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Message started by aim on Oct 25th, 2011 at 9:08pm

Title: New member
Post by aim on Oct 25th, 2011 at 9:08pm
Hello all.  My name is Aimy and I am new to this site.  I am hoping to find some people that I can relate to.  I have been diagnosed with chronic cluster headaches.  It has been over 5 years now.  I have found that occipital nerve blocks helps temperarily.  I get about 2 weeks of relief.  I also have oxygen at home that I can use for 15 minutes at 15 liters.  It does help as long as I use it at the very onset of the cluster.  There is a large variety of meds that I have tried.  They seem to help for a short period of time but then they seem to be in the same class as the rest.  Does anybody have any suggestions or anything that helps you?

Title: Re: New member
Post by coach_bill on Oct 25th, 2011 at 9:50pm
Hello,

Sorry that you found us, but you will see and learn alot here. I remember when i first found this site, I was alot like you.

You got alot of reading to do, so i will keep this short START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

Ball First...
Coach Bill

Title: Re: New member
Post by Guiseppi on Oct 25th, 2011 at 10:00pm
Welcome to the board Aim. 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 33 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:

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? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Glad to hear you are already using it, please read this link to make sure you're getting the maximum benefit from it. We've found slight tweaks in HOW people use it dramatically changes its effectiveness.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE


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.

Go to the meds section and read the post "123 pain free days and I think I know why"It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time:

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.

Clusterheadaches.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

Title: Re: New member
Post by Bob Johnson on Oct 26th, 2011 at 6:33am
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.

Title: Re: New member
Post by Batch on Oct 27th, 2011 at 9:17am
Hey Aimy,

Welcome aboard...  There's no real limit on how long you breathe 100% oxygen...  Stay on it as long as it takes to abort your CH and use it as many times as you need to.

I'm an old Navy fighter pilot with over 3000 hours flying jet fighters on and off aircraft carriers...  All that flight time was spent breathing 100% oxygen from takeoff to landing or trap aboard ship...  The average mission length was two hours and when the flight schedule was good, I'd make three flights day or night...  I can also tell you I could suck down that 100% oxygen at better than 50 liters/minute when the workload and G-forces were high...

I'm still here at 67 and so are all of today's Navy and Marine Corps pilots flying fighter and attack aircraft today... They all breath 100% oxygen on every flight...  It's a requirement...

If you're having three or more CH a day-24 hours... you're much better off with the larger M-size oxygen cylinders... These hold 3995 liters and that volume should support 25 aborts...  The smaller E-size oxygen cylinders small enough for local travel and work but they're only good for three aborts...

The following link will take you to a thread that discusses the best breathing techniques to use with oxygen therapy...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

scroll down to reply #4.

Take care and please keep us posted.

V/R, Batch

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