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robsup1
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Too Many Days
« on: Jul 6th, 2005, 3:31pm » |
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I can hardly take this anymore.After 20 years of having these headaches,my life is ruined.I barely hold a job.Any woman I start a relationship with doesn't understand.I drink way too much when I have CH's.After trying all meds,even toradol,lithium,imitrix,maxalt,percocet,lexapro,anti-this and that,I have tried them all.I am going through a cycle right now.I need to stop banging my head against the wall.Got scars to prove it.What does it take to get this demon off of my back?I just wan't a normal life.I am 37 yrs old,and can't shake this.I even became a black belt at shaolin kung fu,hoping to mentally tie this down.I refuse suicide,this is not a way out,but I feel I can't take this anymore.Any new things out there to help?
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marlinsfan
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Re: Too Many Days
« Reply #1 on: Jul 6th, 2005, 3:37pm » |
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welcome, rob. sorry you're here with us, but glad to have you.
tell us about your headaches. do they come at day or night? chronic or episodic?
Have you tried oxygen to abort the headache? Lots of us here find it a blessing.
Lots of people are trying natural stuff. I take melatonin every night, it helps keeps the night attacks away, so at least I can rest. Others have tried kudzu, and some other less legal stuff.
Tell us more, and read a lot. I'm sure there's a bunch of stuff you can try to help improve your life.
My life has gotten a whole lot better since I got here. read, read, read, then read some more.
PF wishes.
Jose
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JDH
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Re: Too Many Days
« Reply #2 on: Jul 6th, 2005, 3:39pm » |
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You might want to look into this:
http://www.clusterbusters.com
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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Woobie
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Re: Too Many Days
« Reply #3 on: Jul 6th, 2005, 3:42pm » |
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on Jul 6th, 2005, 3:31pm, robsup1 wrote:| I drink way too much when I have CH's. |
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??????????
You'll find what you need here........
no better place.
Welcome home
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Bob P
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Shut up Bob!
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Re: Too Many Days
« Reply #4 on: Jul 6th, 2005, 3:56pm » |
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Quote:| What does it take to get this demon off of my back? |
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Stop drinking for a start.
BobP
34 year clusterhead
in week 17 of current cycle
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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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Melissa
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Honey, I don't know quite what to tell you, but that we have all been right where you are. Some are currently going through it as we speak, and there are others like myself, who are in remission. It's a personal hell that we deal with alone. I know we all have the support here, but at home, or wherever we are when we get hit, we are alone in the fight. It's also not just mind over matter, it's something that is happening in our brains that is completely out of our control. We were born this way and we each try to find our own way of easing our pain. Not everything works for everyone, but the suggestions that have been offered, such as the clusterbusters site, and Kudzu (which you can find info on in the meds section of this website) are alternatives. I think to myself as if I am hanging onto the end of a rope, hanging over a dark abyss of nothingness. I am more frightened to let go of that rope, because I know there ARE good things to live for and look forward to, than I am to let go and never return. It is too final, and I am a fighter who will fight for her life no matter what. There are no guarentees, but there are always alternatives. Take advantage of what you've been offered and we're here when you need us.
hugs,
mel
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ExplodingEyeBall
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Re: Too Many Days
« Reply #6 on: Jul 6th, 2005, 4:05pm » |
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You took the right first step by posting a message here.
Read all you can on this message board. These people know what they are talking about.
One thing I have found is that alcohol won't stop the pain of CH. It is actually known as a trigger for a lot of us.
Find the information on how to get some O2 and the proper type of mask and try it.
There are some other methods of treating CH if the O2 or Imitrex doesn't do the job.
Stick around and hook up with this family. They'll take care of you.
Pat
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Just poke out my eye and get it over with!!!
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clarence
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Wake up
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Re: Too Many Days
« Reply #7 on: Jul 6th, 2005, 4:07pm » |
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Glad you found us. How do we get the demon off our backs? Together.
Like Woobie said: Welcome home.
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NY Yankees Suck!!!
"Bart, don't make fun of Grad students. They just made a terrible life decision," Marge Simpson
Where I live: http://rainfallsoneveryone.com
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SteCo
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Re: Too Many Days
« Reply #8 on: Jul 6th, 2005, 4:20pm » |
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#1 Quote:
One thing I have found is that alcohol won't stop the pain of CH. It is actually known as a trigger for a lot of us. |
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Ditto here...trigger for me bigtime...lay off the drinks totally, as in none....they could be making stuff worse too!!!
#2 Check this link out for O2....believe it or not, it works wonders for many....
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
#3.....read read read....this place has tons of info to help. And ask questions...... Many options for conventional script meds as well as alternative methods.
SteCo
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kimmeesue
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Re: Too Many Days
« Reply #9 on: Jul 6th, 2005, 4:32pm » |
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Hi Guy,
Sorry you are suffering but glad you found us. Sometimes this is the only thing that keeps me sane. You will find compassion, humor, and a good dose of truth when you need it.
Welcome aboard.
Kim
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Langa
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Re: Too Many Days
« Reply #10 on: Jul 6th, 2005, 5:11pm » |
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Hi and Welcome to the Family…
I’m sorry you have to be here, but for a cluster headache sufferer, this is the best place to be for information and support. First of all, get informed, read all you can. Just to reiterate what others have said - you might want to also visit the clusterbusters.com website for information on alternative treatments and also check out the Kudzu threads under the Medications board. I also like many here can’t drink alcohol during cycle – major trigger for me. So stopping might not be a bad idea.
Tell us more about yourself. Are you chronic or episodic? Are you on any treatments now? If so, what? Oxygen has proven great as an abortive. Also, melatonin at night – it has stopped night-time hits for a lot of us.
Hang in there. You’re not alone and we’re here to help. Take a deep breath, the battle is long and hard, but not without an end in sight.
Hugs,
Langa
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Linda_Howell
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Re: Too Many Days
« Reply #11 on: Jul 6th, 2005, 5:29pm » |
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Quote:| I drink way too much when I have CH's.After trying all meds,even |
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Without sounding like I'm chastising you, I need to say this. ALCOHOL IS A TRIGGER! especially for episodics.
If you stop drinking anything alcoholic for a while you may find your HA's getting less intense or go out of cycle altogether for a while.
Quote:| I can hardly take this anymore. |
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Of course you can !!!!!! If you're a clusterhead, you're already much stronger than the average guy on the street. The alternative is not acceptable, AND their are chronics here who get hit 8 to 10 times per day for years on end.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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LadyLuv
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Re: Too Many Days
« Reply #12 on: Jul 6th, 2005, 5:44pm » |
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I wouldn't wish a CH on anyone, not even my worst enemy..
But at the same time, since I do have them, I wouldn't wish to be any where else other than with the great support group that we have here...
I can't stop your pain, but I can and do understand it...And I will Pray for you as we all do for each other...
Peace & Blessings
Lady Luv
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Kirk
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Re: Too Many Days
« Reply #13 on: Jul 6th, 2005, 5:58pm » |
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Well O2 at 15 Liters a minute with a non rebreather mask and Imitrex does the job for me.
I would get off the booze for awhile. Its a major trigger for a lot of folks.
Yeah I know I'm repeating everybody else's advice. So take our advice anyway and get yourself squared away.
Welcome to the maelstrom, I wish you didn't have to be here.
Stay in touch. 
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Charlie
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Re: Too Many Days
« Reply #14 on: Jul 6th, 2005, 9:46pm » |
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Welccome and I'm sorry you are dealing with this horror. I'm glad you are here though. It means you're serious about it. Pay attention to these people. They know what they're doing.
Here is a technigue that worked for me:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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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sandie99
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Re: Too Many Days
« Reply #15 on: Jul 7th, 2005, 3:20am » |
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Rob,
welcome to clusterfamily! I'm so sorry that you have to know ch, but since you do, you came to the right place!
Here you'll find lots of info about treatments you might not know about yet and people who will understand what you're going through because we've been there, felt it and are still here.
What you wrote sounds very familiar to me. I have approach this very same site with same feelings on my mind. I have felt many times that I can't go on. In my case, I even considered suicide seriously. Luckily for me, I never tried. Part of the reason I'm still here is these wonderful folkes here at ch.com. Their support & advices helped me. And I'm sure we can help you out, too.
I've been episodic, then chronic and now PF. I know that right now you can't imagine a day without the pain, but you'll get there! I'm sure of it. Verpamil helped me, kudzu has helped some, oxygen has helped some and the list goes on. Read the info you can find in here and let us know how you're doing. Having a bad day? Tell us. Having a good day? Let us know!
You are not alone! Don't ever forget that, okay?
If it's any concelation... it's not only women who don't get ch. At 25 I'm single because the men who I've met and felt close enough to tell about ch have run to teh other direction like the place was on fire. But I thought that okay, fine. That's one way to find out more about that particular person's true nature. I believe strongly that the one I'm meant to be with cannot be scared away by ch. And I bet that there is a woman who will not be running away from you just because you have ch. 
What comes to you job, it could be that things can be arranged. Does your boss know? Consider about letting him/her know. Ch nearly destroyed my university studies before. But I got my BA done once I had told my professors about my special circumstances.
Wishing you PF time,
Sanna/sandie99
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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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robsup1
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Re: Too Many Days
« Reply #16 on: Jul 7th, 2005, 12:33pm » |
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I can't tell you enough how much it means to me that alot of you replied to my outburst.I think sometimes it helps to get it off of my chest with people who truly understand what I am going through.There....whoo!. I don't usually let myself get too emotional,but thanks.I have tried 02,imitrex,prescription anti-inflammatories,lithium,anti-seizure meds,midrin,ergotomines,water saturation,percocet,lexapro.I think I am trying to find a cure instead of trying to find something that just helps me get through this better.I usually have cycles of 3 to 4 weeks,about every two or three months in between.I will read all the info here,and like I said,I truly appreciate your kindness.If I can help you folks in any way,just ask 
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ExplodingEyeBall
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Re: Too Many Days
« Reply #17 on: Jul 7th, 2005, 12:43pm » |
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?????????
Don't ask, Don't tell.
nuff said.
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Just poke out my eye and get it over with!!!
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BobG
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Re: Too Many Days
« Reply #18 on: Jul 7th, 2005, 1:26pm » |
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on Jul 6th, 2005, 3:31pm, robsup1 wrote:| II drink way too much when I have CH's. |
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Ditto what Bob P said.
You CAN NOT out-drink a cluster headache. Try it and you'll get beat down every time.
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Stay stressed. Never relax. Never sleep. Ever.
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Bob P
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Shut up Bob!
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Re: Too Many Days
« Reply #19 on: Jul 7th, 2005, 5:51pm » |
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Quote:| You CAN NOT out-drink a cluster headache. |
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I know, I tried it. Damn that hurt!!!!
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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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Jonny
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Re: Too Many Days
« Reply #20 on: Jul 7th, 2005, 7:03pm » |
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on Jul 7th, 2005, 1:26pm, BobG wrote:| You CAN NOT out-drink a cluster headache. Try it and you'll get beat down every time. |
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Hell, even I will back that statement. Even if booze is not a trigger, theres no out running the beast with it no matter how hard you try!!
Ive tried 
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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.
- Guiseppi
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