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Hejada

Employed/Unemployed Clusterheads

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For all you employed Clusterheads out there,

Just wondered, how do you fit in your jobs with your bouts of headaches? I work full time and thankfully my employer (Toyota GB) is incredibly understanding.

If you are happy to share, where do you work? Also, what benefits do the government give you in your respective countries? (Disability etc)

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There is no reason to fit in the bouts of headaches, they can be wiped out pretty quickly. The right preventive (LSA, for me) and the right abortive (energy shots for me, O2 for many) and the beast is about as harmless as a seasonal allergy.

And I'm fairly confident that my job is a bit more intense than most.    :)

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Ditto what the good Lieutenant says. Fungus prevents them for a good number of months at a time, and when I get the reminder that it's time to take a preventative dose (ramped up shadows and small, short-lived, low intensity hits), energy drinks and O2 for 5 minutes dispatch them nicely.

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Just wondered, how do you fit in your jobs with your bouts of headaches? I work full time and thankfully my employer (Toyota GB) is incredibly understanding.

used to work full time, imitrex was my life line along with dexamethasone, prednisone when it worked, according to my employer, my headaches werent an excuse for anything and because of my medical condition moving up in the company wasnt possible due to dependability. even though my attendance was never a problem and i managed to use all my personal time and vacation time when my headaches were debilitating. yea ch was my vacation from work  >:(

basically found my self in a circle of hell by trying to stay at work to keep health insurance to keep headaches away or at least manageable .

now on SSD, (social security disability US government) i get basically a minimum wage check with no eligibility for medicare, yet. good thing i still live with my parents or i'd be in a cardboard box... or a pine box.

i was also on state disability for six months before SSD, that was such a joke, i was making close to 400 a week at my job, with health ins paid. then started getting 165 a week and took on health ins and all my other bills out of pocket.

im not disabled from CH alone, i did manage to work full time for 7 years with the beast when western medicine helped, but it got to the point i was on so much and so many meds that if i continued to take them , i guarantee i would have died. i contracted AVN in both hips from steroids and eventually will need bilateral hip replacement.... when i can save enough money for the copay and hospital stay that is.

i played the game and lost, but CB gave me a "1up" (mario reference ;) )

didnt find CB until i ran out of options. wish i knew now what i didnt know then...

AO

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Hi Hejada,

I work in the aerospace industry building weather satellites.  I have had CH since I was 28.  It started a few years after I started working here.  Fortunatley, the Beast likes to visit me at night, if I get hit once a night, I am usually ok to function at work.  Here recently, with the 5 day detox, things are getting challenging with two sometimes three hits a night.

I have a wife of 26 years who is disabled, and two adult children in college.  I don't feel as I have any other choice but to carry on.  they depend on me.  when things get really bad, I try to take a day off of work to recover, but here at the end of the year, I don't have any vacation days left.  So I carry on and do my best.  It sucks, but there you have it.

I'm certain that my job is not nearly as intense as Lt2, but working on a scientific instrument that costs as much as $50,000,000 isn't exactly a walk in the park.  One other thing, I noticed that the more stressed I am under at work, the tamer the beast is during the day.  Plus I drink coffee ALL day.

Fortunately, I rarely get hit at work.  If I do I usually have a couple of Imitrex nasal sparys on hand

I have been fortunate to have a great boss that is very understanding.

One thing I would suggest is to go to the CH.com board and get the "letter to employers" that E-double wrote.  It offers a good explanation of CH for the uninformed.

Keep your chin up Hejada, keep your shoulders square and keep moving forward.  This stuffs sucks, I know it sucks, you know it sucks, we all know it sucks.  But it can be managed.  It can be beaten.  I successfully busted a few years ago and was in remission until the fall of last year.  I went chronic this year.  But so many peolple have it worse off than we do.  There a little kids that have this.

So know that you are not alone, that has been the greatest blessing for me just knowing that I am not alone in this....

Take care,

John

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It's like a gift from God when you've got an understanding employer relationship going for you. 

I've been employed by the same gentlemen whose primary interest is in patent research & development.  He's been more than accommodating throughout my career with him, including up to 4 months off, paid!

To say I've appreciated this is an understatement.

When I turned chronic in 08, I moved my office home and lessened my workload by half.  I'm just now beginning to feel the urge to resurface in my career. 

There are indeed some very kind folks on this earth and I'm thankful for you to be working for one of them...may this continue until "busting" is successful for you.

ps One thing that I know helped me was the fact that an associate was friendly with the former Surgeon General, C. Everett Coop.  He kindly shared with my employer & a few associates what the Beast is and the extreme pain involved!

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Prior to being introduced to O2 and Busting, I was fired from more than one job...  One, working for Microsoft I'm glad I lost looking back.  There isn't a less caring employer that I've ever seen than them!!  That was before being properly diagnosed.  I think mostly due to lack of sleep, I was constantly irritable, angry and just couldn't think straight when I was having "those headaches again".  I still have a hard time accepting that of all the emergency room visits and doctors I saw NONE properly recognized CH!!  I self diagnosed when searching on the web and found references to CH.  All my symptoms matched exactly.  Printed it and took to my family doctor.  His reaction - hey that does look like what's wrong.  You need to see a neurologist....  (WTF... ha..)

I think I'm coming up on about 8 years now with the same employer (major bank).  I've explained CH (with the help of the letter from the CH website) to two managers now.  They have been extrememly understanding.  I don't use my CH as an excuse, but when things have gotten bad, I don't hesitate to tell my manager that I'm in a cycle.  I explain that if I have to abrupty leave any meetings it's because I have to get to my O2 quickly and will be back as quickly as I can.  It's truely been a blessing to have had the last two managers that aren't A-holes....  I've had many in the past that are...

Jeff

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I have handed all of my bosses the old Cluster Headache letter for employers for starters.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Luckily my bosses understand and are ok with it eventhough they don't understand it.  I am in cycle now and I truly believe by working, it keeps my mind off of the beast.  With using seeds, the vitamin D3 regimen (from Batch) and a good filled E tank of O2 in the car, I just stroll through cycles now barely getting above a K2.  It took years of pain to get this far and that's the beauty of this board and the cluster headache.com board. I have learned so much in just 5 years.  I've been episodic for 18 years and I finally have this F-in beast in my grasp.  Keeping a positive attitude, a high alkaline diet and exercise has also helped me.  Hejada, if you need any tips or advice/links, please pm me whenever.  We all know what you're going though.  It sucks, but there is hope.

Have a great holiday!

Chad

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