Well, it's been a while, longest pf time I can remember, but it's back.  I was hoping the very supportive people on this site could provide some info for me, as I have found this to be the only place to go where people really do understand what CH can do to your life.  Anyway, my cluster seems to be different this time in that my morning hit is very stubborn and will not respond to O2 as it has in the past.  I have been taking the imitrex inj. after about 20 min on the 02 and the imitrex works wonderfully, but makes me feel dizzy and my chest feel really heavy (for lack of a better word).  So, first question, is it safe to take imitrex every day?  I know not more the 2 times a day, but is there a limit on number of days to take it?  Also,I am running low on Imitrex (had never really needed it more than 2 or 3 times for an entire cluster before) and insurance will only let me get 2 injections a month!  Needless to say, I would love the O2 to work again.  I should mention that my hits before bed are milder and the O2 has stopped those.  I called my neuro today and asked for a script for higher flow rate regulator (mine only goes up to 8) but he said he does not want to prescribe higher.  He has been wonderful about the clusters thus far and I am wondering why he is reluctant to go higher on the O2.  Of course I did not talk to him, spoke to nurse on phone and have an appt in 10 days.  He does want to start  a prednisone taper which I have never tried and I was wondering what everyone thought about this.  I am nervous of the side effects and that the ha's will come back after the taper is done.  Anyone have good or bad experience with prednisone?  He doesn't want me on anything else, but is was my understanding that the steroids were used while waiting for other meds to kick in.  I am 2 weeks into my cluster which usually lasts 4-5 weeks for me so will the prednisone just end the cycle?  Any thoughts would be welcome.  Last question for now, does anyone know where I can buy a regulator online that would have a higher flow rate?  I really want the O2 to work again!  Thanks for reading!

1. Find a new neuro.
2. Prednisone will give you a nice break while a preventative is given the time to become theraputic.
3. Chances are the CH will return after the pred. taper if you have not started a preventative.
4. Stick around and support others when your cyle breaks this time.

Buy your own 25 liter per minute regulator and be sure you are using a good mask, similar to one sold here.

The jump to a high enough flow rate to allow hyper ventilation, kills virtually every attack in 3-7 minutes for the huge majority of us using it that way.

It will probably be awhile before the medical community catches up, so it's up to you - if you want to stop the pain in its tracks.

Spend some reading posts about O2 here if you want to learn how and why it works so well at high flow rates.

The ball is in your court.

Marc

Ditto Seaworthy and Marc

   Go to ebay and type in "medical oxygen regulators".  15 lpm regulators go for about $30 (which is the minimum flow-rate we need) . . . 25 lpm regulators wouldn't be that much more.  Get a proper mask, like the one shown on the site, with the green 3-litre bag.

   8 lpm can work (and that's what I first had), but not nearly as effective as the higher flowrate regs and masks designed for US.

   Be Safe,

     PFDANs


      Richard