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Topic: 14 hour 'stuck' cluster (Read 421 times) |
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NLancaster
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Hi Folks,
Late yesterday afternoon I felt a CH coming on and so I took my Imitrex expecting to kill it, but the pain didn't stop.
It peaked about 20 minutes later, by which time I'd got home and was taking O2.
I felt it start to subside and dropped to the point where it was hurting enough to make me take notice but not enough to make me roll around on the floor.
The pain stayed that way for the rest of the night. I took another shot of Imitrex during the evening and it seemed to help, but it didn't kill the pain.
I actually woke up with it this morning 14 hours later - I took another shot and it went. I know, it could have been a diferent headache, but it 'felt' the same, hard to describe.
Anyone else experienced this?
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| « Last Edit: May 13th, 2005, 6:44am by NLancaster » |
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Sean_C
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Re: 14 hour 'stuck' cluster
« Reply #1 on: May 13th, 2005, 7:47am » |
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If my cycle is at its peak, I get that only for about a day or two. Usually on the kip 3 scale, its kind of like a constant shadow followed by some mean hits throughout the day and night.
Trex usually has little effect.
Does that sound the same, just curious?
Sean.........................
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NLancaster
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Re: 14 hour 'stuck' cluster
« Reply #2 on: May 13th, 2005, 8:42am » |
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Yes!
The Imitrex didn't seem to do much at all. I don't know about you but when I inject Imitrex I can 'feel' it moving through my body. I got that feeling and the pain seemed to retreat a little but it was brief.
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E-Double
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Re: 14 hour 'stuck' cluster
« Reply #3 on: May 13th, 2005, 9:04am » |
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It appears that it might be a mid level "shadow" as we call them.......that lingering " I'm here just to remind ya that I can strike at any time" feeling.......or you also had a migraine??? It's possible.
Either way glad it left
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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thomas
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Re: 14 hour 'stuck' cluster
« Reply #4 on: May 13th, 2005, 9:06am » |
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Hmmmmm a chance to speak about my theory. When I read the title of the post, my first thought was "Here we go again  ". But as my headache education has grown over the years, it is my belief that almost all CH sufferers may in fact suffer from 3 headache types, they just don't know it. The shadows that last for days and wear us down I believe that those are a type of migraine. The short intense hits that go away before you can take your abortive, I believe that those are either CPH or SUNCT. Then of course the CH hits themselves. I think this is also a reason that so many of us go undiagnosed for as long as we do because of the different aspects of pain levels and duration. Just a little theory of mine. If you don't agree with me, no problem, I am after all NOT a doctor. 
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Bob P
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Re: 14 hour 'stuck' cluster
« Reply #5 on: May 13th, 2005, 9:35am » |
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Towards the end of my last cluster cycle I had an attack which caused a very sharp pain in the top left side of my head, along with the normal eye pain. The eye pain (normal attack) subsided but the pain in the top of my head stayed for days. I figured I finally blew out a nerve or something!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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BarbaraD
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Re: 14 hour 'stuck' cluster
« Reply #6 on: May 13th, 2005, 9:40am » |
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Thomas - that might not be a bad theory.
I never had headaches in my life (except for occasional sinus attacks which were relieved with Sinutab) until I woke up one night with a Kip 10. Diagnosed two months later as CH.
Over the years, I've developed Migraines (which actually run in my family) and another type. The bad part is when one hits I'm never sure of "which" kind until it almost peaks - then it's med time (3 different meds - one for each.
Aren't we the lucky ones.
Hugs BD
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What don't kill ya, Makes ya stonger!
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Bob_Johnson
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Re: 14 hour 'stuck' cluster
« Reply #7 on: May 13th, 2005, 9:56am » |
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A couple of possible causes:
: Headache. 2004 Jul;44(7):713-8. Related Articles, Links
Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.
Objectives.-To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. Background.-Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. Methods.-Six CH sum-naive patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. Results.-All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. Conclusions.-Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.
PMID: 15209695 [PubMed - in process]
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Second, Imitrex has a relatively short life and if you have an attack with a "life span" longer than the effective life of the Imitrex, the experience will be a redevelopment of the headache or a sense that the Imitrex has failed.
Then there is "normal" variation which has no special meaning!
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Bob Johnson
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mynm156
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Re: 14 hour 'stuck' cluster
« Reply #8 on: May 13th, 2005, 12:03pm » |
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Yes I get this also. I have always felt this is a shadow. When it wont go that is when I HAmmer myself with a Shot of Stadol. it helps me take that residual shadow down that pretty much the only time it helps doesnt knock me out anymore just helps a little.
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maria9
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Re: 14 hour 'stuck' cluster
« Reply #9 on: May 13th, 2005, 7:18pm » |
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Hey all,
As a 32 year veteran of these CH's here is my take on this:
Many years I went unmedicated due to a lack of diagnosis and then many more years I went unmedicated due to my neurologist saying we have tried everything, sorry.
The shadows are due to an inflammation of the trigeminal nerve or the vessals pressing on it, during the CH cycle the vessals surrounding it may be in a constant state of inflammation or it could be the trigeminal nerve itself. After particularly bad CH's (kip 8-9), I consider the next day headache as post CH sequela. The CH was so bad and debilitating that you felt like you were hit in the head with a baseball bat, believe it or not it even hurt to move my right eyeball (my CH side) the next day, the left-over effects of a very insulting headache to my poor suffering cranium.
Interstingly enough, the last cycle I had last spring I had no shadows or the post CH sequela, nor did I have the kip 8-9's that pushed the sympathetic system into high gear (sweating). But maybe the verapamil and shrooms helped. 
Marsha 
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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Jonny
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Re: 14 hour 'stuck' cluster
« Reply #10 on: May 13th, 2005, 7:46pm » |
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on May 13th, 2005, 9:56am, Bob_Johnson wrote: Imitrex has a relatively short life and if you have an attack with a "life span" longer than the effective life of the Imitrex, the experience will be a redevelopment of the headache or a sense that the Imitrex has failed.
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That should be in the CH bible, Bob.....Its what I find to be true. Zomig NS with a MUCH longer life works like the gods made it just for me.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Sean_C
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Re: 14 hour 'stuck' cluster
« Reply #11 on: May 13th, 2005, 10:43pm » |
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on May 13th, 2005, 9:35am, Bob P wrote:| The eye pain (normal attack) subsided but the pain in the top of my head stayed for days. I figured I finally blew out a nerve or something! |
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Bob P my scalp feels as though it has a sun burn, is this what you feel also?
Jonny and Bob J I'm definately getting the Zomig, sounds like a winner
Sean................................
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zebb37
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Re: 14 hour 'stuck' cluster
« Reply #12 on: May 14th, 2005, 1:04am » |
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I tend to find that whilst the SQ sum works quicker it does last for a far shorter time and whatever 'rebound' I might be getting from a high kip # is generally not worth it.
I really only use the sum in emergency cases these days.
As for the Zomig, the ordinary pills are only any good for migraine sufferers - they take far too long to take effect - up to 2hrs (and you know what 2hrs of a kip 8+ is like) I used to find and then I'd be wondering wether the CH had just gone or wether it was the pill that had worked.
Then came the rapimelt - place it on your tongue and hey presto within an hour.
And even better the nasal spray - double your dose (they should do a 2,5mg dose for us guys) and if taken before your nose starts to bung up can kill a CH dead within minutes.
My problem with Zomig NS is is that I tend I tend to save for the really big boys and take it too late. I did this recently in Sri Lanka whilst on a 6 hr cab journey. The poor cab driver was worried sick as I thrashed about in the back of the car for nearly 2-hrs. Needless to say he got a HUGE tip for not kicking me out.
Other considerations are the price - although meds are essentially free here in the UK - 10 dollars/perscription item and even better you can prepay which means that I pay roughly 75 dollars ever 4 months for an unlimited amount of items - the actual cost of the item is covered by your own docor's surgery.
I'm always getting reminded that the SUG Sum Costs something like 70 bucks a piece, the Zomig ns costs something 50 bucks a piece and the Rapimelt only 12 bucks.
You can see where they're coming from and sometimes I find it really hard to remind them where exactly I'm coming from.
Feck me that was a longer post than I expected
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bnfreeman
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Re: 14 hour 'stuck' cluster
« Reply #13 on: May 14th, 2005, 7:13pm » |
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Yes, me too. Yesterday at 6:00pm mine came on and I had nothing left to take except percocet and that doesn't help when they are a 10. By 3:45 I had to go to the ER. There are very few ER doctors who know how to treat CHs and this one didn't. After a shot of dilaudud ( however you spell it) it was still a 9. They gave me a shot of morphine and I still went home in pain. This morning It was still there. 18 hours. My head feels sore. I feel your pain.
BF
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thomas
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Re: 14 hour 'stuck' cluster
« Reply #14 on: May 15th, 2005, 8:15pm » |
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on May 14th, 2005, 1:04am, zebb37 wrote:
As for the Zomig, the ordinary pills are only any good for migraine sufferers - |
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Hmmmm you may want to retract that statement as the zomig pills work in about 15 mins for THIS cluster sufferer. Or maybe I should just call my neuro and tell him to start treating me for migraines instead.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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don
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Re: 14 hour 'stuck' cluster
« Reply #15 on: May 15th, 2005, 8:22pm » |
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Quote:| Or maybe I should just call my neuro and tell him to start treating me for migraines instead. |
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I KNEW IT! I KNEW IT ALL ALONG!
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thomas
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Re: 14 hour 'stuck' cluster
« Reply #16 on: May 15th, 2005, 8:25pm » |
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on May 15th, 2005, 8:22pm, don wrote:
I KNEW IT! I KNEW IT ALL ALONG! |
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Yeah, I actually don't even have migraines, I just don't have a life and needed to find some friends. So I looked up a whole bunch of horrible diseases and joined MB's. I am a member of this board, a syphylis board, a leper board, a eunich board, and a post-op sex change board. You guys are really boring.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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don
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Re: 14 hour 'stuck' cluster
« Reply #17 on: May 15th, 2005, 8:28pm » |
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Good to have differant interests.
Hows the eunich thing going? Let me guess.
Its neither here nor there.
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thomas
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Re: 14 hour 'stuck' cluster
« Reply #18 on: May 15th, 2005, 8:32pm » |
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on May 15th, 2005, 8:28pm, don wrote:Good to have differant interests.
Hows the eunich thing going? |
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Holding my own.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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zebb37
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Re: 14 hour 'stuck' cluster
« Reply #19 on: May 16th, 2005, 3:27pm » |
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on May 15th, 2005, 8:15pm, thomas wrote:
Hmmmm you may want to retract that statement as the zomig pills work in about 15 mins for THIS cluster sufferer. Or maybe I should just call my neuro and tell him to start treating me for migraines instead. |
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the ordinary zomig pill does not work quickly enough for me 1-2hrs - whereas the zomig rapimelt tend to kick in within that 15 mins to an hour time frame.
when i talk about zomig pills are we talking about the same ones?
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thomas
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Re: 14 hour 'stuck' cluster
« Reply #20 on: May 16th, 2005, 3:57pm » |
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on May 16th, 2005, 3:27pm, zebb37 wrote:
the ordinary zomig pill does not work quickly enough for me 1-2hrs - whereas the zomig rapimelt tend to kick in within that 15 mins to an hour time frame.
when i talk about zomig pills are we talking about the same ones? |
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I take the normal zomig 5mg pills, and they work in 15-30 mins.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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zebb37
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Re: 14 hour 'stuck' cluster
« Reply #21 on: May 16th, 2005, 5:03pm » |
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i stand corrected 
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thomas
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Re: 14 hour 'stuck' cluster
« Reply #22 on: May 16th, 2005, 5:08pm » |
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on May 16th, 2005, 5:03pm, zebb37 wrote:| i stand corrected |
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One thing you have to remember, peoples metabolizms are different, imitrex pills take too long for me, but amerge and zomig kick in pretty damn fast.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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vig
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Re: 14 hour 'stuck' cluster
« Reply #23 on: May 17th, 2005, 12:43pm » |
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you know Thomas, those pills are NOT suppositories...
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never, Never, NEVER quit. -Winston Churchill
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thomas
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Re: 14 hour 'stuck' cluster
« Reply #24 on: May 17th, 2005, 1:50pm » |
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on May 17th, 2005, 12:43pm, vig wrote:you know Thomas, those pills are NOT suppositories...
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Neither are the alternative treatments. It's tea NOT an enema! 
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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