Question about keeping a job with Cluster Headaches

[Seth]

Hello Everybody!  I hope everyone is doing ok!  I have been getting cluster headaches for 15 years, usually two cycles a year each lasting about 2 months. My question for all of you is how you manage to keep a job while getting cluster headaches.  I am a massage therapist, been one for 27 years now, I am self employed and I am 55 years old now and feeling like I can't keep doing massage anymore, just very taxing on my body.  Since I am self employed I am able to not take appointments during a cycle because I work for myself.  How do all of you deal with needing to be out of work for extended periods of time and remain employed without being fired for taking so much time off?  Thank you for any input. 

Edited Tuesday at 11:17 AM by Seth

[FunTimes]

I feel I am lucky to have an employer that understands what I deal with. Maybe not 100% but they let me come and go as needed, keep oxygen tank in my office and work from home when needed. I am 100 % honest with them and they work with me. When shit hits the fan and I am in a bad cluster bout I work less, when things are good and I can I will make up he time I cut out when I could not make it a full day. I am chronic and get hit every day but the timing is still predictable but changes from day to night on occasion. I take the D3 regimen, oxygen, 5hr drinks and bust. Tweaking everything to find the best method for me. It still sucks and I still go into that dark place from time to time but it always works out in the end. If I did not have a understanding employer I do not know what I would do.

Maybe you could employ someone to work for you so you can be more "hands off" when things flare up? Adjust your schedule around your clusters and let people know what you are dealing with. It could be a good way to spread awareness? Try to think of ways to make this shit condition work in your favor? 

[jon019]

...i was also lucky in having an understanding employer who recognized i needed some accommodation. i also recognized that my situation might cause added burden to colleagues.... so to "compensate" their wonderful understanding, i made myself as indispensable as possible. crap project? i'm there, OT or holiday work?, got it. extra "jobs" beyond normal responsibilities? yup. no one, and i mean no one, ever heard me whine or complain. tough job made tougher...but that's what CH does. totally upfront with direct supervisor, theirs, and HR so if you are not as lucky as me they cannot say: we didn't know when they (try to) fire you......

Edited Thursday at 01:24 AM by jon019

[Shaun brearley]

Got a really understanding employer, I drive a coach for a living all over Europe, but when in cycle, I work local and have days off when needed, 

[Seth]

Thank you for all of your responses!!  So very helpful!!  Forever Grateful. 

[Alx]

Hi. I also have clusters for 15 years. The first twelve years i kept working (mailman)

but as the years went by  the CH got more intense with attacks during the daytime 

so i crashed from not sleeping for  months and went on sickleave.

but now i am in the WIA( disability income insurance)

And i do not have to work anymore.

besides cluster i also have complex pain syndrome. Tinnitus and i have ASD.

these things together got me a disability income.

but i live in Europe.  I guess you are living in US so it will be more difficult or impossible to stop working and get money from your insurance.

goodluck with finding a solution for your problem

[Matthew Funk]

This is a question that has been on my mind more lately. I work as a pastor, so pretty much control my weekly schedule and by God's grace have never had a cluster on a Sunday morning. I was episodic for 12 years, but for the last 14 months I've been chronic. For the the largest part of that I have averaged 1-2 attacks a day. But the last couple of months some weeks have been 2-3 per day. The lack of sleep, and the likelihood that one will come on a Sunday morning, have really weighed heavily on me. Appreciated reading these testimonies. Thanks.

[FunTimes]

I think we all just learn to deal with it and take it as it comes. Not like we can really do much to avoid a hit, they come when they want to and hit as hard as they want to. Some have had success with busting other not so much. Sometimes it brings the pain down, makes it go away for a period of time or does nothing at all. No rhyme or reason that we know of. Just when you think you have it tamed things change and we blame it on the weather, moon or life event. I truly believe that we were all just picked to have clusters because we can deal with it like no others can. We are all the lucky ones that can honestly say they have a high threshold for pain and back it up by the countless hours we spend every week, month or year banging out head into our hands, walls floors or anything else that looks fun to take your mind off the devil inside you trying to escape. It is what it is but we are all lucky to have this site to get it out in the open with others that understand it. Just do your best and keep moving forward in hopes that someday we will have a cure for this infliction.