Had CH for 13 months now with no break in the attacks. Was confirmed about 7 months ago I was suffering from CH tried to tell my CH on its birthday enough is enough but they havent listerened to me lol.

On the serious side after 13 months it is starting to get me down and I just want to say its great to find other people out there who understand as in Scotland I feel very alone with this as you can imagine not many sufferes or information up here. It is amazing how it affects your life and had another attack last night and just fed up and bored so if I tell my CH how bored I am of them maybe like a child throwing a temper fit maybe they will go well anything worth a try!
Tried so many medication and still not realy finding any combo that works but going to speak to the docs next week about another increase in the verapamil as I have heard good success for some people in getting a break in this cycle.

So this post I suppose has no real meaning or questions apart from allowing me to sound off how pissed off I am (understament of the year) and just hope one day I wake up with no shadow headackes and maybe just maybe after 13 months the CH will get fed up enough and go away. The O2 does help a wee bit and sometimes its great the imirgarn injections bloody hurt but do have effect but fed up being a pin cushion dam I sound down and try so hard not to be but just sometimes it wins but not for long as "Illegitimi non carborundum" applies very much here for all of us

jay wrote on Sep 13^th, 2008 at 11:29am:

...apart from allowing me to sound off how pissed off I am...

Mate, surely it's better than being pissed on!  And forgive my Latin but surely Illegitimi non carborundum translates as "don't get sand in your vaseline".

Have you been in touch with OUCH-UK yet?  I know they're mostly English and so can't be trusted at all but maybe they could help just a little before you pipe them onto a caber for dinner.

Will tartan me haggis and lum the reek,

Brian down under.

Yes Ouch have been very good even though I am in Scotland!

Hi Jay,

The best thing about this site was finding out I wasn't alone.  Welcome home mate  ;)


Quote:

The O2 does help a wee bit and sometimes its great

Why do you think it is effective one time and not the next?  Tell us a bit about how you use it and maybe we can make a few suggestions to help.

Anyway, I hope the SOB loses your address soon.

-Dennis-

Hi Jay,

Welcome.
Buddy I feel your pain and if I could I'd take it away in a minute for you. 13 months wow that must be a holiday in hell.
About the oxygen, I know what you mean. Can I ask at what flow rate you use it? From what I've heard around here, 15 lpm should be a minimum.
My own regulator only goes up to 12 lpm, so I have the same problem, one time it works, the other don't. Luckily I'm out of cycle, but when I get hit the next time, I will push for another regulator.
Yeah, Imitrex (or Imigran as we Europeans call it, Jay) will make you feel like put the tail on the donkey, but rather that than enduring the really nasty ones.

PF wishes from the Netherlands,

Pascal.

Hello Jay:

Sorry the CH has been kicking your butt, and I can relate.  It's been chronic for me for over 20 years.  Keep working with the docs to find the tools that work the best for you and keep them handy.  Learn to live life between the hits.

One therapy that worked to give me a good long break was IV DHE therapy.  3 times a day for 3 days receiving this medicine in a vein along with phenergan (to prevent nausea).  This may be something to discuss with the doctors as a possibility.

Best of luck to you!

Ray

Hi Jay, I feel your pain my  CH had its third bithday last month, I bought him some o2 and Imitrex.
 You didn't mention if you tried prednisone, a high dose 60 to 80mg a day tappered down. This helped me in the past.  
 Its easy to start feeling down, but dont let it win. 13 months your still in denial that you are chronic, sorry buddy you are.  Dont stop trying new things doctors, meds, alternatives.  About 11 years ago I went 14 months CH every day and found a doctor that started me on pred. and lithium, with in two days the beast was gone.  I hope that can happen to you.  Its been three years now for me I keep trying new things and som day I will find that magic combo that works again.  Dont let it win, you can beat it and your not alone.  So go kick ass and keep livin because it bets the allternitive.
   Take care Jay and PFD's to all.   Phil