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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Thanks to CH.com for being there...my first post
        
(Message started by: victoriawatson on Sep 3^rd, 2007, 11:58pm)

Title: Thanks to CH.com for being there...my first post
Post by victoriawatson on Sep 3^rd, 2007, 11:58pm

I first found the website about 2 years ago, but this is my first post. Like most of you I am quite emotional about finding this site. It's such an amazing thing to know I'm not alone with the demon...Before finding this site I thought he chose only me to suffer at his hands.

Lots of my friends have migraines or regular headaches, so they just can't imagine what dealing with CH is like.

I swear sometimes I will just go out of my freaking mind with the cycles that seem to never end. The demon takes me to an unbearable crescendo of pain and suddenly leaves me abandoned lying on the floor somewhere. Many times I don't even remember how I got to the "somewhere." I just wander and thrash about seeking the magical place/temperature/light amount, etc. that will lessen the intensity of the pain.

I am in the most intense part of my cycle. It's been almost 2 months now and I'm at about 6 cycles a day. Yesterday was an 8 cycle day though and it left me really depressed today. I tried a new med yesterday that the doctor prescribed, Verapamil SA. 20 minutes after taking it I was hit with a huge attack. Anyone else had that experience with Verapamil?

Title: Re: Thanks to CH.com for being there...my first po
Post by Racer1_NC on Sep 4^th, 2007, 12:02am

Welcome.....sorry you had to seek us out, but glad you found us.

Verap doesn't act fast enough to change anything in 20 minutes......it was just time for a hit. It's a God send for me......I hope it helps you as well.

Bill

Title: Re: Thanks to CH.com for being there...my first po
Post by MR_FLOOR on Sep 4^th, 2007, 12:09am

on 09/04/07 at 00:02:39, Racer1_NC wrote:

Like Bill I could not survive without it.Good luck.

Dave

Title: Re: Thanks to CH.com for being there...my first po
Post by chewy on Sep 4^th, 2007, 7:27am

Vearpamil takes up to 14 days to become theraputic. Its a preventative not an abortive.

What dosage are you taking?

Title: Re: Thanks to CH.com for being there...my first po
Post by Wayne on Sep 4^th, 2007, 12:25pm

Hi Veronica

Welcome here, sorry you're having such a shabby time.

The Verapamil takes about two weeks to build up in your system and become effective. During that time Doctors sometimes prescribe a prednisone taper to break the cycle (and give you a break)

You need to get yourself something to abort the hits, Try chugging a can of Redbull when you feel one coming - don't laugh- it truly works and helps many people here. Alternatively you can ask your doc to prescribe oxygen which is also a winner for lots of folks here.

You can beat this so don't dispair, you're among friends now.

Cheers,

Wayne

Title: Re: Thanks to CH.com for being there...my first po
Post by JenniferD on Sep 4^th, 2007, 5:43pm

Hi Victoria, welcome back.

Verap does take awhile to get into your system so definitely try some of the abortives like Redbull, ice (one of the first things I grabbed!) That med does work hon, at least for some of us, just takes a while. After that, it knocked the beast down to a bearable level and shortened the cycle for me.

You'll make it thru this and we're for support when you think you won't.

Hugs,
Jen

Title: Re: Thanks to CH.com for being there...my first po
Post by barry_sword on Sep 4^th, 2007, 6:36pm

Hi Victoria. Welcome.

Barry

Title: Re: Thanks to CH.com for being there...my first po
Post by Guiseppi on Sep 4^th, 2007, 9:25pm

And if it doesn't work....don't get frustrated and give up! It takes a lot of work to find a combination of meds that works, a good prevent, a good abortive, it takes some trial and error but the quality of life improvement is so worth the work! Hang in there.

Guiseppi

Title: Re: Thanks to CH.com for being there...my first po
Post by Batch on Sep 4^th, 2007, 10:25pm

Victoria/Vickie,

You've known all the way along this was the right place and we're glad you've finally decided to chime up.

I'm Pete Batcheller a.k.a. Batch and also your friendly O2 Pusher. If you've not already done so, make an appointment with your doc and ask for an Rx for medical O2. Make sure you ask for 7-15 liters/minute flow rate, and if that's not a problem with the doc, ask for a 15-25 liter/minute Rx.

You'll find a Supplemental User's Guide on the OUCH website in yellow on the left or go to the following URL:

http://www.ouch-us.org/medications/oxygen/o2info.shtml

and drill down in the "O2 Information" link in green. It has more current information on using O2 as a cluster headache abortive than anywhere on the Internet...

There's also a questions and feedback link that you can use to contact me. If you do, I'll send you the latest version of the High Flow Rate O2 Therapy paper and procedures to abort cluster headaches. Long time chronic cluster headache suffrerers who've used O2 for years are using this new procedure and cutting their abort times in half. Please drop me a line so we can help.

Take care and be assured that you are among the best friends and supporters you've ever met.

V/R, Batch

Title: Re: Thanks to CH.com for being there...my first po
Post by victoriawatson on Sep 11^th, 2007, 10:27pm

Hey everyone, I've heard that there is new research out there that Pure Oxygen causes significant and irreversible damage to brain cells. Has anyone read about this research?

Title: Re: Thanks to CH.com for being there...my first po
Post by Rosybabe on Sep 11^th, 2007, 10:33pm

nop, never heard of it, but as usual, you take something to fix something and it will mess up something else...Every time, you stop breathing you also destroy brain cells...everytime you drink alcohol you destroy brain cells...All other meds mess up your heart, your liver, your stomache or your kidneys...I rather not have pain and a few less brain cells ;)

Wishing you lots and lots of pain free time!!!

Rosy.

Title: Re: Thanks to CH.com for being there...my first po
Post by Ctech on Sep 12^th, 2007, 5:50pm

I just started using 02 this cycle and it is great! I read the same info that you did about the brain cell damage but compared to the other “legal” treatments out there I will take my chances with the 02. Besides, I’m sure I have caused more damage to my brain over the years by banging by head into walls then the 02 will do. ;)

The 02 cut my pain time from 1 to 3 hours down to about 10 to 15 min. in most cases. I just hope it damages the beast along with the brain cells!

-Chris