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Topic: confused newbie CH? migraine? crossover? (Read 556 times) |
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nohandgunsallowed
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confused newbie CH? migraine? crossover?
« on: Oct 22nd, 2006, 2:24am » |
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newly newbie here. i'd like to get on board and maybe get some opinions?
my 'wrong' answers on CH quiz: i do seek a dark quiet place when having a crash, i can be motionless - in fact, never thought to bash and crash, but i Will next time!, no droopy eyelid. other answers were 'correct'.
started waking up at 2 am with kip 10 widow makers about ten years ago. they stopped with cafergot, which worked for 6 years. 4 years ago the cafergot stopped working and i went on to the triptans. these worked almost as well as the cafergot had in stopping the pain. thru this whole time i had been diagnosed with 'migraines' and had been taking 80mg of propranolol as a preventative. i always assumed it was what was working for me. my episodes of waking up with a screamer decreased from weekly to monthly and then just a few episodes that required the triptan, yearly...
but about two weeks ago the widow makers started again, every night, waking up with kip10. the current triptan, relpax, stopped most or all of it for about half and hour and then wham! it was right back at kip 10. luckily the episodes never last much longer than 3 hours but that was long enough.
but some say propranolol wouldn't work to prevent CH. so maybe i don't have CH after all, only 80% of the symptoms as listed in the CH quiz?
for the last few days and at the moment i am mostly pain free, some furtive shadows still. Now 5 days into a course of 60mg prednisone with verapamil long acting 120mg going up to 240mg after 3 days. at the same time i am told to taper the propranolol over 3 days down to zero. my drug book from school says taper off the propran slowly or Big Headaches could occur! my neuro didn't seemed too concerned about this and i'm not sure if I should be as nervous about stopping the propran as i am. Did it help me all those years?
and if it did, is this run of headaches just an odd-ball anomaly? should i jump to verapamil? am i a migraineur, a CH sufferer, both?
you might get the sense that i'm nervous and unsure about what's going on with my noggin...and you'd be damn right.
please send me any advice, encouragement, experience, actual medical knowledge you may have. i am already greatly in the debt of this board and thank the goDs i have found it.
thanks in advance. btw she's still my wife, not yet a widow...
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Bob_Johnson
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Re: confused newbie CH? migraine? crossover?
« Reply #1 on: Oct 22nd, 2006, 7:22am » |
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Hope you can appreciate that none of us can make a long distance Dx. But a few general comments.
You don't have to have 100% of the symptoms to have cluster--it's the global, long history which is important.
Entirely possible to have elements of both cluster and migraine at the same time or even changing over the years. It does confuse diagnosis and treatment but folks have regularly reported such experiences here.
The Prop. is an old time migraine med which does not have a good track record for cluster.
The best thing you can do is to locate a good headache specialist and work thru these issues. Frustrating, time consuming, and expensive--but there simply isn't a quick fix for many folks.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
lEither book is very good. I prefer the first one if it's affordable.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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AussieBrian
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Re: confused newbie CH? migraine? crossover?
« Reply #2 on: Oct 22nd, 2006, 7:36am » |
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My regards to your wife, and may she remain not a widow for a long time. Not guessing as to a diagnosis but the use of oxygen can be remarkably effective in the treatment of both CH and migraine so might at least give you some breathing space (pardon the pun) while you find out exactly what's going on.
Check the 'oxygen info' button just to the left.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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nohandgunsallowed
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Re: confused newbie CH? migraine? crossover?
« Reply #3 on: Oct 22nd, 2006, 1:08pm » |
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thanks for your help...i tried hi-flo rebreather O2 in the ER last week and it knocked the kip down by 2 points, but that was a disappointment. i will try it again, especially given the high praise i've seen it get on these boards. pf wishes
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Charlotte
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Re: confused newbie CH? migraine? crossover?
« Reply #4 on: Oct 22nd, 2006, 1:30pm » |
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Dear no gun, there comes a point in some of our lives where lowering it by 2 is a success.
Charlotte
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Linda_Howell
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Re: confused newbie CH? migraine? crossover?
« Reply #5 on: Oct 22nd, 2006, 1:34pm » |
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No-gun,
A NON-rebreather is a must if you want the 02 to work for CH. A clustermasx is better.
http://homepages.nildram.co.uk/~tritech2/clusterx/index.html
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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nohandgunsallowed
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Re: confused newbie CH? migraine? crossover?
« Reply #6 on: Oct 22nd, 2006, 1:51pm » |
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right you are! which one has the 'bag' attached? i guess it was a non. i concur that a 2 point drop IS something. and, frankly, Then and There it was enough. 'tis only now, after reading the O2 testimonials that i feel like, maybe it might actually Stop! the pain next time...
Charlotte, am i mistaken or did i read a post or two of yours re. your experience w/verapamil on these boards? what, in short, is your current opinion?
thanks thanks
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Charlotte
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Re: confused newbie CH? migraine? crossover?
« Reply #7 on: Oct 22nd, 2006, 1:57pm » |
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In the past when I tried verapamil, I was not familliar enough with my own minicycles and long cycles and I believed that the verap caused the back to back hits at the end of the minicycles. Now I know they occur whether I am medicated or not.
I used kudzu from May until last week and it is similar to verapamil and lowered my pain systemically about 3 from the top, which made life better for me.
My neurologist wanted me to drop the kudzu and try the verapamil again, especially since I now am acquainted with my own nervous system and can evaluate it with new eyes.
I am on week 3 of an escalation of verapamil. Week 1, I deescalated my kudzu, so week 2 was inundated with a lot of breakthrough headaches, and week 3, now, is improved upon that. Also during week 2, my pain tolerance went back up to high tolerance.
In essence, I am now trying verapamil for the 1st time, armed with information.
Good luck to you and welcome aboard.
charlotte
ps I also use 600 mg neurontin and 150 mg indocin daily, and each of these provides some relief for other types of headache in the category of trigiminal autonomous cephalagia. I am aiming for the smallest amount possible that works.
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| « Last Edit: Oct 22nd, 2006, 2:05pm by Charlotte » |
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RichardN
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Re: confused newbie CH? migraine? crossover?
« Reply #8 on: Oct 23rd, 2006, 12:07pm » |
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Hi and Welcome
I have to assume that by the time you got to the ER, you were at the "dance" level. CH ramps up so rapidly, you don't want to take that long excruciating ride to the ER, + paper-work, before you can get treatment. I keep my home tank by the bed, and now have another regulator/tank in my van so can use at the early-onset of an attack . . .MINUTES MATTER! Much better to kill the beast at the Kip 2-4 stage and save the trip to the ER.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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BB
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Re: confused newbie CH? migraine? crossover?
« Reply #9 on: Oct 23rd, 2006, 3:42pm » |
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Richard is correct, oxygen works better taken early, by the time the pain has rammed up too high it doesnt work quite as well and its hard to sit still to take regular deep breaths.
Best to have oxygen at home and when you travel.
Take care and PFDAN to you.
Annette
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Mrs_R
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Re: confused newbie CH? migraine? crossover?
« Reply #10 on: Oct 27th, 2006, 9:45am » |
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Hi,
I am in the process of being assessed by a Headache Specialist because I also have some symptoms of CH and some of Migraine. It's a long story but I cannot have Imitrex jabs at the moment, so have persuaded my GP to give me O2.
The first couple of times at home it brought the pain down a little around two points, which definitely helped. But, during a recent stay in hospital for assessment I tried the O2 again with great success, and to my surprise it totally aborted the attack!! It took 2 attempts on one attack, as in 1 lot of 30 mins on it and a 2nd lot of 20mins on it, about a half hour later!
Don't give up with the O2, keep going, there does seem to be a knack to using it, and of course it is much better with the Clustermasx!!
Wishing you all the best with this, take care
Liz
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mathieulives
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Re: confused newbie CH? migraine? crossover?
« Reply #11 on: Oct 27th, 2006, 1:45pm » |
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**my 'wrong' answers on CH quiz: i do seek a dark quiet place when having a crash, i can be motionless - in fact, never thought to bash and crash, but i Will next time!, no droopy eyelid. other answers were 'correct'.**
In response to the above, I am sensitive to light and sound and I sometimes seek a dark/quiet place. Sometimes I feel I need to be motionless to slow brain activity so I try to go completely limp with my pillow over my head on a cold floor. At high Kip level this is veritually impossible for me to do.
Today I felt one coming on, chugged a red bull, remained calm and aborted it without Imitrex. I am on Verapamil and I drink a lot of liquids. This was my first attempt to use Red Bull and it had a numbing effect similar to Imitrex. I havn't had to use Imitrex all morning for the first time in a couple weeks.
You may want to try it. Hope it gets better!
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nohandgunsallowed
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Re: confused newbie CH? migraine? crossover?
« Reply #12 on: Oct 27th, 2006, 6:35pm » |
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red bull? like a big caffeine jolt? any other active ingredients...? just got the injectible Imitrex + verapamil a week ago. taking 240mg verap daily to build up a 'level' of it; but am still taking 40mg propranolol daily (half-dose of my usual, i'm trying to taper off it but i'm Scared to Stop!) The Imitrex worked like magic night before last though...whew! that was a relief. my triptans and cafergot hadn't worked for more than half an hour through a recent 2 week, every night, run and i had to thank the goDs that the imitrex shot held me...peace and pfd to ye. johnnie
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thebbz
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Re: confused newbie CH? migraine? crossover?
« Reply #13 on: Oct 28th, 2006, 3:03pm » |
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Red bull, Monster Drinks, espresso. Its the caffiene all right. The taurine helps with the metabolizing and improves the effect. This is my opinion and the source should be considered.lol 
jb
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Linda_Howell
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Re: confused newbie CH? migraine? crossover?
« Reply #14 on: Oct 28th, 2006, 3:30pm » |
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Quote:This is my opinion and the source should be considered.lol
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LMAO....and I might just plagerize that some day.
Do not listen to Mr. BB He's as informed as the rest of us and his opinion is valuable.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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nohandgunsallowed
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Re: confused newbie CH? migraine? crossover?
« Reply #15 on: Oct 28th, 2006, 4:13pm » |
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i will well consider the source...your reputation precedes you
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nohandgunsallowed
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Re: confused newbie CH? migraine? crossover?
« Reply #16 on: Oct 28th, 2006, 4:16pm » |
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btw, does dexedrine have caffeine? crystl meth? coca nuts? Hershey's kisses? pfd2U
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thebbz
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Re: confused newbie CH? migraine? crossover?
« Reply #17 on: Oct 28th, 2006, 4:34pm » |
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Stick with the Kisses. Stay away from the meth.
Use of caffeine,02, and other less toxic therapies often times offers the break you need to use trex and other more toxic aborts less often and when timing is critical...ie,at work and at night for rest.
Aw shucks 
jb
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nohandgunsallowed
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Re: confused newbie CH? migraine? crossover?
« Reply #18 on: Oct 28th, 2006, 6:36pm » |
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aw shux indeed!
personally, i reduced my espresso/other caffeine guzzling from gallons daily to one cup in a.m. many years back (granted, the cup is a martini shaker at about 25 ounces, but still, 'tis only the one). the rebound HA from a Caf-Blast can cause Me more harm than good...
but please, proceed with what works for yerself with my profound approval...
raw husks...
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