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O2, my new savior (Read 765 times)
PlayDoh
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O2, my new savior
May 23rd, 2010 at 2:42am
 
Hey all,
  My name is Paul and I've had clusters for 10 years now, and just killed one off about an hour ago, no O2. I just started another cluster-bout about 2 weeks ago, and I'm getting 1-4 a day. My bouts usually last a couple months, then leave me alone for 6-12 months.
Just this week I finally gave O2 a shot, and it worked like a charm. I only have a 6 LPM valve, but I hyperventilate like crazy, and take around 6 blasts of air per breath, or in & out quickly. Its my aunts tank, and its the kind that gives a shot of air out while you inhale. I just inhale a lil bit, stop and start again so I can get it to shoot again. After 6 shots I inhale, and start over again.

I've read up on the valves and masks to buy, and I'm getting a setup soon, yet this works for now. I'm so happy that I finally found something that works, yet I know its not childs-play so I wont use the O2 without someone watching me for now. I know CO2 can build up, so until I get a real setup I use caution.

I'm also so happy I found this place, and that theres places like this where we can support each other, and learn about therapies, medicine and everything related. I've never tried anything that worked one iota on my pain, until O2. My 9/10's are reduced to 2/10's if not gone completely in 5-15 mins. Although I've only used it 3 times now.

I live near Calgary, Alberta Canada, and I'm wondering what type of Doctor/specialist I should see regarding clusters? My Dr didn't seem to know what they were when I mentioned it, but I'm hoping she's done some research, cause I'm going to see her soon. Yet I'd like to see someone who knows lots on the subject, like maybe a neurologist?

Maybe I'll ask that in a place it belongs, later.

I've read its believed that dilated blood-vessels in our brain that put pressure on the Hypothalamus, is where the Beast comes from. Thats encouraging to hear, and sounds plausible to me.

To those who moderate, administrate, and have created this site, Thank you. I've found other places in the past that were informative and helpful, but this site has it all, in a well organized, easy-to-use manor.

Please, keep up the good work. Cool
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As strong and tough as CH's are, I AM STRONGER!
 
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Guiseppi
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Re: O2, my new savior
Reply #1 - May 23rd, 2010 at 10:05am
 
You need to get a referral to a headache specialist, as even neurologists tend to know very little about Cluster Headaches. Some have gotten lucky with a General Practitioner who is either knowlegeable about CH, or at least is open minded enough to read the material you bring them.

I've been dancing with the beast for 31 years and still find oxygen is my first line abortive. There are some people o the board who found they could abort at flow rates as low as 6-7 LPM. Most find 15 the minimum and several get no relief below 25 LPM! Funny how different everyone is.

Energy drinks are effective for many. Red Bull, Rock Star, Monster, any containing the combo of caffeine and taurine. Chug one down at the first sign of an attack. Many can abort or reduce an attack that way. I drink one down as I start the oxygen and believe it shortens the abort time for me.

Welcome to the board, we've got some other people from your area, hopefully they'll chime in!

Joe
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PlayDoh
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Re: O2, my new savior
Reply #2 - May 23rd, 2010 at 6:15pm
 
Thanks Joe. Very helpful. I also have a heart rhythm problem called Arrhythmia or specifically SVT - SupraVentricular Tachycardia, so energy drinks and strong coffee can send me to the ER. Although I do drink coffee and find it helps, I just cant over do it.
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Guiseppi
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Re: O2, my new savior
Reply #3 - May 24th, 2010 at 12:25am
 
Ouch....yeah should have mentioned the heart issues when I recommended the drinks......a definite no no with your history. Keep pushing to get a doc that'll prescribe you the 02 set up. You're likely to be amazed at the speed of the aborts with a higher flow set up.

Then we need to start talking about prevents you can take, that won't have negative impacts on your heart issues. A decent prevent like lithium or verapamil can dramatically reduce your use of oxygen.

Good Luck.

Joe
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