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Topic: Hello (Read 366 times) |
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Strausy
New Board Newbie
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Found your site via Google, looks very informative and helpful. It will be at the top of my bookmarks.
About me:
male,49yo, married, twin boys 17, employed professional, smoker, enjoys a drink, more later perhaps.
BTW got 100% on the quiz.
Started geting CH about 3 years ago had them for 2-3 months then went into remission. They just reared their ugly head again about a month ago, started out slowly but now has progressed to about two bouts per day. I have stopped drinking my beer (sucks) which has helped reduce the intensity of the CH. My doctor prescibed IMITREX 100mg tablets which work well. The only problem there is my prescription drug insurer limits how often I can get refills of the IMITREX (b*stards), due to over useage. 9 tablets per prescription / 2 per day = 4 1/2 days. I guess no one at Pharmacare has ever had CH. I hope they don't screw around like this all the time. I'm trying to decide what to do, maybe a phone call to customer service, HAH!
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Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, smoke in one hand, drink in the other, body thoroughly used up, totally worn out and screaming "WOOHOO WHAT A RIDE!"
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aubmari
New Board Old Timer
Do not lose heart~
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Re: Hello
« Reply #1 on: Aug 16th, 2007, 2:46pm » |
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Sorry you have CH but glad you found us!!!!! There is alot of info here to absorb and feel free to ask any questions and we will try to help you the best we can. Have you tried Oxygen? Usually works for aborting them.
Aubmari
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Life is too short for drama & petty things, so kiss slowly, laugh insanely, Love deeply and forgive quickly.
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Strausy
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Re: Hello
« Reply #2 on: Aug 16th, 2007, 2:54pm » |
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I haven't tried O2, but my Dr. did mention it. Not sure if I like the idea of a cylinder & all that in the house.
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Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, smoke in one hand, drink in the other, body thoroughly used up, totally worn out and screaming "WOOHOO WHAT A RIDE!"
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Dape
CH.com Alumnus
New Board Old Timer
WHY BOTHER !!!!!!!!!!!!!!! !!
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Re: Hello
« Reply #3 on: Aug 16th, 2007, 3:01pm » |
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on Aug 16th, 2007, 2:54pm, Strausy wrote:| I haven't tried O2, but my Dr. did mention it. Not sure if I like the idea of a cylinder & all that in the house. |
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Hi Strausy,
Its not as bad as it seems, the tanks ain't that big and can be hidden away quite easily in a corner with just a small throw or blanket.
O2 is liquid gold in my opinion if it works for you and the first time it does the feeling you get is awesome.
I am sure a few more people will reply with more info that will help you.
Dape
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D.I.L.L.I.G.A.F ???
Well i used to 
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DennisM1045
New Board Hall of Famer
One wave at a time!
  
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Re: Hello
« Reply #4 on: Aug 16th, 2007, 3:03pm » |
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Trusy me ... once you've experienced the relief and lack of side effects of O2 vs Imitrex you'll gladly give up a corner of your bedroom. I had the same missgivings in the beginning. While O2 does't work for all of us it is well worth a try.
RedBull works too believe it or not.
Welcome home to the best source on the internet for all things CH and the best group of supporters I've ever seen in any context.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Guiseppi
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Re: Hello
« Reply #5 on: Aug 16th, 2007, 3:04pm » |
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Hey welcome to the board! You're 2 years older then me but other then that we sound very similar! You will eventually find yourself gazing at "those ugly green cylinders" with the same love you used to reserve for your wife and kids! Started at the first twinge I can abort a headache in less then 10 mnutes, usually closer to 6, that's completely pain free in as little as 6 minutes....but wait...there's more!!!
Seriously, it's much much cheaper then imitrex, so the insurers like it a lot more. Don't let the idea intimidate you, it's very simple to operate and maintain. You MUST have a NON RE BREATHER mask and a high flow regulator, up to 15 LPM. For it to be effective you need to breathe pure 02 with no outside air and no re breathed air. There is a great link to the left oxygen info .
You are a very lucky man to have a doctor who suggests oxygen. most are afraid of using it and don't even know it's so useful for ch. You will need to avoid alcohol while on cycle it's an almost universal trigger for most of us. I love my rich dark microbrews, my blended canadians and straight Kentucky bourbons, on cycle I don't even look at them.
Before I get real long winded, you should ask your doc about a preventative med for when you're on cycle. The idea of a prevent is to lessen the frequency and intensity of your head aches. I use lithium, others use topomax, verapamil, there are many to explore.
Many also find relief slamming an energy drink at the first hint of an attack. You need one which contains caffeine and taurine. Rock star, monster etc. Didn't work for me but has worked for many. Welcome to the board heres hoping you catch a short cycle.
Guiseppi
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Strausy
New Board Newbie
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Re: Hello
« Reply #6 on: Aug 16th, 2007, 3:36pm » |
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Wow, Thanks Everyone you guys are right there!
Guiseppi, You mentioned Verapamil, I'm on that now. My last cycle Doc changed my HBP meds to that because he heard it helps with CH. I have an appointment next week, I'll discuss the O2 with him.
I've read/heard about caffine, Red Bull huh(with out the Yeagermiester I suppose!), I usually grab a nice cold green tea.
Haven't had my nooner yet, (Knocks on wood) hope it's a good sign.
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Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, smoke in one hand, drink in the other, body thoroughly used up, totally worn out and screaming "WOOHOO WHAT A RIDE!"
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Guiseppi
CH.com Alumnus
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Re: Hello
« Reply #7 on: Aug 16th, 2007, 3:40pm » |
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Wow, you've got an awesome doctor, he's far more up on CH then most. The only caveat with verapamil is we tend to take it at doses much much higher then people who use it just for BP. Some are up in the 960mg a day range, many are at the 480mg a day. Obviously make sure the doc monitors you close when you start jacking the doses up. A very effective prevent for many on the board.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Charlie
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Re: Hello
« Reply #8 on: Aug 16th, 2007, 9:27pm » |
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Ah....found you here too. Glad to meet you Strausy
Sorry you have to deal with this horror but here is a technique that works for some of us here. It asks nothing but a little work and the price is right:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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RichardN
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Re: Hello
« Reply #9 on: Aug 16th, 2007, 9:45pm » |
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Welcome to Clusterville
Another vote for 02 here. I can't use Imitrex (some arterie blockage) . . . so 02 is my only abortive. . . tis a miracle for those of us it works for . . . takes a little practice, but all you have to do is ask and there will be plenty of folks willing to walk you through . . . and make sure and get a Clustermask . . . you'll be glad you did.
Don't discount water therapy (see "water X 3" link on left). I'm absolutely convinced this has helped me reduce the frequency/intensity of attacks.
You will have many questions to ask . . . fire away . . . here the answers you get are from folks who truly know your pain.
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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Strausy
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Re: Hello
« Reply #10 on: Aug 20th, 2007, 9:56am » |
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Charlie, Sounds interesting will look into it
Richard, Thanks for the input, I have looked over the waterx3 link, I've been drinking quite a lot of the vile stuff  it's better to wake up to pee then to dance.
Strausy
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Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, smoke in one hand, drink in the other, body thoroughly used up, totally worn out and screaming "WOOHOO WHAT A RIDE!"
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southwalessunshine
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Re: Hello
« Reply #11 on: Aug 21st, 2007, 8:02am » |
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You're very lucky that your doc has talked about 02 with you so soon. I was diagnosed recently after 15 yrs of suffering and my gp or neuro never mentioned it once! it took the guys on here to push me in the right direction. I got it delivered yesterday but am still waiting for the opportunity to use it.
I think the plus side of 02 is that it'll work out cheaper in the long run than triptans and it's got no side effects. There is a danger with it being near naked flames, so don't smoke around it etc and don't let it leak onto soft furnishings. the cylinder is pretty small but that pale into insignificance if it works.
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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Callico
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Re: Hello
« Reply #12 on: Aug 22nd, 2007, 12:13pm » |
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Welcome aboard! Glad you have a Dr that knows something!!!
I found O2 to be very beneficial if I got to it right at the beginning of a hit. Much cheaper than Trex, and no limits or side effects.
Look into Kudzu on the Meds and Treatments page. It has been a Godsend to me. I've been virtually PF for the last 4+ months with it, and I am chronic. There is a long thread about it that will tell you more. For a quick abort Red Bull or one of the other energy drinks will knock out or at least knock a hit down to a bearable level in about5-6 mins IF I slam it wothout stopping at the first signs of an attack. A lot of black coffee helps some too.
Hpe you get some relief, and stay around to help others as you do.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Strausy
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Re: Hello
« Reply #13 on: Aug 27th, 2007, 10:20am » |
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3 PF nights in a row WooHoo!! Just some shadows hanging around. Hope this is a good sign and not just a tease.
All this time not drinking, I've lost a bit of weight. Even getting some coments from my female friends. Some good has come of this.
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| « Last Edit: Aug 27th, 2007, 10:21am by Strausy » |
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Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, smoke in one hand, drink in the other, body thoroughly used up, totally worn out and screaming "WOOHOO WHAT A RIDE!"
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Rosybabe
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"Too much of a good thing can be wonderful!!
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Re: Hello
« Reply #14 on: Aug 27th, 2007, 6:33pm » |
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Welcome Strausy!!
Woohoo!!! for your pain free days and wishing you have many many more of those 
ask for Imitrex injections, they act faster than pills or you can also get some cafergot, when you run out of Imitrex, cafergot is a good option, ask your Doc about it.
Oxygen , Oxygen is the magic word here 
Pain free wishes for you!!
Rosy.
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 Believing is just the beginning!
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GrandPotentate
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mmmmmmmmmm
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Re: Hello
« Reply #15 on: Aug 27th, 2007, 10:55pm » |
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Sorry you came searching, glad you found this.
I thought oxygen was a lot of plumbing and claptrap, but my GP suggested it because the (wrong) dope from the (incompetent) neuro wasn't working. Read up on this and give it a try a few times. A little coffee buzz usually postpones CH's during the day, until the evening when I can deal with it.
The only alternative I've found to deal with the headaches is some pretty brisk walking. I got to see quite a bit of scenery before I got hooked up with O2.
You'll find comments on the beer test elsewhere - do a little searching. Once I passed that, I tried the Chinese food test. Those convinced me my cycle was over.
May yours be short, and please stick around and join in. These guys have helped me tremendously, and I hope I can do the same for others.
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Jon
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DennisM1045
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One wave at a time!
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Re: Hello
« Reply #16 on: Aug 28th, 2007, 12:37pm » |
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on Aug 27th, 2007, 10:20am, Strausy wrote:| All this time not drinking, I've lost a bit of weight. Even getting some coments from my female friends. Some good has come of this. |
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I'm glad the beast seems to be done with you. I also like the silver lining you found. It's good to have another optimist around here 
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Hello
« Reply #17 on: Aug 28th, 2007, 12:39pm » |
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Warm welcome Strausy!
I'm so sorry that you have ch, but this is the place to be for info and support!
Keep in mind that there are lots of meds and treatments to try. Some help, some don't. It may take time but you'll figure out the best combo for you.
Lots of PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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