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        Cluster Headache Help and Support >> Cluster Headache Specific >> Public Pain
        
(Message started by: thenucman on Mar 20^th, 2006, 4:47pm)

Title: Public Pain
Post by thenucman on Mar 20^th, 2006, 4:47pm

I know we all advoid other people during a CH, when we can. Sometimes, public places are unadvoidable.
Last Friday, I had a CH in my least favorite place: an airplane. I knew it was going to be bad, but there wasn't much I could do about it. We were wheels up when the first symptoms hit. All I could do is dry swallow a Frova (which is all I had on me at the time). The CH progressed to a KIP 7-8 by the time we reached cruising altitude with me squirmming in my seat. I really should have said something to the poor woman sittng next to me, but the optomist in me said it wasn't going to be that bad. By the time I should have said something, I had tears rolling down my cheeks.
The best thing was, this was only a 60 minute flight. As we descended, my pain started to diminish. By the time we got to the gate, it was a very managable 2-3. With my head still in my hands, the woman sitting next to me tapped me on the shoulder and asked ' Are you OK?" I replied that I was fine now that we landed. I discovered the flight crew had radioed ahead for a wheelchair for me too! I didn't need it, fortunately.

Title: Re: Public Pain
Post by LadyC on Mar 20^th, 2006, 5:18pm

Have you tried Imitrex injections? I never leave the house without them. For me, 1/2 of an injection will stop a CH within 10 minutes. I'm sure it's the only reason I'm still employed.
Wishing you PF travel in the future!
Carol

Title: Re: Public Pain
Post by thenucman on Mar 20^th, 2006, 6:03pm

Hi Carol,
Actually, that was my very first 'road trip' with a brand new Imitrex Stat box in my bag. However, I did not RTFM!!!!! I had used a full dose that morning at work and was unsure if I could use more that evening. Trying to RTFM during a CH would not have worked.
I have read and printed all the injector tips now .. not sure I can manage shorting my doses on the road either.

Dave

Title: Re: Public Pain
Post by BarbaraD on Mar 20^th, 2006, 8:29pm

Dave, What's RTFM?

Check the timing on the Trex -- If you took a dose in the morning I think a dose at night would have been ok. I've "shot up" on a plane (in the seat) and damn what anyone thought - never explained it to anyone - just get relief!

Oh, one thing, if you fly a lot -- carry a note from your doc saying that you have CH and that you carry meds for it including syringes, etc. I've never been stopped or asked about them, but you never know.

If you really want to have some "fun" try having a hit in O'Hare right after they cancel a bunch of flights and your in a wheelchair holding a cane... It's amazing how fast they can find a hotel room to get you into.... I think I may can go back thru there in about another 5 or so years.... :D They'll probably have forgotten me by then....

Hugs BD

Title: Re: Public Pain
Post by Jasmyn on Mar 21^st, 2006, 2:11am

In situations like this, injecting the 2 - 3 mg trex is the best way for me and can inject more frequently with no side effects.

When you're in a place where you cannot escape to a bathroom, just inject there and then. It saves you the agony of going through a full blown hit in front of other people, enduring the marathon of pain and it saves the poor people around you from witnessing "Beast" the movie. ;)

Good luck with the next flight.

Title: Re: Public Pain
Post by Bob_Johnson on Mar 21^st, 2006, 11:31am

Just the kind of situations which call for one, effective, pill !

1: 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.

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

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.

Title: Re: Public Pain
Post by thenucman on Mar 21^st, 2006, 11:53am

BD, RTFM is Read The F@#$ing Manual ... a little something left over from my military life many years ago.

I do need to figure out the partial injection routine, though. I know I don't need the full 6mg to tame the beast.

Quote:

and it saves the poor people around you from witnessing "Beast" the movie.

LMAO, Jasmyn .. awesome way of putting it. I hated being the star, too!!

Title: Re: Public Pain
Post by Not4Hire on Mar 22^nd, 2006, 7:38am

Just a little anecdote that might help next time on an airline flight... I was hit on three separate flights to South America. The first I had to tough out due to no meds, the second I asked the attendant if they had oxygen (they did and were glad to give me if it would shut me the hell up) and the the third time I brought my own. This was pre-9/11 though and I'm sure things are different today.

Still, it IS possible to make arrangements with the airline in advance to bring your own O2 setup on board. If you are in cycle or find that the pressurized cabin is a CH trigger for you, this might make that flight a lot more comfortable for you and the rest of the folks on board.

Hope this helps.....Steve(not4hire)

Title: Re: Public Pain
Post by thenucman on Mar 22^nd, 2006, 2:11pm

Thanks Steve.
I have only recently gotten over my own stygma about ordering O2 for my hotel room when I travel. I know how stupid that is, and I have paid the price many nights pacing hotel room floors.
I found out that my O2 provider (Apria Healthcare) will set up O2 for me at my hotel if I give them enough notice. I recently traveled to Santa Fe, NM. When I got to Albuquerque, I took a 1 hour shuttle bus to Santa Fe. 10 minutes from town, a CH hit me. I called Apria to make sure my O2 was at the hotel. Turns out they were on their way. When I got to the hotel to check in, Apria was there with 5 'E' tanks for me!!! That guy got a tip! That was a bad night too, as I recall. I was up every half hour fighting off the beast with a snort of O2 .. used a full tank that night. Just not used to 7000 ft elevation.
So, knowing myself, I can't imagine myself dragging my O2 setup on board a plane, despite the pain. I will make sure i have an Imitrex injector available.

Title: Re: Public Pain
Post by Skyhawk5 on Mar 22^nd, 2006, 2:59pm

The worst for me is being caught in public. I've had a couple of friends want to call 911. "I thought you were going to die." Been on the side of the Expressway, on my boat, at the hospital (visiting), 1st attack starts on a road trip, but luckily not on an Airplane. I've tried to set up O2 on a trip but Northwest would only use thier O2 and charrged $150 for this.

I too have Apria Healthcare and I have set up O2 at Las Vegas twice and it is covered by insurance. Had to pick it up though. Just my 2 cents. Skyhawk5, Don

Title: Re: Public Pain
Post by seasonalboomer on Mar 22^nd, 2006, 3:21pm

I did the beast dance on an airplane to Germany a couple of years ago. Luckily I had an aisle seat but the poor guy across the aisle...god knows what he must have been thinking was going on. in the many years of CH, there are a some hits that stand out in memory - that was one of them. my other recent stand outs were when I got hit while refereeing mens hockey games. it was a bad night to give the ref much lip about any calls - i believe my response to virtually everything was "just shut the fuck up". i hated blowing the whistle though as it had a strangely piercing quality.

oh CH, "thanks for the memories...."

Scott

Title: Re: Public Pain
Post by maffumatt on Mar 22^nd, 2006, 6:45pm

its hard to act like there isn't anything going on isn't it? "No nothings wrong I just have a couple screwdrivers being shoved through my skull is all, no I'm not crying, I just got a little something in my eye."

Title: Re: Public Pain
Post by owk on Mar 27^th, 2006, 6:44pm

I have been selfishly not shown up lately around here (PF for now), but after seeing this thread I just had to post a comment.

It's not fun. But hang in there. Forget about the other people, worry about yourself. If you didn't see it coming, just take your trip and explain later.

I feel your pain. I'm episodic, KIP 8 max for now. Maybe once I hit 9, but I doubt it. But it is still the worst pain I've ever felt.

Since I'm self diagnosed*, I don't take anything other than caffeine and melatonin at night during the cycle. But my hits are not at night, like some. Mine are around noon, so I've had them in the middle of class, or during lunch with friends.

(*) About the self diagnosis: I've had three cycles so far, and most likely in August I'll get my fourth. But I have no means of going to the doctor for now.

Title: Re: Public Pain
Post by cluster_mom on Mar 28^th, 2006, 8:14pm

I understand your situation totally. I recently was on vacation with my family, ( husband and 4 kids, three under age 5). I was sick the whole vacation and spend most of my time in the condo. Then just as we are arriving at Tampa Bay airport I get one. My poor husband had to check us in to our flight with our children running a muck in the airport and me crying all the way. He didn't think we would make our flight, but it subsided right before we boarded. After the fact I felt like and ass for walking thru an international airport crying like a baby and holding my head in my hands. I prefer to do my crying and screaming at home. Then we had a night flight and I could not sleep for fear that it would return. I think that the people in the airport thought that I was crying because I was traveling with all those kids. I will never ever travel during an episode again.
cluster_mom

Title: Re: Public Pain
Post by rapunzel on Apr 1^st, 2006, 8:03am

I debated on whether this should be posted here, or under Jobs and CH. I decided since I feel more humiliated than anything else, it would go here.
Got hit at work last night- in front of everyone. I was taking Xrays, and the pain was so bad, and coming so quickly- I snapped at both girls helping me. I will owe them an apology when I return to work. However, I discovered that it is impossible to take decent xrays while in the throes of a ch.
The first set didnt turn out, so I had to take them again- everyone was telling me I needed to go home, I think I was scaring them- red eye and all, and what could be perceived as confusion- however, I was trying to "will" away the pain. heh heh heh- you know how you think you can have enough mind power to make a cluster leave before it takes over? doesnt work, but I still try.

I couldnt stick around. I didnt finish the xrays- told everyone except the dr that I had to leave- I dont know where the doctor was. Coworkers wanted to call my husband, but I told them i will sit in my car until it passes, but I have to leave. They cant possibly understand the urgency, but I knew within minutes, I was going to be banging my head on the wall.
Sooooooo, I suppose I will find out Monday if I will be wrote up for not finishing my work before leaving- and leaving without notifying the dr, and any other reason like general bitchiness to my coworkers.

Title: Re: Public Pain
Post by Richr8 on Apr 1^st, 2006, 10:11am

I've been there before. With the beast bearing down, a quick exit is all that is on your mind. Nothing else matters and apologies that are never good enough must follow. I thank God it has only happened to me in public on a few occasion. More often, the "no show" excuses go out that lead to ever diminshing invites.

Hang in there,

pf wishes,

rich

Title: Re: Public Pain
Post by thenucman on Apr 1^st, 2006, 12:15pm

Rapunzel, I don't know how you could take decent x-rays during a CH either!
I understand the humiliation factor, though. Even in a hospital or a medical facility where you would think they would be more understanding.

Title: Re: Public Pain
Post by pfunk on Apr 5^th, 2006, 1:02am

I too have been there. I got hit right in the middle of an important meeting of all the Phys Ed/health majors at The College of Charleston. Only a few of my professors knew the extent of my cituation. The head of the department sat up there making the speech and stopped suddenly as he realized that my right eye was red, tearing and swollen but I sat there and tried to grin through the meeting. Finally one of my professsors lightly tapped my shoulder and told me I'd be okay to leave, she'd fill me in on the rest later. Sincce that point, I have developed quite a respect for my teacher because they have all been so undertsanding. I've missed =to 3 weeks of classes and three exams. I have now been exempt from two of them and I can take the other as soon as I feel I' ready.

Pfunk 8)