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Topic: I am NOT alone! (Read 262 times) |
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Hutch
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Clusters SUCK!
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I am NOT alone!
« on: May 24th, 2005, 3:53pm » |
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Just wandered across this site by accident... glad I found it. Somehow it seems to help to know there are so many others out there that suffer as I do.
The "Cluster Traits" section was so spot on I couldn't believe it. With few exceptions, I could have written that myself.
I've been dealing with CH for about 25 years now, I guess. Have an episode maybe once per year, lasting about 6 weeks. Usually hits me around the same time each evening, just when I begin to relax from a long day at the office. Then often one more wakes me up in the middle of the night with another hit.
Each episode occurs on only one side of my head, but that has varied over the years. When its bad (and when isn't it?) I just want to be left alone in the dark so I can pound my head and whimper for the next 2 hours or so. Current episode began about a week ago so I know what to expect tonight (again).
The "Medication Survey" had many familiar drugs which various doctors have prescribed over the years, none of which have been truly effective (abortive or prophylactic). My current abortive drug is a healthy dose of Tylox, but I must take it immediately upon the onset of a hit to stand any chance of taking it down a notch. I've given up on finding any preventive treatment... just give me something to kill the pain!
I did try oxygen a few years back, and thought it helped at first but then it wasn't effective. I did not have the proper mask as is recommended here so perhaps I'll try again. Sounds like many have had at least partial success and that has to be better than pumping myself up with narcotics!
Thanks for this opportunity to share. This puts a whole new meaning on the phrase, "I feel your pain!" 
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-Hutch-
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kissmyglass
CH.com Alumnus
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Don't Mix Triptans
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Re: I am NOT alone!
« Reply #1 on: May 24th, 2005, 4:15pm » |
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Welcome. Sorry you had to seek us out.....Tylox won't work for clusters...Oxygen will. Give it another try correctly. The right mask is $2-3.
Good Luck,
Kev
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"It does so fucking look like her" - Picasso
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BobG
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Re: I am NOT alone!
« Reply #2 on: May 24th, 2005, 4:52pm » |
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Welcome to the board Hutch. Sorry you had a reason to search for us but glad to found us.
Quote:| Usually hits me around the same time each evening, just when I begin to relax |
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I've been preaching for years.....Don't do that. When you do that the devil will sneak up on you and rip your eyeball out.
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Stay stressed. Never relax. Never sleep. Ever.
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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
  
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Re: I am NOT alone!
« Reply #3 on: May 24th, 2005, 5:09pm » |
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see BobGs tag line under all of his posts. lol
Naps-are-NOT-us. Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Hutch
New Board Newbie
Clusters SUCK!
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Re: I am NOT alone!
« Reply #4 on: May 24th, 2005, 6:22pm » |
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on May 24th, 2005, 4:15pm, kissmyglass wrote:Welcome. Sorry you had to seek us out.....Tylox won't work for clusters...Oxygen will. Give it another try correctly. The right mask is $2-3.
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Thanks all.
Actually, Tylox is the only med I've found that knocks my CH out... but only IF I take it right at the onset. And after 25 years, I've tried lots of pills, shots, etc.
But I *will* give O2 another try, with the right mask this time.
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Gator
CH.com Alumnus
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Re: I am NOT alone!
« Reply #5 on: May 24th, 2005, 6:37pm » |
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Welcome to the website. Sucks that you had a reason to come looking for us, but damned glad you found us.
As you have no doubt discovered, the links to the left have tons of good info in them. There is even more on the OUCH website. Read everything you can and print stuff out that seems applicable. Unfortunately, you may end up teaching whatever doctor about CH.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here are some links that tells about using O2:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
http://www.headaches.org/consumer/topicsheets/oxygen.html
http://www.chhelp.org/mhni.html
Here is a link to a letter that may help explain things to your friends, family and co-workers.
http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/no te_colleagues.cfm&added=04/01/04&code=CB
Again, welcome to CH.com. There's no better place in the world for info and support of cluster headaches.
Gator
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