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Brian0829
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Questions about the workplace
« on: Jul 13th, 2005, 4:15pm » |
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Hello, this is my first post. I have been suffering from cluster headaches for around 6 years no, since I was 16. They have caused me to fail out of college and jump from job to job. I currently work at a bank, and have to miss randoms days whenever I get a headache. I was wondering where everyone works, and how you can attend work on a regular basis without letting your headaches interfere. I worry I will never be able to hold a job.
Thanks,
Brian
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seasonalboomer
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Re: Questions about the workplace
« Reply #1 on: Jul 13th, 2005, 4:26pm » |
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on Jul 13th, 2005, 4:15pm, Brian0829 wrote:Hello, this is my first post. I have been suffering from cluster headaches for around 6 years no, since I was 16. They have caused me to fail out of college and jump from job to job. I currently work at a bank, and have to miss randoms days whenever I get a headache. I was wondering where everyone works, and how you can attend work on a regular basis without letting your headaches interfere. I worry I will never be able to hold a job.
Thanks,
Brian |
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Brian,
Glad you found this site. There are many here who have had similar experiences as you have. There are also a growing number that have found, through the information on this site, a way to get some control over their lives back through educating themselves about a variety of treatments, medications and therapies and trying those that have been most effective. There's no guarantee mind you, but there's good solid info here. Everyone's headaches have slight variations as to what's efffective and what is not. sometimes, something that works one time won't work the next, but many people here have chosen to use this site and the information here and mount their "good fight" against their clusters.
Maybe you can tell us a little about your headaches. Have you taken the cluster quiz? If so, are you episodic or chronic. When do you get hit? Have you seen a nuerologist? Are you using any medications now - as you seem to indicate that they aren't working?
There are many kinds of sufferers and the one thing that you will find consistent from people here is that everyone will encourage you to fight on and find a way to have a life outside of your cluster headaches. It takes work and a courageous spirit, but fight on. First by reading as much as you can about clusters and arming yourself with information.
Scott
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wip5150
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Re: Questions about the workplace
« Reply #2 on: Jul 13th, 2005, 4:31pm » |
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Sorry you've had to join the little community here. I think your question has a different answer for everyone since everyone's CH disorder impacts them differently.
For me, I'm a VP of sales at a large marketing company so I have an office with a door that shuts nice and tight if I get slammed in the middle of the day. I do travel a lot and the pressure changes in an airplane cabin tend to make quite a few waves with my head when I'm in a cycle and that's no picnic. In general, I survive and refuse to let them take over my life which is sometimes easier said than done. Hell, last night for about four hours a K9 took over my life for awhile, but I digress
My suggestion is to get to a good, understanding GP or Neuro so that you can manage the cycles/pain with some drugs and/or O2. You can't let this motherf***er of a disorder rule your life my young friend - you just can't let it win.
Are you episodic? Chronic?
Good luck...there's a lot of great information here on this site regarding drugs and other options to manage the "pain".
Out.
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jcmquix
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Re: Questions about the workplace
« Reply #3 on: Jul 13th, 2005, 4:33pm » |
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Exactly, Well Said....
About 45 days ago, I started my cycle again for the first time in almost 3yrs... I was lost...
I did not know what I was going, thought I was going to end up losing my job, also.
But with the Help of ALOT of people here, exspecially E2 & Redd, I have gotten the SUPPORT & Meds that I need.
I am still working the BEAST, but I know now that I am not CRAZY and I am not alone.
Welcome and as I was told Read, Read & Read more.. this is the only place you will find answers to your CH questions...
PFDAN to ALL !!!!
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Brian0829
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Re: Questions about the workplace
« Reply #4 on: Jul 13th, 2005, 5:09pm » |
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Hey guys, thanks for replying. I get my headache cycles about 3-4 times a year, each cycle lasting about 2-6 weeks. I had not starting seeing a neurologist until recently. I went through the first 5 yrs without medication because I thought they were migraines. I had found my own routine I developed could get me through them well enough. I did not realize they were cluster headaches until earlier this year, when I started a job and a co-worker told me about cluster headaches. My neurologist had given me some Imetrex to take, but I have trouble taking them because I am recovering from a 2 year ADDICTION to adderall. So my stomach cannot handle them.
They are so painful sometimes I don't know what to do. I have been suffering from depression for about 2 years now. So the headaches on top of that sometimes become to much for me. I had contemplated
suicide in the past, not because I was looking for attention, because I was very unhappy.
The reason I ask about the workplace is because I feel no one who I work with shows any compassion or understanding. I usually fight the headache until I cannot fight it anymore before I ask to go home. I have noticed no one at work will ever ask me anything about the headaches. I recently approached my boss last week when a headache took over and she would not even make eye contact with me. Everyone there really likes me until I get a headache.
Thanks again guys,
Brian
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yikes-another-one
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Re: Questions about the workplace
« Reply #5 on: Jul 13th, 2005, 7:00pm » |
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going home doesn't work for me.
Even though I'd chill out and hang for the day.
I'd just gethit the next day and the next.
Can't stay home forever.
Today I am gettign hit 4-6 times each day.
since Sept. 2004.
It's odd though.
I work at a pre-school and get hits "around"
the kid's busy schedule.
I get one about a hour before I have to be at work,
and it usually fades away so I can start on time.
thne I might get hit when the kids lay down
at nap time....(probalbly because feeding 10
one-year-olds is stressful and once they settle down
i start to "relax"
and then I willg et hit at 4:45 or 5 ish
which I am leaving work....somedays It is hard to put the toys away and "clean up" with the pain, but mostly level 4 or 5 pains so not too difficult.
it's the 7pm hit and the 9 opm hit that escalate the ante
(level 7 and 8 with no meds.)
a sweet goodnight form a level 4 at 10:20
and blessed sleep.....
only to wake up an survive it all again.
It's not a life,
but I manage to make some money and pass the days
with the tiny tots and lots of hugs....
Some jobs are just better suited for "breaks"
Team work is the best because you can say,
"tag, your turn" and escape until the pain receeds.
I don't think I could survive at a bank or a fast food place...because they don't like it when you have to take more than one break per shift.
Lucky that the day care is built around the kid's needs,
and that nap comes mid-day....
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Kris_in_SJ
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Re: Questions about the workplace
« Reply #6 on: Jul 13th, 2005, 8:17pm » |
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Hi Brian,
Welcome to the family.
First, when you mention Imitrex, it sounds like you're taking pills. Most clusterheads can tell you that pills take way too long to be effective - especially when you're at work. If I were you, I'd work hard on the doc to get either Trex nasal spray or autoinjects - 5 minutes and you're back in action. And, I can assure you, TREX IS NOT ADDICTIVE!
The other alternative is oxygen. If you have an office, you can keep a portable tank by your side. The important thing is that you get a prescription for high flow (10-15lpm) and a non-rebreather mask. See the link to the left for info.
Also, you might look under the section on Medications and Treatments. Near the top you'll find a thread called "Letter to Employers." It's a truly valuable piece of literature to help your boss understand your dilemma.
Now that you know you have clusters, there are many treatments available to you. At first, it's trial and error, but the answers are out there. Work with your doc and find the relief you need.
Meantime, the light is always on here. Many Hugs,
Kris
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E-Double
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Re: Questions about the workplace
« Reply #7 on: Jul 13th, 2005, 9:52pm » |
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Stay as positive as you can and have meds stockpiled and ready for battle if/when needed.
Life goes on ya just need to live it!
Took me a long time to stop questioning the "Beast" and to get motivated to start living.
I'm a Special education teacher/Behavior analyst and run home schools for developmentally disabled toddlers.
I go from house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!)
Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities.
also read and print out this letter:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=knowya;actio n=display;num=1114467535
Wishing you the best
Eric
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Jeff_in_OH
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Re: Questions about the workplace
« Reply #8 on: Jul 13th, 2005, 10:16pm » |
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Brian,
I really feel for your situation. Fortunately, I have a private office and an Imitrex injection unit in my top desk drawer with 2 shots at the ready. I am sure that if you can discuss this with your manager, you could be allowed 5-10 minutes in the restroom or conference room to take a shot and allow the meds to work. I would highly recommed you ask your doctor about this option.
Also, it is rather hard to do as the sufferer, but express gratitude to your manager and co-workers for understanding your situation and allowing you the time you need to recover from an attack. I can assure you it is very difficult to get and stay mad at someone who is thankful and gracious for "allowing" you to recover from a very painful and difficult situation. Just stick with the plan and see how it works out.
Other than that, I can't add much to what is already said. I am a newbie to this site also, but I can guarantee you one thing.......THESE FOLKS KNOW HOW TO HELP US!!!!!!!!!!.
Jeff in OH
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Topical
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Re: Questions about the workplace
« Reply #9 on: Jul 14th, 2005, 3:42am » |
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That's rough, I am sorry to hear your problem and the response of others at work.
Talking to your boss is a good idea, I wish I could print out e-double's letter. My computer doesn't work with .doc files.
Definitely investigate getting O2 as an abort. It should work within 5-15 minutes after the attack starts, hopefully you will respond to it. I believe your employer will allow you a place to store and take the O2 when an attack happens.
See a neurologist who will have to prescibe the O2 and a possible note for work if your boss wants proof of your condition. Ask your doctor about preventative medicine for CH. O2 is an abortive and works during an attack. A preventative will cause the attacks to not take place or reduce their frequency/intensity.
Tell him about your problem with work.
Read the American with Disabilities Act (ADA). CH is covered by the ADA. Learn what rights you have under the ADA. Check your state's website for information about the ADA.
Read this case that went against someone with CH:
http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=11th&navby=ca se&no=0212971OPN
If your boss does something like firing you, they will need to go through HR. That would be a resource you also could use if you felt the need to do so. HR protects the company legally to avoid possible lawsuits. It's best to work with your boss first.
Finally if you feel they are violating the ADA, contact a lawyer. Best of luck to you. Think of us as friends we are not legal experts or doctors. I wish I could help more.
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Sandy_C
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Re: Questions about the workplace
« Reply #10 on: Jul 14th, 2005, 9:52am » |
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on Jul 14th, 2005, 3:42am, Topical wrote:
Just read the above case, and cannot for the life of me think of why the plaintiff was absent from work for the entire duration of his CH cycles, which lasted anywhere from one to three months or more. He certainly did not have one solid HA for those months - if he did, it most likely was not clusters. I can't imagine any CH sufferer literally putting his/her life on the shelf for the entire duration of the cycle. We take whatever necessary breaks during our day in order to deal with the beast, and when he's calmed down, we go right back to work. No wonder this guy lost his case!
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seasonalboomer
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Re: Questions about the workplace
« Reply #11 on: Jul 14th, 2005, 10:53am » |
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on Jul 14th, 2005, 9:52am, Sandy_C wrote:
Just read the above case, and cannot for the life of me think of why the plaintiff was absent from work for the entire duration of his CH cycles, which lasted anywhere from one to three months or more. He certainly did not have one solid HA for those months - if he did, it most likely was not clusters. I can't imagine any CH sufferer literally putting his/her life on the shelf for the entire duration of the cycle. We take whatever necessary breaks during our day in order to deal with the beast, and when he's calmed down, we go right back to work. No wonder this guy lost his case!
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I would agree that this is not a case to wrap your flag around. It would seem that the reasonable objective of surviving cluster headache is to not let it define you in your own eyes. (I am a person with a life that also happens to suffer from Cluster Headaches -- not, I am a clusterhead, therefore I am). Take inspiration from the many people here that work it out. They gut their way through many days and nights and realize the only hope is in the fight to maintain their "self" in the face of what can, at times, feel like very hopeless circumstances.
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Topical
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Re: Questions about the workplace
« Reply #12 on: Jul 14th, 2005, 10:32pm » |
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I have to disagree. CH affects us all differently. Given that fact, I would never say to someone "my clusters don't effect my ability to work, why should it affect yours?" I hope Sandy_C and seasonalboomer can rethink this a little more.
The decision came down to the first paragraph quoted below. With or without a doctor's note he was not deemed to be not covered under the ADA and could be fired.
Reading posts here, some people have extended bouts or are hit by dozens of attacks in a 24 hour period. Some people have been divorced and lost their homes. Legally, we can fall between the cracks, with no employment and no lasting disability to claim medical benefits from the government. The result is - no steady employment/income.
This mirrors the original posters fear of losing his job. He dropped out of college, he has gone from job to job.
"Wood was requesting an accommodation of indefinite leaves of absence so that he could work at some uncertain point in the future. Wood's requested accommodation was not reasonable.
The ADA covers people who can perform the essential functions of their jobs presently or in the immediate future.
As a result, we conclude from the record that Wood was not a qualified individual under the ADA. Therefore, the district court erred in denying Green's motion for judgment as a matter of law. Because of our disposition of the first issue presented in this appeal, we need not reach the remaining issues."
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thebbz
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Re: Questions about the workplace
« Reply #13 on: Jul 14th, 2005, 11:27pm » |
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Sorry your goin through it.
You have to study about your condition. The more you know the better. First find an abortive, you need that in order to maintain attendance. You can keep a job to a point. Being episodic this is possible. I have done it. Get with the Doc. Abortive and prevent, plan and timing no reason why not.
All the best
BB
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RichardN
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Re: Questions about the workplace
« Reply #14 on: Jul 15th, 2005, 12:20am » |
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Hi Brian
You have much reading to do, and many questions to ask. You are in the right place for both. We really do "feel your pain" as few others can. I know this place saved my life and gave me some control over the beast.
Do read up on and acquire (as soon as possible) 02 . . . . wonderful as abortive for the many of us it works for.
Water, water, water
Do you drink? Alchohol is for many (including me - quit 2/02 after finding that info here) a major trigger for CH.
One of the mottos arround here is "nothing works for everyone, but something works for everyone" . . . . the trick is finding the "something that works for you.
Be Safe PFDANs
Richard
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Sandy_C
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Re: Questions about the workplace
« Reply #15 on: Jul 15th, 2005, 8:56am » |
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on Jul 14th, 2005, 10:32pm, Topical wrote:| I have to disagree. CH affects us all differently. Given that fact, I would never say to someone "my clusters don't effect my ability to work, why should it affect yours?" |
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Neither would Isay that, and of course my CH affects my ability to work, as they do everyone else. But my employer knows exactly what is going on with me, and he knows that if I get up and leave my desk, that I'll be back to my desk as soon as possible after the HA subsides enough to allow me to think again. This does NOT take the whole day, let alone three months. And, yes, I get multiple hits a day, so I have to take multiple breaks. If I have an unusually bad day, I'll stay late to catch up, or come in early the next morning, or work over the weekend. It's called being responsible to your employer and getting the job done no matter how tired I may be. What if I were a stay at home Mom, am I going to take a three month break from raising my kids, cooking their meals, keeping their home? Of course not. If you can't, you can't, but during those times when you can, you get your butt off the couch and get moving. You don't just sit there waiting for the next hit. Life is too short for that.
Sorry, I still stand by my comments. To me, Wood appeard to be somewhat irresponsible in this case.
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| « Last Edit: Jul 15th, 2005, 8:59am by Sandy_C » |
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seasonalboomer
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Re: Questions about the workplace
« Reply #16 on: Jul 15th, 2005, 9:23am » |
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on Jul 14th, 2005, 10:32pm, Topical wrote:I hope Sandy_C and seasonalboomer can rethink this a little more.
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Nope. My point was not that some of us who suffer profoundly from Cluster Headaches don't suffer to the degree of having our jobs and personal lives affected. My point was simply to say that this is not one to carry in your hip pocket as your rallying cry.
The examples that serve to inspire on this site are not situations where the sufferer laid down and gave in. The one's that give strength here are people who, sometimes being hit 6 or 7 times a day for extended periods, still find a way to appreciate a kiss from their 4 year old, or the love from their kitty jumping on their lap in the middle of a hit.
Does that mean that "sad" stories aren't a part of our world. Absolutely not. People come here and vent and shed layers of pain they carry. That is what this is about too. But I gotta believe that even in sharing we are all looking for hope about having lives that continue on through our cycles, not set aside during a cycle, or worse, through chronic suffering.
I understand the despair. But I also understand hope and our role here to folks who come to the site is to demonstrate our unnderstanding of the despair and try and inject some hope into our interaction, don't you think?
And show how laughing, ribbing, crying, discussing, arguing, sharing news of new babies and marriages and divorces, is what makes up the greater portion of our lives. not just waiting for the next hit.
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Sandy_C
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Re: Questions about the workplace
« Reply #17 on: Jul 15th, 2005, 9:33am » |
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on Jul 15th, 2005, 9:23am, seasonalboomer wrote:
The examples that serve to inspire on this site are not situations where the sufferer laid down and gave in.
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That's why I love this place and I still hang around when out of cycle. I'm sorry, I find it hard to sympathize with someone who lays down and gives in. I have the utmost admiration for the people on this board who keep on "trucking" no matter what - keep "rowing the boat", as Jonny says, and who scream, yell, vent, and give the support we all need.
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Topical
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Re: Questions about the workplace
« Reply #18 on: Jul 15th, 2005, 8:06pm » |
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Sandy,
It's great you have an employer that will understand your needs. Many times this isn't the case. The original poster is in such a situation with a boss who does not understand yet(but hopefully will) and other employees that are now showing signs of resentment.
Keep in mind that for Wood he provided a doctor's note that excused his absence from his work. One week later he was fired. You seem to think Wood was faking the debilitating effects of his condition.
Imagine yourself in a position where you have no other sources of income. No spouses to pick up the slack. No family to help you out. No friends to help you out. No money in the bank. No insurance because you were let go or did not hold a job for six months when it kicks in.
Your choice is to keep switching jobs or to live on the street. Regardless it will be a life of near poverty.
Your job application has a "reason for leaving" box. They can not discriminate against you for your CH, however future employers of Wood can legally pass him over due to the nature of his CH.
Sorry, but I still believe you are taking your position based off of your illness and financial stability. Your work habits are very admirable. I am the same way. We can agree to disagree, I don't want to debate this any more. We feel how we feel and that's how we feel. 
Let's try and help out Brian0829.
What if your employer is a bank and you can't work past a certain time or on weekends or at home? What do you recommend to the original poster?
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Topical
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Re: Questions about the workplace
« Reply #19 on: Jul 15th, 2005, 8:35pm » |
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on Jul 15th, 2005, 9:23am, seasonalboomer wrote:
I understand the despair. But I also understand hope and our role here to folks who come to the site is to demonstrate our unnderstanding of the despair and try and inject some hope into our interaction, don't you think?
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Of course, we share what works for us. We also share what has not worked. We try to provide optimism but we also must remain honest. "It's ok, the bear won't eat you." Is not really too helpful IMO.
That said, the original poster should be optimistic. There are many things he can do. There is also a limit to the things he can do.
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hdbngr
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Re: Questions about the workplace
« Reply #20 on: Jul 18th, 2005, 4:54pm » |
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The other option is not to say anything to your co-workers. Perhaps tell your boss, because you should be honest about your condition, but a majority of folks do not need to know why you shut your door or disappear into the bathroom for a length of time. Always, always try to carry your weight, even if it means working weird hours. Doctors notes, sympathertic and unsympathetic co-workers alike are the fastest way to lose a job. You shouldn't have to hide, but reality is you sometimes have to be a closet clusterhead.
A fellow poster told me about portable O2 tanks. They are very small, so they don't hold much, but two tanks will fit into a large backpack and can be carried into the office. Go into a bathroom stall, attach the mask, then BREATHE. Take whatever, if any, medication that works for you with the O2. Chances are you could be back at your desk before most notice you are gone. Most folks spend that long visiting the candy machine or taking a smoke break. Go home only as a last resort.
If you are out sick, and they assume you were out with the flu or whatever is currently going around, let them assume that. It is safer than the truth.
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Re: Questions about the workplace
« Reply #21 on: Jul 18th, 2005, 5:23pm » |
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I've been suffering from these damn headaches for several years now and if there is any good side to them it's that, with a couple of exceptions, I only get attacks in the evening or late at night, so it really doesn't effect my job very much. I often sleep a half hour or so later in the morning to try to make up for the sleep I missed the night before, so I'm a little late for work but I just stay a little later and my boss seems to understand. I'm fortunate to have a job that lets me do this.....many people don't.
Rich
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Sandy_C
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Re: Questions about the workplace
« Reply #22 on: Jul 18th, 2005, 5:49pm » |
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on Jul 15th, 2005, 8:06pm, Topical wrote:Sandy,
We can agree to disagree, I don't want to debate this any more. We feel how we feel and that's how we feel.
Let's try and help out Brian0829.
What if your employer is a bank and you can't work past a certain time or on weekends or at home? What do you recommend to the original poster? |
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OK, we agree to disagree on the debate over the Wood Case
Now, as to Brian. He has to bring his employer in to all aspects of his disability, his treatments, and his fears of losing his job. The more open and honest you are with an employer, the better your chances of keeping that job are.
How many hits a day are you getting and how long do they last? The small O2 tanks and your meds are almost mandatory so that if you get a hit at work, you can be back on the job quickly, rather than having to leave for the day. And, if there is resentment from co-workers - just give them that letter that describes CH. I defy anyone, after reading that, can still be resentful. If they are, THEY should be the one fired. Another thought, since bank hours are limited and you cannot work late or on weekends, during your PF times, be the first one to volunteer to cover for someone else's absence if at all possible. (They might end up loving you for that one.) Be the first one to volunteer for extra work during slow times (we all know banks do have some slack times during the day - but, of course, never during my lunch break).
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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Sandy_C
CH.com Alumnus
New Board Hall of Famer
Burn that bra!
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Re: Questions about the workplace
« Reply #23 on: Jul 18th, 2005, 7:55pm » |
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[quote author=hdbngr link=board=chspecific;num=1121285727;start=0#20 date=07/18/05 at 16:54:06]The other option is not to say anything to your co-workers. Perhaps tell your boss, because you should be honest about your condition, but a majority of folks do not need to know why you shut your door or disappear into the bathroom for a length of time. Always, always try to carry your weight, even if it means working weird hours. Doctors notes, sympathertic and unsympathetic co-workers alike are the fastest way to lose a job. You shouldn't have to hide, but reality is you sometimes have to be a closet clusterhead.
Those other employees who have to cover for you when you cannot do your job must know why - that's what causes the resentment if they don't. Not every employee in the company needs to know but those whose jobs depend on that you can do your job do need to know everything. Be completely open with these people, tell them exactly what you are going through. Give them a copy of the letter describing CH. Heck, even let them see you in a full blown K10 hit once. That's all it will take. Then they will understand what you are going through and be more willing to help you. At the same time you must assure them that you will be there for them when they need you. To take their shift, to help them with their workload when they are overwhelmed, or sick and cannot work - and then DO IT!. There's nothing worse than someone promising help and then never following through with that promise. Bottom line, if you want their support they need to know why, and you've gotta give support when they need it.
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| « Last Edit: Jul 18th, 2005, 7:57pm by Sandy_C » |
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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Topical
New Board Old Timer
Posts: 256
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Re: Questions about the workplace
« Reply #24 on: Jul 18th, 2005, 9:30pm » |
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^^^Good advice Sandy.
Show them how valuable you are when you don't have the HA and keep the lines of communication open to your boss. Maybe arranging some 'flex time' when it comes to breaks and your lunch hour would be another option.
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