Welcome back. He never seems to lose your address does he? Do you have an effective routine for managing your CH? Most important, do you have 02 yet?

Joe

I've tried many of the meds out there but without any luck.  The last neurologist had me on Verapamil, Lithium, Topamax, Depakote, Imitrex, Sansert, and Prednisone as well as a couple of others I can't even remember.  I also try to drink as much water as possible but have not had any luck with that either.  She also had me on just 2ml per minute of the O2 (this was all while chronic).  Nothing helped.  (Maybe I should have tried a new neurologist.)  My current MD, who is furiously doing research before he pawns me off on another neurologist, has recently tried But/Apap/Caf (Barbiturate/Tylenol/Caffeine-usually used for tension headaches) and Endomethicin, but no luck so far.  He also increased my O2 to 5ml per minute to see if I get a better reaction and I now have a mask.  Nothing so far.  Maybe the O2 isn't high enough.  He wants to put me back on the Lithium and Verapamil to see if I have better luck this time.  I'm not so sure.  When I was chronic I was on 9 different meds at one time and nothing helped.  I was a freakin' zombie!  I don't want to be there again.  I also would get panic attacks because I knew the headaches would come and there wasn't anything I could do to stop them so I was on Xanax, Wellbutrin, and Prozac as well as all the others.  That made me not only a zombie but a walking, trying to work and maintain zombie.  I had several blackouts while at work.  They only lasted a few seconds but it was the scariest thing that has ever happened to me.  I'd be standing there talking to a customer and then black out.  I would come to again standing where I had been with the customer talking to me and me having this horrible disoriented feeling not knowing what went on or how much time went by.  I won't go back to that.  I'd rather just deal.  But I'm not adverse to any suggestions that don't put me back on that much medicine all at once.

The last couple of years I have been doing like some others and using an ice pack and pacing or rocking and trying to ride it out. I have also been taking Prednisone.  I am kind of to the point where I have resigned myself to having them the rest of my life.  I do appreciate that I am no longer chronic.  The biggest fear is that I will go chronic again but until then, and this may sound weird, but as much as I hate them I would rather have them a couple times a year even if they do last for months.  I figure it's better than having them every day.

I'm back to doing research again so am open to suggestions.  I know a new neurologist with cluster experience is the first thing but so far after talking with 2 who tried to tell me I had migraines because I am a woman I am not very enthused about seeing another one.

Anyway, thanks for the welcome.

Here's to a cure!! (we can dream can't we??) 

Ouch!!! Okay first off your oxygen flow was way low, we preach minimum 15 LPM flow rate, with many not having success until 25 LPM or better. I use a demand valve and can usually abort an attack in as little as 6-10 minutes. I'm a 32 year episodic sufferer.

The lithium/verapamil combo, curious what your doses were and how long you were on it? That's called the "chronic cocktail" and often proves effective when other treatments have failed. The fact he is suggesting that shows he is somewhat up to date on ch.

Read the oxygen info link on the left and print out the info for your doc, some great studies he can rely on to get you the correct prescription. For 02 to work your lungs must get pure 02 and nothing else, no outside air, no exhaled air. This is best accomplished using a Non Re Breather Mask, and a flow rate of at least 15 LPM, it must be started at the first sign of an attack, if I wait until the attack is well started, it's not effective.

Also, check out    clusterbusters.com               for some "alternative treatments" that many are having success with after traditional meds failed.

Joe

Hi Neighbor!!

My GP in Mesquite is very well versed on CH and had no problem writing out a script for O2 at 25 lpm based purely on what I learned from reading on this website!! 

Dallas Denny

PS  Check your PM's