So glad to have found this site.  You are all incredible....just reading your posts helps my head.  I have had chronic CH for ten years.  (I was diagnosed a few years ago, but never educated, so I just figured, "Well, it isn't a migraine.  I should just be able to grin and bear it."  It is so good to see that that isn't true...at all!!!  Incredibly validating.  I have literally hurt for 10 years, straight.  At times, it isn't severe, but hurt nonetheless.  I had a kidney transplant (at 18 years old) 13 years ago and was on dialysis two years before it.  If someone were to ask if I'd rather deal with major kidney failure or these headaches, it would hands down be kidney failure.  This is definitely no way to live.  Because of the transplant, I can't have any of the abortive medications or many of the preventative ones.  It's so frustrating.

So, question - how do you maintain a full-time job, a family, hobbies, etc.?  Since working full-time, (all 8 years) I work, sleep, and try to figure out how to decrease the pain, if there are triggers, what they are, what to do about them.  These headaches take over your life, huh?  

It feels like I have tried everything.  BUT, I often go to the Dr. and don't really convey how I am feeling....I need to go in with no make-up and no faking because they just don't get it.  It looks like I need to try oxygen.  I am sure that won't interfere with the kidney.  Do you get a prescription for it??

Good luck to all of you in your journey...I know we all need it.

Shanna

Get the oxygen.

          Potter

Welcome to the board ... and sorry you have to be here

O2 usually is prescribed and you sure should give it a try.
Not sure if this will work with your kidneys but energy drinks (like Red Bull) or strong coffee help a lot of us in aborting an attack.

Since your doc doesn't seem to care I'd look for another one.

Also have a look at the links on the left.

Oliver

Hi Shanna!  Welcome home my cluster sister.  Sorry you have em but you've found the best place for support and info.

With all the trouble you have with meds Oxygen is certainly the way to go.  It won't keep them from coming but will chase them away rather quickly for a lot of us.

Yea, a Dr needs to perscribe it.  The script for be something like:


Quote:

100% Oxygen @ 15lpm via NRB for accute treatment of cluster headache attack

Sometimes there is a need for a letter of medical necessity to get your insurance company to pay for it.  You can find samples here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Along with loads of other great O2 info.

I'm episodic with at least two cycles a year.  I'm in cycle rougly half the time.  Work full time as a software developer and live a relatively happy life with my wife and 10 children.  About the only hobby I have time for is my yoga practice.  

The message is: Don't let the beast take your life from you.  You owe it to yourself and those that love you.  Of course this is easier said than done  ;)  You just have to find a way to live your life to the fullest when you're not in pain.  Take the hits when they come and then live again between them.  It's all about your mindset.

CH is a bitch.  But it won't kill you.

Let us know how we can help...

-Dennis-

DennisM1045 wrote on Jul 22^nd, 2008 at 2:59pm:

The message is: Don't let the beast take your life from you.  You owe it to yourself and those that love you.

You also owe it to the person whose kidney has given you a new lease on life.

Hi Shanna! Warm welcome. :)

PF wishes,
Sanna