Sorry if this is aready reported. The URL to Michigan Head/Pain & Neurological Institute ad the end of the letter is dead.

The new URL is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Thats what I call in a nut shell.




Dave

Hmmm, I see there are those who have considered the very thing I had to deal with. That is your personal responsibility to your employer. I came here a few days ago after being mis-informed about CH. I was told there is absolutely nothing that can be done to control the situation. I was in a panic...absolutely. After I got educated by some helpful members, I know it will be no problem to save my job.
  Everyone thinks differently and has a different job and ability to work around this at work. My deal was that I have a responsibility to my fellow workers and company to run my crew as efficiently as before and safely. Any decent company who values you as a good and profit-making employee should be able to work with you on it. I was torn as to how to approach my employer with this. Please don't think I am bragging, I promise you I am not. But I'm very good at what I do. My employer has come to expect my very best every day. I try my level best to provide them with my best work possible. I work with a great bunch of guys and we rely on each other as a team to work profitably and safely. When you use a crane or lifting device to lift tons of metal, you must have a clear head and look out for your partners. It ain't brain surgery, but you can kill someone if you make a mistake. To me, the important part was to let my employer know that I can control this condition where I can function likely as good as before. I admittedly know very little about CH or medical stuff. After the helpful people here clued me in, I am convinced I can do this. My employer wouldn't be afraid about the "suicidal" comment cause they know I'll never snap on other work partners or do anything rash to jeopardize the safety of others. My buddy at work has cancer and he does like me, never lets others suffer because of him. It is just what you must do because others have a right to be safe & work with someone who has  it together.
I don't have to tell you how confusing it is at first when you think you will be compromised at work. But the people here are assuring me that it is something that can be controlled well enough to not be a deal-breaker so to speak.
The suicide thing may frighten other employers tho. These days with people becoming angry at work and harming others, it is a big deal. Our safety meetings actually cover workplace violence etc. It's just something the individual would have to ponder when alerting the employer.
But it's a great letter. I have gone over most of this with my employer, but will likely present them with the letter to give them a better understanding of how things work.
  Thanks for the info. fellow members.
Cheers, Dave

Unbelievable. I was literally crying as I read this letter. Thank you so much for putting into words what I've been going through most of my life. I try to act so happy and uneffected by this every day to spare my wife. She sees me daily and sees the pain whether I hide it or not... but it's easy to joke off the level of severity. I think I may send this to her and maybe a couple others.

I'm hesitant only because there's kind of an unspoken understanding that she knows I'm in pain, but it's comforting to her/us that I'm not in THAT much pain. I am, though, and hopefully this letter will give her better insight for all the things I try to protect her from.

I've been to specialists in many places, and many have tried to treat it as migraine and find a quick fix... but that's always short-lived and treatment comes back to CH, however unsuccessful.

It's definitely something you live with and get through it. When people say, like in your letter, "Oh, my aunt has them and she needs to lay down for the entire day in the dark"... I'm thinking... try doing that for 9 months! and do it without sleeping because you're writhing around in pain!

But, of course, you smile and nod because they have good intentions. I would never seriously consider killing myself... not even close... but "in the moment" that's a frequent thought, only b/c there is no answer in the distance, and life surely wasn't meant to be lived like that... but eventually you come back to normalcy and find a little moment of clarity.

Being so bad, for so long, just teaches you to appreciate the good times that much more... you have to stay positive!

I worked a week shy of 12 months for a major cable company in the area. I received top sales awards every month I was there, literally. I was their top performer, team lead and trainer... received employee of the month and employ of the quarter for the entire region. On the technicality of attendance, I could no longer work for them despite my direct bosses wanting to keep me. It was an HR issue. I had no idea about this letter. Since then, I lost a sales job and was literally told, "Everybody LOVES the work you've done the past few months, but we need you to not come in on Monday, get your health in check, and then come back to the company and reapply. We would love to have you back when you get this figured out." I couldn't believe it.

I fear more and more for my marriage every day as she is 1,000 time supportive, but I fear is at the point where her family is saying "see, I told you he'll always be sick"... and I don't want that to win her over. I need to find a way to hold a job, and hopefully this letter helps going forward. Right now, I'm lost and clueless, and just dumbfounded that exceptions can't be made for top job performers.

Thanks again for this letter!

littlefoot wrote on Sep 7^th, 2007 at 2:26pm:


I hadn't thought about this... wouldn't I need to be registered somewhere as Disabled? The only time I've ever been registered as Disabled was in college, and that was with the University, not the government...

I remember thinking it was awfully fishy that JUST before my 12 months, when they told me the FLMA would kick in and nobody would have to worry about anything anymore... it ended. Very frustrating.

I have a friend whose interested in that kind of law... I will ask him what he thinks and go from there Hadn't crossed my mind but I'm curious now if there's even a case for it. May be good to know going into the next employer.

What a great letter. Thank you so much for your effort. I have already forwarded it to many friends and loved ones

I wish I had this letter when I was working.  It was so hard to explain to my boss and everyone else that if I got up and walked out on a meeting it was because of my CH.  Looking back, I don't know how I made it through my cycles with the headaches and heavy drugs.  Now that I am retired, I guess I can just pace my house and yard.  I printed a copy of the letter for my wife.

Quote:

no but they can fire you for other stupid shit. i took a previous employer to court and won. i was eating cheese and crackers by candlelight three months later but he didn't one over on me. and i worked for this mans father for four years. i guess my headaches were inconvenient for him. thats ok though. now i'm doing something thats way more enjoyable..... and i get cruise around and meet some of you guys.  ;) 


                                                                                johnny

I love that letter and used it at the last place I worked and at my current job.  Initially I was using O2 in an HR office but that had its drawbacks.  So after deciding to use O2 in my office I wrote this to the folks that work in cubes right around me.  The response I got was 100% supportive.

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I’m writing to let you know about something that I’ve been dealing with for a long time – 12 years to be exact.  Cluster Headaches are a rare and very painful neurological condition.  Attacks come in clusters (hence the name) and for me they occur twice a year in cycles that last anywhere from 8 to 12 weeks.  They visit me in late winter and again in late summer.  While most of my attacks come at night I do get them during the day when my cycle is peaking. 

During an attack I experience a searing, burning pain that centers behind my right eye.  When an attack comes on, it does so quickly without more than a few minutes warning.  During an attack it is impossible for me to communicate coherently with anyone.  I’ll be ok.  There is nothing you can do to help.  Just leave me to deal with it and you’ll hear the sound of my keyboard again in no time.

The best form of treatment for aborting a Cluster Headache is Oxygen therapy and energy drinks.  It usually takes one or two treatments of 15 minutes each to abort the attack.  When that fails I have Imitrex Injections to fall back on.  I much prefer the Oxygen as it has far fewer side effects.  Last cycle (August - November) I kept an Oxygen tank down in HR and would use it there in a spare office.  However there were a couple of problems with this strategy.  1) HR isn’t open early in the morning or after hours and on more than one occasion I was locked out when I needed to get in. 2) Delaying treatment while I fetch my backpack and make the walk down there also makes my pain worse and last longer.

So this cycle, with your understanding and acceptance, I would like to begin using Oxygen here in my office.  I’ll keep the tank in a file cabinet and will only need to drag it out when an attack comes on.  I didn’t want to begin using it without giving my you a heads up on what I’m doing and why.  So don’t be surprised if you hear the sound of Darth Vader or the clanking of my cylinder and regulator as I piece the rig together.  I promise to be as quiet as possible.

Please feel free to come by and ask any questions you may still have.  Also, you can read more about this condition at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

-Dennis-

C19M82S wrote on Feb 14^th, 2008 at 7:57pm:


i remember going up to Michigan with two other guys to do a tile job. it was a screaming ride. when i was working and physical, the beast stayed away. when we went back to the motel room is when i got hit. the crew leader made me get my own room and my boss through a fit. all these guys had seen me during a peek attack. it's not like they didn't believe me, i was a nuisance. this is same company that fired me and i took to court. if your coworkers can't except your condition, you have done everything you can to explain it to them. beyond that worry about yourself. be selfish. after all it's your head and you are the one in extreme pain and you have enough to worry about.
i tried really hard not to cuss. this ex employer is a sore subject with me.

Having problem Downloading , Can someone send it  to me email? tnpruby@aol.com

This is the most valuable piece of information I can give to my friends and family about CH.

Thank you Simon for writing such a winner.  And thanks Eric for posting this amazing gift.  You guys ROCK 

angela