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barry_sword
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hello my new friends
« on: Nov 12th, 2006, 8:11am » |
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hello everyone. i am a 47 year old male married no kids. very active with my job and mountain biking. ch started in 2000,went to a nero in 2004 diagnosed with ch and put me on 900 mg lithium and a lot of predazone per day. ch went away for awhile but i am just starting my 3rd cycle now. my attacks are 2 per day lasting about 1hr each. this 3rd cycle is even more intense than before if you can imagine that!! my wife angie found this site[thank god] and we have read some of your stories, very sad. i am med free at this point. i quit smoking 14 months ago, but the beast does not care about that he just wants to dance and i guess i am his new partner[unlucky me] but i would have the beast stay with me full time if i knew he would leave each of you's alone. talk later friends barry sword from ontario canada
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Bob P
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Re: hello my new friends
« Reply #1 on: Nov 12th, 2006, 8:14am » |
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Welcome Barry, sorry you're here.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Grandma_Sweet_Boy
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Re: hello my new friends
« Reply #2 on: Nov 12th, 2006, 8:53am » |
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Bracebridge - Home of Santa's Village, Derek Ruttan and a main street with a stop sign at the top of every hill!!!! Some pretty fine golf courses too! 
Welcome Barry - from another Canadian!
Carol
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barry_sword
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Re: hello my new friends
« Reply #3 on: Nov 12th, 2006, 10:02am » |
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hello bob! thxs for your support.
barry
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barry_sword
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Re: hello my new friends
« Reply #4 on: Nov 12th, 2006, 10:05am » |
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hello carol!! stop signs are fun in the winter eh!! best mtb riding around. summer's gone, so is santa. thxs for caring and will talk soon. i am new at this.
barry
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Grandma_Sweet_Boy
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Re: hello my new friends
« Reply #5 on: Nov 12th, 2006, 10:22am » |
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Barry - it's where most of us earned our driver's license as kids. For some reason the examiner up there understood the power of the hills!
I'm originally from a little south of there - by way of Washago and Orillia but lived in Muskoka Falls, Mathiasvile and Vankoughnet as a kid. Still have family in the area. My Dad hauled all the gravel that went into the making of the Muskoka Falls Dam - that was way before your time.
Don't be shy - read all the info to the left of the message board. You will find a ton of helpful people here.
Carol
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| « Last Edit: Nov 12th, 2006, 10:23am by Grandma_Sweet_Boy » |
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cateyes
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welcome to my crazy world wanna take a 5 min ride?
 
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Re: hello my new friends
« Reply #6 on: Nov 12th, 2006, 10:55am » |
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Hello Barry and Glad u found this site...it is a godsend actually..Everyone here is great and very supportive...Stop into Chat once in awhile gets kinda uhhhh "interesting" in there to say the least from time to time and always will to send vibes for our friends and can also get some information in there ...Hope to see ya soon in Chat..
Tammy
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KISSES,CATEYES
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barry_sword
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Re: hello my new friends
« Reply #7 on: Nov 12th, 2006, 11:37am » |
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hello tammy! nice to meet you and everyone else here. there is so much support. i use to think i had something that no-one else had. what a lonely and isolated way of life. i already am looking at my ch in a different way thxs to ever-one here. talk later
barry
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nani
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Re: hello my new friends
« Reply #8 on: Nov 12th, 2006, 12:01pm » |
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Hi Barry. Welcome and sorry you had to find us.
You say you are med free right now. Have you looked over to the left and read the oxygen info? Administered correctly, it works well as an abortive for many of us.
pain free wishes, nani
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barry_sword
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Re: hello my new friends
« Reply #9 on: Nov 12th, 2006, 12:46pm » |
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hello nani! thxs for the advise. i will look at o2 as a option. i know tylenol 8 hr. capsules do-not work and lithium+predizone are never a option for me again. i will research more. bye for now
barry
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LeLimey
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Re: hello my new friends
« Reply #10 on: Nov 12th, 2006, 12:46pm » |
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Nani beat me to it on the O2 but I wanted to say hiya anyway, to both you AND your wife as there is always a warm welcome for our supporters here. I'm very glad you have someone to help get you through it but its a tough job for them too and she is more than welcome to come and get some support and help here herself - as well as make some of the best friends ever 
Welcome to you both
Helen
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barry_sword
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Re: hello my new friends
« Reply #11 on: Nov 12th, 2006, 12:55pm » |
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hello helen! thxs very much for your support and advise. i know how helpless our loved ones feel when we get out of bed and go dancing in the middle of the night with this evil stranger. but through thick and thin they stay the course with us. i believe that was mentioned in our wedding vows!
barry
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LeLimey
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Re: hello my new friends
« Reply #12 on: Nov 12th, 2006, 1:04pm » |
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Barry check the post pinned at the top of this board, Supporter Appreciation Day.
This coming Wednesday 15th November is our first annual Supporter Appreciation day. There is a link to a board where you can post a message to your supporter and its also a chance to let them know how much they mean to you and how grateful you are. Along with others I do feel EVERY day should be supporter appreciation day but, as with mothers day and veterans day, its nice to have one official day each year when we honour our loved ones and the other veterans of CH than just us.
Go on... spoil her rotten! 
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sandie99
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Re: hello my new friends
« Reply #13 on: Nov 12th, 2006, 1:32pm » |
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Welcome, Barry!
I'm so sorry that you have ch. I'm glad that your wife found this site. This is the best place for us clusterheads. I hope that your cycle will be a short one.
Best wishes,
Sanna
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"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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barry_sword
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Re: hello my new friends
« Reply #14 on: Nov 12th, 2006, 1:57pm » |
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hello sanna! thank-you for caring. my last cycle was two years chronic, nasty time.pf for 1 1/2 years but the ch are back. i had lazer eyelid surgery to repair damage. i also hope for a short cycle. thxs
barry
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Charlie
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Re: hello my new friends
« Reply #15 on: Nov 12th, 2006, 4:11pm » |
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Welcome aboard Barry to the madhouse. Lots of good ideas here how to deal with this horror. I regularly post a technique that worked most of the time....for me anyway:
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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barry_sword
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Re: hello my new friends
« Reply #16 on: Nov 12th, 2006, 7:47pm » |
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Thank you Charlie
I will try this method for I have nothing to loose. except for the pain.
Thanks again
Barry
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Barry_T_Coles
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Re: hello my new friends
« Reply #17 on: Nov 12th, 2006, 9:49pm » |
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Hi Barry up there from Barry down under.
Sad you have to be here but you are in good company & give your wife a hug for finding this place.
Everyone else has given you the good drum already & remember that there is always some one awake somewhere if you need to talk.
Cheers
Barry
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barry_sword
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Re: hello my new friends
« Reply #18 on: Nov 12th, 2006, 10:05pm » |
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hello barry! just had a attact and the keyboard is getting wet. my eye is so wet i am fin ding it hard to type.l i amcrying. thank you for caring i will contact later
barry
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Shaz
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Re: hello my new friends
« Reply #19 on: Nov 13th, 2006, 11:16am » |
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Hi Barry.
Welcome aboard, but so sorry you are in pain at the moment. I know what the tears are like. Its always a mixture of pain and relief that there are other people out there who really understand.
Believe it, we do...
Love Shaz 
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rickyshot
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Re: hello my new friends
« Reply #20 on: Nov 13th, 2006, 11:28am » |
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Hi Barry. I live in Montreal and came here from Georgia. What part of Ontario are you in?. I am episodic for 22 years with horrible episodes coupled with complicated migraines for added fun. I felt the exact same way you did when finding this site two years ago. How come you won't do the Lithium thing again. Did you have a bad reaction. Many people on this site do a Lithium, Verapimil combo to prevent with good results.
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barry_sword
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Re: hello my new friends
« Reply #21 on: Nov 13th, 2006, 5:30pm » |
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hello rickyshot! i am from bracebridge ontario[home of santas village;really] pleased to meet you. yes i had a bad time with lithium. mood swings, not eating, not talking, just ask my wife and friends. all behind me now. i'm sorry about your double pain must be hell only worse. talk to you later and thxs for your support
barry
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barry_sword
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Re: hello my new friends
« Reply #22 on: Nov 13th, 2006, 5:37pm » |
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hello shaz! that was a dreadful night. my 2nd attack hit me the hardest i have ever had. i was walking the beast when i walked into a door frame . i could not see because my hands were sqeezing my temples and my eyes were watering so bad, but made it through. thxs for caring,will talk later
barry
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vietvet2tours
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Re: hello my new friends
« Reply #23 on: Nov 13th, 2006, 5:42pm » |
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on Nov 12th, 2006, 12:46pm, barry_sword wrote:hello nani! thxs for the advise. i will look at o2 as a option. i know tylenol 8 hr. capsules do-not work and lithium+predizone are never a option for me again. i will research more. bye for now
barry |
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Oxygen ain't an option kinda thing. It is the first line of defense.
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Kill em all let God sort em out
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barry_sword
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Re: hello my new friends
« Reply #24 on: Nov 13th, 2006, 5:55pm » |
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hello vietvet2tours! ihad the worst nite of pain yet last night. i spent the day trying to see my nero but had to go through my family doc 1st because i have not seen the nero for 1 1/2 years. i took some humble pie and asked for just the predizone back. it worked before so lets try again. i will ask the nero about o2 when i see him. thxs will keep you up to speed.
barry
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