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?  ;D

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

Welcome Back BigCoffinHunter.

I've got the CURE!!!   [smiley=crackup.gif] 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.  ;D

Good luck with your Neuro app. let us know how it goes.

Sending PF vibes your way!

Hey BigCoff - sorry you had to return to the party.  :(

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:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

That is a great article in Newsweek.  A glimmer of hope perhaps.

Back from the Neuro with scripts for O2, Verapamil, Zomig, and steroids.  I'm as prepared as I can be.

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.

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).

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

Dan Epps wrote on Dec 16th, 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!

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.

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.

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!!!!

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

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!

Great news, wishing you a peaceful and pain free Christmas! ;)

Joe

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!

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

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. 

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).

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.

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).

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

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

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.

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. 

I had some prescriptions left over from 4 years ago, but not as much as I thought.  I had one box of zomig, which is 6 sprays, but for some reason I thought a box was 18 oops.  It got me through the first week until I got my new scripts though, and that's what counts.

I had verapamil left over, but I didn't take it until I saw my neuro.  I think that was probably a mistake, and will start taking it immediately next time.

Still doing well...no hits, tapering off the Verapamil. 
I plan on stocking up on the Zomig, getting at least a 30 day (assuming one a night) supply if not more, getting a welder's O2 tank, and continuing with magnesium and melatonin (I really feel that taking those out-of-cycle helped with killing the cycle early this time.)
I hope to contribute more here too.  I always mean to, but seem to eventually put them out of my mind and not stop by here much after a while. 
In short, these things f*cking suck.  They suck the soul right out of you, and is probably the worst thing that can happen to you physically save something fatal.  A big middle finger to the Beast!

Just an update...almost done with the Verapamil, no hits still.  I'm positive getting on a good dose of of it killed the cycle early.  Still taking melatonin and magnesium (as always), getting refills of the verapamil and zomig for next time.  I see a welder's O2 tank in my future. 

That's great news!~ Yeah, you'll rapidly fall in love with the 02!

Joe