Click this link to read a post I like on the clusterheadaches.com message board...

LindaS

CH.com Newbie

Offline

Living life or atleast
trying to!!

Posts: 15
Wisconsin
Gender: female

You have got to be kidding me!!!!
Jan 20^th, 2010 at 12:06pm

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. Angry

And I called the doc, because I used my last Imitrex during my last cluster, and he is not in until Friday. Angry

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. Cry

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 Tongue

.

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: You have got to be kidding me!!!! Reply #1 - Jan 20^th, 2010 at 12:11pm Sounds to me like you have one immediate problem: where to find a new ~~biotch~~, uh, pharmacy.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: You have got to be kidding me!!!! Reply #2 - Jan 20^th, 2010 at 12:45pm If you would have gotten oxygen you wouldn't have nothin to snivel about. Potter
Back to top	IP Logged

LindaS

CH.com Newbie

Offline

Living life or atleast
trying to!!

Posts: 15
Wisconsin
Gender: female

Re: You have got to be kidding me!!!!
Reply #3 - Jan 20^th, 2010 at 3:55pm

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. Angry

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.

Back to top

IP Logged

BarbaraD

CH.com Alumnus

Offline

Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: You have got to be kidding me!!!!
Reply #4 - Jan 21^st, 2010 at 7:43am

#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 Kiss

Back to top

What don't kill ya, Makes ya stronger!

IP Logged

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: You have got to be kidding me!!!!
Reply #5 - Jan 21^st, 2010 at 9:22am

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.

Back to top

Bob Johnson

IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: You have got to be kidding me!!!!
Reply #6 - Jan 21^st, 2010 at 9:48am

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! Cry

Joe

Back to top

"Somebody had to say it" is usually a piss poor excuse to be mean.

IP Logged

LindaS

CH.com Newbie

Offline

Living life or atleast
trying to!!

Posts: 15
Wisconsin
Gender: female

Re: You have got to be kidding me!!!!
Reply #7 - 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.

Back to top

IP Logged

Chad

CH.com Hall of Famer

Offline

Posts: 738
Emmaus, PA
Gender: male

Re: You have got to be kidding me!!!!
Reply #8 - Jan 21^st, 2010 at 11:04am

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.

Back to top

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

IP Logged

Click Here to visit the CH.com Facebook page!

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: You have got to be kidding me!!!! Reply #9 - Jan 21^st, 2010 at 11:25am 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
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!