A big Thank You to everyone who posts on this board.    I am a 43 year old, 25 year veteran of episodic CH’r.   And I have learned much more from this board than I have from any Doctor, any book, or any other website.  Thank you, all of you. 

There are so many great thoughts on here, its hard to have an original one.    The search tool helps me answer almost every question I have ever had.   Reading everyone’s messages is not only informative, it is so therapeutic.    I am coming off a 4 year period of remission (hollah).   Out of the blue, on an freaking airplane (headed out on a biz trip), completely unarmed, I got speared with a 70 minute kip 8.   The only thing worse than having a CH is being trapped, out in the open, in public.       Once I got off the plane, regained my sanity, I did 2 things.   Emailed my pcp a request for Imitrex Shots (love that he will actually email), and hopped on this website and typed in “latest treatments” (hello Redbull, hello D3).     My doc, who is new and never talked to me about my CH history, put the prescription in immediately.    I ended up needing those shots to survive the remainder of that trip.   He also re-arranged his schedule so I could see him the day I returned from my trip.    Gave me the O2 (why did I ever send that back anyway!), Verapamil, and a steroid Taper (actually my first time doing this, but I have a lot more travel planned, and can’t afford to battle – its working).   No questions asked.   It blows me away to hear that people have trouble getting O2 prescriptions in this day and age.   

Now, I am relatively lucky, as for the most part, all the traditional methods of aborting /  preventing work for me.  At relatively modest doses.   But I certainly have my breakthroughs.   And for those, I am an exerciser if nothing else is available.    It can be very difficult (see airplane), particularly if its 6 times in a night, but I can usually abort them by intense sets of squats, sprints, jumping jacks, or jumping rope.   If I start early, and if I haven’t been drinking, and if its not mid cycle.    But I got pretty good at this, because for the first 15 years or so, it was the only technique I had (other than chewing aspirin).  By the way, can I go back and sue those doctors I saw in the early years?   I think they owe me for some serious pain and suffering!  While I am at it, can I sue myself for the same?   Even after I found my way to the right people, and read the right things,  I was way too hesitant to add Imitrex and O2 into my defensive options.   But hey you just haven’t lived if you haven’t snuck into a bathroom, before an important meeting,  and snapped off 500 - 1000 jumping jacks, praying to work yourself into a breathing frenzy so that you can continue on with your day!   

For me, this disease is about hope and fear.  Hope that:
•      This CH will be the last of the cycle
•      This CH will end in the next 10 min, or maybe the 10 after that
•      I will go in remission for a long time
•      Tonight I can have a drink, and it will be one of those nights it doesn’t cause a nightmare
•      This remedy will work, if not, one of the others will

And Fear:
•      That I will turn chronic
•      That these past methods that worked will fail
•      That person in the parking lot will see me sucking on an oxygen mask while rocking back and forth in the front seat of my car
•      That I will be caught in the open without any meds
•      That I will get a CH in situation where I am trapped, and I have to make a decision that might involve additional drama or chaos that I cannot manager

Trapped is the worst.    If I think about my own “Hall of Fame” CH attacks, most involved being trapped.

- There was the time I was at the dentist, getting a procedure done where I had to keep still with goop in my mouth for 30 minutes.   Wouldn’t you know, a 6-7 came on.  I barely got thru that.   

- Another time I was driving my boss.   One came on and I felt like being stubborn, and not going thru the drama of explaining it.   Luckily, I was wearing sunglasses, so he never knew that my right eye was pouring, and that I was in a battle for my life and sanity as we drove down the highway.   That was probably only a 45 minute 7.

- There was Spanish class in College.  I was trapped, but walked out about 75% of the time.  11 AM was my torture hour back in those days.   The teacher thought I was a slacker.  I didn't bother explaining.

But the one I will remember forever was the Monster I ran into the night of my rehearsal dinner.   After drinks, of course.   A 3-4 hour level 9+ that lasted until 4 in the morning (no 02 or Imitrex).  The day after, my wedding day, I felt battered and bruised the entire day.    That sucked.   But I drank on my wedding night anyway, because usually, the beast didn't penalize me for alcohol 2 nights in a row.  In college, Fridays often sucked, but that cleared the way for pf Saturdays.

I guess it's the public / social aspect that can really put these nightmares over the edge.   Its also the surreal factor.   I mean, the pain is war zone dramatic.  Yet often, 1 hour later, some of us are back at work, back to normal, albeit a bit tired, sweaty, flushed, or jittery.   We  don’t bother sharing with others what we went thru.  They ask “how are you?”  You can’t reply “hey,  I am great, and right before this meeting I  went thru a 60 minute open-brain surgery without anesthesia.  It was my second time today!”    You can tell others about a cold, or a car accident, or trouble sleeping.  But not about what you really went thru, because they wouldn’t understand.   Surreal.  It's a wonder that we all don’t have Post Dramatic Stress Disorder.   

One last thought:  I am not sure how I feel about the name the “Beast”.    I think it's a bit awkward to call it that outside this room, but at the same time, it fits.   I picture it as some sort of satanic bull with horns.  Sticking his barbed horns into my nerve center, and twisting.  Or squeezing.    The beast gets sleepy when I gas him with Oxygen.  He gets annoyed by verapamil, and usually avoids me.  He gets drunk on 2 drinks, and he is a mean, abusive monster on alcohol.  And the Imitrex shot, that's a tranquilizer dart for him.   Look out when he wakes up.   So the Beast is a good name, even if its childish to reference our disease in this manner.   But he’s there, and that's how I picture him, and you know what? He looks a little bit like the Red Bull logo.   Wait……

Again, thank you to everyone on this board.  I appreciate you all, my supportive wife, my fast and flexible doctor, and my current pain free moment, very much.

I do have one question I would like to ask, of anyone.  What are some of the CH's that are in your "Hall of Fame"??

Always a delight to hear from someone who has developed self-assurance and confidence in coping!

One suggestion: if you travel much, being caught away from home and/or in public is a burden. Might try this med 2-3 times to see if it's effective for you. Nice qualities of it: fast, cheap, a pill to keep at hand.
===
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

--------------------------------------------------------------------------------


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]

Bob Johnson wrote on Nov 1^st, 2013 at 1:31pm:


Bob, you are another person who's posts I recognize and have added value to me.   Thanks for your reply.

You say I came across as self assured, and I guess thats a goal, to feel that way.  And having the education and knowledge about options and strategies helps immensely.   But boy, when in the throws of a hit, even a mild one, I feel the opposite.  I just try to make it temporary.

Regarding the suggestion, I am interested.  I travel immensely for work, so its something I haven't figured out yet, as it heavy travel began in the last 4 years, when in remission.  I can't line up 02 in the 33 states I visit (but I might try).  And I really don't love the idea of using 2 shots a day.   They just feel.....harsh.

Does the drug you recommend compare to imitrex for an effective abortive?  Or is simply more convenient because of its pill form?   I will do some searches, but could you tell me more about your experience with it?

Re. Olanzapine. When I was using (have now aged out of Cluster!!!) it give 100% relief within 10-15 mintes. I shall never forge the first use: imagine a hot water heater; you cut a major hole at the bottom; water flows out in 20-seconds. That was the sensation I had! Made a believer out of me; never used another abortive after that.

I did buy a lotto ticket that night, but I'd used all my luck earlier

Now that thar was just plain greedy!

Joe

AussieBrian wrote on Nov 1^st, 2013 at 4:10pm:


I'm going to go out on a limb here and say that at least one of those hall-of-famers of yours were triggered by beverages of the alcoholic persuasion? Yes? No?

On a serious note though, I guess it was a good thing that policewoman had some familiarity with CH. What are the odds?

Anthony

My hall of famers were trying to out smart the beast Spring and Autumn for 43yrs.

Hoppy.

Hall of fame?  More like hall of shame.

In a very busy restaurant on a Friday night. I Start to get hit just as our dinner comes to the table.  I get up and instead of going to the car as I would normally do to get out of the public eye...I go into the women's room to moan and bang my head in a stall and a woman asks if I am all right.  I tell her I have cluster headaches and as soon as my med starts working, I'll be fine.  She goes out and calls the police on me.

25 mins. later.. hit over, I return to the table just as a huge cop walks up to us saying someone called about a crazy woman on drugs.  He was very loud and every eye in the restaurant was on me.  My husband very calmly explained what was going on. 

Just one more reason why our supporters are so valuable.  Never, ever take them for granted.

I've never been that embarrassed in my life.

Oh...another one of "US" was put in a mental hospital for 4 months because his doctors said no one could be in THAT much pain and was diagnosed with
Faking it"

Guiseppi wrote on Nov 19^th, 2013 at 12:56pm:


Hope you can run REALLY fast..... 

Guiseppi wrote on Nov 19^th, 2013 at 12:56pm:


Now, I'm quite used to the headaches and high levels of pain. Last time my back went out and I lost all feeling on my left leg, I got carted to the ER as usual. The doctor did the tests they usually do and at the end said, since I haven't asked for a painkiller, I might as well go home... Since pain without painkillers isn't real, right?

By that time I wanted to go to a mental hospital, since I thought the doctors have gone insane...

I'm just waiting for the next time I have to go to the ER, since I'll have to give all the personnel a lecture before they treat me. And THEN I ask for the meds!

I like the thread, I think the majority of the time it's annoying or frustrating.  Like trying to explain to your boss why you tend to have a "headache" at a specific day or time when you're in cycle (I'm epoisodic).  Or when you have a hit when it's time to do something your wife wants to do and it goes away when it's time to do something you want to do.  She can see the difference, so it's not that she questions it, but I feel like a jerk.

For me the scariest hit I had was a few years back driving with my daughter when she was 3 years old.  It wasn't a 10, but I would normally pace at the onset of a hit and not being able to do that, it intensified.  I had to fight the instinct to slam my eyes shut, restrain from slamming on the breaks, and force myself to ease the car off the road to ride out the hit before driving the rest of the way home, praying that it didn't hit again and harder.  That was a scary realization for me, that I could get a hit that strong without warning while I was driving and endanger others.

Thanks for letting me get that out.

I was sat with Maz just recently while she copped a K6 and have never before suffered such pain as the helplessness I felt. However do supporters manage this nightmare?

Her husband said quietly, "If I could take it from her, I would" and I know he meant it.

My CH Hall of Fame moment has to be the day I found this website.
First I have to say I try to not show emotion. It's just the way I was raised........men are tough, men don't cry, don't let sad movies get to you, yada, yada, yada.
When I found this website I was at work on the graveyard shift and alone in the building. Thank goodness.
This was back in the last century and the website was fairly new. I couldn't believe there was such a place. As I read I felt myself start to tear up. Tears of happiness on learning there were other people with CH. And, tears of great sadness to learn there were other people with CH.