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

Hi Mike!

Where in STL are you?  I'm in the city near Ted Drew's.  Welcome to CH.com.   Try a Red Bull for that ache you've got.  We call them shadows and a Red Bull will knock them out for me.  02 is my best friend.  Please look into getting it ASAP!

Jeannie

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!!

Hey Mike,

Sorry you had the need to find us but welcome to the club that no one wants to be a member of!!!

My advice is to press your doc for the O2....it has been a lifesaver for me since 05 when I found this site.  I have actually quit taking all prevents as a result of O2's effectiveness....although Verapamil lessened the severity of the hits, I always felt like it actually lengthened the cycle and increased the number of hits.  During the 5 week "high cycle" of my last encounter with the beast with hits numbering 8 to 10 every 24 hours, I knocked out all but 7 within 8 to 10 minutes.....those 7 were aborted with some left over Trex that were 4 and 5 years out of date!!!

Although not an option for all, you might want to check out some of the "alternative meds" being used with great success by many at clusterbusters.com.

Welcome Home and may you have some PF time soon!!

Dallas Denny

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

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?

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:

3.  Anybody have any info on side effects of extended use of prednisone (like for an entire cycle)?

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:

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...)

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:

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?

I'm a more than 2 hit a day guy, but I figure 2 M tanks would do the trick for you at home.

Denny and bejeeber...thanks a lot!  Good advice and much appreciated.  During my last physical, my PCP actually asked ME about O2 therapy...so things may be looking up in the world of general pracs and CH!  Shouldn't have to convince him I don't think...

Assuming this works, I sure wouldn't mind cutting back on the amount of drugs I'm popping these days...

All the best to you!
MikeO

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

About the 02....   You mentioned that you would get it if this cycle didn't end soon.  I would go ahead and get it either way.  That way you will be prepared the next time.  It truly is an amazing feeling to know that I can abort a hit in about five minutes and not worry about rebounds.  I had gotten to the point where I was afraid to use Trex for fear of more frequent and stronger hits later.  I was just riding them out. 

BTW, I get my energy drinks from Aldi.  They are called Red Thunder and are much cheaper.

Jeannie

Quote:

If only a mini chocolate concrete worked as well!!

Okay, are we talking Culver's here?

Brew wrote on Mar 29^th, 2010 at 10:27am:

Quote: If only a mini chocolate concrete worked as well!! Okay, are we talking Culver's here?

Do you mean you were here in STL and did NOT go to Ted Drew's?????   

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. :P

It should be your first 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.   ;)

Sorry to hear to that you had to get back up to speed.

3. Extended use of Prednisone is not a good idea. Can cause all sorts of complications including but not limited to damage to your imune system, effectiveness of vaccines and ultimately osteoporosis, brittle bones etc., to name but a few. Particularly pertinent to us however is the fact that, the more often we us it, the less effective it gets later to actually work in subsequent episodes of CH. Some would even caution against the use of two tapers during one episode.

4. Verapamil. Many here recommend staying on Verapamil for 2 weeks or so after you feel that your cycle has ended and then see if you are really done. If you are not, get back on quickly.

Wish you many PF days.

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.

Yeah, cruel how the beast takes my dark beers, my bourbons and merlots away from me while in cycle. Like you it's asking for a real ass kicking! And yeah, as you get older, it does seem to wear me out more, but I've also noticed I don't get the 10's I got in my earlier years.  Good luck at the doc.

Joe

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

Dr. rx'd Prednisone taper as requested...

kind of poo poo'ed the imitrex injections OVER tablets (which he prescribed)...

he knows more than most GPs about CH. 

We spoke of oxygen and he said its frowned upon b/c its an explosive... hard to get, etc.

um, ok.

FWIW, I work in the welding industry.  I have access to O anytime I need it.  To those in STL, I'd think Cee Kay Supply would be friendly.  If not, give me a PM.

So tonight I eat prednisone for dinner... usually knocks me out of a cycle quickly.  Good times.  Good times.

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

Oxygen is NOT fuel.

A quote from my 'Oxygen Patient Instructions' booklet.

"Oxygen will not explode or burn but will increase the flammability of objects near the concentrated oxygen."

In my opinion your Dr knows next to nothing about treating CH. You need to educate yourself and the Dr, if you want proper treatments. Rather than admit a lack of knowledge about O2 this Dr has given you false information. Let alone the Imitrex.

Telling you oxygen is explosive is close to malpractice to me. Forgive me but this makes me angry.

Best of Luck, Don

"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

Wow...just checked back after a day and look at the replies!  You guys are all awesome!  Really feels good to talk the talk with those who walk the walk (or dance the dance!)

I really must have hit the doc lottery as you said...just got a call out of the blue from the O2 supply house here in STL who told me they already got a call from my doc...have the prescription for 12-15 lpm with NRB mask (I did have to explain that and showed them the info on this site!)...and wanted to know when they could deliver the whole setup to my house!  Good stuff!  Only downside (as usual) is insurance...
O2 house says my insurance will pay for the regulator only...and I have to pay $8 a bottle and max size they stock is E-tanks...also have to buy the NRB mask.  Compared to trex restrictions though, this seems a bargain cost on a per hit basis!

Thanks again you guys...glad to have found you!

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.

I pay 10.00 per e-tank.  WITH Ins. it would have been 42.00   My opinion is that 8.00 per tank is a good price.  A regular non-rebreather should not cost you anymore than 3.00  and that will be o.k. until you can afford a GOOD one.

Visit the ch.com store over in the links to the left and you will see what I am talking about.  It is the Cadillac of masks.

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!

Before I got insurance to pick up my 02 I was renting E tanks for $4.50 a month apiece, and paying around $12 each time I took them in for refills. Now that the insuranc epays I keep 8 E-tanks in a cute little carrier in the garage!!!

Joe

melissa76767 wrote on Mar 30^th, 2010 at 11:46pm:

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!

I love the Ryan HA clinic.  They are wonderful!

Welcome to CH.com!

Jeannie

Quote:

You are sooooooooooooo lucky your CH only last a few weeks...by lucky of course I mean that they don't last long!

Not so fast. Many chronic sufferers here say honestly that they prefer being chronic (most of them have been both episodic and chronic). It takes the guesswork, and thus the uncertainty and dread, out of dealing with when the next one will come.

Perhaps in your case the grass is greener on the other side of the fence....

Cece wrote on Mar 31^st, 2010 at 1:59pm:

The grass is greener on the other side of the fence??????? That's messed up! I love my grass and don't wish for any other thank you. Perhaps some people like being chronic but my husband was just fine with being episodic. I don't mean to be rude but that comment really hurts my feelings! Sorry if perhaps I took it the wrong way. All I meant is my husband could use a damn break! Of course it's no fun when you fear the beast coming back after so long but we don't know what it's like any more not to have a  visit just about every day.

They're your feelings, and I can't control them. I was merely restating what many chronics here have stated themselves. There is absolutely no value judgment in my statement, and nowhere did I say anyone LIKED being chronic. I said they PREFERRED it. I think they'd all say they would LIKE to be pain free.

We could all use a damn break.

Hey Joe,

How big is an E tank compared to an M?    I wish I had one small enough to put in my car.  My M tanks are huge and on stands which make them even heavier. 

Jeannie

Jeannie wrote on Mar 31^st, 2010 at 3:57pm:

Hey Joe, How big is an E tank compared to an M?    I wish I had one small enough to put in my car.  My M tanks are huge and on stands which make them even heavier.  Jeannie

Can't you order different sizes in the same delivery?

I always tell them I want x M-tanks, y E-tanks, and z D-tanks.

I don't know.  My doc arranged for my tanks and he set me up with two M's.  I guess if I asked he might order me a different size.  How much smaller is an E?

The E is the long, slender one in the center. The M is the second largest one in the entire picture, just to the right of the E.

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Don't call your doc - call the supplier. The size of the tank isn't specified in the Rx.

Joe got 8 E-tanks from our new supplier Apria. The delivery guy seemed like he would have given me anything I wanted. Plus he gave me this nice rack/stand to put them in. Previously they were all lined up in the garage and to be honest I worried about them falling over, hitting them with the car, etc. This is really nice. Oh and they also gave him a little wheelie cart for the tank he's currently using although Joe just seems to just carry it around rather than use the cart.

I think next time I'll ask about one of those "baby" tanks like Brew carried around the day we visited the Basilica in St. Louis. We actually have an empty tank like that so I'll see if we can get a trade. That is a great size for taking in the backpack for trips to the zoo etc.

Christy - That would be a "D" tank (second from the left, in the back).

Brew, you're pretty handy to have around!   ;)


Christy, I have the stands too.  They are nice ...

Jeannie wrote on Mar 31^st, 2010 at 5:22pm:

Brew, you're pretty handy to have around!   ;)

That may be so, but did you call your oxygen supplier yet? ;)

And just so you know, an M-tank will require a CGA-540 regulator, whereas an E-tank will require a CGA-870 regulator, so you might want to let them know that you'll need a regulator to go with the E-tank.

They have different fittings.

Unless I miss my guess, she has a reg that'll fit a med tank.  ;)

Racer1_NC wrote on Mar 31^st, 2010 at 7:44pm:

Unless I miss my guess, she has a reg that'll fit a med tank.  ;)

I think you might be right, Beeyul, thanks to a handsome man with a southern drawl...  ;)

I have been on Verapamil for 19yrs. I started CH as a chronic and been episodic since the Verap.

I don't have the nerve to change now.

Don

Jeannie wrote on Mar 29^th, 2010 at 10:23am:

BTW, I get my energy drinks from Aldi.  They are called Red Thunder and are much cheaper. Jeannie

Thanks Jeannie!  You guys may laugh, but it was tough trying to pound down a 16oz Monster the other night!  Think I'll stick to the 8oz Red-somethings...

A few other rookie questions for you...

1. My O2 supplier only supplies D and E tanks at $8 each regardless of size.  Just used a whole D tank at work today keeping the beast at bay.  For those that have M tanks at home, are they medical tanks or welding tanks...and if welding, how did you arrange it, how do you store it, and how do you refill?
2.  Did anyone else need a Rx to get your Optimask ordered?  (I lucked out again in that my GP just faxed it to Lifegas!  What a guy!)
3. Bear with me on this one as I'm still trying to calibrate to your lingo...this is regarding the "correct" O2 hit-abort procedure.  I understand the "need for speed"...but often I have a lingering dull background ache most of the day (shadow?), so it's tough to gauge right when a new hit is coming until the first stabs of pain or burning.  After going on 12 lpm O2 for 10 mins, it got me back to the background ache...but never went completely away.  Then when I shut it off, the hit came back about 20 mins later.  Is it your experience that if I just stay on it longer it should go away?  I also tried the 10 min break thing today, and subsequently ran the D tank empty.  This seemed to keep it away for the rest of the day.  Anyway (ramble), just looking for some expert perspective and tips on using O2 the right way without wasting it.  I love not agonizing over whether to break out one of my few remaining Imitrex injections!

Unless you have to have the D tanks I would just get E's. It's a little unusual for the O2 shop to not have M's, you may want to make sure your Rx reads home & portable. If it doesn't say home they won't give it to you.

You Could've bought the Optimask right here @ the CH.com store with no Rx.

The best way to abort with O2 is to, sit or stand up straight, no bending over, start at the 1st sign on your highest lpm and hyperventilate the O2, then when the pain is going away turn the flow down and breathe normal, or slowly, for 5-15min. to help with the hit returning. Works for me & others.

I have a medical M-tank, welding comes in similar that you take in and exchange for a full one.

Kick the beasts butt,    Don

Please go to the following link for O2 info. It's the "oxygen info" from the left side of this screen.
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I'm one of those who gets a return headache within 10-20 minutes of shutting off the 02. I used to take 2 oral cafergot when I startred the oxygen, the 02 would kill it, the cafergot prevented a re attack. At the suggestion of several on the board I now drink a  Red Bull at the start of an attack as I start the oxygen. Going  into the 4th month of a stubborn fu$#%% cycle and so far the red bull is working as well as the cafergot did.

When I use the red bull this way I don't chug it. Christy pours one "on the rocks" when she sees or hears me break out the E-tank. I take swallows between breaths of 02. It's nice cuz it keeps my throat from drying out with the 02. Cuts down on re attacks and oxygen use.

I've also chased 2 "excederin migrain" with a Red Bull to get rid of the shadows. Just don't make that a habit as too many otc meds is just begging for rebound hits. Others use "4Way Nasal Spray" for shadows. That's the name brand of the stuff. I bought some this cycle but haven't had to try it yet.

Joe