I had my first cluster in 2005 when I was pregnant with my son (though didn't know what it was at the time).  Started my next cluster in late Nov 2009.  Was diagnosed right before Christmas.  Been PF since the 2nd.  Now they are back. Started last night.
I know I really have no room to complain since mine aren't as bad as some peoples, and I am not chronic.  But this just sucks. I thought I would be PF longer than 2 1/2 weeks. >:(  And I called the doc, because I used my last Imitrex during my last cluster, and he is not in until Friday. >:(  Though he did call me in a refill.  But now the pharmacy is being jerks.  I asked if they could have it ready today (they usually take like 2 days to refill) and the lady I talked to was a complete biotch. :'(
So here I am in pain with no abortives, no car to run to get red bull, and just mad. 
So there is my vent for the month  :P.

Sounds to me like you have one immediate problem: where to find a new biotch, uh, pharmacy.

If you would have gotten oxygen you wouldn't have nothin to snivel about.

                 Potter

         

I know. I know.  When I went in to see the doc to get the imitrex, my regular doc wasn't in so I had to see a different one.  He had no idea.  >:(  I had a hard time getting him to prescribe me imitrex, and when I mentioned O2 he just looked at me like i was dumb.   I was planning on going back to my regular doc the following week but then my cycle ended.   I will definately be bringing up O2 at my next visit, for now I have red bull (my wonderful sister brought me some, she is awesome) to get me through. My prescription still isn't done but hopefully will before they close.

#1 - Get a NEW pharmacy!  (if you don't have a car try to find one that delivers - and gets the scripts out THAT day!)

Go to the left of this page and READ and print out the O2 literature and TAKE it to your doc and DEMAND O2 (it works for about 70% of us and is STANDARD treatment for CH!!!!) INSIST on it!!

We've found over the years that WE are our best advocates in the treatment of this disease. Doctors DO NOT (for the most part) have a clue what to do unless we EDUCATE them. Finding a doc who is willing to be educated is the KEY to getting some help. Most of us have been thru several until we find one we can work with.

Keep us up to date on what's going on. We can't help if we don't know what's happening....

Hugs BD :-*

For future use:
1. Keep a stock of Verapamil, or whatever preventive you use, on hand so that you can begin dosing yourself at the first sign of a cycle--before you have time to see the doc.

2. Ditto for some of the more important MEDICAL articles you see here. Print and keep themi a file so that you are not caught off guard, as in your situation of not having your regular doc available. We keep talking about the need to educate our docs but we need to be prepared to do so.

What Bob said! I always stock pile while in cycle. I just finished an over 2 YEAR remission, my longest ever, and it was absolute heaven! I had all but convinced myself I was cured when WAM! The timing was horrible as we changed medical plans the first of the year and I didn't have a GP or a specialist! Fortunately I had 8 E-tanks in my garage and a chest full of lithium, (my prevent) to get me through until my appointments with the new doc.

Always enjoy your pain free times...ALWAYS be ready to do battle. Hang in there, getting caught empty handed SUCKS! :'(

Joe

So do you have your doc write many refills on your prescription and just keep going in to get the refills even when in remission?
It sucks being so unprepared.  I just didn't think they would come back so soon since my last remission was 5 years and now this one wasn't even 3 weeks.  I just thought I had time to make an appointment to talk to my doc.  Guess I was wrong and I will know next time to always keep things on hand.
I will definately print out everything on the left and take it to my reg. doc.  He is actually pretty knowledgable about CH compared to others (I am guessing from what I have read on here) and actually listens to what I have to say.  I can't wait to see him on Friday, I have my notes in hand and will print off all the info to take with me.   
Thanks a lot for all the advice.  :) I really appreciate it.

LindaS wrote on Jan 21^st, 2010 at 10:54am:

So do you have your doc write many refills on your prescription and just keep going in to get the refills even when in remission? It sucks being so unprepared.  I just didn't think they would come back so soon since my last remission was 5 years and now this one wasn't even 3 weeks.  I just thought I had time to make an appointment to talk to my doc.  Guess I was wrong and I will know next time to always keep things on hand. I will definately print out everything on the left and take it to my reg. doc.  He is actually pretty knowledgable about CH compared to others (I am guessing from what I have read on here) and actually listens to what I have to say.  I can't wait to see him on Friday, I have my notes in hand and will print off all the info to take with me.    Thanks a lot for all the advice.  :) I really appreciate it.

I refill as much as I can in remission.  I'm one of those guys who doesn't believe in expiration dates.  I've used Imitrex that was 5 or more years expired and it works fine.  Stockpile is key.  Always be equipped because you never know when the next cycle will hit.

A knoweldgeable doc is great, an open minded doc who will listen to you and pay attention to what you bring them....they're absolutely GOLDEN! Wishing you luck in getting 02.

Joe