Hi everyone.  I'm Drea & my husband is Tim.  We are both in in our 50's. He has suffered from CH for about 20 years.  It's just a coincidence that I suffer from regular migraines.  Right now we are both in a zone and really having a hard time.  Tim usually gets his CH every 3 years and they last several months, with him getting from 3 to 6 a day, with shadows in between.  We are worried though because he was in a zone only 3 months ago.  So this is a new twist with the beast.  

I think we've tried every med out there, all the triptans, narcotics, blood pressure meds,  DHE injections, steroids, anti seizure, anti depressants & Oxygen.  Nothing really helps much.  I found your site today, and wanted to reach out because sometimes I think he feels so alone.  Even though we sympathize with eachothers pain, each is unique.  He does the dance, paces, rocks, tears up and keeps saying he can't take it anymore.  I curl up in a ball on the bathroom floor in the dark.    I almost took him to the ER the other night, but didn't because I was too sick myself to safely drive.  Good Lord, if it wasn't so awful it would be funny.   Somehow we got though the night  with ice on our heads.  Later, we found out from the local urgent care center doctor that the hospital in our town is "not sympathetic to CH or migraine sufferers".  So, I'm glad we didn't bother with hours of waiting and then no help.  I'm sure they would have thought we were nut cases anyway.

Tim has an appointment with a new neuro next month.  We are hoping that maybe there is some treatment out there we missed during his remission.  Thanks for giving me a place to talk.  I told Tim all about you guys, and I think it gave him a bit of encouragement and hope just knowing he's not alone.  More Pain Free Days to you all!

Drea

Hope your newest doc is a specialist in headache. Collectively, we have had so much dissatisfaction with general neuros because so many of them lack training and experience in complex headache disorders. (Get back if you are interested in seaching for a specialist.)

One med which is helping several of us:

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.



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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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Most current treatments:

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Ref. #5 & posture: We have had a couple of series of discussions on posture and CH. I, for one, could trigger an attack by sitting in a chair which put pressure on the kidney area or sleeping on my back. And, could abort development by changing posture within seconds of the pain starting to develop. Strange!

Dr. Rozen, of the Zyprexa article, is one of the more innovative CH docs in this country. The nice thing about it, besides working quickly, is that, on a per dose cost basis, is much less than the triptans.

Do touch base with Chuck.  he may be strange as anything, but there is nobody more caring and willing to help.  (Geez, I complimented Chuck, even if backhanded.  Note to self:  See a Pshrink ASAP!)

I am the opposite of Bob.  I cannot lie down at night until I know I am through with them for the night.  I often will sleep in my Lazy Boy with it nearly upright.

For the persistent HA's following an attack I use strong coffee, and a lot of it.  It also helps out with the shadows that usually precede an attack for me.  Sometimes I can even forstall a hit if I can get enough in me.  Another thing that works for me if I get it in the very early stages of a hit is an energy drink with Taurene.  Red Bull, Monster, RockStar, etc.  You can't drink it as a normal drink for it to be effective.  I've gotten to where I can down a full can of Monster or the like without a breath if it isn't to cold.  Often that will abort a hit, or at least knock it down to a manageable level in about 5-8 minutes.

hope this helps.

Jerry

I like your attitude Drea, remind that boy how lucky he is to have you in his corner!

Joe

Don't take the above oxygen suggestions lightly. There is a reason many, many abandoned it when they found that it "didn't work" - I'm one of them.

Breathing 100% oxygen at VERY HIGH FLOW rate for several minutes is critical to give it a chance to work - especially for those who tried the conventional lower flow and got no relief. If your husband tries again at the same old 8-10 liters per minute, it probably won't work this time either.

You two need to take control of the situation.