reputation...


Funny that you're actually suggesting red bull, it used to work 2 years ago. I actually found that it was working by myself, nobody believed me lol sadly it's not working anymore or I really need more and that would be probably dangerous as well. And I actually have no money. Every meds is paid by the insurance....

I'm gonna go take a look at the thread you suggested me about oxygen after writing this post but I lost hope in oxygen too.

(This med has been consistently effective for me.)

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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Ther Adv Neurol Disord. 2010 May;3(3):187-195.

Hypothalamic deep brain stimulation in the treatment of chronic cluster headache.
Leone M, Franzini A, Cecchini AP, Broggi G, Bussone G.

Headache Centre, Neuromodulation and Neurological Department, Fondazione Istituto Neurologico Carlo Besta, via Celoria 11, 20133 Milano, Italy.

Abstract
Cluster headache (CH) is a short-lasting unilateral headache associated with ipsilateral craniofacial autonomic manifestations. A POSITRON EMISSION TOMOGRAPHY (PET) STUDY HAS SHOWN THAT THE POSTERIOR HYPOTHALAMUS IS ACTIVATED DURING CH ATTACKS, SUGGESTING THAT HYPOTHALAMIC HYPERACTIVITY PLAYS A KEY ROLE IN CH PATHOPHYSIOLOGY. ON THIS BASIS, STIMULATION OF THE IPSILATERAL POSTERIOR HYPOTHALAMUS WAS HYPOTHESIZED TO COUNTERACT SUCH HYPERACTIVITY TO PREVENT INTRACTABLE CH. TEN YEARS AFTER ITS INTRODUCTION, HYPOTHALAMIC STIMULATION HAS BEEN PROVED TO SUCCESSFULLY PREVENT ATTACKS IN MORE THAN 60% OF 58 HYPOTHALAMIC IMPLANTED DRUG-RESISTANT CHRONIC CH PATIENTS. The implantation procedure has generally been proved to be safe, although it carries a small risk of brain haemorrhage. Long-term stimulation is safe, and nonsymptomatic impairment of orthostatic adaptation is the only noteworthy change. Microrecording studies will make it possible to better identify the target site. Neuroimaging investigations have shown that hypothalamic stimulation activates ipsilateral trigeminal complex, but with no immediate perceived sensation within the trigeminal distribution. Other studies on the pain threshold in chronically stimulated patients showed increased threshold for cold pain in the distribution of the first trigeminal branch ipsilateral to stimulation. These studies suggest that activation of the hypothalamus and of the trigeminal system are both necessary, but not sufficient to generate CH attacks. IN ADDITION TO THE HYPOTHALAMUS, OTHER UNKNOWN BRAIN AREAS ARE LIKELY TO PLAY A ROLE IN THE PATHOPHYSIOLOGY OF THIS ILLNESS. HYPOTHALAMUS IMPLANTATION IS ASSOCIATED WITH A SMALL RISK OF INTRACEREBRAL HAEMORRHAGE AND MUST BE PERFORMED BY AN EXPERT NEUROSURGICAL TEAM, IN SELECTED PATIENTS.

PMID: 21179610 [PubMed]
=======
Prog Neurol Surg. 2011;24:126-32. Epub 2011 Mar 21.
Peripheral nerve stimulation in chronic cluster headache.
Magis D, Schoenen J.
SourceHeadache Research Unit, University Department of Neurology, CHR Citadelle, Liège, Belgium.

Abstract
Cluster headache is well known as one of the most painful primary neurovascular headache. Since 1% of chronic cluster headache patients become refractory to all existing pharmacological treatments, various invasive and sometimes mutilating procedures have been tempted in the last decades. Recently, neurostimulation methods have raised new hope for drug-resistant chronic cluster headache patients. The main focus of this chapter is on stimulation of the great occipital nerve, which has been the best evaluated peripheral nerve stimulation technique in drug-resistant chronic cluster headache, providing the most convincing results so far. Other peripheral nerve stimulation approaches used for this indication are also reviewed in detail. Although available studies are limited to a relatively small number of patients and placebo-controlled trials are lacking, existent clinical data suggest that occipital nerve stimulation should nonetheless be recommended for intractable chronic cluster headache patients before more invasive deep brain stimulation surgery. More studies are needed to evaluate the usefulness of supraorbital nerve stimulation and of vagus nerve stimulation in management of cluster headaches.

Copyright © 2011 S. Karger AG, Basel.

PMID:21422783[PubMed]

You tried the Vitamin D3 regimen? How about "gasp" hallucinogens? From what you've said, you've got very little to lose and much to gain from trying some of the more unconventional methods.

Hello,

Ther is a very good treatment avaible to those that have stomach for it. Its called clusterbusters! It is the use of mushrooms and seeds. I have been cluster free for over 4 years.

There is the moral issue... But that does not apply to me.That's cause there didnt seem to be much of a moral issue when i was on the ground crying like a 8 year old. there is only 2 ways that i found that can stop them in there tracks. Prednozone and mushrooms. I also do the vitamen d3 with magnesum, but i cant claim victory with these as i use clusterbusters, But many have had great results.

Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and click on the about us link on the left. It gave me my life back.

Hips then Hands.
Coach Bill