Does anyone currently get social security benefits for CH?  I couldn't imagine being chronic and working at my job, when I'm in cycle my job seems so much harder to deal with, just like everything else that causes stress.

teajay wrote on Aug 30^th, 2010 at 1:00pm:


In your case the answer would be no.  If you can still work you would not be eligible.  It is only available for those who are disabled by it.  Read here and you will learn ways of dealing with CH and being able to continue to work.  I've been chronic for over 8 yrs now, and I still work.  Harder?  Yes, but life is sometimes like that.

Jerry

I've got a disability in the works for my chronic clusters. I've had only about a week and a half with no pain since mid-July and a week and a half break from my last ch in june till the one in July. Since January, I've had 3 month-long clusters (including a wasted trip to the ER where the NP ignored my telling her several times that it was a CH and told me I had a contagious pink eye and gave me antibiotic eye drops...I never filled that script and reported her to the complaint department). Since July, I've had 3 roughly 2-week CHs. They never stop day and night. They wake me up in the middle of the night and I'm popping hydrocodones like candy every 2-3 hours instead of the 4-6 hours it says on the bottle. Thankfully my first neurologist appt is sept 27.

So with all of that I have a lawyer to get disability for CHs and my bipolar 1 and schizoaffective 1 disorders. The challenge is to get people to know what a CH really is. If even doctors in ERs or in general md offices misdiagnose the things... I mean how many doctors did each of you go to before you finally had the correct diagnosis of CH? Took me 22 or 23 years. I wrote to the AMA strongly suggesting that medical schools place a ton more emphasis on CHs. It's inexcusable that Chiropractors and dentists (including the students of both) are very familiar with CHs, while general mds and er physicians tend to just blow them off and treat patients as if they are someone who is just looking to score pain meds!
While I wouldn't wish these things on anyone, I'll admit it would help disability cases if those on the panel suffered from one just once. God forgive me the idea, but anyone else agree?

Michelle,
I'm a bit concerned about your *continuous* headache.  I've read back through several of your posts and it seems to me that the headache you describe goes on for days and days without relief?  Do your pain levels stay at the same intensity or do they ease off and then ramp back up again?

Agrees with callico/jerry, narcotics are compounding your problems.

Callico wrote on Sep 2^nd, 2010 at 12:09am:


I'm going to try very hard to be diplomatic about this...

With all due respect, for about 20% of chronic sufferers CH is NOT controllable at ALL. 

In some jobs you may have the luxury of sucking it up and dealing.

But in others, in time sensitive demanding multitasking customer contact sorts of jobs?  Not so much.  I didn't go on disability because I gave up.  I went on disability because my boss came to me and told me I needed to.

When you are getting hit 8+ times a day with KIP 8 or higher,  when you cannot sleep for more than 45 minutes at a time,  when you cannot concentrate or focus for more than 20 minutes at a time because of exhaustion, persistent underlying shadows (which are also prevalent in the chronic that don't respond to treatment), when your job is production based and extremely time sensitive?  No way.  This is not a matter of sucking it up.

In my case an occupational therapist testified to a judge at my ss hearing that I wasn't capable of any work at all, not even folding hotel laundry.

I eventually got better and went back to work but now I'm on disability again.

Encouraging people to do what they can is one thing, but don't be sanctimonious.  If your CH is controllable you have NO IDEA what the OP is talking about.

After reading this topic all the way through, these are my experiences and thoughts.

1st :
I've been chronic for almost 11 years and still work.  NO it is not easy and no this wasn't always the case. I did not have Disability for CH before I was diagnosed and I was not working, hell I wasn't a civil functioning human being.  I went through 2+ years of HELL ON EARTH at times getting and logging in my HA diary 19 to 20 hits per day before I was diagnosed.  Think about it 19-20 hits per day, no I was not sleeping much at all. It took another good year to get them mildly under control and still longer before I was finally down to 1-3 hits per day.  I got a job shortly after that and have been working ever since.  If it were not for my father, my kids and I would not have been able to make it at all, as he supported us through this time.  Thank God for Family.

You are stronger than you think you are and working can be a welcome distraction from dealing with CH.  I find keeping busy during milder hits helps me push through them, gives you something else to think about rather than the pain. 

2nd :
Jerry was not being sanctimonious at all in his post and was merely demonstrating how tough a CH'er has to be to deal with this nightmare we call CH.  We all suck it up and go on after a hit, that's a fact.

I know what you mean Lance, I've heard the mind over matter thing all too often and they usually get a Hearty  Eyeroll in response 

Good post Lance!

Katherine and Lettucehead,

Please understand where I am coming from.  I was obviously not referring to ALL clusterheads in my post.  Yes, there are some who are intractable, but I know of two such who have continued working, getting a college education, including advanced degrees, and maintaining high stress jobs that had no margin of error.  Was it easy? NO!  Could I do it?  Doubt it seriously, but they did, and they have my full respect for it.  In one of the cases surgery was done after all of the above, and this person is still functioning with a smile on face most of the time.  I will let this one weigh if he/she wishes.  I won't go beyond that.  I don't think it is my place to speak for him/her, although this one has spoken of it in the past. 

I know what it is to be chronic.  Have been for about 9 years now, after over 20 episodic (I quit keeping track.  I could figure it out, but it's just a number).  I've also had to leave jobs because of it, and have lived below the poverty level as a result.  I'm not preaching mind over matter either.  That doesn't work long term, although a good positive attitude goes a long way.  What I was saying (and I was speaking primarily to the attitude first portrayed) that I refuse to give up.  I could have taken disability several years ago, but I didn't quit working on it until I found something that did work, and I've been as productive as I can during the time.  If you will remember, the first poster is episodic, NOT chronic.

This post is not meant as an attack by any means.  Please don't misconstrue it as such.  It is merely an abbreviated attempt at an explanation of where I'm coming from and an attempt to explain the attitude I've had to develop toward this malady in order to function and survive.  That too is a choice.  I'm glad I made it.

Jerry

Fine Jerry...you asked for it...I'll call you out by name!!   Calico is one of the most huggable, loveable, caring people you'll ever hope to meet! I've had the honor of meeting him several times in person, and he's specifically one of the poeple I was speaking of when I told you once you meet the person,.......in person....you'll never view any of his posts the same!

Love ya jerry!

Joe

Agrees with Joe wholeheartedly.  And I'll add this, there isn't a sanctimonius bone in Jerry's body (nor Marc's for that matter).

Lettucehead,

That is my point exactly!

Jerry