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        Cluster Headache Help and Support >> Cluster Headache Specific >> Devil visits candlelight service?
        
(Message started by: Chappy on Dec 25^th, 2007, 12:54am)

Title: Devil visits candlelight service?
Post by Chappy on Dec 25^th, 2007, 12:54am

Neuroshave always asked if I've ever noticed any definite triggers, and so far I haven't found any - until tonight. Alcohol isn't a trigger for me, and I don't smoke so I'm not sure about that.

My attacks come throughout the day like clockwork, every two hours. Suck the O2, it goes away, then hits again 1.75 to 2.25 hrs later. Tonight I went to a candlelight service with my family, and was pf, not due for an attack for an hour, and brought my triptan to make it through the evening. At the end of the service, the lights came up, and 350 people blew out their candles. BAM! My hand went to my head, my eye teared up, and I was at an instant kip 5 or 6. I sprinted to the bathroom to snort my Zomig, and jumped in place in the stall until my wife sent my 8 year old in looking for me. My attacks usually aren't that fast, so ibdont disappear suddenly, and can make some excuse to excuse myself for awhile. It took a good 40 minutes to calm down, since zomig isn't the best, but my preventives keep my attacks usually below kip 5 or 6 most days.

Has anyone had an experience like this?

Title: Re: Devil visits candlelight service?
Post by George_J on Dec 25^th, 2007, 1:16am

Although others here have reported triggers that were scents, foods, drinks, or chemical odors, I've never been able to pinpoint anything that triggers an attack while in cycle--with the exception of alcohol. That'll do it. I understand that nitroglycerine will also do it, even when we're out of cycle, but I'm not going to try it.

All I can say, Chappy, is that I spent years trying to find some common cause in the onset of my attacks, and was never able to discover anything that reliably precipitated an attack. I was forced to conclude that simply because something suspect preceded an attack, it did not mean that it caused the attack.

Best of luck with your search, but I'm doubtful you'll be able to point to any common denominator that causes onset. They just are, and they happen when they happen.

All the best,

George

Title: Re: Devil visits candlelight service?
Post by E-Double on Dec 25^th, 2007, 2:59pm

never noticed any triggers other than discussing wedding plans with my then fiance (now wife) ;;D

Title: Re: Devil visits candlelight service?
Post by Guiseppi on Dec 25^th, 2007, 10:11pm

Just a suggestion on potential treatment. If I use only 02, CH comes back within 20 minutes of shutting off 02. Now I take an oral cafergot when I start my 02. The 02 knocks it down, the cafergot buys me up to 12 hours pain free time. Might be worth a try. Hope the rest of your Christmas was a little more peaceful!!

Guiseppi

Title: Re: Devil visits candlelight service?
Post by Chappy on Dec 25^th, 2007, 10:31pm

Thanks Guiseppi!

I have to ask, how's Pinnocio doing? ;;D

Seriously, I just got the O2 on Friday, a huge J tank, and now its 1/4 full. Today I've had the same experience you described - knocks it out, then back in 20 minutes. I finally gave up around 5 pm and just let the kip 6 come. I'm used to it, went for a walk in the cold, then when it eased up drove to walgreens to check out Xmas specials. Anything to avoid ruining my family's Xmas.

Are you chronic? Also, my blood pressure is about 135 when I wake up, then sprints to 165 as soon as I get up. At night it soars to 180. I've had everything checked, and there is no cause except weight maybe, so I'm wondering if I can handle cafergots. I'll definitely ask my neuro. My other concern is cost. Since this bastard hits m morning till night every day, I hardly bother with the zomig, or I'd spend $2,000 per month for 5 or 6 hours pain free. I guess it might be worth it if it got me back to working full time, but even on the zomig I don't feel clear-headed and energetic enough that I think I could work near my previous capacity.

Any advice or suggestions are appreciated. I've been treading water for 3 years, and burned out the last of my youth in the process - not really sure what to expect of my capacity from here.

Title: Re: Devil visits candlelight service?
Post by Guiseppi on Dec 25^th, 2007, 10:38pm

That's one of the pluses about oral cafergot, dirt cheap. I pay $10 a bottle for about a hundred pills and i think the receipt says the actual cost is like $30. So even without coverage it's a cheap option. Combined with oxygen it has all but replaced imitrex for me!

Guiseppi

Title: Re: Devil visits candlelight service?
Post by annar on Dec 26^th, 2007, 1:20am

Im sure you've read this, but have you tried the energy drinks with the O2. I always down a red bull 8 oz or 12 oz before I hop on the O2 and sometimes if I feel the need I'll down another one after im done with the O2 just for good measure.

Have you checked out the clusterbusters site? I haven't tried it YET but have read about many who have had much success.
good luck

Title: Re: Devil visits candlelight service?
Post by annar on Dec 26^th, 2007, 1:32am

btw...

I walked into a mall at the start of this cycle. It reeked of perfume and cologne. I tried to manage because I was shopping with my wife. We were buying her a watch for her birthday. After five minutes I gave her my card, smiled ,told her to pick one she liked and came running out to the parking lot, eye watering and drooping. Probably an instant kip 5/6 Major trigger for me.

Title: Re: Devil visits candlelight service?
Post by monty on Dec 26^th, 2007, 9:00am

There is something called the aryl hydrocarbon receptor in various cells. It is activated by gasoline, alcohol, many perfumes, and various types of smoke (doesn't matter if there is nicotine or not - partially combusted organic stuff contains aryl groups). This is a common trigger.

Title: Re: Devil visits candlelight service?
Post by E-Double on Dec 26^th, 2007, 10:34am

For those who have difficutly with triptans and/or $$ of the meds quite a few of us have had very good experiences with zyprexa.

I have used this when I was non responsive to triptans and O2 and found that it wiped out an attak as quickly as trex and I did not feel like crap afterwards.

Todd rozen did the research.

Good luck and possibly another inexpensive trick to add to your arsenal

Title: Re: Devil visits candlelight service?
Post by RichardN on Dec 26^th, 2007, 2:29pm

Besides alcohol (MAJOR trigger for me), exhaust fumes can trigger an attack for me.

Two years ago, was picking up my grandson from school. I got there early and, while waiting in the two pick-up lanes of (mostly) idling cars, decided to clean/sort out my van with my windows down. Fifteen minutes later, I picked him up and we headed to the Dairy Queen (4 min trip) for a treat. By the time we got to the order speaker, was digging for my 02 and huffing same at the pick-up window, then to the parking lot where, in between rocking & huffing, I explained to Alex (age 8 at the time) what was going on in my head and why the 02 WOULD help . . . was Kip 7-8 and finally went after about 20 min. He didn't freak and (I later found out) his comment to his mom was "poor grandpa"

I had the same reaction last year while tuning-up a go-cart for the boy.

I, my daughter and grandson share an oft-crippling skin condition (EB . . . Epidermolysis-bulosa, simplex), and he himself is no stranger to daily pain, plus he has been aware of my battle with cancer (winning that battle so far). . . . so we are not a family that hides medical problems . . . and he doesn't dwell on them . . . GREAT kid!

Be Safe, PFDANs

Richard

Title: Re: Devil visits candlelight service?
Post by Chappy on Dec 26^th, 2007, 3:00pm

guiseppi - thanks for the tip. Since my attacks are all day long, that may make more sense. I'll bring it up with my neuro. I know ergot is a vasoconstrictor that isn't specific to the head, so it may not work with my hypertension.

Red bull: I slam them down all the time, first sign of a hit, and they seem to help. Docs said to stop them mo the ago due to hypertension, but 3 months of 0 caffeine didn't change a thing so screw that.

Perfumes can trigger the autonomic part, but not the headache part for me - like getting high.

Adding to what Monty said about the Aryl hydrocarbon receptors - that's what I wasn't talking about on this post. When everyone blew out the candles, the room filled with smoke, and that's what I figures caused the hit. With cigarettes, its the tar (hydrocarbon) that supposedly trigger attacks, not the nicotene, as far as I know. Nicotene is a vasoconstrictor, I believe? I've never heard of anyone hving chewing tobacco as a trigger.

Clusterbusters: I read through the whole site, and I say more power to them. My wife and my fear of jail would probably keep me from trying for quite some time...

Title: Re: Devil visits candlelight service?
Post by Guiseppi on Dec 26^th, 2007, 3:38pm

2 more things...scatter brain that I am....you had asked if I was chronic, thankfully I am not, I tip my hats to the chronics that don't get breaks. :-[ I'm episodic, usually 2x a year, 8-12 week on cycle.

It was recently suggested I try the enrgy drink instead of the cafergot with my oxygen. Many who found the beast coming back when the 02 stopped, got relief with the energy drink combined with 02. I (thankfully) missed my fall cycle so I haven't had a chance to try it yet, but fully intend to give it a shot.

Guiseppi

Title: Re: Devil visits candlelight service?
Post by BarbaraD on Dec 28^th, 2007, 8:19am

I'm chronic and I do the cafergot (when I have to - over a 7). Usually do the Red Bull, O2 and maybe some coffee after the O2. If this don't do it - I hit the cafergot.

Cafergot is cheap and doesn't have the side effects of trex - seems to last a lot longer than trex.

As far as blood pressure. I have LOW blood pressure normally EXCEPT when I get hit and then it goes UP. It stays up (this is normal when in pain) until I get rid of Mr. Demon.

As far as triggers -- I've had some "one time" triggers. MSG - once but only once. Beer (I didn't drink beer for 12 years) and now it doesn't bother me - I don't push it but can have a beer occasionally without any trouble. I don't like red wine anyhow, so I haven't tried that one. Candles, gas fumes, perfume - maybe one time - then the next time - nothing. The barometer is the only thing that's constant that I've found and it will wrack havok everytime. So MY scientific conclusion is - there's NO rhyme or reason!!!!! ;;D

Ask your doc about some cafergot and see if that will help. It's worth a try.

Hugs BD

Title: Re: Devil visits candlelight service?
Post by Maffumatt on Dec 28^th, 2007, 8:36am

I have a few triggers, the biggest being acetone. Whether in cycle or not one whiff of that will start a hit. Diesel and gas fumes are a close second with exhausts fumes being third.