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        Cluster Headache Help and Support >> Cluster Headache Specific >> Do Chronic Sufferers Work?
        
(Message started by: Superirish2005 on Aug 29^th, 2006, 12:01pm)

Title: Do Chronic Sufferers Work?
Post by Superirish2005 on Aug 29^th, 2006, 12:01pm

I cannot imagine how some of the people on here who are chronic can work. I have enough problem having 1 a day and 1 a night. I cannot imagine having more then that and trying to hold down a job.

How do sufferers who get 4-6 headaches a day surivive or work a regular job.

Man I thought I had it tough.

Title: Re: Do Chronic Sufferers Work?
Post by seasonalboomer on Aug 29^th, 2006, 12:02pm

they just do. and live between the hits.

scott

Title: Re: Do Chronic Sufferers Work?
Post by E-Double on Aug 29^th, 2006, 12:10pm

on 08/29/06 at 12:02:32, seasonalboomer wrote:

they just do. and live between the hits.

scott

Yup!

How do people with Epilepsy or Krohns disease work.
You regulate your meds.
You deal with attacks.
Some change careers some persist and advance within there given professions.

Title: Re: Do Chronic Sufferers Work?
Post by MJ on Aug 29^th, 2006, 12:19pm

You just take a few more breaks and work longer hours.

A clusterhead needs to get to the point that when an attack is over its over. Dont dwell on it. Its a bit of a mental game getting going but as you see here I think most chronics as well as episodics work very hard overcoming the obstacles.
Never sweat the setbacks the good and productive times are found between the hits.

Title: Re: Do Chronic Sufferers Work?
Post by Redd715 on Aug 29^th, 2006, 12:58pm

And in addition, with proper education of your supervisors and co-workers, it's almost as though nothing is odd or strange.

My co-workers and managers are very understanding, and just leave me alone and then let me back on with what I'm doing.

I head right to the loading dock, and come back when it's done, and move on with my work.

Title: Re: Do Chronic Sufferers Work?
Post by kevinpix on Aug 29^th, 2006, 1:44pm

I called in "sick" a handful of times, my boss was o.k., as long as he knew that I didn't need an ambulance. I showed my co-workers how to turn on the 02, they were quite willing once they were familar with it. They'd even alert me about the swelling or reddening of my face. I work in the cold, and am very busy, I believe that helps too. Gotta work to pay for treatment! Just the rules of the game. It's when I relaxed is when I would get hits.

Title: Re: Do Chronic Sufferers Work?
Post by brewcrew on Aug 29^th, 2006, 2:22pm

I've only called in sick twice in 16 years with CH. Both those days I was admitted to the hospital where I started IV DHE-45 therapy.

The rest of the time - Two "D" tanks of O2 under my desk, a couple of hits of Maxalt in my breifcase at all times, and the ability to get up and close my door when necessary.

Oh, one other thing - a boss who knows what I've told him and understands that I may need to check out from time to time.

Title: Re: Do Chronic Sufferers Work?
Post by Bond007 on Aug 29^th, 2006, 2:30pm

My boss and a co-worker who's office is just down the hall from mine both know where I keep my ice packs and my meds just in case they need to administer anything for me. They also keep ice packs in their offices as well. When I know an attack is coming on, I just close my office door and send them both an email letting them know what's going on. They'll both pay a little closer attention to any strange noises that come from my office and if I call for help, they know what to do. They're very cool about it, and then neither of them feel helpless as well. It really works out very well for me.

Title: Re: Do Chronic Sufferers Work?
Post by drivin_blind on Aug 29^th, 2006, 4:06pm

How does one work in a wheel chair with only one arm? How does my wife work after 5 back surgeries. People with terminal cancer continue to work. THOSE are the people I envy. What drive. Hell, I'm a whimp compared to them, but I show for work everyday. But, a great staff really helps. Dick

Title: Re: Do Chronic Sufferers Work?
Post by Charlotte on Aug 29^th, 2006, 11:47pm

We make the most of hte pain free time and overcompensate, and keep our coworkers and supervisors alerted to changes and why they occur. With the grace of God, we can continue to work.

Charlotte

Title: Re: Do Chronic Sufferers Work?
Post by BarbaraD on Aug 30^th, 2006, 5:17am

Yep we work.

When a CH hits I just take time off, grab the O2 and my clients can wait till I get over the hit.

After a hit at work, I don't do anything of major importance until my head is "refreshed". But that depends on the level of the hit. I tend to get hit in the afternoon (mostly) so I do the serious work in the mornings and save "conference time" for the afternoons.

Hugs BD

Title: Re: Do Chronic Sufferers Work?
Post by chopmyheadoff on Aug 31^st, 2006, 8:46am

i went 7 years chronic undiagnosed and unmedicated.

when i got hit at work, id tell my boss i had one of my "migranes" and go and suffer in the toilets for 45 minutes.

funilly enough, they always seemed to go away much quicker than if i was at home and had time to suffer.

when i was going through this all these years i just saw it as normal.
its only now that im pain free thanks to verapamil and imigran that i realise how much hell i went through.

good job im 'ard !!! ;;D

chop

Title: Re: Do Chronic Sufferers Work?
Post by Katherinecm on Sep 1^st, 2006, 1:36am

I think your question is so sweet.

From time to time questions like these come up and I've noticed that for the most part those of us who are not able to work feel a little too intimidated to answer them. There are a lot of people who find CH disabling.

For some of us, nothing seems to work. We try every drug, 02, weird holistic things and diets, and we still get hit constantly with long KIP-10's with shadows and exhaustion that drag on afterwards. Painkillers take the edge off so I'm not suicidal, but they definitely don't help my ability to function.

I admire those who do work and I wish that I could. I desperately wish that I was fuctional enough to go to school - I'd study neuropharmacology and try and find a cure for these damn things.

I get hit constantly. I'm either getting hit or exhausted because I just did. Most days I am asking my mom to help and take care of me because I'm not capable of running errands or cooking dinner or whatever. I am too emotionally and physically exhausted, or too drugged, or both. Sometimes I putter around a bit with crafts because it makes me happy, and today my sister suggested that I sell them, which is something I might do. It will take a lot of crafts to replace my salary, even on the smaller portion private disability insurance provides.

Today at the neurologist I found out I am running out of options, I can think about pain management with heavier narcotics or look into experimental brain surgeries. I spent most of the afternoon crying because I want nothing more than to be able to be functional again. I'll keep the daily kip 10's if I can just get so I can work. At this point it looks like it's going to take a miracle.

modified because, despite my stupor, I realized it made no sense! ;;D_

Title: Re: Do Chronic Sufferers Work?
Post by BB on Sep 1^st, 2006, 6:48am

Dear Katherine,

Your post touched my heart deeply. I really feel for you and your pain and your frustration.

My DH has not been able to work for the last 5 weeks that the cycle started. Looking back he was wrongly diagnosed for 6 years with everything from depression to chronic fatigue syndrome. Last 6 years he struggled badly to hold on to a job. He would try to pack in a lot of work then he would get sick for a few months and then couldnt work again.

We all can only do whats within our capacity and our worth is definitely not based on how much work or income we can generate.

Enjoy your craft and do sell them, maybe even try to sell them on Ebay, its easy and its fun, and you can sell as little or as much as you wish.

I am sorry to hear that the main stream of medication does not help you. I hope that the specialists will come up with something that will work better.

Anyway, you are a beautiful person. Chin up and dont let this get to you. The body maybe imprisoned in pain but the soul is always free.

I will pray for you that you will have painfree days and nights and that you will feel genuine happiness.

Take care

Annette

Title: Re: Do Chronic Sufferers Work?
Post by LeLimey on Sep 1^st, 2006, 7:54am

Katherine I know how frightening it is to feel you are running out of options. When I got told surgery was one of my remaining options it scared the living daylights out of me.

At that point I decided to try the seeds alternative as, frankly, even though that terrified me too it wasn't as scary as surgery. I was prepared to try absolutely anything but that.

I cried my eyes out several times before trying the seeds, it really wasn't an easy decision for me to reach at all. I can't begin to explain my fear of them and I know its irrational but thats how it was. When I finally did try them I had a couple of false starts before dosing properly but when I did I had six days pain free straight off! No hits, no shadows - nothing!

I was exhilarated, over the moon, delirious even. I'd finally found something that worked for me

I'm not saying this is the answer for you - all I'm saying is never give up hope. There IS something out there that WILL work for all of us, never lose faith in finding your magic bullet because I promise you this even if I can promise you nothing else, we'll be right beside you every step of the way until you do and when you do - well.. then we'll be shrieking and hollering and doing the happy dance right alongside you!

Helen

Title: Re: Do Chronic Sufferers Work?
Post by Katherinecm on Sep 1^st, 2006, 4:51pm

Thanks for your support guys. It really helps.

Title: Re: Do Chronic Sufferers Work?
Post by inyoureye on Sep 3^rd, 2006, 11:06am

Alot depends on the job also.

I am a UPS driver. I've been episodic since age 16 and I'm now 39. In the last few years, my attacks shifted to night attacks. Oxygen had been my savior as an abortive for 2 yrs previously but now, I would be awakened in the middle of the night with the monster rolling into view already so the oxy was useless.

This led to high anxiety come bedtime which led to little to no sleep. Once this persisted for a week or 2, I became a danger in a commercial vehicle. I had to pull myself off the road and go on disability till the cluster passed.

Unfortunately, at UPS, the managment are not allowed to be compassionate towards employees otherwise I could have managed to work things out. There are night shifts I could have worked for the 6 months, etc which I could have been a tremendous asset to them having been on a "special assignment training team" that travelled division wide just a yr before. I could have used that training and given personalized attention to our building but instead, I stayed home. I'm not complaining, just letting everyone with understanding employers (who are actually friends) know how lucky you are in that sense.

Title: Re: Do Chronic Sufferers Work?
Post by Charlotte on Sep 3^rd, 2006, 11:28am

inyoureye, I do know how lucky I am and I am grateful. I worked for the sheriff's office for 17 years (legal clerk). Depending on who was in control politically, my life would be hell, my dr notes examined for phrasing, etc. Other times, they were the best. All depending on who was in control.

I transferred to the public defenders office a little over a year ago. In February, I started getting hit every 2 hours. It has been a struggle, and I couldn't make it at work without the moral support at work.

Charlotte

Title: Re: Do Chronic Sufferers Work?
Post by Charlie on Sep 3^rd, 2006, 2:59pm

I was able to work with them and epilepsy for that matter. My work didn't demand my being on the ball behind a counter or having to deal with people all the time. I was also lucky to have one job where it was tolerated.....actually, they got away with not paying me much...probably because of it.

Mine were also no more than 20 to 30 minute hits and episodic so I had several months between attacks. I realize that my experience isn't typical.

Epilepsy is another matter. It's better tolerated and understood......not always but at least it's something most people have seen. We all know the story with CH though.....

Charlie

Title: Re: Do Chronic Sufferers Work?
Post by inyoureye on Sep 3^rd, 2006, 8:00pm

The form from OUCH.com for Employers was a great form of media for the people immediately around me to read but like charlotte, in jobs like ours, next year 1/2 of those people are moved around with new people to replece them and so on so it becomes tough for everyone to always be on board. With me as a UPS driver, attacks during my shift I can handle with trex or O2. I can't have O2 on the truck but the fire dept on my route and the ambulance company both know me well and both get xmas gifts from me every yr whether I've had a cluster or not.

Oh yea,..don't let parents read that form,...my poor mom thought I was dying when she accidently got a hold of one. Geez. Moms. Gotta love 'em.

Title: Re: Do Chronic Sufferers Work?
Post by Dave_S on Sep 10^th, 2006, 3:21pm

Before I was chronic I was a senior staff manager and acting engineering manager making 6 figures. Now I search junk yards for valuable old car parts to sell on eBay pulling in 35K a year
It pays the mortgage so it is ok with me I actually enjoy the thrill of the hunt. I have had 1 stress migraine since I have been working a non traditional job as opposed to one a month before my CH became chronic and I stopped punching a 12 hour time clock.
Dave S

Title: Re: Do Chronic Sufferers Work?
Post by Karla on Sep 13^th, 2006, 10:01pm

I was able to work 9 full years as a computer programmr/systems analyst. Problem was all my hits where from 6:30 am to mdnight. It seemed that the closer i got to the time I would start having a panic attack along wit the ch. I finallly applied for SSDI and was approved on my first try. I was impossible to be around at work because I would bitch at anyone in my way. Had a bad attitude. Would spend lots of time locked in the bathroom. Not to mention it got to were I couldn't sleep, couldn't meet deadllnes much less add and subtract. I just couldn't funciton .