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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Long Time Sufferer, First Time Poster
        
(Message started by: OKC_Kenn on Apr 10^th, 2007, 10:36pm)

Title: Long Time Sufferer, First Time Poster
Post by OKC_Kenn on Apr 10^th, 2007, 10:36pm

Well here I go again, luckily I've had almost an entire year off this cycle. Started again last night a 45 minute Kip 8, the usual 3 hours after I fell asleep. I've heard that cycles can be jump started by stress, that may be the case; spent the day yesterday cleaning up after a dog birthing and 3 kids barfing. Got a good neuro, crappy insurance. No O₂ unless I develop a pulmonary disease (and at 2 packs of cigarettes a day it may not be far off) I've got a couple Imitrex auto-injectors just in case they get too bad. Tried numerous preventative meds, so many I can't racall the names (Beta-Blockers, Calcium chanel blockers, steroids etc.) A believer in the fact that God will never give you more than you can handle along with "offering it up" keep the pain from overtaking me. But still I find myself rocking to the beat of the Pater Noster or pacing in time with the throbs on the left side of my head/face.

Title: Re: Long Time Sufferer, First Time Poster
Post by Yorky on Apr 11^th, 2007, 3:58am

STRESS is my main triggers

we are all different.

wow kip 8....time to make sure them injectors,are realy ready.

i hope last nite was just a freak.

good luck and welcome

Title: Re: Long Time Sufferer, First Time Poster
Post by BarbaraD on Apr 11^th, 2007, 10:51am

Kenn,

Don't understand why the NO O2. That's almost standard with CH these days. Print off some info and take it to your doc.

At the first sign of a hit you might try a can of Red Bull - it works for me (most of the time). Melatonin (12-20mg) taken before bedtime will sometimes keep off the night-time hits (takes a couple of weeks to get in your system - ya gotta stick with it).

For a lot of us stress keeps the hits away. Relaxing brings them on. But we're all different and we all have different triggers. And what works for one will not necessarily work for the next one.

The main thing to remember is that you are not ALONE. We KNOW what you're experiencing cause we've all been there and done that. Best advice - read, read, read. There's years of experience on this board (and several home remedies - some that helped and a few that will make you laugh, but you can bet some of us tried them ;) ).

Welcome to Clusterville. If you need us, there's someone here 24/7.

Hugs BD

Title: Re: Long Time Sufferer, First Time Poster
Post by Rosybabe on Apr 13^th, 2007, 4:23pm

HI, if your insurance does not want to cover O2, you can always get some from a welding supply place, check the threads about this type of oxigen supply , some people here got good information about it, from the type of tank, to the regulator and the proper mask. Good Luck and welcome aboard!!

Title: Re: Long Time Sufferer, First Time Poster
Post by Sandy_C on Apr 13^th, 2007, 4:34pm

on 04/10/07 at 22:36:51, OKC_Kenn wrote:

spent the day yesterday cleaning up after a dog birthing and 3 kids barfing.

Laughing! I don't mean to make light of your pain, Kenn, but I'm mentally picturing this scene. If that isn't stress, I don't know what is!
;;D

What others have said above, oxygen has been a godsend to many of us. Please try to get your doc to prescribe it for you. Make sure the scrip calls for a NON rebreather mask, and a regulator that goes to at least 15 lpm. If doc won't prescribe, go the welder's route. That's what I've done, and bought my mask and regulator very inespensively. I rent my tank, which is HUMONGOUS, for $56.00 per year - that's per YEAR. Costs me less than $20 to refill.''

Read up on these boards about melatonin for night hits, kudzu, imitrex tips, read everything.

Someone is always here, 24/7, so come on in, vent, yell, cry, and ask questions. When I first joined, I was told the only stupid question was the one you didn't ask. I swear by that.

Sandy

Title: Re: Long Time Sufferer, First Time Poster
Post by chrisw on Apr 14^th, 2007, 9:52am

Welcome,

hope things get better for you. try to remember to breathe. Sometimes when stress hits, and you start to feel the tingling starting, pay attention and you will sometimes notice that you are breathing shallow. Take some deep breaths, walk away from the situation for a min. and maybe you can stop it in its tracks.

of course this only helps on attacks that begin while awake.

Good luck,
get the O2
chrisw

Title: Re: Long Time Sufferer, First Time Poster
Post by pieface_49 on Apr 14^th, 2007, 10:55am

Hello Kenn, hope you find what helps you.

Melatonin $5/month, Kudzu $6/month, Capsaicin Spray $14 (suggested under doctors supervision only), Vitamins $6/month, 2 packs of smokes $8/day. I smoke, so I understand how ironic my thinking can be. There seems to be some low cost possible solutions available to CH sufferers. Unfortunately, what works for one may not work for another. Others have mentioned Red Bull (taurine responsible for relief?) and O².

Medical warnings about capsaicin:
http://www.nopepperspray.org/health_hazards_of_pepper_spray_ncjm.htm

Testimony on capsaicin:
http://www.selfgrowth.com/articles/Perry3.html

Low magnesium keeps coming up in CH searches:
http://med-owl.com/clusterheadaches/tiki-index.php?page=Magnesium
http://www.deliciouslivingmag.com/healthnotes/healthnotes.cfm?lang=EN&org=nh&ContentID=1189003

Donnie

Title: Re: Long Time Sufferer, First Time Poster
Post by ClusterChuck on Apr 14^th, 2007, 12:07pm

If you are going to pretend to be an expert on Clusters, how about promoting things that might actually work? The article you linked as a testimonial for pepper spray is HIGHLY suspect, due to who the author is!

Quote:

Author's Bio

Wayne Perry is an ex-television crime reporter who suffered from chronic cluster headaches for 15 years before finally discovering his own cure completely by accident. He also markets the world's first capsaicin nasal spray called "The Sinus Buster".

Sinus Buster has been shown to be a farse, by every reputable clusterhead, on this site, that have tried it.

Chuck

Title: Re: Long Time Sufferer, First Time Poster
Post by Guiseppi on Apr 14^th, 2007, 5:11pm

Welcome to the nut house Ken. Another vote for oxygen, almost 30 years going strong and oxygen is still my first line of defense. And I try to believe He never gives me more then I can handle but quite frankly He over estimates my capabilities at times!!!

Again welcome, start reading like a madman, I hope we can offer you some relief!! These dang things hurt.

Guiseppi

Title: Re: Long Time Sufferer, First Time Poster
Post by pieface_49 on Apr 14^th, 2007, 10:57pm

on 04/14/07 at 12:07:22, ClusterChuck wrote:

Thanks Chuck. I read the whole article and the testimony appeared to be sincere. I stopped reading when the author spoke about what he did for a living. Did not think it was of any importance, thus I missed "Sinus Buster". Sorry I posted the link.

Donnie

Title: Re: Long Time Sufferer, First Time Poster
Post by inyoureye on Apr 15^th, 2007, 2:59pm

Welcome Aboard Ken!

Title: How much do you pay for oxygen?
Post by Ming on Apr 18^th, 2007, 6:26pm

Today I received a bill for the first three months of oxygen. I've been charged $331 a month in rental fees. $22 a refill. This seems exorbitant. Does anyone have any experience with getting "price gouged" like this? Or better yet, have any suggestions for reducing this bill? Thanks.

Title: Re: Long Time Sufferer, First Time Poster
Post by sldrswyfe on Apr 20^th, 2007, 7:58am

Hi Kenn...

Sorry you're back..but glad you made it. We're here...

Thoughtfully,

Sherri