Hi,
can anybody help with disability for cluster? I suffer since over 11 years, and I'm extremely worried that I will loose my job soon, cuz I'm running out of FMLA. Getting more and more depressed... The cluster r getting worse, go figure. I did contact a lawyer, he told me that I only qualify if I make $950/monthly or less, well sometimes I do, sometimes I don't, depends on how often I get the headaches... My health bills eating me up, cuz I have more health issues. My husband is not helping. 

Hi Jerry

I am on O2, 15 Lpm, since 7 yrs, was and since 2day on depacote again, starting w/250mg, going up to 500mg, was since yrs on Verapamil and Topamax, very high dosage, also Imitrex, nasal spray, pills, couldn't handle the injections... The doc did try the steroids too. Never heard that you can go higher then 15 Lpm on O2!

Thank you, Astrid

I will look into all of this. My current O2 provider told me a while ago they don't have any regulators that go any higher then 15 lpm, gotta look for a different one.

Thank you again Jerry!

If the higher regulator doesn't do the trick, you might go the Demand Valve route. It has really made the difference for me. I'm chronic and can kill a hit in about three to five minutes (depending on how quick I get to it).

I've about got off of abortatives totally (very seldom do I take anything except O2). I'm on topamax and trazadone and that's it now. I do take melatonin at night and very seldom have a night hit.

Red Bull or strong black coffee usually kill shadows if I get to them immediately (like when I first wake up).

If you wake with a shadow - DO NOT LAY THERE - GET UP!!!

The demand valve goes up to about 60 liters a minute and is rather expensive, but I've never bitched about the cost because of how it's worked on me.

The disability issue with CH is kinda iffy at best. Most doctors don't have a clue about CH and the disability docs have even less, so it's hard to explain to the "system" how they really effect you.

Unless it's changed, you have to be disabled (not working) 6 months before you can draw the first check (and it takes at least that long to get approved). My husband had a stroke and I got his first check 6 months to the day from the time he had the stroke, but his was the exception (I skipped  lot of red tape and went thru a Congressman from the get-go).

You've gotten some good advice here. CH CAN be lived with and you can lead a good life with them (I know - I'm chronic and raising two grandkids and I'm OLD!). But you've got to fight every step of the way and get your attitude together and decide YOU are going to WIN and the CH is going to lose the battle. Stay on this board and you'll find out that a lot of us are around that have been right where you are.

Hugs BD

Callico wrote on Dec 14^th, 2010 at 11:29pm:

I must interject here.  Going on disability does not equal giving up on life and limiting yourself.  You have to shift focus from career.  But life does not end.

As for getting disability I showed proof of many jobs lost due to illness.  Hospital admissions.  Info on what CH is like for you and how it affects your life.  The neverending list of meds and treatments tried and failed for almost a decade.  That is just the tip of the iceberg.  I also had a couple other health issues, but CH is my main disability.

It bothers me the preconceived notions people have about disability, I used to be hard even on myself about being on it.  But things would be alot worse in my life if I didn't have it.  Every person is different in how their life is affected by illness/health probs, even people with the same problems could have very different experiences in how it affects their life.