I'm sorry if this got covered, but I couldn't find anything specific to my situation.
I'm seeking advice in how to approach my work situation, which was already complicated prior to starting my cycle almost 2 weeks (Oct 13). I'm epsodic and this is my first in 2 years. This cycle, I'm getting hit between midnight and 8 AM mostly, 2-4 hits from a Kip3 to a 7 2 nights ago. I'm stocked up on O2 (works well most of the time, not for the Kip 7 so much), Kudzu (up to 6 a day now), Prednisone taper (now tapering down to 40, 30, 20, and 10 after 8 days of 50mg), and I carry Zyprexa (10mg pills, never tried it before) and 10mg Maxalt in my wallet.

OK, here's what's going on at work:
I've got a management job in a creative company, and have worked there for a number of years with a good, measurable track record (highly rated by peers and bosses, etc). Recently, a I got a new boss who doesn't know me and doesn't seem too interested in having me on his team. I don't hold that personally against him, but it makes coming in to work less than desirable. My nature doesn't allow me to slack off, so I try and be productive, but that's difficult with a boss who has his priorities elsewhere.

Add to that my CHs now, which I haven't told him or the company about, and it makes matters worse. Coming in late when recovering from a sleepless night or leaving mid-day to ride out a hit in the car with O2 doesn't look good.

I think the proper thing to do is to let someone know.  It's a big company with an established HR department, and they know and trust me... I know, I know.... it's HR but it's true :)
I worry that if I do, it might seem like a ploy to get away with something, but obviously it's not.

Layoffs are impending and are expected to happen company-wide next month and then again in the early part of next year. I've made peace with getting laid off as I've had a good run with this company and the signs all say it may be the right time to move on, but I also want to go out on good terms, and collect my severance. If I can hold off until mid-January, another incentive kicks in which my wife rightfully says we shouldn't walk away from, especially when we might enter temporary unemployment in these uncertain times of recession.

My question is: how should I handle it at work? Do people have experience dealing with a work situation that may be unsympathetic to CH sufferers? What kind of experiences have you had that could help me, and what advice can you give?
I'm having a hard time reasoning things out like I normally can with how my nights and hits have been.

Thank you for reading this long-winded question. Wishing everyone pain-freebies  :D

Ryder

Ryder,

First, let me say welcome and I am sorry you had to discover us! 

A couple of ideas.  First, check out the OUCH site to the left.  Click on it.  Scroll down.  There are pdfs of resources that may be helpful for you, including one to share with employers.  I actually sent it to my supervisor and a colleague; I get hit in the middle of the day in the height of my flare pattern (Feb-June) and may have to reschedule appointments.  I did not want to be perceived as slacking off!  I have lupus and I don't need to take time off for it; just the CHs!

For night, I take Melatonin; it seems to help.  In my flare period, I take 10mg.  This is the first autumn I am taking a low dose in the hopes that it will ease the next epsiode.

I have also found that Imitrix injections are fabulous for the nighttime hits when the KIP is 8 and above.  I use O2 at home.  I use energy drinks and Maxalt when on the road. 

Read on and other ideas will come...

This is an awesome support and knowledge site.

Good luck with your CHs and especially with your work situation.

This is really a tricky area. If you don't get hit at work, I would not disclose it.  Especially if the new guy doesn't seem to want you on the team.

I have been clerical for the county for 21 years and have had successful situations with full disclosure and hits at work, and the opposite. It depends a lot on the team you end up with.

If, like me, you have down time and may need ice or o2 during work hours, you have to disclose the headaches.

Good luck with it.

Charlotte

Here is a form letter you can print out and give to your employer if you choose to disclose your condition.

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I can't tell how to handle this. It's your situation and you will know best what to do. My only thought is with this layoff thing looming and a new boss that's not very supportive of you, this might be a good option just to make sure you're covering your butt here for any possible future arguments about your job performance, possible layoff/termination and severance decisions. Take it from someone who has been royally screwed...big companies WILL screw you given the chance. If they can avoid writing you a check, they will.
Just make sure you have your butt well covered. I sure hope you'll never need it but if you do, you'll be glad you were prepared.
Best of luck to you in your troubled time and pain free wishes!

DON'T TELL THEM!  Drag yourself in!  Fake it 'till you make it!  Especially if it may only be until January.  You will be shooting yourself in the foot if you tell them.  New boss, bad economy, weird illness...don't tell them.  If someone looks it up and sees "Suicide Headache," you are branded, in my opinion.

Good luck...hope your head cooperates for you to get through this period!

Joni
 

I cant tell you what to do as each situation is different i can only tell you my experience.

I told the guys in work about my problem and what to do if they noticed me having an attack. I allso told my supervisor, shift leader and assistant shift leader who i had a good working relationship. the day after i told my supervisor things changed. My work collegues sat together in the break room when i  wasnt there and decided that 1st i dont have any illness, 2nd if i do it cant be that bad,3rd that i was only trying to do the easy work. several other comments have come out over the last months and out of a shift of 21 people 2 have understood what it means to have CH and fully understand what i/we go through the rest just sit there and try to find some reason to make me look bad. to this date i havent had a sick day, I make sure that i do the hardest jobs when possible and basically take all the crap the tell about me and do the opposite. Now the situation is strange, they dont know how to approach me as they know that i know whats been going on and cant find a reason to explain why they did what they did. Me personally i find it very amusing watching them as they work in the same area as me. Its like there all walking around with a large foot in there mouths.
as to what you should do personally if i had the chance to go back and do it differently i wouldnt have told anyone apart from my department head.

I hope this helps

Mark

Using abortives which have the fastest/proven action will, generallly, deliver you from the long "hang over" effects of an attack.

You are carrying two good meds in your wallet and I wonder why you have not used them, especially when you are in a competitive work situation which, likely, won't cut you much slack.

Thanks everyone for your thoughts an d advice. it's really great to get other's perspectives as I feel so alone when dealing with CHs in general, and now it's spilled into work too.
I only had time to read through your responses as I'm running late to take my son to preschool, but wanted to share I had my 1st PF night in this episode. YAY! This isn't unusual for me, as I usually have PF days here and there, and I'm sure it's not the end of this episode, but I feel GOOOOD today :)

@EmJay: I actually have been on this site for many years, and have read up on a lot. I should have been more clear about that, and the number of posts I've made certainly doesn't reflect that. I do have Imitrex injections (6mg I believe) at the ready, but they are a few years old. Would they still work?

@Charlotte: I have yet to get hit at work during this cycle, but had a couple of mid-day hits this weekend so I'll wait and see...

@Weatherman: despite my initial reaction, which is very anti-"playing the game," I think that with 2 young kids (infant and toddler), this may be the safest thing to do. I just worry that it might backfire and be perceived as an excuse to slack off. However, since the HR department is aware of my good track record, I don't think I need to be overly concerned about it. I'll think about this today.

@Joni: my concern is what happens if I need to duck out of a meeting, or miss work, or seem out of it some days. Then it might be perceived as my dragging my feet, being a slacker. This, I'm thinking, might be worse considering all the other factors associated with my work situation, which is hard to convey on the forums.

@Mark: that really, really sucks about your coworkers not having a clue and creating a negative work situation for you. Have you thought about changing jobs yourself? Maybe we can start a new business together, bu clusterheads and for clusterheads? LOL But I may only tell my HR rep and not my new boss/team.

@Bob: I want to understand you more clearly:  when you say "Using abortives which have the fastest/proven action will, generally, deliver you from the long "hang over" effects of an attack," do you mean using the Maxalt or Zyprexa instead of O2, and that the pills are better than O2 for hangovers?
Also, if I wasn't being clear about it, I haven't gotten hit at work (yet). If I do, are you suggesting to pop a pill instead/along with O2?
So you know, I've had mixed results with Maxalt as an abortive (can't rely on it to abort consistently), and never tried Zyprexa. I'm a little worried about the Zyprexa as I've heard people having reactions to it which may make it hard to work. My Neuro prescribed these hard 10mg Zyprexa pills which I can't break in half, so perhaps I should ask for a 5mg Rx instead.

Every word of advice and encouragement has been such a positive thing for me, everyone. Thanks again.
-- Ryder

Ask your doc for 5mg/Zyprexa samples and start at that dose to see what happens. If he won't supply, you can get a pill splitter for $5 at the drugstore.

I love Zyp because it works so 100% for me in 20-minutes. Totally clear head thereafter. In an office setting you can't get more convenience than a pill. (I don't recall anyone here, who uses it, reporting a headache redeveloping after taking Zyp.)

Second best would be Imitrex injection in terms of potential for quick relief. Having to duck into the men's room is the only drawback. (If Maxalt doesn't work--throw it away!)

Have you tried standard dosing of Verapamil as a preventive? The track record is very good. Especially in the context of your work situation, not trying to find a good preventive is self-defeating--you need maximum benefits to cope with the stress of work.

Ditto...Bob.  Even the 2.5mg Zyprexa works for me. 

To answer your question...IF it became necessary, I did tell my close coworker friends and supervisor I had cluster headaches but I always acted like it was mostly just an inconvenience, although painful, and would pass.  I didn't explain the headaches and they really never questioned it because I was so casual about it.  Like you, I was lucky to not have many at work...I do think our brain takes care of us.  As for the exhaustion, I just dealt with it and tried to stay on top of medications, sleep, massage, whatever you need to help you function.  I taught school for 31 years successfully and many did not even know I had them.  I am a very upbeat type person and can fake it very well when I don't feel well.  It has it's pros and cons!  Because of that, if I am not really cheerful, people notice, so I carry on until it is impossible...again, has it's pros and cons.  Maybe you can produce a happy medium!  Good luck.

Joni

1.  If getting hit on the job has a safety issue, I think you HAVE to tell them.  I assume that isnt the issue for you.

2.  I say tough it out as much as possible.  The less you let CH effect your daily routine, the better life will be.

3.  Zyprexa has been 100% effective for me and tends to stay effective for hours afterwards.  I never had any problems (just my experience)

4.  I would try energy drinks with taurine, zyprexa, and maxalt (or trex) so that you can try to abort at work without a tank.  If you can get an effective abortive, noone needs to know.

5.  The above are only from my personal experience..... you will have to decide for yourself what is best for you.  Best of luck and welcome!

Employees are entitled to Reasonable Accommodations due to medical needs.

File one if you feel you need to.

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At work today I found out I will indeed be laid off in 2 weeks. Like I said before, I'd already made peace with it so I'm not devastated, but this changes the equation: I no longer have to worry about holding out and "covering" for my CHs. At least not at this job. And I feel relieved to have some finality to it. I will take all your work advice to heart for future situations, which undoubtedly will come around again. But you did give me some good suggestions for generally dealing with CHs at work, and I had some questions:

@Bob: I will get the splitter, unless 10mg isn't scary to try my first time out. I generally handle my drugs well and don't have severe reactions.
As for the Imitrex injections: do you ever do the trex on top of the Zyp, or just one OR the other? How about mixing O2 with Zyp? If so, do you try O2 and after the 20 minutes pop a pill?
And as for the Verap: My previous 2 cycles were ones where my routine enabled me to complete the cycle without starting Verap. My understanding is that the Prednasone taper is there to cover the period of time it takes for the Verap to build up in my blood. If that's the case, I've been lucky enough in these previous 2 cycles to do the Pred taper and by that time, I only get hit with Kip 5's or lower for a couple of weeks before I complete my episode. Therefore my thinking for this cycle is to continue this same routine. If it doesn't, I'll most definitely go the Verap route.

@Joni - if you did 31 years of education with CHs, you are a role model for me! I don't deal with sleep deprivation well at all, and people can tell. I don't have a good excuse other than "I couldn't sleep" and people usually let it go at that.

@FramCire -
1. you're right, it is not a safety issue. Far from it, actually :)
2. I agree, and have operated this way through high school, university, and my 16 year professional career. It's hard sometimes. But I believe this keeps me going and gives me the strength I need to move on with my life.
3. Any Zyp side-effects for you? What dosage? Ever combine it with O2?


Thanks once again.
--Ryder

Wow, so sorry to hear the layoff has happened. Or in some ways maybe congratulations are in order.
Anyway, best of luck to you on your next career adventure!!! Hope it all works out very soon!

No role model here.  I just never considered an alternative.  No that I am retired and look back...I don't know how I did it.  BTW, the 2 cycles I have had since retiring have given me much more problems.  It is easy to wonder if the mind set makes a difference.  I don't HAVE to be so responsible now as I only Substitute teach and can say no.  Food for thought. 

I only use Zyprexa as a last resort and never had any side effects.  I use 2 pills (I thought they were 5mg each but I will check) and it aborted everytime.

When I was working in early childhood special education, I actually found it better to work through the pain.  The kids I worked with were used to me making funny faces (no joke) so when I got hit, they always thought I was being silly (my eye doesn't turn red).  The only problem was that I used to do a lot of driving with that job and I just focused hard on the driving and except for the occasional pull over to get out and either scream or take meds, it worked fine.

When I was working there, I used Maxalt MLT (dissolve) and it worked better for me than trex injects. 

Anyway, it is weird for me to talk so much and never mention Oxygen, so let me just say that O2 works decently for me.

O2 can be used along with any of the meds mentioned. O2 should be the first thing you go to then use the others if O2 doesn't abort. Getting on the O2 as fast as possible is key.

I don't mean you can't take the other meds at the same time, just that O2 is much safer to your body. When used properly you may not need Maxalt, Imitrex or Zyprexa.

Please check out the O2 info:
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@Weatherman - let's go with "congratulations!" - thanks :) Time to finally move the family out of LA and closer to the place where we always knew we'd settle down. It was only a matter of time before it happened, whether by layoffs or resignation. Being laid off has the added benefit of a severance, which will be very, very helpful.

@Joni - I hope you're wrong, and based on that wish for your next cycle and the ones after it to take it easy on you. You've been fighting a long time, and you deserve it. Sending good vibes your way.......

@FramCire - funny to hear the kids thought you were being silly. If only they knew. I've used trex injections over 10 years ago, and the reaction + rebound I suffered scared the hell out of me. Not so much that I wouldn't resort to it (anything, actually) if a Kip 10 hit, but trex injections are not my friend. I'm happy to have found out about the Zyprexa, which wasn't around during my last cycle IIR.

@Skyhawk5 - I've been using O2 since my last cycle, so this is my 2nd time. It works most of the time. It's the times when it doesn't, like a couple of days ago, that made me ask about O2 in addition to Zyp.

Thanks everyone for your advice and hope everyone has a PF night tonight.

I keep that letter to the employer in my desk at all times to distribute to employees who don't know about my condition.  My bosses fortunately accept it and the one boss has a close buddy who has clusters.  Maybe  your neuro could write something brief explaining this condition because that "letter" on the OUCH page might be squat if your employer isn't cool to begin with.

I don't know of any MEDICAL reason for not using Zyprexa and O2 at the same time, or with Imitrex. But--that's a question for the doc to handle.

However, I would not mix two abortives at the same time because you cannot tell which one is being the most effective. Trials should segregate one treatment from another.