Hi folks...just found your site after living with episodic CH going on 25+ yrs (I'm male/46).  Diagnosis back then wasn't a problem b/c my father had them before me.  I watched him go thru all the early treatment regimens like Cafergot and Indocin, but lucky for him, somebody put him on oxygen and life got better until he passed away of cancer.  I've read a ton of stuff on CH and I definitely sympathize with all the emotion and pain in here and on other sites.  I know the pain kicks my ass, but reading some of the posts (suicidal and others) I realize it could be worse for me.  Over the years, my episodes have gone from about 4-8 wks every six or so months, to the current episode, which started two weeks ago after a 3-year remission...long enough to give me a tantalizing sense they were gone for good...what a Beast this thing really is.

Anyway, after a ton of reading, have some observations and a few questions for you pros...
My regimen has typically been continuous 240mg/day Verapamil (in and out of cycles).  At the start of a cycle, I'll typically double the verapamil and add Prednisone starting at 60mg and tapering over 8-9 days, though this cycle I've done it 2x now and only keeps the hits away for the first 4-5 days or so.  I treat hits with std Imitrex 6mg injection, though I try to ration it as I'm running low.  (Yes, I had a stash of three y/o Imitrex that did not go unused...expired or not!)  Imitrex pills are worthless unless I can anticipate the onset and pop one early.  Haven't tried other triptans or O2 yet...but think I will talk to doc about oxygen soon, unless cycle stops soon.

Couple questions:
1.  For those who "double-dip" on Imitrex injection...what care do you take with the statdose syringe between first and second injections?  Alcohol cleaning?  Do you put it back in plastic container and recap it?
2.  I saw a great letter regarding dealing with ins companies about rationing Imitrex prescriptions contrary to doc's requests.  Anyone have any additional compelling stories about convincing insurance cos about CH sufferers being different from migraineurs and needing more?
3.  Anybody have any info on side effects of extended use of prednisone (like for an entire cycle)??
4.  Does anyone else stay on verapamil or other calcium blocker outside of a cycle?  I'm pretty leery of changing anything (if it ain't broke...)
5.  For you oxygen types, for a 2-hit/day guy, what's the right size and number of tanks to keep on hand, and how long does a tank last on average for you?

Thanks for all the great info today.  In one day of reading, I learned what I needed about O2 tricks of the trade, and even may try a red bull if I get a hit tonight.  I still have a kip-4 level ache that has hung around for going on five hours now...starting to make me mad...

Best to all of you!
Mike in STL

Thanks Jeannie...I'm in Webster...very close.  Got a wonderful wife who just walked in the door with a RB four-pack...and just gulped one...we'll see!  If only a mini chocolate concrete worked as well!!

MikeO wrote on Mar 28^th, 2010 at 9:15pm:


Yep, I do alcohol cleaning, put back in container (recap if taking it on the road)

MikeO wrote on Mar 28^th, 2010 at 9:15pm:

My info on staying on a high dose of Prednisone - like 60 mg a day - is that there's a very good chance it will screw you over permanently.

For life.

Major side effects quite possible, including laying waste to your immune system.. That would be a stunt NOT to pull for CH under pretty much any circumstances IMO. I know because I've been there and done that.

MikeO wrote on Mar 28^th, 2010 at 9:15pm:


I haven't seen anyone recommending that, have only seen it discouraged here, and I wouldn't do it.

MikeO wrote on Mar 28^th, 2010 at 9:15pm:
I'm a more than 2 hit a day guy, but I figure 2 M tanks would do the trick for you at home.

Welcome to the board! Another strong vote for oxygen here. About to turn 50, about 31 years of episodic CH, just finished a 2 year remission and like you was starting to convince myself the beast had lost my address! No such luck.

I no longer use imitrex, although a always keep it on hand just in case! Finishing a 3 month cycle, was able to abort with oxygen and energy drinks, never had to break out the trex.  Read the oxygen info on the left and chat with the doc.

Welcome home.

Joe

Quote:

Okay, are we talking Culver's here?

Bo here from STL.  Live in Maplewood.

Suffering an episode for about a month now.  Been 'borrowing' Imitrex 100mg pills from family for about a month now.  Plus taking a few I had stashed.

I actually chew a half an Imitrex and swallow it with a Red Bull.  Seems to work most of the time.

I go to my doc today.  He treated me last year, Prednisone taper.  5x5;4x4;3x4....

I am hoping he scripts me the pred and the injectable Imitrex today. 

This sucks.

This weekend I might have to go mushroom hunting in Illinois, but that's a last resort.

Hi and welcome Mike,

    I sure wish you'd found us in Jan.  We have a yearly get-together and for the last 2 yrs. it's been in St. Louis.  Our last convention was also in St. Louis.  This years convention will be in Atlanta, Ga. in Mid July.

     Keep all that in mind if you ever feel like meeting other brain damaged folks like yourself.  11 yrs. ago I travelled from Calif. clear across the U.S. for the first convention and I was kind of scared, but it took me no more than 5 mins. to realize what a life-changing event that was for me.  I cryed talking to people who knew exactly what I was going through...plus there is no funnier, caring group of people that I've ever met.

I've never missed one since. 

Just something to think about.   

Thx. re: Prednisone... its a double edged sword for sure.

This latest round started late February.  2x a day.  Varying levels of hell with a 'shadow' that's lasted a few days now...

I was going to 'ride it out' but am tired of the cycles, plus it cut into quality time with my kids and GF in CHI over the weekend.

I'm mid 40's... none of my friends participate in mushroom partaking anymore...

Too bad I missed the STL conventions...

My heart goes out to everybody here.  CH is the worst.  The absolute worst.  I've noticed now that after I fight one, I am more exhausted than in the past... getting older I guess.

First had these in 1999 in New Mexico... nobody knew what they were.  Catscan, MRI, etc...

I am fortunate... I get a cycle every couple of years.  The cycles last 4-6 weeks.  Alcohol IS A SURE FIRE TRIGGER FOR ME. 

I'd love to sit in my backyard with a cold Guiness and a cigar and enjoy spring... to do so would be quasi suicide right now.

Again, best of luck to everybody, I'm off to the Dr. now.

Hi MikeO and welcome!  I'm not too far away on the Illinois side of the river. 

Sounds like you've been given good advice and have a Dr. who is on top of things ch wise (It's kinda like hitting the Dr. lottery).

Again, welcome to ch.com!

Beth

These f*ckin' brainiac doctors who think oxygen is an explosive.

Oxygen is NOT fuel.

"I'm mid 40's... none of my friends participate in mushroom partaking anymore... "

If they were clusterheads maybe they would.  I am in my forties too, I just got more friends.  They help a lot.

--Shaggy

If they say O2 is $8 a bottle through your insurance, ask them what their cash price is. I'll bet you can get it for half that.

Hi
I am also from Saint Louis.  I am 31 years old and have been dealing with this since I was 16.  I don't have a lot of time to talk right now, but I did want to mention the Ryan's headache clinic.  They know everything about CH and make people with CH a priority.  I am so glad I found them!