First, my sympathy to everyone else who suffers this terrible beast. I wouldn't wish it on my worst enemy.

I guess I should consider myself lucky compared to most Clusterheads. My CH only occur once a year for 6 or 7 nights in a row and last for around 30 min. This has happened for 12 of the last 13 years with last year being the blessed exception with none. Up until this year, they always occured during  the 2nd week of Nov. like clockwork. They even wake me up at the same time of night during, what I call, Hell Week.

For some reason, I didn't have any CH last year. And this year, the month is different. They started again last Sun. night. Every night since I have woke up at 4:41 AM with that "twinge" in my left temple and by 4:45 I'm doing the dance. It still starts to abate in about 30 min. but the pain is still beyond words. Right now, I am trying to prepare myself for what I know is coming in a few hours. I've felt several shadow twinges in my left temple today.

My thanks to those who started this site and to those of you who share here. Maybe one day, we will all be free of the beast.

Mark in NC wrote on May 20^th, 2016 at 1:13am:

I  wouldn't wish it on my worst enemy..

That pretty much says it all for this dread disease and I wonder if it shouldn't be added to the Cluster Quiz. Anyone saying they would wish it upon someone else probably doesn't have CH.

Welcome, Mark, and have you heard about the help many here have been getting from the Red Bull type of energy drink? Something to do with the mix of caffeine and taurine  and chugged down at the first hint of a hit can really help. Given the timing of your attacks it might be worth a look.

There's also our D3 vitamin regime which is helping many fight this beast.

Feel free to roam our forums, ask all the questions you please, because many of us are here in the hope of helping others.

Welcome home.

AussieBrian wrote on May 20^th, 2016 at 1:44am:

Mark in NC wrote on May 20th, 2016 at 1:13am: I  wouldn't wish it on my worst enemy.. That pretty much says it all for this dread disease and I wonder if it shouldn't be added to the Cluster Quiz. Anyone saying they would wish it upon someone else probably doesn't have CH.

Could we amend the question to have an exception for medical staff who don't understand the impact CH has on people plus the politicians who are in control of spending in this area. I'd like them to encourage one for a few minutes. That should result in some positive changes.

And welcome Mark.

Have you got any preventives to cut down how many CHs you get and have you anything to abort any CHs you do get?

Welcome Mark,

What abortives do you use when the Beast attacks?

Are you working with a headache specialist?

Start reading about the D3 Regimen. You will find it in the Medications and Treatments section under the thread "123 days pain free....".

There's a lot to read, but well worth the effort.

Also, have a look at the Oxygen info section on the top left of this page.

Keep posting and ask questions.

Peter.

If you have to have Cluster--your once a year pattern is the way to go! The advantage is that you can avoid the endless mess of having to deal with muliple meds, to prevent, to treat, to have to change meds, etc.

Hope, in any case, that you are working with a headache specialist. If not, get back for some guidance in locating a skilled doc.

For the once a year bout: if you are seeing a doc, drop this on his desk. The advantages of this med are: fast acting, low cost, convenience of a pill, and the possibility that it may stop that cycles permanently.
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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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