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Some help....maybe?? (Read 1779 times)
klynn61
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Some help....maybe??
May 15th, 2012 at 11:53am
 
I have suffered from clusters for 35 yrs. now. They usually come daily, sometimes 2-3 a day for about a month and then disappear for 2-3 yrs. As i've gotten older, they have become easier to deal with. One thing I have found over the years is trying really hard to hold myself still rather than panicking helps me cope a lot better and usually makes it disappear faster. I started to get clusters again about a week and a half ago after being free for two years. I usually wake up with one about an hour after I fall asleep. I have been searching the computer to see if there are any new drugs out there, however it looks like the same stuff which has never helped me at all. I recently was looking on You Tube and came across a woman who claims she fights them with Pepsi. Apparently she went on one of the Cluster messageboards and tried to offer some advice and was not very warmly welcomed as people thought she was a rep from Pepsi, or something like that. I'm sure Pepsi has many other ways of advertising, rather than trying to trick sick people into drinking their brand.  Anyhow, I decided to try this trick....as soon as I feel one coming on I down Pepsi and within 5 minutes it disappears and i'm good for another day. It doesn't have to be just Pepsi...the same worked with Coke.  I'm sure the caffeine plays an important part, and the key is to drink it really fast. I decided to try something new yesterday. As i was driving I started to feel the shadowy feeling coming on. I stopped at a local convenience store and bought a Red Bull and downed that really fast. I hate the taste of it, it tastes like a giant sweet-tart, however it did the trick and shadow fizzled out and I felt great. Anyhow, i'm not claiming this is for everybody, as like I said, i'm getting older now and my clusters aren't as bad as they used to be, so maybe I just need something a little lighter than others, but it certainly doesn't hurt to try it, and it definitely won't break your bank account as some of these prescriptions will.  If you do find it helps, please spread the word.  It would be nice to see a cluster-free world!
If you are interested in watching the Youtube video, send me a message and I will send you the link.
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BobG
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Re: Some help....maybe??
Reply #1 - May 15th, 2012 at 1:18pm
 
Sorry to hear you are suffering with clusters. The Coke, Pepsi, Red Bull caffeine thing has been mentioned many times here over the years. Lots of us use that trick. I'm glad you have found something that works for you.
A couple of messages below this one is titled 'Sheets Energy Strips'. There is a little more info in that string.
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Stay stressed. Never relax. Never sleep. Ever.
 
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Guiseppi
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Re: Some help....maybe??
Reply #2 - May 15th, 2012 at 1:52pm
 
Welcome to the board. The caffiene is an old school trick for aborting attacks, many have found the energy drinks, which combine caffiene with Taurine, seems to turbo charge the effect and really speed up the abort.

One new thing that's taking the board by storm is what we call the "Batch Regimen." It's a daily supplement vitamin/anti inflammatory regimen that's good for you even without CH!, and is providing way too much relief to be placebo or coincidence. Go the the medications board and check out the posting "123 pain free days and i think I know why"

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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klynn61
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Re: Some help....maybe??
Reply #3 - May 15th, 2012 at 6:24pm
 
I seem to be falling apart as I also have Leukemia and now have some major nerve problems in my lower leg which I think are due to the chemo. Due to this, I started taking Fish Oil and Magnesium and am wondering if perhaps that is why my headaches aren't so bad. Anyhow, i'll keep up the Pepsi challenge and hopefully the nightmare will end soon. Thank you everyone for your valued input. Smiley Smiley
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Guiseppi
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Re: Some help....maybe??
Reply #4 - May 15th, 2012 at 9:26pm
 
Ouch,  Sad that's a full plate you're carrying. Hoping there's some support structures in place for you. Sending some positive, healing vibes your direction. Smiley

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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klynn61
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Re: Some help....maybe??
Reply #5 - May 15th, 2012 at 10:09pm
 
Thanks Guiseppi
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klynn61
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Re: Some help....maybe??
Reply #6 - May 15th, 2012 at 10:15pm
 
Hmmm.....Sheets Energy Strips....i'll bet you they aren't sold in Canada. I've also looked into the oxygen tank, according to my doctor, it's a no-go in Canada.
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Mike NZ
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Re: Some help....maybe??
Reply #7 - May 16th, 2012 at 3:44am
 
Don't take no from a doctor on oxygen. Even if you can't easily get medical oxygen go for welding oxygen. It's the same stuff as welding oxygen has to be really pure otherwise welds would fail, just don't tell them that you'll be breathing it.
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Skyhawk5
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Re: Some help....maybe??
Reply #8 - May 16th, 2012 at 10:37pm
 
Your Doctor is flat wrong about Oxygen in Canada, there are several Canadian members here that use it. Below is a link to info from B. C. Canada that should help you.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Re: Some help....maybe??
Reply #9 - May 16th, 2012 at 10:45pm
 
Quote:
I've also looked into the oxygen tank, according to my doctor, it's a no-go in Canada.

Find a new doctor. That's complete bullshit.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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