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Cluster Headache Help and Support >> Cluster Headache Specific >> Has anyone ever lost a job because of a cluster pe
(Message started by: Rockcoat on Apr 1st, 2007, 10:26am)

Title: Has anyone ever lost a job because of a cluster pe
Post by Rockcoat on Apr 1st, 2007, 10:26am
I have not had this happen to me but I am getting very worried. Co-workers especially do not understand after they have to pick up your slack for more than a few days because you have "headaches"
Headaches to most people are not a reason to miss any work let alone a few weeks worth. They act all concerned to your face but really I can tell they don't really get it. This is adding to my stress level since I am the sole income for our family of 5. I am so down right now I can't snap out of it. (Suicide headaches indeed)

Title: Re: Has anyone ever lost a job because of a cluste
Post by Yorky on Apr 1st, 2007, 10:33am
come on rockcoat.
try not to stress yourself (makes the beast mad, he seems to find it easier to access your head)
as for your job....you can only cope to the best of your abbilities. just try your best buddy.
good luck.

Title: Re: Has anyone ever lost a job because of a cluste
Post by Redd on Apr 1st, 2007, 12:21pm
Although they didn't say it outright, I'm sure I was let go from my old job, at least in part, due to going back into high cycle. That was a year ago this month.  I had the unfortunate humilliation to have no where to pace and scream but right in front of all my co-workers, as well as clear glass walls that separated our office space from the halway and the offices across the hall which were also glass walled.  Open view for everyone to witness, every day at precisly 1:10 PM for 4 days... and then the hits switched clockwork and came at 4PM instead for another week before I could get them under control.  

I don't think it happens very often, at least not to where the company is willing to admit it's due to CH or it's resulting life effects.  

Title: Re: Has anyone ever lost a job because of a cluste
Post by pieface_49 on Apr 1st, 2007, 2:03pm
A letter to employers. I would use caution and read it closely.
http://www.ouch-us.org/chgeneral/dealwithemp.htm

A letter to colleagues:
http://www.ouch-us.org/chgeneral/colleagueletter.htm

Disability resources, this does not necessitate being disabled in the governmental sense.
http://www.ouch-us.org/chgeneral/disability.htm

Title: Re: Has anyone ever lost a job because of a cluste
Post by Rockcoat on Apr 1st, 2007, 8:08pm
Thanks all, I know they can't come right out and fire me because I have a legit medical condition but there are always those work arounds such as the good old "company restructure" or the standby "downsizing"
Yorky thanks for the encouragement I'm really trying to relax about this but I have a management level position and it's a real bitch when I'm not around. I have worked maybe 4 hrs in the past 2 weeks I'm out of sick time and on top of it all my house caught on fire last Sunday and I'm dealing with that BS (March 2007 has sucked bad for me)  I could really use a few drinks but OH Wait those are instant triggers for me.

Title: Re: Has anyone ever lost a job because of a cluste
Post by JohnM on Apr 2nd, 2007, 9:37am
Hi Rockcoat

I understand your desperation. Do you have an abortive that works? Lots of people here use oxygen to abort, but for me it never seemed like a real option for use at work what with tanks and masks and all.

For me what works every time is the Imitrex/Imigran imjection. You just go to the toilet as soon as the pain starts and you feel it is going to be a big one, inject in the thigh with the injector pen which is easy and painless to use. Wait 10 minutes and the pain is gone and you can get back to work with no one the wiser of your problem. If you have not tried it then it is worth a go. Expensive, but worth the cost if you feel your job is at risk.

Dont bother with the Imitrex pills or nasal sprays, they take far too long to work.

Good luck
John

Title: Re: Has anyone ever lost a job because of a cluste
Post by Sandy_C on Apr 2nd, 2007, 12:27pm
First question...are you episodic or chronic?  

How many hits per day to you experience, and how long do they last?

Do you have anything as an fast acting abortive?  Imitrex injections - not tabs or spray - has had great results with many sufferers.  

Do youhave 02?  Get a small tank, with non-rebreather mask and regulator that can go to 15 lpm, and keep it in your desk or office area.  Many, including me, can knock a hit out within 5 minutes.  

If you have a good abortive, you can knock a hit out within just a few minutes.  If this is successful, you should be able to take care of business, and get back to work in a very short time.  No more need for only 4 hours of work in a two week period.

As for bosses and co-workers, especially those that have to cover for you, print out the links that  pieface gave you, take them in and share with everyone who is impacted by your inability to perform your job during a hit.  

When all else fails, let them see you get hit.  I know, none of us want to expose ourselves to anyone else when we are completely incapable.  But, it brings the point home to others what you are suffering.  I had to finally allow my boss to see a hit in order to get him to understand.  It worked.

And, finally, when your co-workers are covering for you, make sure that you cover for them at every opportunity  If they need to take a day off, you take care of their work, as well as your own.  Come in early...stay late...work through lunch.  Make sure that you don't just tell them thanks, make sure you show them how much you appreciate their help by picking up the slack for them when they need it.

CH is part of your life.  You either have to learn to live with it and control it, or it will control you.  Life is to be lived between hits.  Life does not stop.  Hang in there and become proactive, rather than reactive.

Good luck

Sandy




Title: Re: Has anyone ever lost a job because of a cluste
Post by Rockcoat on Apr 2nd, 2007, 8:22pm
John, Sandy and all-
Let me fist say thank you for all the feedback this board is an amazing resource.I felt so alone since I have never met anyone else that has this curse.
I am new to this board but I am not new to the affliction. My first hit and subsequent diagnosis was in 1986, I have been blessed over the years with some long periods of remission, in some cases years. I have also been lucky that some episodes have been short, actually ending before I even got into see the Doc.(This hasn't always been the case) I also have had episodes over the years that have lasted weeks at a time stopped for a month or so and began again for weeks more, this is when I've been through some of the treatments suggested here. In response to some questions:

First question...are you episodic or chronic? [/i]
I am episodic, so far, thank god, I don't know how the poor chronics can keep going.

How many hits per day to you experience, and how long do they last?[i]

Currently I'm at an average of 4-5 per day with 2 additional at night. I also go days with a shadow hanging in the background.(Percosets seem to keep the shadow low enough to cope between full hits) My hits vary in length from 15-30 min up to 1 hr, occasionally longer than an hour  but not often. Those long ones are the "Kip 10s" in my book.

Do you have anything as an fast acting abortive?[/i]
Yes, I currently am armed with Imitrex injections. I have had varied success with it too but it is way better than nothing. It is tough when you can only use it twice a day. I try to save one for the night so I can get some sleep so I then have to be selective during the day which hit I'm going to use the "big gun" on.

Do you have 02? [i]

I have tried o2 in the past and it has not helped me. I have an appointment for Wed. to get a script for a bottle to give it another try though. I have already ordered a cluster mask (Thanks Chuck) so I will be armed with it too. The o2 feedback on here is great, I may have not been using it as effectively in the past as I could have so I'm going to try again.
As for preventatives, I have not found one yet. It's been several years  so I can't remember all the names (one gave me incredibly vivid nightmares) tried verapamil and several "beta blockers" the blockers are a waste of time for me.
This is not to say that I would not try any of these again because right now I'll take nightmares or almost anything else to kill this cycle.
So I do have some bullets in the gun when the beast arrives, I will keep fighting. Oh and I've got some shrooms on the way.

Title: Re: Has anyone ever lost a job because of a cluste
Post by Redd on Apr 2nd, 2007, 8:49pm
First things first...get the vials of imitrex rather than the auto inject.  Get syringes too.   You can break each vial into 2-3 doses and have the same effect, allowing you to abort more hits in 24 hours with the same amount of medication.

If you haven't tried it already, at the first twinge that a hit is going to start ramping up, slam a Red Bull or genaric equivalent.  And yes slam it as fast as you can. For may of us it will keep the hit from ramping up to full blown and abort it fast.  

For many people 6-12mg of melatonin will help stave off the night hits.  Some of us found adding 50mg of Benadryl (or genaric) along with the melatonin worked better to help prevent the REM phase of sleep and thus fewer night hits.

Good luck.

Title: Re: Has anyone ever lost a job because of a cluste
Post by Rockcoat on Apr 2nd, 2007, 9:36pm
Is melatonin OTC?

Title: Re: Has anyone ever lost a job because of a cluste
Post by BMoneeTheMoneeMan on Apr 2nd, 2007, 9:38pm

on 04/02/07 at 21:36:23, Rockcoat wrote:
Is melatonin OTC?


Sure is.  
And the generic Benadryl I use has a really thoughtful name.  Its called ALLERGY.

Diphenhydramine is the main ingredient, which is also in Tylonol PM.

PF wishes


Edited to say :OTC in the USA, not in the UK, or maybe England.



Title: Re: Has anyone ever lost a job because of a cluste
Post by clusterwife on Apr 11th, 2007, 9:39pm
In this time there are laws protecting people with disabilities.  I believe to suffer with these headaches and to work, your boss would be willing to be understanding.  Print out a few pages of posts for him to read, that's what my hubby did.  He takes his o2 with him daily, so they know firsthand.  Be honest with your employer, and I hope all goes well for you!  Leah.

Title: Re: Has anyone ever lost a job because of a cluste
Post by love2bamommy on Apr 21st, 2007, 10:47am
Right after i told my boss about the fact that i was starting to have ch..I was sent home..and then told that they were calling a meeting about the ch..and then it changed to, "we are reviewing your file" then i was put on suspension..

So i can say, i am in the process of loosing my job because of something i can't control..and my lawyer is so on to this.

Title: Re: Has anyone ever lost a job because of a cluste
Post by Rockcoat on Apr 22nd, 2007, 1:29pm
Sorry to hear that, love2bamommy, but as so many have reminded me over the past few weeks, if they fire you for an illness that you can't control then they are the biggest pieces of sh*t on the planet and don't deserve your services anyway. Why would you want to help people like that succeed in the first place? I have come to peace with all this since I began this post. Hang in there, this too shall pass.

Title: Re: Has anyone ever lost a job because of a cluste
Post by pieface_49 on Apr 22nd, 2007, 1:47pm
Nice to see you back Rockcoat!  Even nicer to hear are doing better.  I swear "This too shall pass!" needs to be tattooed onto my forehead ;)

Donnie

Title: Re: Has anyone ever lost a job because of a cluste
Post by Bond007 on Apr 25th, 2007, 9:01am
They didn't say it outright, but I was fired almost 4 weeks ago because of my chronic condition.  It hasn't been pretty since, let me tell you.

Title: Re: Has anyone ever lost a job because of a cluste
Post by swimchica623 on Apr 25th, 2007, 10:04am
I'm almost 22 so I'm in a different position.  Right now being a studnet is my main "job" and I work as a swim coach in the summer.  Last summer was bad and I was not correctly diagnosedd and I would miss practice out of confusion, I'd get hit a lot at night and before morning pratice and not go in because I thought it would happen then, but rarely get hit during that time actually.  I had some issues with the head coach...she would say she understood but then when I would come in later, feeling really worn and awful, have me do extra responsibilites and extra work to "make up" for the time I had missed and not do very much herself.  I still felt awful, dizzy from the medicines, totally worn out.  I missed a lot of time that summer anyway and actually in the long run worked as much or more than the other coaches because of the extra work I got when I was there, and ended up coaching some meets on my own, as a way to "make up" for the time I missed.  It was pretty unfair.  
Anyway, I got asked back this summer, I have been coaching for a long time there, and there were some concerns with the president of the team that I would be out a lot again.  I included a letter that said I was improperly diagnosed last summer and not being treated correctly, but now I had the right diagnosis and right treatment. The good thing is that practice is in the morning, a time of the day I don't really get hits.  The bad thing is after a night of hits it can be hard to pull myself out of bed at 5AM!  But knowing I can crawl back in bed at 11 can be quite the incentive.....
So....thats my story I guess.  With classes, my main "work" right now, its been a struggle but people are undrestanding.  Like coaching, I make it work for myself.  I have a job and a "job" (ie school) that work for me.  My ultimate carrer goal, being a professor, should work too.  I can schedule classes in the morning, when I don't get hits.
If you are worried, I would suggest getting a job that is more compatable.  With me it seems that shorter hours with breaks, flexibility, and caring, educated people is key.  I suppose the good thing about getting this at my age is I can always keep it at the back of my mind as i make my decisions, but so far it actualyhasn't impacted them.  
Oh and the other BIG factor about not missing work and school and just getting throough the day after a bad night is coming here for support....don't know if I could do it without the people here...... ::)
Lisa

Title: Re: Has anyone ever lost a job because of a cluste
Post by Tom_db on May 7th, 2007, 1:39am
I haven't been fired but people don't seem to get the condition... everyone is understanding at first but it doesn't always last... I have a bad habit of feeling guilty for being a burden on my work mates friends and family... my attacks come once a year at exactly the same time for two months, so i've started to save money before my cycles so I take a two month holiday each year...

Hang in there.



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