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Russell H.
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May 4th, 2014 at 8:14pm
 
I am 42yo male.  I was diagnosed when I was 20yo.  I have tried all types of medication. I wish I had found this site sooner.  For the last 10years I have used the O2 and it works great for me to abort 90% of all headaches.  When I first started it was every year for the first few years, then it went every other year till I was 38.  I had been headache free for 4 years until now.  My father also suffers from these headaches since the early 80's that I remember. I don't know what I would do without my wife.  All the times she took me to the hospital in the middle of the night yelling at the staff to get me some oxygen (this is before I knew you could get a prescription).  I appreciate all the stories and insight to different treatment options.
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Guiseppi
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San Diego to Florida 05-16-2011


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Re: New
Reply #1 - May 4th, 2014 at 10:24pm
 
Welcome to the board Russell. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? As you've already discovered, Oxygen is a great abortive.  Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link to make sure you're getting the maximum benefit:

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This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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wimsey1
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Re: New
Reply #2 - May 5th, 2014 at 8:09am
 
Welcome Russel! Joe has summarized beautifully most of what we currently know when battling the beast. Sounds like you're doing pretty well, but if you have any questions don't hesitate to ask. We're all in this together! blessings. lance
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Russell H.
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Reply #3 - May 6th, 2014 at 5:45pm
 
thanks for the info.
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TeeJ2379
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Re: New
Reply #4 - May 6th, 2014 at 11:30pm
 
Yup, Joe's greeting for newbies is always well done.  When I first discovered this site, that greeting got me started on a path to dealing with my CH.  Now hopefully May 31st will just be another day....Read up Russel, plenty of support and info here.  Glad you found us.  Keep us posted on your condition and treatment.
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Pain is a wonderful teacher and motivator...
 
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