Hi
Been a lurker here for a while and gleaned some very useful information, my turn to ask your advice now please
I am a chronic CH sufferer for the past three years and finding it increasingly hard to deal with especially at work

In a meeting today the pain began and I got very stroppy, only because I didn't want to be there and needed to get my meds.
I got very agitated and hostile which led to a complaint being made and I now face disciplinary problems.

How do others cope at work, i'm fine if i can have my sumatriptan injection and wander about until the pain ceases, sometimes need a quiet sit down or nap to recover afterwards.

Also I have been getting eyesight problems, sight goes out of focus, jumping and getting double vision. Wondering if its the CH or side effects from the Sumatriptan

Have tried most of the preventatives with very little success, now sort of coping just using the abortive, but days like this make me think what am I going to do, feel like i'm going crazy and its taking my life over

Thanks for listening and may your periods of respite be long and many

Rich Welcome!

I am sorry you are having a hard time at work, been there quite a few times.

Download the Colleague letter START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE print out a couple of copies and hand to HR and your superiors at work, I have had to do this at my job so that they know what is up with me and that when I say I need to go take a shot Now I mean NOW!

If necessary bring a note from your doctor explaining your affliction further. 

P.S.
I've had the eye jumping thing and eye twitches as well.  They eye jumping I've had when no imitrex has been taken so I'm thinking its the CH or possible blood pressure rise.

Thanks for the reply Ginger, saw that letter a while back, but forgot all about it. Good time methinks to run off a few copies and pass it around

I'm usually quite a private person and find it hard letting others know about my condition, might have to after today's little outburst though

Not glad to hear you have also had the eye problems, but nice to know it doesn't seem to be a meds side effect

Thanks again, not looking forward to trying get things sorted out at work tomorrow

Hi Rich,
Wow, sorry you have the work challenge on top of the CH ordeals.

Have you tried the "chronic cocktail" of lithium combined with verapamil? I had tried each separately in small dosages and they did not work. But a month ago I went on a regimin of both together at higher dosages and after about 5 days started getting remarkable relief.

Hang in there!

Sometimes those of us who have not had good success with medical preventative have success with Kudzu.  It's been a godsend to be the last few years.  I'm not sure of availability in the UK, or if it can be shipped over from the US.  I get mine from Swanson Vitamins in Fargo ND.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE I think off the top of my head.  I prefer Nature's Way because it is consistent, although others have had success with other brands.

Also check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; They've been having phenominal success if that is an option for you.

Jerry

Hi Rich,

About time you checked in ;)

I took the letter and wrote my own based on the info there and some personal touches based on my own situation.  Letting others in on what was going on really helped.

Now when I get hit I excuse myself, deal with it (oxygen and an energy dring) and then get back to work.  You know this but ... the longer you wait the worse it gets.  There is no help for it.

After the first few hits it has really become background noise for the rest of the office.  It's no longer a big deal.

Good luck...

-Dennis-

I've dealt with it by explaining to the people I work with what happens when I get an attack.

If I get one, if it's mild I'll just grab a Red Bull and see how I go with that. If I need to, I'll disappear with my oxygen cylinder, kill the CH and be back within 10 minutes or so.

People understand that I may have to jump out of a meeting, ring back to complete a phone call, etc, but I will make up for the lost time, etc.

Having educated people I find that people just accept it as being just part of the normal routine.

RichS wrote on Nov 3^rd, 2010 at 5:31pm:

Thanks for the reply Ginger, saw that letter a while back, but forgot all about it. Good time methinks to run off a few copies and pass it around I'm usually quite a private person and find it hard letting others know about my condition, might have to after today's little outburst though Not glad to hear you have also had the eye problems, but nice to know it doesn't seem to be a meds side effect Thanks again, not looking forward to trying get things sorted out at work tomorrow

You are quite welcome Rich. 
Good Luck getting this sorted at work.  Try to be patient with them at work and be clear about what caused your irritability and actions.  Make doubly sure HR is aware of all of the circumstances pertaining to CH and actions taken by your superior!  Let us know how it goes. 

Best Wishes,
Ging...

Well, I feel your pain in more ways than one it seems.  I have actually recently went on short term disability because i was actually missing too much work, and my job was in danger.  I don't really know what to tell you on how to cope when it hits at work because I have not found a way yet.  However, I would strongly suggest educating your boss and trying to communicate to him/her exactly what you're going through.  The only reason I still have a job is my boss' sister suffers from migraines so he's fully aware that even "just a headache", as many people see it when I try describing it, can be very debilitating.  Your boss won't fully understand, but at least he'll know something's up.

I think sometimes the problem of getting a hit at work, or the mall, or in church, or wherever we don't want to get hit (not that we ever do) is compounded by not having planned for a hit. Whenever I'm out of the safety of my house, I have to plan my quick escape should a hit come. I have my abortives available, and I look for a way to park near the entrance, or away if I'm feeling like I don't want people staring, I have the abortives of choice in an ascending order-least to most intrusive and obvious-and then I can get on with whatever I need to do. It's like disaster preparedness, actually. Have a plan and hope you don't have to use it. Blessings. lance

Document your Ch with HR and provide medical documentation. Express what accommodations you may need.

Over here in the US we have something called the EEOC.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thnks for all the support, the rotter woke me at 4am, but had a 100mg tablet then once it calmed down a lie in and nothing since.

Didn't get much sorted at work, what I said got misconstrued and trying to explain how the pain clouds the thought process
I am covered by what is known in the UK as DDA, bit of protection, but not much

Made an appointment to see a counsellor, best to prempt what they will suggest (might even help) but seems I have to face a discipline case.
Hard to fully explain how one feels during an attack, but going to have a go

Determined not to go sick and let it beat me again although I must admit to checking out what my pension would be if I left now

Thanks again and will update just out of interest

Quick update, suspended from work and charged with misconduct for abusive and threatening behaviour

Sounds sinister, but my words of talk about this outside was exactly what I meant as in not now and after the meeting when my attack subsides
I took my meds and tried to explain again what I meant which allegedly made matters worse

Apparently I also looked angry and agitated which made others frightened, didn't feel that great myself

Didn't expect to be leaving work after 35 years with the same company like this although i suspect I am just a liability
if I were honest  probably had something of a mental breakdown due to sleeplessness, almost constant pain and fear of the next attack. Also been getting night terrors (morbid fear of dying) which I think may be linked to the recent course of Prednisone I took to break up a particularly severe bout

Off to the doctors Monday to mention all this and hopefully ask them when contacted if they can explain the full impact of chronic CH
Such a shame it has "Headache" in the title, fed up trying to explain its a bit more than that

More news will surely follow

I'm sorry Rich, getting canned in the middle of a cycle is really piling on. :'( Keeping you in our prayers.

Joe

Jeez Rich, that's terrible news. If it's any consolation, I was in a big meeting giving a presentation when an attack came on. I started getting dizzy and blabbering nonsense. Sounded like a complete idiot. I've been out on disability since. That was in February. -Chris

That sucks Rich sorry it went that way.  Hopefully with Doc's input things will be put right. 

I have been told I definitely have a Don't "F" with me look when I have a CH hit so the comment on how you looked isn't surprising. 

I hope you will be back to work soon with no left over fall out from this incident.  Make sure your doc follows up with written notice to your HR dept. at work.

Best Wishes & PF Vibes!

Cheers all for the kind words, hoping it can all be made right, but not that confident

Eye has been watering like mad and now got an infection presumably from rubbing it too much

Reckon I will get my money's worth at the docs tomorrow

Thankfully I have a very understanding boss but this was not the case intially.  I first had to hold a meeting with them to explain what CH's were and the impact.  I then printed off information and gave it to them so they would have a better understanding of the problems that I face.  I keep my boss upto speed everyday during a cycle and I am given flexibility whilst at work so that if I get an attack I leave the office to get over it and return to the office if I feel ok.  I appreciate that not everyone may have an understanding boss but educating them in the ways of CH's was a big step and I feel they understand a lot better what I go through and actually appreciate the effort I make to be in work during a cycle.  During cycles I become very quiet and withdrawn at work and converse with my colleagues very little, I used to get stroppy with colleagues previously and decided for their and my own benefit to get through the day as best I could.  Maybe this approach may help, the one thing I have found through CH's is that I will try almost anything.  Good luck.

Latest update, now signed off by the doctor suffering with clinical depression along with the usual cluster headache

Work tried to pressure me into making a personal statement for the disciplinary hearing, but I refused because of my mental state and the possibly prejudicial nature of anything I wrote.

Very down about the whole matter and feel like telling them to poke their job where the sun doesn't shine.
If they treat someone like this after 35 years service and suffering from a disability god help anyone who has just joined.

I admit my outburst was wrong and sorry if it upset/frightened others, but surely there should be some compassion.

Anyway off now for at least another fortnight and take it from there

The saga continues

Don't give up hope!  Would it be possible to have someone go with you to represent you?  Especially with a diagnosis of depression I would think they would understand your thought processes are not totally where they need to be.  I don't know about in Britain, but in the US there are legalities that cover medical/disability issues.  I would suggest you look into that.  Perhaps legal counsel would be helpful, not in a confrontational way unless there is no other option, but so that you have an understanding of what your rights are/are not.

Jerry

Good advice Jerry.

Rich, you hang in there. 
Depression with CH is very common. I hope you are getting the help you need to get through this. 

Use that fortnight well.

-Dennis-

Everyone has a few "bad moments" here and there. It shouldn't define your time there.If you crossed a boundary into threats, racism, sexual harassment or other such issue, you would have a fight on your hands. Otherwise, it sounds like you should have a strong case for not losing any pay and especially not losing your job.

Keep in mind what the recipient(s) of the infraction may be demanding, what their power base is, and how the company may view potential outcomes.

-Chris

Hi Rich,

I am so sorry to hear about your experience. I feel for you, and wish you nothing but the best.

I have been having my own challenges at work, so I was definitely able to empathize. I've had no pain free days in the last year and a half and the last few months have been absolutely brutal. Managing CH and a career is tough for anyone; hang in there, we'll all be wishing you a positive resolution to your situation.

Take care - 

Rich, I'm so sorry to hear about the complications with work.  This past summer during my episode my workplace treated me awfully, even though I had Family Medical Leave Act in place to protect my job.  I was depressed and, though I'm a pretty quiet guy, had a couple of angry outbursts at work.  Also, in retrospect, I think I shared way too much about my medical condition with people who didn't care.  They tried to use just about everything I said regarding my CH against me and provided no flexibility in work scheduling during my episode even though most of what I do is on the computer. No direct disciplinary action, but when the episode ended, I was subjected to a rather humiliating meeting with my boss, the human resources representative, and the chief operating officer of my office -- I was told that I was no longer considered reliable and that I made the COO "nervous."  This was after years of consistent "outstanding" performance reviews.  It took a few months, but I'm finally able to say goodbye to that awful work group -- I start a new job in a couple of weeks!  Hang in there, Rich.  The depression, anger, etc., are par for the CH course.  (Am I remembering correctly, group, that acting in an abnormally angry manner is actually one of the symptoms of CH?)  Jim

Hi Jim!

Glad to see you post!  Great news about the new job.  Hope it goes really well for you.  It is a balancing act at times trying to determine what to say and how much to those around.  Sometimes full disclosure is needed and others a zipped lip.  Depends on what they want to do with it.

Jerry

Well said, Jerry. I think you really need to read the situation in terms of how much you trust them to be understanding and fair. I do think it's important to really explain reasons for any angry outbursts or it's not likely you have a chance to stay with the job, but you don't have to tell your employer everything about your medical situation, only what they need to know. You can talk about meds if you want, but it's illegal for them to ask you what legal meds you're taking. -Chris

After five months I have the final update of my discipline case

It has been decided that the charge of gross misconduct was not warranted and I received a written warning.
I have now returned to work after five months absence with CH and Depression

On my return I was advised that the duration of my sick leave plus one other period of five days would earn me a formal warning
This has now been rescinded when they agreed that CH was covered by the DDA and no further action has been taken

Many thanks to my GP who has been great throughout my problems and also the Union who provided support and advice.

If you do have problems at work do make sure your employer and colleagues know of your condition.
Also contact your OHS and have your illness recorded, too many people see/ hear the word headache and dismiss it as a trifling inconvenience

That's if for now, but wanted to bring this thread up to date and most of all thank everyone for their kind words of support

Rich

This thread was very informative. Since I am new to CH I had no idea what expect. I am in my first cycle so I do not know how long this will last. I've recently gone on FMLA from work, and am not keen to lose my job. But I find I can not work with a headache and my work is a good trigger for them. I work in a book store which can be surprisingly loud and bright.
Anyways, all this information about talking with HR is really useful. So thanks!
Jamie

Thanks for the update Rich!  Glad to hear it is resolved.  Keep your head up.  (No pun intended)

Jerry