Ok, this is only my second cycle .. but I thought I knew what to expect.  Since it's been 5 years since my last cycle ... I know I forget some things but ...

The first week was pain, always while sleeping that woke me.  I thought at first it was a toothache, sinus infection, you name it ... just not clusters.  It hurt, but didn't hurt like CRAZY.  I was in denial and popping sinus meds like crazy. 

By the second week, I was waking up in agony.  I knew for sure it was clusters and started taking the imitrex shots that I had held on to for 5 years.  They worked like a charm, which further confirmed for me it was clusters.  I called my doc and got a new script for Imitrex as well as ordered O2. 

The doc's office dropped the ball on both requests (even though the doc had approved it) and it wasn't until a week later I got the Imitrex, then followed by the 02.  My script for Imitrex was only for 2 shots ... burnt them in two nights. 

In the meantime, I started getting hit durning the day ?????????  I'm not used to that, as my last cycle was strictly at night until I was going out of cycle.  I was also used to only getting hit once at night (a good one).  Last night I woke up 4 times and had to hit the 02 .... WTF ????

I had called the doc again to see if they could do the letter of medical necessity, and she suggested I try something new.  Trexemet (imitrex pill form with some Tylenol thrown in).  They seem to help, but I need the 02 to get the headaches down to a manageable level while waiting for the pills to kick in.  So I did that another few days. 

Bottom line.  I'm off work cause I'm exausted, and getting hit during the day as well as at night.  I tried doing o2 all last night with no meds ........ and still got three headaches before finally doing the Trexemt.  Had a headache again during the day today.  Went to bed tonight and got a banger ........  Any suggestions ???????

Hello,

How long are you staying on the 02? Maybe you should stay on for a full 15=20 minutes even if the hit is gone in 5 minutes. I think that may help. Same thing has happen to me, and going a little longer on the 02 helped.

Best, Coach Bill

One Eye, That all sounds very very familiar.

The Beast morphs and changes tactics as he goes along. I never had an attack between the hours of sunset til going to sleep for the first 23 years of my CH. Then you know who decided to change the game.

Your O2 experience sounds just like mine. I wish I would've seen Giussepi's suggestion about the energy drink to keep the rebounds away last summer when I was getting hit every hour after going to sleep. Seems worth trying to me. keep in mind the energy drinks also have taurine, and some CH folk believe that to be part of why they work.

You really might benefit from a higher flow regulator too, one that goes at least up to 25 LPM. You may use up the O2 even faster with it, but in my book that is normal.

May want to ask the Doc for some Amerge or Frova.  They are triptans similar to Imitrex but have a much longer half life.  They may keep the night bangers from returning.

Good abort advice above.  I'm with Neuro on this one though.  It sound like it's time to find a preventative med that can give you some peace.  Have you tried this route before?  If so, what did you use?

It also sounds like your Dr doesn't really know CH.  Treximet, as you've found, isn't a CH med.  It's too short lasting to take ahead of time and too long in providing relief to be of any use aborting the damn things.

Sounds like he's a GP.  Get a referal to a Neuro.  Preferably a headache specialist.  Unless I'm reading this wrong all he's going to do is delay serious relief for you.

I hope you get some PF time soon and then another 5 year break...

-Dennis-

All I know is that you have to learn to expect the unexpected!

A Doctor once said to me "We know a lot about a little, and a little about a lot"

All the best

Iddy

Ok, I've read all the responses (and forgive me if I don't address your response specifically ... I appriciated them all). 

My doc did prescribe Verapamil for my last cycle.  Unfortunately, after going for so long I threw that script away.  I'll ask for a new one.  And yes, she is a GP .. but she listens to me, and was really good the last cycle with any suggestions I had to make based on receiving info from this site.  I'm lucky there. 

The o2 is going at 15 lpm's with a non-rebreather mask, but I'm not having much luck with that.  I did do a whole night with nothing but o2, but ended up getting hit over and over again.  The headache would go away, I would go to sleep, headache wakes me up ... o2 again, back to sleep ... you get the drift.  No imtrex or other abortives were used (and I'm not on any other meds) for 24 hours and the o2 just wasn't cutting it.  Perhaps I do need a higher flow rate,; but Apria (o2 vendor) told me that they don't have a higher regulator available.  I can try the Red Bull as suggested, any other input on that would be appreciated.  I'd really like to stay off any drugs ... but, I'd also like to SLEEP !   

Thanks for the suggestion on the amerge and flora. I can ask the doc for those, since abortives seem to work pretty well for me for now. 

Again, thanks for everyone's response !  And Happy Easter to you all.  I'm out of abortives .... so I'll pick me up some Red Bull and call it an Easter party tonight !   

OneEyeBlind wrote on Apr 4^th, 2010 at 11:46am:



Try and go to Ebay for the regulators and other O2 supplies. Some have had great success by-passing apria and the likes using this route.

Much Luv and PF Wishes My Friend,
Pfunk

Pfunk tells it like it is regarding regulators.

I've used Apria too, and no they don't have hi flow regulators, so I went around them and ordered one, plus a non rebreather mask with reservoir, online.

Sounds like you need a new doctor!  My neuro will cancel other appointments to fit me in when i call about a new cycle, and preventatives are always started immediately along with a Medrol dose pack.  I hope you find the help you need soon!