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Re: What is your RITUAL when the BEAST hits?
Reply #25 - Aug 8^th, 2011 at 8:32pm

Look, I'm not judging you. I'm merely reporting that many, many cluster headache sufferers have found the narcotic road to be a dead end - that narcotics do a poor job of relieving the pain while setting the user up for more and more rebound headaches.

By utilizing this class of drugs as a primary abortive, you may be working as your own worst enemy. That's all I'm saying. No value judgement.

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LasVegas

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Re: What is your RITUAL when the BEAST hits?
Reply #26 - Aug 8^th, 2011 at 9:45pm

#1. Oxygen
#2. Imitrex injections
#3. Red Bull
#4. Ice packs, frozen bag of peas, cold wash cloth, face in freezer/walk-in cooler/in front of AC fan
#5. Firmly massage neck, temple
#6. Grab favorite kleenex & blow nose
#7. Pace, Scream, Cry Loudly

NOTE: None of the above is in any particular order, except #1 Wink

and after 33 years of suffering with extensive research and countless efforts of trial/error, I would NEVER ingest a narcotic or OTC drug for CH's as it is well known by 99% of us to be worthless for the abort and almost always creates rebounds.

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Ricardo CH.com Veteran Offline I Love CH.com! Posts: 214 MA Gender:	Re: What is your RITUAL when the BEAST hits? Reply #27 - Aug 8^th, 2011 at 11:16pm Sometimes I feel like I get worse rebounds from my triptan drugs than from my opiates...Some times after I've had a shitload of narcotics I even have a pain free day the next day, which is pretty rare.
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Nate_Q

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Re: What is your RITUAL when the BEAST hits?
Reply #28 - Aug 9^th, 2011 at 5:55pm

As for the post above:
I agree completely.I have never been keen on taking pills but if thats what helps then whats the choice? I can honestly say if I knew heroin would stop this pain Id be the first to shoot up.Like many have said...whatever it takes to ease the agony.

ps lets not start experimenting with heroin!

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Guiseppi

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Re: What is your RITUAL when the BEAST hits?
Reply #29 - Aug 9^th, 2011 at 7:14pm

There are actually a couple people on this board who use opiates as their primary relief for CH. They are rare exceptions, who carefully tried and chronicled all the main stream treatments and simply couldn't take the pain. They have educated themselves as to the potential pitfalls and dangers, and are appropriately monitored by their care givers. I would no more judge them then I would judge a mother giving her child tylenol. I do worry sometimes about knee jerk reactions of people automatically saying narcotis=evil.

That being said, since the vast majority of people find relief using mainstream meds, it just seems silly to not try the high percentage, low risk avenues FIRST! Any educated person will tell you a doctor whose FIRST treatment option for CH is narcotics, is a doctor CLUELESS on CH treatment.

There...Joe is done venting! Wink

Joe

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Wendy1

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Re: What is your RITUAL when the BEAST hits?
Reply #30 - Aug 9^th, 2011 at 8:45pm

Well said, Joe.... speaking from someone who had one of her worst beast days ever.

As I have said in previous posts, I have tried everything (the one that really sticks in my head was someone told me to try a blowdryer to the temple, during the beast, OMG, it made it 10 times worse..what was I thinking!).

It's only in the beginning of my cycle that I am hit so hard that I can't deal with the pain, not even for 5 mins.. I need to know I am going to be relieved from the pain... at ANY cost. This was the whole point of this original thread/post, I want to learn what others do, hoping something, anything might help me or others.

My story today, (I get up at 430a to be to work @ 630a).. I woke at about 330 a with a 6-7, I was out of my pain meds, (like I said, my doc is stingy), tried coffee, ice pack, o2.. nothing worked! 830a getting naseaus from the pain, out of o2, so I drag my sorry a** for some refills... o2 still didn't work.. I was just dying! 10:30 went to er, with one of the most horrible experiences I've had in 30 yrs.. seems they are no longer treat h/a with narcotics (despite my note from my local dr on a Rx pad stating an order for demerol and phenergan... The best they could do was Toradal (Yep, been there too, does nothing for me).. I left ER with the same pain I went in with : ( I missed a day of work, hoping I still have a job tomorrow, and am just now at 8:30p starting to feel somewhat normal again.... I AM EXHAUSTED.... and THANKS for letting me vent.

I did get my backup doc to call in more pain med (mine was on vaca)... so I know if the beast comes knocking tonite, I have some small hope that some of the pain can be taken away...

I love all of you and pray for an honest to goodness cure... I just don't know how much more of this I can take Cry

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: What is your RITUAL when the BEAST hits? Reply #31 - Aug 10^th, 2011 at 2:27am Wendy, have you got a high flow regulator for your o2? Very surprised the o2 is not aborting, that is why I ask. Give your employer "the letter to employer" that you can print from this site. PF wishes to you.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: What is your RITUAL when the BEAST hits? Reply #32 - Aug 10^th, 2011 at 7:08am Here's link to the letter LV mentions: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Dixie Angel

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Re: What is your RITUAL when the BEAST hits?
Reply #33 - Aug 10^th, 2011 at 8:18am

My ritual starts before I go to bed at night. I take a pain pill before, so that when the demon comes knocking on my door, I already have something in my body to get a jump start on the pain. Until I see the neurologist on Friday, this is my solution for now.

When the beast jumps on me with all four feet, I leave my bed and stumble down the hall to the kitchen. I start up my Keurig coffee maker and throw the heating pad in the microwave to heat for two minutes. Take a pain pill, make my coffee, grab the heating pad out of the microwave, and then I go sit on our back deck.

If I am lucky, this cluster will last only twenty minutes. If not, I can be outside up to three hours, crying and begging God to let me die. I try to stay in my chair, but more times than not, I will be pacing the deck or even rolling on the deck in pain. When the pain subsides, I crawl back into my bed and hope to sleep at least two hours before the next cluster hits me.

I do have other serious health problems. Until anything I want to try is checked out by my doctor, I will not try it. We know what is safe for me and use that for the time being. Smiley

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Re: What is your RITUAL when the BEAST hits?
Reply #34 - Aug 10^th, 2011 at 1:00pm

1. Monster Lo Carb/Red Bull Sugar Free
2. Cambia
3. Go for a run/spin bike (depending on how late it is)
4. lay on the couch and watch tv (the tears usually still roll down my face intermittently)
5. compartmentalize the pain as it comes on (a way I meditate, I suppose)
6. All else fails, shot of Sumavel (Another $90 gone)

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Kenoman29

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Re: What is your RITUAL when the BEAST hits?
Reply #35 - Aug 10^th, 2011 at 7:16pm

Wendy, I am so surprised when you said about bringing O2 to work. I've been on disabilty since January because of my back. Thankfully I was accepted for disability before the no good s.o.b. beast hit me hard in late Feb. 2001 so I do not work any more at age 55. How could I? I am on 15 lpm using a non re-breathe mask and I use an MTank. Thankfully BATCH helped me more than my own damn neuro about O2 therapy but thats another story. My question is Wendy, how the hell could you bring an M-Tank to work with you anyway? Assuming you are using an M-Tank.

Imirtrex 100mg tablets twice a day have been my live savior with 15 lpm O2 from the M-Tank. I've boosted it up from 12 lpm on BATCH's advise. And I was using the stupid Cannula for months until I got on to this website and board. I made the switch to the non re-breathable mask at these wonderful peoples insistence. As I say, I've gotten more help here, than my own neuro. Use the O2 as often as you need it. And get on Imitrex tabs. They last about 7 to 7 1/2 hours. But time everything right so you can sleep at nite.

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Wendy1 CH.com Veteran Offline Posts: 208 x1\|\|USA\|usa\|375\|96\|FL	Re: What is your RITUAL when the BEAST hits? Reply #36 - Aug 10^th, 2011 at 7:36pm Looking for feedback on the Imitrex pills and/or spray... I get rebounds bad (no matter how little I use) from the injectable. I shared a copy of the 'employer letter' with my boss... not quite sure, but I think she put it in the shredder... : (
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LasVegas

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Re: What is your RITUAL when the BEAST hits?
Reply #37 - Aug 11^th, 2011 at 2:19am

Wendy1 wrote on Aug 10^th, 2011 at 7:36pm:

Looking for feedback on the Imitrex pills and/or spray... I get rebounds bad (no matter how little I use) from the injectable.

I shared a copy of the 'employer letter' with my boss... not quite sure, but I think she put it in the shredder... : (

Hi Wendy...

Imitrex pills never worked fast enough for me, usually kicked in after 30 to 45 minutes, so I gave up on them.

Nasal spray I never liked because my nostril is usually clogged shut or too runny.

Do you have an HR dept? If so, you might consider having them add this to your personnel file. If not, make sure a 2nd supervisor receives a copy of that letter, so that you are documented with a healthcare need. Your boss should have karma coming to him/her very soon, be patient Wink

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JustNotRight

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Re: What is your RITUAL when the BEAST hits?
Reply #38 - Aug 11^th, 2011 at 4:28pm

Wendy1 wrote on Aug 10^th, 2011 at 7:36pm:

Looking for feedback on the Imitrex pills and/or spray... I get rebounds bad (no matter how little I use) from the injectable.

I shared a copy of the 'employer letter' with my boss... not quite sure, but I think she put it in the shredder... : (

The nasal is effective on CH hits if you get it in you soon enough...BUT it takes twice as long as a shot to work. Inject-able or O2 is best. I have sometimes had to use two shots to kill a hit (my doc said that was ok, but can't use any the next day.)

I have a copy of the letter save to my pc at work since we tend to go through supervisors like horses go through oats. I try to remember to give one to each new sup...Thanks for the reminder btw have to give one to our newest sup. Wink

Email yourself a copy at work and save, since HR isn't always as helpful as it's supposed to be.

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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: What is your RITUAL when the BEAST hits? Reply #39 - Aug 12^th, 2011 at 11:31am 1. Get to the the 02 If the beast is being stubborn, I will grab an icepack and wait him out because I'm even more stubborn.
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jman1980

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Re: What is your RITUAL when the BEAST hits?
Reply #40 - Aug 12^th, 2011 at 2:33pm

Until I found this site, I would just take my sumatriptan and sit in a hot shower. Sometimes that would not work so I would get out of the shower, turn my A/C in my apartment down to 70 and pace and shiver till it went away. Since joining this site yesterday I have added a can of red bull slammed right after my pill and it seems to have cut my time in pain in half twice now. Also I read somewhere in this post that meditation may work. As a person who practices daily meditation for spiritual purposes, my response is that it can work, but is extremely difficult. It requires a stilling of the body and mind which I find difficult when in extreme pain, but that does not make it impossible. I do meditate for pain on occasions when I have low to moderate pain in other areas of my body such as back pain or arthritis, which is effective most of the time. However, I have tried during an attack, and while I was able to keep my body still, I was not able to keep my mind still. I am truly happy for anyone who can find relief through meditation as we all wish for some kind of relief. I just wanted to comment about the meditation for those who expressed or have doubts. I urge those people to not dismiss meditation entirely until you have tried it as meditation has been proven to assist in the removal of pain, illness, and disease. You just have to have the discipline to follow through, and unfortunately for me I haven't reached that level of discipline yet. Someday. Someday.

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