I keep reading here about "how do I handle work and CH?"

Well, I'm an accountant and I very seldom miss any work (unless I'm playing and that don't count).

I'm also a chronic CHer and get hit regularly (daily). YOU can cope! My work is demanding and detail orientated and I've been coping for years.

How do you explain your condition? Very simply.  Example: Tomorrow I have an IRS audit at a client's office. I've spent days getting ready for it. The weather has suddenly changed and my head doesn't do well with weather changes, SO, I'm showing up at the audit with my O2 in the car and I will explain to the nice auditor that I have a chronic condition and if I get hit, I WILL leave without notice and go to the car to get rid of my headache and THEN when it's gone we will continue OUR business.

I've been hit during several audits and only once had my O2 handy and it was a fiasco a couple of times, but the IRS got a quick course in CH (not one they wanted repeated  :)).

One thing - I NEVER apologize for my condition - I cannot HELP it - I did not ask to have CH and I can't do a damn thing about it - it HURTS, but it happens. You just have to build up enough "self-confidence" to overcome the "ashamed" feeling that you're not perfect. You have a medical condition that you cannot help and other people do not understand and that's just a fact.

I know, you're saying, "That's easy for you to say!" No, it's not... it took a while to build up a tolerance to not giving a damn about what other people think.

On this website there are "letters to employer" detailing out what's wrong with you and what you need. Use the tools that are available.

We all tend to want to be alone when we get hit and that's fine, but if we do get hit in a crowd, deal with it.

Lordy, I got hit in the middle of O'Hare airport and survived. (Some of the people in that airport don't ever want to see me again, but....)

If this sounds like I"m not being supportive - that's not it at all. I KNOW how you feel, especially if you're new to CH - you're scared, you're ashamed, and no one understands. Been there - got the t-shirt. But most of the old-timers here have learned to cope with our ailment and are here to help show you this isn't the end of the world. We just have a disease that we have to learn to live with.

The best way to deal with our disease is to learn everything you can about it - what works for YOU, get a good doc you can work with and then learn to cope. Your attitude is the best DEFENSE you have - USE it.

Hugs BD :-*

Nicely said.  I have a demanding job as the Senior VP of Sales for a national marketing company and, even though I'm episodic, I have had to deal with getting hit in all sorts of situations:  in front of clients, during a presentation, while traveling (I got a kip 8 once at O'Hare...must be the fumes!).  The point is I don't let this disorder/disease/defect control me.  I have let pertinent coworkers know about my little affliction and, to a person, they have been supportive. 

My $0.02 and that's about what it's worth.

Barb, I love you  8-)

-Dennis-

Applaud, amazing Barb!

I've gotten hit many times without a weapon and explained to my co-workers what happened and they understand as well as my boss.  That letter helped a ton.
Going out to my car to fight it off is the way I have done it for years.  Then I come back to work and pick up where I left off.  I'm only episodic so I have no room to brag, but even with this disease my attendance has been perfect for 6 straight years.

I have my o2 tank and mask with me and just close my door a little. I am new to all this still, but I have to work and I have to take care of myself, so both will work together:) I have a great support here at work, I work in a government hospital so they understand. I have not mentioned CH, because that is new. I have occipitical migraines and CH. Still learning the differences. About ready for some o2 now..... :o

great post. i have suffered for 20 years with ch. i will never let ch stop me from living a normal life. i have my o2 here at work and if i get hit i close my door and breathe deep for 15 minutes. a nice break in my day actually. i always wish there was a better name than cluster headaches. what we experience is not an ache. its like cluster headintensef'ing pain. ha.

i will never give up the fight against my ch. its a constant and evolving battle, but i will never let it stop me from doing all the things i want to in life.

Excellent Post Barb ! 

I work full time with lots of OT the last few months, seems to go that way for the last half of the year where I work.  10 Hour days are not uncommon.  I too am chronic CH and luckily have a very understanding group of people to work with.  I do get told frequently "I don't know how you do it!"  Well it's just like any other obstacle, you put one foot in front of the other and just keep on going. 

Again Kudos on the post, very nicely done.

Hey tough girl...thats great.   I feel the same way.
    but I didn't always.   Took some time to get in that zone. 
   Some newbies might not feel that empowered yet, at least till they figure out that they can control it.
   Hope it gives em some hope though.

Quote:

Lordy, I got hit in the middle of O'Hare airport and survived

Now that could get on the "No Fly List" pretty darn quick.

I have one simple rule:

I will never let this condition define who I am.

What a great post! If there was a "clusterspeak" hall of fame...that'd be in it....

AND....I want one of them "t-shirts"... 8-)

Hugs back dear...hugs back [smiley=hug.gif]

Best,

Jon

Shaggy concurs, nice work Barb.

I am episodic and have gone out of my way to let people know about my clusters.  I was undiagnosed for so long that if I can help anyone get a proper diagnosis and proper treatment it is worth the hours of explanations.  One of my friend's coworkers has them too and I turned him onto this website.  So much pain for so long, if I had known about oxygen and the alternatives 20 years ago a lot of my life would have been different.

So I go out of my way to let people know.  If we all did I bet we would find a lot more of us. 

I also respect the 'job sensitivity' issues as I used to have a job where CH's wouldn't be acceptable (fortunately I was undiagnosed and confused about the headaches) so just dealt with them.

Thanks for the great post!

--Shaggy 

I suffered from CH abou 10 yrs before I was diagnosed. Well we think.  I have migraines and CH so it's hard to pinpoint the exact moment I 1st had one.  I remember sleeping in my closet a few weeks at a time when I was younger, anything to get away from noises and suffer in quiet.  but I rarely missed any time from work.  Only time I really have missed is for appts to the Neuro or right before I was diagnosed I had to be taken to the ER from work but that is it really.  I still go to work every day after a bad night, maybe a little coverup on my face to hid the circles under my eyes from lack of sleep but no one would know.
my work now is great, any time I need to get my current cycle under control is given, they understand my O2 tank and have read the employer letter.  It helps that I work for a health insurance company and my boss was an ER nurse years ago.  But it tooks me years to even feel comfortable taking the portable tank with me, now I don't care.  It's easier than missing work-I just got hide in a conference room for a bit and come back good as new.

[smiley=headbanger.gif] fukineh!

This is great!  Thanks, Barbara.  My husband's a relatively new sufferer, and only at night until he recently got one while he was at work.  He's devastated, and has felt that he can't possibly work like this (he lectures twice a week).  I'm going to print this out for him.

One of the best pieces of advice on this website.

Thank you Barb, I needed that.

Don

I agree and have stated that many times, here!  It has never entered my mind to describe myself as a cluster headache sufferer to anyone.  As I have said before, it is way down on the list of important characteristics about me.  It is not because it is easy...I am just determined, I guess.  I also had the luxury of growing up around family members with them that never missed a beat in their lives or let it define them in any way.  Good modeling.  Of course, in the middle part of my cycle...I hate it!!!!!!!!!!!!!!!