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.

Hi teajay. It took a long time but my son finally got both SS and Medicare. We had to get a lawyer. His fees came out of the retroactive payments so there was no money out of pocket. Ron

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

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.

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 was on social security for a while.  If you're capable of doing any job at all (even folding hotel laundry) you won't qualify.

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,

With all due respect and care, and I really do or I would not be responding to this, you have a much bigger issue than CH to deal with.  If you are popping hydrocodone for CH you are only putting yourself in for much more misery than Ch can ever cause.  I understand the pain.  I've dealt with CH for over 33 years now, over 8 of them chronic.  I was also prescribed opiods and narcs for them initially, and the struggle to get off of them was worse than the pain I was trying to handle.  Not to mention it takes longer for the drug to get in your system than a hit usually lasts, although I did have some that lasted for longer periods of time.  I firmly believe the opiods actually caused the hit to linger longer, and I still hurt, just didn't care all that much.  I couldn't deal with it.

PLEASE get O2, at least 25lpm, and get off the candy.  We really want to keep you around with us.

Jerry

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.

I'm with Marc 100 per cent.  I'm not quitting till they carry me out feet first, unless I quit cause I want to.  I'm not letting something as controllable as CH stop me.  Sure it hurts.  So?  Suck it up and go on. 

Back in the 60's a friend of my father's got his arm caught in a corn picker.  There was no one within several miles of him, so he took his knife out of his pocket and finished amputating his arm, put his belt on his arm for a tourniquet, and drove himself to the hospital.  All this without any painkillers at all.  Two years later he won the skeet shooting contest at the IL State Fair.  I decided when I went hunting with him that if he could keep on going after that I'd never let anything stop me.  You don't have to either.  It is simply a choice.

Jerry

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

I'm with  I'm not letting something as controllable as CH stop me.  Sure it hurts.  So?  Suck it up and go on.  ... It is simply a choice. Jerry

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.

Katherinecm wrote on Sep 2^nd, 2010 at 5:02pm:

Callico wrote on Sep 2nd, 2010 at 12:09am: I'm with  I'm not letting something as controllable as CH stop me.  Sure it hurts.  So?  Suck it up and go on.  ... It is simply a choice. Jerry 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.

Good post, Katherine

I have to agree.  And, the issue is not just for chronics.

I went on disability through my work last year for a couple of months.  Just couldn't get control of the CH.  I was 'only' getting hit 3x per day, but they were 2-3 hour hits at a time.  Once I got to high cycle, even tripans and o2 was only minimally successful.  KIP 8-9 pretty much every time.

Slept only about 3 hours per night for weeks at a time and even that was interrupted sleep with hits and then constant shadows.  With the shadows, the pain never stopped. 

Worst cycle I've ever had.  1st time I've had to stop working because of them.  It was absolute hell and I was a mess.  (Terrible last cycle was one of the reasons I was such a basket case when I first joined this board - I was terrified at perhaps having to go through that again or even worse as I couldn't take so many meds because of the pregnancy...)

I have a job that requires that I be on my top game pretty much all the time.  I make a mistake or even simply not be at my best, and other people can get hurt.  My awful fear is that my medical condition could cause other people to suffer. 

I will NOT EVER let my ego issues about 'sucking it up' ever put another person in danger...

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

1st Teajay:
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 Katherinecm:
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.

Quote:

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.

I agree, Ginger. But I also think Katherine was responding to an idea we've seen or heard over the years: the solution to CHs is to think you're way out. Mind over matter, that kind of thing. I don't think that's what was meant but I can see how it might sound so. Our responses to the post on positive attitude are an example of how consistently we reply when someone says, all ya gotta do is not want them and poof! They're gone. Ain't so. But yes, we are tough and resilient or we wouldn't still be here. Reminding others of this helps them get through the worst times. It's why we're here. Blessings! lance

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  ;D

Good post Lance!

Nice post Katherine, I admire someone who can passionatley disagree with someone else, and keep it civil and matter of fact.

This can at times be a rough sounding place. Understand that most people here are very passionate about HOW they handle their CH. Their posts lack the presence of the real person, so you are denied the love, caring, and desire to help, you would see in their faces and body language, and are left with the cold sterile post. If you ever get a chance, attend a meet and greet or convention. Once you've met a lot of these people in person, you'll have a dramatically different take on their posts.

Hang in there, no fun being in a bad cycle. :'(

Joe

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

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!! [smiley=heart.gif] [smiley=hug.gif]  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

Joe,

You make me blush. :-[

I know sometimes our posts are easily misconstrued because we are trying to get across in cold dead symbols what we want to say in a living breathing manner.  We also are constrained by time and space, so I always try to consider what was meant.  I appreciate the way Katherine responded, as well as Lettucehead.  Very often when a post is misunderstood, or not fully understood, one can jump to a conclusion and attack back without finding out what was truly meant.  I did not sense that here, and I appreciate it.

Jerry

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).

Marc wrote on Sep 2^nd, 2010 at 9:23pm:

Yes of course certain physical/medical conditions preclude performing certain functions. Sometimes job/career changes are in order. Yes, I have experience. Try walking off the stage leaving 300 people sitting there who paid to hear you speak. Then do it again a month later. That's why I don't make $160K anymore. After many years of uncontrollable chronic CH's I have not lost my will to fight it and stay productive so I keep working. Yes I go down and I go down hard - really hard. Had to dump a 30 year career with a nationwide reputation in my industry....... but I'm not going to take it laying down. Yes of course YMMV, so the way I think may not be right for others. We all deal with this in our own way. Respectfully, Marc

God bless, Marc. 
I admire your resilience!

As for me, I've only ever had to take short-term disability for a couple months last fall due to CH.

Unfortunately, I also have an autoimmune disease and this, even more than the CH, has contributed to my current work schedule of only half time. 

I do struggle with my anger at my body at 'failing' me.  I get depressed that I can't do the things that I want to do because of my conditions.  I want to work more.  I want to support my family the way I see others in my position do.  But I can't.  And that hurts.

But, no, I will never give up.  I will never stop struggling to do what I can.  Teajay, I do want to encourage you to not give up.  Don't relinquish your dreams to this condition.  If you need a break to regroup and heal, hey, that's fine - more than fine - you need to take care of yourself.  But, please, afterwords, live your life - it's the only one you have...

Lettucehead,

That is my point exactly!

Jerry

I have to agree with Marc. I know working and struggling is impossible for some, but for many of us, I think it is beneficial to work even if we struggle at the capacity we are able.

With many of us, isolating ourselves during cluster cycles is a major issue. If we keep working, even if it is tremendously difficult, I believe it has a positive psychological impact for many. It keeps us out and active and gives us something else to focus on besides when the next hit will come. Remember, I didn't say this was for everybody.

This works for me though. I first developed cluster headaches early on during university. I continued to go to school and complete my degree taking 18+ credit hours each semester and working 20+ hours a week while I was getting as many as 8 hits a day. I struggled terribly, but I managed to graduate Summa Cum Laude in 4 years with the help of medication and plenty of caffeine. I hid my headaches until my very last semester from everyone. After I came out about my headaches to my professors (and boss) this made things easier. They understood and allowed me extra time that I needed to get things done on occasion, especially when I was doing 3 days of DHE infusions. This is where the letter describing cluster headache from OUCH is particularly useful.

Now I am a teacher, which is a very high stress job. I have to constantly be "on" or else children could suffer. I would never give this up for the world, regardless of how difficult it is for me. It shows me how strong I truly am and gives me something to be psychologically positive about. I know this isn't for everyone but would encourage those who feel it might help to give it a try before attempting SS or disability, though there is no shame in getting it should you completely need it.