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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New member
        
(Message started by: DanCP on Jun 16^th, 2005, 4:09pm)

Title: New member
Post by DanCP on Jun 16^th, 2005, 4:09pm

Hi, I am about a week into a new cycle and just found out about this website so thought I would post with my info. I am 36 years old and have been a CH sufferer for about 10 years now. The cycles are usually 7 months apart but this time it has been just over a year. The pain always starts behind my left eye and then radiates through the whole left side of my head. My left nostril gets clogged up and my left eye feels like it's really swollen but it is really just droopy. They always last just about 1 hour.
The cycles usually start off not too bad- one a night, medium pain and ramp up in intensity and frequency as they go on- ussually about 6-8 weeks. Generally at the peak one wakes me up in the middle of the night, another wakes me up early in the morning (which is always the worst because you feel like you've just gotten back to sleep and out of the last one when you are hit again) and sometimes a random hit during the day.
I am taking verapimil now which seems to be making them a little less severe but it is hard to tell because it is the beginning of the cycle. I tried oxygen a couple of years ago but that didn't really seem to help at all- it certainly didn't shut it down within a few minutes the way people on this site talk about it. I am going to try and get some kudzu today after hearing so much about it here.
Thanks for letting me vent here- it feels good to talk about this. My wife is very supportive and understanding but after awhile what can you really say? I don't talk to anyone else about it because most people don't even know what CHs are. It is good to know that other people out there are dealing with this. Thanks, Dan

Title: Re: New member
Post by E-Double on Jun 16^th, 2005, 4:28pm

What kind of oxygen set up did you have??

Did it look like this?

Oxygen...

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Educate your doctors!!!

Title: Re: New member
Post by DanCP on Jun 16^th, 2005, 4:35pm

I had a similar oxygen setup but just a mask- not a nonrebreather mask like shown. Would that make that much of a difference? Thanks, Dan

Title: Re: New member
Post by E-Double on Jun 16^th, 2005, 4:54pm

on 06/16/05 at 16:35:25, DanCP wrote:

I had a similar oxygen setup but just a mask- not a nonrebreather mask like shown. Would that make that much of a difference? Thanks, Dan

MAKES ALL THE DIFFERENCE IN THE WORLD!!!!!!!!

With the non-rebreather you are inhaling 100% oxygen...That is what we need!
Without it you are getting additional elements that are of no use to the hit ;)

Try it again my friend and welcome to the nut house!

Best wishes!

Title: Re: New member
Post by DanCP on Jun 16^th, 2005, 6:23pm

Thanks for the info- I will try it again. It would be amazing if the O2 would truly abort the headache!

Title: Re: New member
Post by E-Double on Jun 16^th, 2005, 6:31pm

Title: Re: New member
Post by Cynde on Jun 16^th, 2005, 7:16pm

I'm another new member as of yesterday. This kind of site is so helpful for us CH sufferers. Two weeks into my fourth bout with CH over the past 25 years, I gave up. They started coming at least twice a day, and often awakened me at night. Each time I've had them before, I was treated with small doses of poison -- ergot, belladonna, etc. It worked each time. This time, they put me on a two-week tapering regimen of prednisone and a couple of months of calcium channel blocker. It has been almost 48 hours since my last attack, and I feel great. I've had two undisturbed nights of sleep, too, which helps. I am aware of the potential side effects of the prednisone, but if using it short-term poses minimal risk, I'm ready to use it to feel better. I am optimistic that I am in the groups of people for whom this works...but we'll see!

Title: Re: New member
Post by jokrs2 on Jun 16^th, 2005, 10:31pm

Welcome aboard Dan & Cynde. You're in the right place at the right time. Wishing you the best in your battle.
Blessing's, Joe

Title: Re: New member
Post by BobG on Jun 17^th, 2005, 4:44am

Hello Dan, welcome to the board

on 06/16/05 at 16:09:53, DanCP wrote:

I am taking verapimil now
I am going to try and get some kudzu today after hearing so much about it here.

Please go to the Medications, Treatments, Therapies section and read all about kudzu. There are some warnings about taking it with certain meds.

Best of luck to you.

Title: Re: New member
Post by jcmquix on Jun 17^th, 2005, 6:36am

I know exactly what you mean Dan, thats almost the same as mine. Thats my bigest thing I thought I was just going CRAZY, until I found this site. Listen to the Veterans here, and read the information, its has helped me alot in the last 72hrs, and it gives you hope to kick some ass on the BEAST.

Title: Re: New member
Post by Blackrosa on Jun 17^th, 2005, 9:22am

welcome to the broad..im a newbie myself..and i have hadsome good advice from this board..I am a newly clusterhead.. after 5months of randomagaony we have finally given it a name...A bug hig to you all

Title: Re: New member
Post by BobG on Jun 17^th, 2005, 9:27am

on 06/17/05 at 09:22:21, Blackrosa wrote:

i have hadsome good advice from this board..randomagaony ..A bug hig to you all

You Brits talk funny ;;D

Title: Re: New member
Post by Gator on Jun 17^th, 2005, 9:48am

Welcome to the website! Read everything you can in the links to the left and in the various message boards. Tons of good information, updated almost daily.

For those of you who have tried oxygen in the past, try it again using a non-rebreathing face mask (plug any outside air inlets and cut the straps off) and up to 15lpm. There's documented proof it works for a lot of people for whom the standard 7 - 10lpm does not.

Go here and print this article by Dr. Todd Rozen and take it to your doctor. Demand to be allowed to try this. If you can't get it, try welder's oxygen. There are several people on this website that can help you get set up with a welder's O2 rig.

http://www.chhelp.org/mhni.html

Quote:

Oxygen, the safest of all cluster therapies, is usually prescribed based on a landmark study by Dr. Lee Kudrow. In this study, patients were instructed to use 100% oxygen via a nonrebreather face mask at 7-10 liters/minute.

Quote:

MHNI's experience indicates patients who do not respond to the standard flow rates should be given the opportunity to use up to 15 liters/minute. However, prior to initiating this therapy, patients must obtain clearance from their primary care physician since serious lung disease and other conditions can make oxygen therapy unsafe or inappropriate. In addition, such oxygen therapy should not be used for more than a maximum of 10-20 minutes at a single setting.

Here's another resource by Dr. Rozen that describes Preventative, Transitional, Abortive and Surgical treatments for CH. Print it and take it to your doctor along with the Oxygen information.

http://www.brightok.net/~mnjday/chtherapy.pdf

Again, welcome to ch.com. You won't find a better place for information and support anywhere else in the world!

Title: Re: New member
Post by DanCP on Jun 17^th, 2005, 5:53pm

Thanks Gator, that's alot of great information. I am going to try the oxygen again-I wish I had known all of this a few years ago! Dan

Title: Re: New member
Post by Jonny on Jun 17^th, 2005, 6:09pm

on 06/17/05 at 17:53:50, DanCP wrote:

I am going to try the oxygen again-I wish I had known all of this a few years ago! Dan

I said the same thing when I showed up here 6 years ago and told this family that 02 did not work for me.

They pushed me to try it again THE RIGHT WAY...and dont ya know I can kill almost any HA in 10 mins...and im chronic.

For me 02 will only hold the beast at bay when I wake up full blown while I take another abortive (Zomig NS)

I hope it works for you like it has me, Brother

..............................jonny

Title: Re: New member
Post by SteCo on Jun 17^th, 2005, 6:23pm

on 06/17/05 at 17:53:50, DanCP wrote:

Thanks Gator, that's alot of great information. I am going to try the oxygen again-I wish I had known all of this a few years ago! Dan

Did not see it mentioned yet.....but just in case for a check...be sure the regulator is a HIGH FLOW one.....IMHO This goes hand in hand with the mask.
Yes.....o2 works great!!!!!
SteCo

Title: Re: New member
Post by cazman on Jun 17^th, 2005, 10:06pm

welcome welcome welcome you are in the right place, we here know your pain, nobody here will say just take and asprin and lay down, we know the ins and outs the do the donts but most of all we care about you and are here to help in any way we can stick around get some help when the cycle is over stay here and help others that are not so lucky to be pf at that moment thats how this works god bless you both and my you find your pf soon

Title: Re: New member
Post by maurice on Jun 24^th, 2005, 4:31pm

Hi, i have just come on board today im well impressed with the site.