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"??

Welcome to the board! Your attitude is refreshing, you've clearly taken the bull by the horn from day one! As far as Post Traumatic Stress,  we have had a doctor who spoke at a couple of our CH conventions, and has done some break out sessions with CH sufferers, exploring the aspects of PTSD as it relates to CH'ers. His belief is that anyone who suffers the incredible pain we do, knowing it's always going to come back, has varying degrees of PTSD.

My hall of fame hit.......

Would have to be the family camping trip in about 1985???? or so, all I had for abortives then was sublingual ergotamine and lidocaine drops up the nose of the affected side. Rode out about a 90 minute screamer in the camper while poor mommy kept the kid outside and away from me! Thank heavens for Oxygen.

Do explore the D-3, over 3 years pain free after well over 30 years episodic.

Joe

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.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Guiseppi wrote on Nov 1^st, 2013 at 1:13pm:

Welcome to the board! Your attitude is refreshing, you've clearly taken the bull by the horn from day one! As far as Post Traumatic Stress,  we have had a doctor who spoke at a couple of our CH conventions, and has done some break out sessions with CH sufferers, exploring the aspects of PTSD as it relates to CH'ers. His belief is that anyone who suffers the incredible pain we do, knowing it's always going to come back, has varying degrees of PTSD. My hall of fame hit....... Would have to be the family camping trip in about 1985???? or so, all I had for abortives then was sublingual ergotamine and lidocaine drops up the nose of the affected side. Rode out about a 90 minute screamer in the camper while poor mommy kept the kid outside and away from me! Thank heavens for Oxygen. Do explore the D-3, over 3 years pain free after well over 30 years episodic. Joe

Sir, I have read many of your posts, and clearly you are great in this arena.

I think that is fascinating that a Dr. would talk about the special stress.   My strategy is to tend to just pretend it never happened, as much as possible.  Which isn't always the healthiest.   

Your hall of fame hit also included being trapped, not wanting to be seen by your kid.   I know the feeling!

Thanks for your reply.

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

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.

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?

My hall of famers? I was found pacing one evening fully two miles from home and buck naked. The lady policeman who brought me back knew about CH as her dad had them until it became too much for him.

Nother time I woke to find I'd done a full cut and polish on my 4WD.

I don't remember much pain from either attack but She-Who-Counts-My-Beers assures me they were real

Cheers from down under,

Young Brian.

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.

A great first post and I love the attitude you have to CH too.


Loxygen wrote on Nov 1^st, 2013 at 12:38pm:

Reading everyone’s messages is not only informative, it is so therapeutic.

This really sums up what a lot of people will find with these forums, it is the understanding that we're not alone and others do understand.

I've only really been caught outside in public once with CH (so far, I've been lucky), but we were in Perth, Australia, having dinner outside at a restaurant in Northbridge. I'd just finished when a CH hit and I realised I was without an abortive and the hotel where my oxygen was waiting was a 15 minute walk away. With the kind of luck that wins lotto, an ambulance pulled up within 2 metres of me to treat someone who'd fallen and had a few minor cuts. My wonderful supporter grabbed hold of one of the ambulancemen pointed out that I was having a CH and I needed high flow rate oxygen via a non-rebreather mask NOW. He just did what he was told and within a few minutes got to see just how effective oxygen is. I then got asked 1001 questions about CH which they were really interested in and they promised to educate their colleagues.

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

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

Now that thar was just plain greedy! ;D ;D ;D

Joe

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

My hall of famers? I was found pacing one evening fully two miles from home and buck naked. The lady policeman who brought me back knew about CH as her dad had them until it became too much for him. Nother time I woke to find I'd done a full cut and polish on my 4WD. I don't remember much pain from either attack but She-Who-Counts-My-Beers assures me they were real Cheers from down under, Young Brian.

Impressive on many levels!

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

My hall of famers? I was found pacing one evening fully two miles from home and buck naked. The lady policeman who brought me back knew about CH as her dad had them until it became too much for him. Nother time I woke to find I'd done a full cut and polish on my 4WD. I don't remember much pain from either attack but She-Who-Counts-My-Beers assures me they were real Cheers from down under, Young Brian.

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? ;D

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

Anthony

Stony cold on both occasions, Anthony, and doubt I'd have been brought home if I'd smelled of grog. The lady-cop was very considerate and even had a little cry, which her offsider didn't understand for a moment.

She was back a month or so later as she needed documents authorised outside of court hours and never mentioned a word about the incident. Love to have a beer with her one day.

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

Hoppy.

How about wishing for death because of a kip 10 and missing my daughters birthday party,and then later the same day,being socked by another k 10 while trying to deliver my best man speech at a friends wedding.that was before I knew what imitrex was.all I had was Vicodin and excedrin migraine.damn was that a bad day.

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"

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

It was probably one of the women, only men get CH, those damned women just want attention...right Linda? ::)


(swiftly running for cover)

Joe

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

It was probably one of the women, only men get CH, those damned women just want attention...right Linda? ::) (swiftly running for cover) Joe

Hope you can run REALLY fast.....  :P

Vikinggirl wrote on Nov 19^th, 2013 at 6:15pm:

Guiseppi wrote on Nov 19th, 2013 at 12:56pm: It was probably one of the women, only men get CH, those damned women just want attention...right Linda? ::) (swiftly running for cover) Joe Hope you can run REALLY fast.....  :P

When I'm scared I fly like the wind!!!!!!!!!!!!!! :o ;D

Joe

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

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

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!

Whenever I'm now asked the standard "...how much does it hurt on a scale of 1 to 10..." I always give two answers, one using a "normal" person's scale and one using my scale with CH experience (with an explanation of how CH means that the pain scales are distorted).

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.

Mine was on a saturday when it's impossible to see a doctor. It was before I had been diagnosed so I had no meds other than over the counter headache pills.
I had a mighty k10 which lasted 16 hours. It was the only time in my life when I seriously considered killing myself, because there was no other way out. I had already taken all my pills (not intending to die at this point - just desperately trying to get rid of the pain), then I started on my husbands pills, which are for a variety of complaints not related in any way to headaches. I was taken to the hospital where the best advice I got was to increase the dose of what ever it was I was taking. My husband told them I couldn't take any more without serious consequences so I was told I would have to wait till Monday to see my GP.

The hardest thing was seeing my husband throw out his own much needed medication, while my grown up son sat on my bed and cried like a baby. While my head was exploding my heart broke.

I have good meds now so hopefully I will never put them through that again.

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.

Brian    [smiley=wave.gif]
You helped more than you know. Just being with someone who actually knows what this thing feels like was a kind of relief. I didn't need  to explain and instead of making a fuss over me you left me to get on with it in my own way, which is exactly what I need. You probably know that from experience. It's far less embarrassing, and I was able to enjoy the rest of the day with you. Thankfully it was only a k6. I concentrated hard on restraining myself because I was in public and with a bit of luck people around us didn't notice. If it had been a k10...........well, and if the bloody injection pen hadn't got jammed it would have been almost a non event.

I got through it like I'll get through the next one, and had great fun. Thanks for understanding and knowing what to do.

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.

Tears of happiness on learning there were other people with CH. And, tears of great sadness to learn there were other people with CH.

Well put sir. [smiley=bow.gif]

Joe

Back in the Spring of 2005 when the  [smiley=evil.gif]
came to visit. I went to my GP to get some Imigran.
He wrote a regulation 24 prescription, 12 x 2 100mg tablets
in a box supplied all at once. I went to the chemist to
pick them up.Pharmacist said he had none in stock, only
4/tablet 50mg box. Off to another chemist same answer,
here we go,CH on it's way and no meds. Phone Shane "my doc" for help, CH now about kip5, asked where i was and to sit tight, as if i was going anywhere any time soon.Faxed
a new script, 4/50mg tablets with 5 repeats 20 tablets.To late CH now at kip10 will have to ride this one out.The moral
to this story.Don't get caught without your meds.

Cheers. Hoppy.

HoF Covering Golf with one eye shut,voices on your headset and waiting for sumi pill to knock the beast off for a few hours. I prefer we wrestle it out on a cold bathroom floor sans the sumi with red bull and pillow.

well, my hall of famer,
in January this year, my wife gave me the green light to buy a boat, so with 4 days searching, and organising a survey report, off I went to Sydney from Melbourne to purchase it ( about 1000 km away)
unfortunately, we were experiencing one of our worst fire seasons, it took me 3 days to get to Sydney, on the way, my first big cycle started, kip 8-10's
I don't know how I managed to drive all that way, stopping every couple of hours, taking an imagran tablet, then getting diverted off the main highway because of the flames lapping over the road.
I managed to stop in a hotel once I bought the boat for a days rest, but the clusters weren't letting up, but I was on a mission !
half way back, just as a cluster kicked in, they had the road blocked off completely, a young female police officer walked towards my vehicle, took one look at me, and thought I was intoxicated, or on drugs !  I explained that I was having a cluster attack, and needed to medicate and just be left to ride it out, she pulled my vehicle up beside hers, as other motorists were being stopped, and I rode out the attack, she was brilliant, giving me water and keeping an eye on me. after about an hour I started to feel human again, with the road blocked for about 3 hours, I managed to get some sleep and talk with her about what cluster's were. turned out her sister suffered chronically from migraines, and the empathy I received was fantastic..   once the road was re opened I stopped a few miles down the road in a motel for a couple of days, it was 40 celcius outside, so I spent the hole time in my room with air conditioning.    I was still in cycle, but I manage to make it home safely, timing the imigran tablets to perfection. back home my wife read the back of the imigran packets warning about driving while on them !!!
  in hindsight, I should have returned home once the cycle started, but I was already 500 km from home !
   I was very lucky.     what an experience !!!!
 
       but what a boat !!!!!   LOL

colin
   

My hall of fame....gettting noticed globally with 212,000 views on one of my videos.
Getting emails thanking me weekly that they got insurance coverage.Accepted for benefits,disability,
Or just a simple thank you for making awareness.
in 2009 when I made my 1st video. I made it for maybe 10 people to help understand what happens to me. Never in my wildest dreams did i ever expect the noterity I get.
My videos have been used in 3 different countries for  educating doctors in France,Swizterland and recently Japan.
I get emails all the time thanking me from spouces.
I only ever did it intially to educate the non believers.
Now I do it if I can help just one person look outside the box and live instead of the other.
I had a movei director contact me about doing a documentary. I was very intrested but declined because my familys privacy is important to me and I didnt want it to become a reality show/spectacle.
Our disease is not for anyones amusement

Hi Svargas,
Thought this thread might be of interest.

Hoppy.

My Hall-of-Famer is running down the street screaming at 4:00 AM with the worst CH I ever had. Then I picked up my right foot to run another step and the pain was gone before my foot hit the ground again.  I LOVE how fast the pain snaps off for me, and I LOVE the euphoria when that happens. 

When I'm in cycle, I live for the good times between the headaches.

Love, all!