Click this link to read a post I like on the clusterheadaches.com message board...

BigCoffinHunter CH.com Veteran Offline The man in black fled across the desert Posts: 204 x0\|Schenectady\|USA\|\|0\|0\|NY,New_York	I'm back... Dec 11^th, 2010 at 6:26am After a little over 4 years the Beast reared his head again last night. I'll be making an appointment with my neurologist asap; maybe they've found a cure after all this time?
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: I'm back...
Reply #1 - Dec 11^th, 2010 at 8:03am

No cure...but more knowledge about preventatives and abortives. Things like high doses of verpamil, lithium, melatonin, high flow O2 rates, even energy drinks. Read the forum and find threads on what's working for many of us, and take this list with you. Don't count on your neuro knowing. It's your beast and your fight. Go prepared, and go with God. lance

Back to top

IP Logged

JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: I'm back... Reply #2 - Dec 11^th, 2010 at 8:41am Welcome Back BigCoffinHunter. I've got the CURE!!! just kidding. Couldn't resist with all the 'cures' we've seen posted over the years it's a wonder we are all still here. Good luck with your Neuro app. let us know how it goes. Sending PF vibes your way!
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or An eye for eye only ends up making the whole world blind. M.K. Gandhi If you are going through hell...Just keep going IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: I'm back...
Reply #3 - Dec 11^th, 2010 at 12:23pm

Hey BigCoff - sorry you had to return to the party. Sad

Neurologists don't seem to be offering jack in the way of new stuff.

Around here here there continues to be widespread enthusiasm about high flow O2, and more folks are turning to busting.

As far as breakthrough new meds are concerned, some of us have high hopes that BOL could be prescribed in the future. It's mentioned in this good Newsweek article about CH and busting:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

darth_malted CH.com Newbie Offline Posts: 19 x0\|Saint Louis\|USA\|\|0\|0\|MO,Missouri Gender:	Re: I'm back... Reply #4 - Dec 12^th, 2010 at 11:49pm That is a great article in Newsweek. A glimmer of hope perhaps.
Back to top	IP Logged

BigCoffinHunter CH.com Veteran Offline The man in black fled across the desert Posts: 204 x0\|Schenectady\|USA\|\|0\|0\|NY,New_York	Re: I'm back... Reply #5 - Dec 16^th, 2010 at 11:01am Back from the Neuro with scripts for O2, Verapamil, Zomig, and steroids. I'm as prepared as I can be.
Back to top	IP Logged

Dan Epps CH.com Newbie Offline I Love CH.com! Posts: 14	Re: I'm back... Reply #6 - Dec 16^th, 2010 at 1:39pm Good luck to you!!! I won't get to see the neuro until Feb 10, 2011!!! Just gotta love how the VA makes top-notch care so readily available.
Back to top	IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: I'm back...
Reply #7 - Dec 17^th, 2010 at 12:23am

Dan Epps wrote on Dec 16^th, 2010 at 1:39pm:

I won't get to see the neuro until Feb 10, 2011!!! Just gotta love how the VA makes top-notch care so readily available

.

I'm afraid we see the exact same thing from "civilian" headache specialists. It's standard practice to for them make a clusterhead in crisis wait months for an appointment.

For this they have earned the ONS award (Outrageously Negligent Scumbags).

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

BigCoffinHunter

CH.com Veteran

Offline

The man in black fled
across the desert

Posts: 204
x0|Schenectady|USA||0|0|NY,New_York

Re: I'm back...
Reply #8 - Dec 17^th, 2010 at 6:20pm

bejeeber wrote on Dec 17^th, 2010 at 12:23am:

Dan Epps wrote on Dec 16^th, 2010 at 1:39pm:

I won't get to see the neuro until Feb 10, 2011!!! Just gotta love how the VA makes top-notch care so readily available

.

I'm afraid we see the exact same thing from "civilian" headache specialists. It's standard practice to for them make a clusterhead in crisis wait months for an appointment.

For this they have earned the ONS award (Outrageously Negligent Scumbags).

Thankfully my neuro is a headache specialist, and a decent guy. His office wanted to schedule me as a new patient for mid January!! He told them I'm not new, he only needed a few minutes, now get me in there!

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

BigCoffinHunter CH.com Veteran Offline The man in black fled across the desert Posts: 204 x0\|Schenectady\|USA\|\|0\|0\|NY,New_York	Re: I'm back... Reply #9 - Dec 22^nd, 2010 at 5:38pm O2 being delivered tonight...just in time for the steroids to taper off. It finally took me becoming completely unhinged and screaming at the insurance company for it to get approved. It took a week to get to this point, dozens of phone calls...freaking exhausted. You'd think I was requesting some exotic cure.
Back to top	IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: I'm back... Reply #10 - Dec 23^rd, 2010 at 1:55am BigCoffinHunter wrote on Dec 22^nd, 2010 at 5:38pm: You'd think I was requesting some exotic cure. Nothing exotic, but you'll find that it's quite an amazing treatment when you find how quickly you can kill a CH.
Back to top	IP Logged

BigCoffinHunter

CH.com Veteran

Offline

The man in black fled
across the desert

Posts: 204
x0|Schenectady|USA||0|0|NY,New_York

Re: I'm back...
Reply #11 - Dec 23^rd, 2010 at 6:55am

Yeah I'm hoping. By exotic, I just meant how goddamn difficult it was to get, between the O2 companies and insurance. Hell I offered to just pay for it myself at one point, and the first O2 company suddenly goes
"Oh well we don't have big tanks or regulators that go to 15" THEN WHY HAVE I BEEN WASTING A WEEK DEALING WITH YOU AHHHHHH!!!!

Back to top

IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: I'm back...
Reply #12 - Dec 23^rd, 2010 at 9:53am

No question getting set up with 02 the first time can be a whisker frustrating!! Roll Eyes

They just don't get many requests for a system that requires short duration flows of up to 60 LPM! Freaks them out.

The good news is, after you've done it once, they learn the routine and subsequent cycles are so much easier. Keep the cards of everyone you talk to, so you can deal with the same people, I've found that helps a lot.

Praying the 02 proves the miracle for you that it has been for me. The tension starts, the pressure in my ear begins, my eye starts to water, 6-8 minutes later I am pain free. Truly a beautiful thing!

Joe

Back to top

"Somebody had to say it" is usually a piss poor excuse to be mean.

IP Logged

BigCoffinHunter

CH.com Veteran

Offline

The man in black fled
across the desert

Posts: 204
x0|Schenectady|USA||0|0|NY,New_York

Re: I'm back...
Reply #13 - Dec 25^th, 2010 at 7:56am

So a Christmas update...
Things are going well so far this cycle...better than at any earlier cycle I've had.
I've been on the Verap for over a week, the steroids have tapered off..and no hits the last couple nights.

Maybe I got lucky and by hitting it quickly helped? Maybe a fluke? Maybe I pleased Thor? Whatever, I'll take help from wherever it comes from.

Last cycle I didn't start the Verap until a month in, so I guess I'm pointing to that for the current success.

Anywho cheers and Merry Christmas!

Back to top

IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I'm back... Reply #14 - Dec 25^th, 2010 at 10:21am Great news, wishing you a peaceful and pain free Christmas! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

BigCoffinHunter CH.com Veteran Offline The man in black fled across the desert Posts: 204 x0\|Schenectady\|USA\|\|0\|0\|NY,New_York	Re: I'm back... Reply #15 - Dec 26^th, 2010 at 10:50am Another PF night! I think I'm going to talk to my Neuro tomorrow about lowering the dose of Verap. It's sucking the life out of me; it feels like I've had a dozen beers but without the buzz. Still I'll take this over the beast!
Back to top	IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I'm back... Reply #16 - Dec 26^th, 2010 at 11:01am If you haven't already......really increase your fruit and veggy intake...if you have not already experienced it, verap can really back up the ole digestive tract. Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Click Here to visit the CH.com Facebook page!

BigCoffinHunter CH.com Veteran Offline The man in black fled across the desert Posts: 204 x0\|Schenectady\|USA\|\|0\|0\|NY,New_York	Re: I'm back... Reply #17 - Dec 26^th, 2010 at 11:20am LOL yeah it does that for sure. The worst effect is the just the energy it's sucking out of me, lightheadedness, etc. I'll keep plugging along, it's a small price to pay.
Back to top	IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: I'm back... Reply #18 - Dec 26^th, 2010 at 2:46pm Guiseppi wrote on Dec 26^th, 2010 at 11:01am: if you have not already experienced it, verap can really back up the ole digestive tract. I'm sure Verapamil tablets are made using cement powder, however after a while, with a good diet, the digestive tract gets used to it and speeds back up a bit (it did for me).
Back to top	IP Logged

bonkers CH.com Old Timer Offline What is THIS? Posts: 308 San Diego, California Gender:	Re: I'm back... Reply #19 - Dec 26^th, 2010 at 6:42pm If the change in diet doesn't work within a very few days, Miralax and Metamucil - or a combination of both - should get you back on track.
Back to top	Excessive sorrow laughs. Excessive joy weeps. -Blake IP Logged

BigCoffinHunter

CH.com Veteran

Offline

The man in black fled
across the desert

Posts: 204
x0|Schenectady|USA||0|0|NY,New_York

Re: I'm back...
Reply #20 - Dec 29^th, 2010 at 6:52am

Still PF after a few days on the lower dosage.

One thing I forgot, but I've been taking Melatonin and Magnesium every day since my last cycle. I don't know if having that in my system already helps, but it certainly didn't hurt.

I tend to get a lot of shadows in the spring and fall as the weather changes, and I've found that higher doses of magnesium take care of those pretty well (totally anecdotal but I saw the idea here a few years ago).

Back to top

IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I'm back... Reply #21 - Dec 29^th, 2010 at 8:38am You're not alone...I swear my daily magnesium regimen has made for lighter cycles...purely anectodal, but I'm a believer. Magnesium leeches calcium outta your system so you should be taking a daily calcium/Vitamin D supplement with your magnesium. Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: I'm back... Reply #22 - Dec 30^th, 2010 at 7:44am Just a thought...melatonin works great for me, too. But check to see if your otc melatonin includes B6. If not, you might want to supplement or at least research the link between the two. Good luck, and prayers for continue success! lance
Back to top	IP Logged

BigCoffinHunter CH.com Veteran Offline The man in black fled across the desert Posts: 204 x0\|Schenectady\|USA\|\|0\|0\|NY,New_York	Re: I'm back... Reply #23 - Jan 5^th, 2011 at 9:39pm So it seems like the Verapamil and Steroids broke the cycle early on. I've passed the beer test, and am tapering off the drugs. I plan to stock up on zomig and verapamil while I have the prescriptions and insurance approvals, and get myself a welder's O2 tank (now that I have the clustermask) in preparation for next time.
Back to top	IP Logged

his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: I'm back... Reply #24 - Jan 5^th, 2011 at 9:46pm Super news! What a great way to start the new year..may it last all of 2011 and beyond! Very smart move on the stockpiling..we do the same.
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!