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DanCP
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I love YaBB 1G - SP1!
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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
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E-Double
CH.com Alumnus
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Re: New member
« Reply #1 on: Jun 16th, 2005, 4:28pm » |
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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!!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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DanCP
New Board Newbie
I love YaBB 1G - SP1!
Posts: 5
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Re: New member
« Reply #2 on: Jun 16th, 2005, 4:35pm » |
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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
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E-Double
CH.com Alumnus
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Re: New member
« Reply #3 on: Jun 16th, 2005, 4:54pm » |
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on Jun 16th, 2005, 4:35pm, 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 |
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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!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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DanCP
New Board Newbie
I love YaBB 1G - SP1!
Posts: 5
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Re: New member
« Reply #4 on: Jun 16th, 2005, 6:23pm » |
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Thanks for the info- I will try it again. It would be amazing if the O2 would truly abort the headache!
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E-Double
CH.com Alumnus
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Re: New member
« Reply #5 on: Jun 16th, 2005, 6:31pm » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Cynde
New Board Newbie
Posts: 18
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Re: New member
« Reply #6 on: Jun 16th, 2005, 7:16pm » |
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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!
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| « Last Edit: Jun 16th, 2005, 7:18pm by Cynde » |
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jokrs2
New Board Old Timer
Eventually He will make us pain free!
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Re: New member
« Reply #7 on: Jun 16th, 2005, 10:31pm » |
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Welcome aboard Dan & Cynde. You're in the right place at the right time. Wishing you the best in your battle.
Blessing's, Joe
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Given strength, courage & a sound mind!
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BobG
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Re: New member
« Reply #8 on: Jun 17th, 2005, 4:44am » |
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Hello Dan, welcome to the board
on Jun 16th, 2005, 4:09pm, DanCP wrote: I am taking verapimil now
I am going to try and get some kudzu today after hearing so much about it here. |
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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.
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Stay stressed. Never relax. Never sleep. Ever.
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jcmquix
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Re: New member
« Reply #9 on: Jun 17th, 2005, 6:36am » |
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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.
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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Blackrosa
New Board Newbie
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Re: New member
« Reply #10 on: Jun 17th, 2005, 9:22am » |
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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
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*-*Being who i want to be*-*
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BobG
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Re: New member
« Reply #11 on: Jun 17th, 2005, 9:27am » |
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on Jun 17th, 2005, 9:22am, Blackrosa wrote:| i have hadsome good advice from this board..randomagaony ..A bug hig to you all |
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You Brits talk funny 
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Stay stressed. Never relax. Never sleep. Ever.
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Gator
CH.com Alumnus
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Re: New member
« Reply #12 on: Jun 17th, 2005, 9:48am » |
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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. |
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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. |
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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!
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DanCP
New Board Newbie
I love YaBB 1G - SP1!
Posts: 5
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Re: New member
« Reply #13 on: Jun 17th, 2005, 5:53pm » |
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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
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Jonny
CH.com Alumnus
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Re: New member
« Reply #14 on: Jun 17th, 2005, 6:09pm » |
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on Jun 17th, 2005, 5:53pm, DanCP wrote:| I am going to try the oxygen again-I wish I had known all of this a few years ago! Dan |
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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
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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SteCo
New Board Veteran
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Re: New member
« Reply #15 on: Jun 17th, 2005, 6:23pm » |
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on Jun 17th, 2005, 5:53pm, 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 |
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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
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cazman
New Board Veteran
if ya dont like it take a walk
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Re: New member
« Reply #16 on: Jun 17th, 2005, 10:06pm » |
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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
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maurice
New Board Newbie
Hi, im the suffering Scotsman.
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Re: New member
« Reply #17 on: Jun 24th, 2005, 4:31pm » |
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Hi, i have just come on board today im well impressed with the site.
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