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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> FINALLY PEOPLE WHO UNDERSTAND!!
        
(Message started by: CHAIN on Sep 6^th, 2006, 5:29pm)

Title: FINALLY PEOPLE WHO UNDERSTAND!!
Post by CHAIN on Sep 6^th, 2006, 5:29pm

I have been having these CH for 9 years. I am in the middle of a crisis with 3-4 attacks a day. I wanted to thank you all for having a place to give and recieve advice. My wife gives me massages in my shoulder and neck which help me tremendously. I take imitrex and truthfully I am worried that taking so much medication every day is going to have a huge effect on my liver later on. However it is the only way to withstand the attacks I get. Another question I had is HOW DO YOU GUYS DO WITH YOUR JOBS???. I havent been able to go to work for 2 weeks now and truthfully don't know when I am going back.

TAKE CARE!

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by maffumatt on Sep 6^th, 2006, 7:31pm

Most of us just deal with them and go on, it's hard somtimes. The lack of sleep is what kills me the most. I use melatonin at night, that kills most of the wake me up hits, but for me it just moves them to the day. I do how ever get enough sleep to deal with them. I have an O2 tank at work. O2 aborts almost all of my hits in 10 min if I can get to them fast enough. I only use the trex if I can not get to the o2. Everyone is different though, I only get 3 to 4 hits a day, where some of us get up to 8 to 10.
Matt

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by GeorgiaPeach on Sep 6^th, 2006, 7:34pm

Hey and welcome but sorry you are here!

I agree with Matt, its the lack of sleep that gets me the most. Luckily I am a student and during an attack, missing a class or two is not a HUGE deal. When I did work, it was the Imitrex that helped me the most.

I get 2-3 hits a day duirng the peek of the cluster, so I consider myself lucky

Cheers

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by brewcrew on Sep 6^th, 2006, 8:50pm

Welcome home, CHAIN.

I think some jobs are more conducive to being able to suffer through and not lose any time from work. I'm a desk jockey (engineer), so I'm able to simply close my door, grab the O2 tank I have stashed under the desk, and start huffing. My boss is very understanding (and also lives 600 miles away from me), and all my key co-workers know of my condition, so they more or less expect it.

If I drove for a living or worked a customer service counter or an assembly line, it would be a completely different ballgame.

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by georgej on Sep 7^th, 2006, 2:24am

Welcome.

I'm episodic. When I was in cycle, I typically missed 2 or 3 days of work in the middle of the cycle. I'm semi-retired now, so it's not so much a problem. I can work around it.

I almost always get hit at night, and sometimes I end up going without sleep for a couple of days. When that happened, unless I was completely trashed, I'd just drag my sorry a$$ into work and get through the time.

Wasn't good when I had to be at my best, and it was probably unsafe, but there it is. I'm pretty pigheaded.

Best,

George

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by bothofus on Sep 7^th, 2006, 8:59pm

Had to muster through about a 6 this morning, 30 mins before work. All total lasted about an hour.
I'm an industrial maintenance electrician, so we have a little leway on the projects.
But I agree with the others, 4 1/2 hrs sleep an hour or an hour and a half at a time does not make for a rested person.

Carl

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by Guiseppi on Sep 8^th, 2006, 10:40am

I got lucky and found lithium. At 1200 mg a day it blocks most headaches and allows me to work. My sick leave balances are dangerously low at times, but I've been able to make it work. Keep exploring the preventatives, finding an effective preventative is the key to being able to lead a somewhat "normal" life! Good luck.

Guiseppi

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by seasonalboomer on Sep 8^th, 2006, 1:34pm

Hey Chain,

Welcome to clusterville. Sorry to hear you are having a bad time.

Are all of your hits coming during the day? How long are they lasting?

If so, and your employer is an understanding type, oxygen may be a great option for you to consider. You can get small tanks that you can either carry or, like my "e" tank, put on a little two wheel cart. This would allow you cut back on the Imitrex and abort hits in less than 10 minutes. In which case you work out a way to find a quiet place for a few minutes, hit the O2 mask and then go about your business. Not everyone is lucky enough to have a job so accommodating. But many do.

Devloping an action plan that gives you more than one abortive (eg. Oxygen and Imitrex) and even some frontline alternatives. For example some folks find that they can stave off a hit if they guzzle back a can of ice cold Red Bull. I though that was strange too. But, I've had some luck with it. Not everytime, but some times. Then if that doesn't work we go to the O2, and then if that doesn't get it, Imitrex.

A plan like that allows you to manage CH.

Add a preventative to the mix and you might find that you start to gain a little edge over managing it. You'll never totally beat the beast but maybe, you'll feel a little less powerless over it.

Read lots on the website. This place changed my life and I feel indebted to the many who have contributed their experiences.

Scott

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by kcopelin on Sep 8^th, 2006, 10:28pm

Hi CHain,
Sorry you had to find us, but glad ya did...
About the job thing-I lost my last job as an eligibility worker for the county because I was too new to have any sick time saved up, and because I couldn't hang in there. I don't know how some of these guys do it-but I can tell you this-It is not a contest to see who can stand the most pain. I made it to retirement with the AF with episodic clusters-even though they "offered" to give me a medical discharge. I was waaayy to bullheaded to do that. We all do what we have to do..I started my own business and work for non-profits who understand that I'll be coming and going. You do what you have to do, and live between the headaches bro. Don't live in fear, or anxiety. Cherish the PF times. Carpe diem.
welcome home
kathy

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by wam on Sep 10^th, 2006, 12:35am

Hi Chain.I've been suffering since 17 and Im 32 now.Im a UPS driver and I really dont know how I make it through the day sometimes when Im in the midst of a cycle.Attacks always happen around 2 am.Its lack of sleep that kills me.Take care,were here for you.

-William.

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by chopmyheadoff on Sep 14^th, 2006, 9:56am

hi bro - im chronic and just go and hide in the toilets for 45 minutes when i get hit.
im more lucky than others though as i never have more than 2 a day and they are usually in the early evening

chin up kidda - let us know if we can help in any way

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by Barak on Sep 14^th, 2006, 5:41pm

Hey chain. i dont know how people necesarrily get through work but im 16 and have suffered for about five years total and a couple spent in remission. but mainly its hard to realize that you can do it but you have to get the ehadache then move on. the O2 is a life saver and the imitrex as well but yo ualready know that so use the 02 when you can and then put your chin back up and try try and try even harder to keep going. i have to do it but i get mine at night then go to school the next day. either way we are all here for you i dont know if that helps but i tried lol. i wish you many pain free days and nights.
Barak

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by chopmyheadoff on Sep 15^th, 2006, 7:12am

to barak - jesus man - really sorry to hear you have to put up with these monsters at your age mate.

hope its not gonna interfere with your exams ets.
how are your teachers with this etc ??

do they give you support ? what about your mates and the other lads at school etc.

if there anything i can do to help just giz a shout yeah ?

uncle chop chop

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by BB on Sep 15^th, 2006, 8:39am

Uncle chop chop ?? :o

Sounds almost like chuppa chup ! ;)

;;D

Annette

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by chopmyheadoff on Sep 15^th, 2006, 9:42am

on 09/15/06 at 08:39:39, BB wrote:

Uncle chop chop ?? :o

Sounds almost like chuppa chup ! ;)

;;D

Annette

oi u cheeky moo !!! ;;D

[smiley=moonwiggle.gif] good job i like you lol

i watched a film (australlian actually) called CHOPPER, and he calls himself uncle chop chop in that !!

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by kcopelin on Sep 15^th, 2006, 2:44pm

Man, I am like, so totally lost with this language barrier. What is a cheecky moo-a cow with a big butt?
And what on earth is chupa?
kathy
(who is, like, from California, but like, speaks South Carolinian also.)

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by Charlotte on Sep 16^th, 2006, 12:15am

I think cheeky moo means silly joking female whom I like.

Don't have a clue what chupa chup is, but I like the sound of it.

Charlotte (also from California, but speaks okie, hillbilly & valley girl)

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by chewy on Sep 16^th, 2006, 7:15am

Quote:

HOW DO YOU GUYS DO WITH YOUR JOBS???.

Put medical documentation into your employee files

Inform and educate your co-workers

Always have an abortive handy

Push on until the cycle ends

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by alchemy on Sep 16^th, 2006, 8:01am

I had one of those jobs that was to time demanding, and performance related. The company was not supportive at all. I left under mutual agreement and opened my own business, which I lost due to injuries.

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by chopmyheadoff on Sep 16^th, 2006, 6:58pm

on 09/16/06 at 00:15:12, Charlotte wrote:

spot on there charlotte ;;D
chupa chup is a brand on kids lolipop (or candy as you might say ;))
she was ripping on me :(
;)

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by nools on Sep 17^th, 2006, 11:40am

hey chain, welcome to the site.

I'm a primary school teacher (or elementary school teacher in your language!) I haven't yet been diagnosed as a CH sufferer so I'm not yet on any medication and getting through the day is crap especially having to listen to 6 and 7 year olds whinning and moaning when all you want to do is crawl into a corner and chop your head off! I do find it very hard although sleep isn't a problem for me. I normally get an attack when i waken up first thing in the morn. I get up 2 hours early so i can give it a chance to go away, or at least subside a bit. in the day when one comes along, I have a great assistant who takes the class for maybe half an hour while I die with pain in the staffroom. The staff are very understanding and hopefully when i get proper medication it won't be as bad.

Chin up and take it easy.

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by BB on Sep 17^th, 2006, 1:01pm

on 09/15/06 at 14:44:40, kcopelin wrote:

Oi ! I may be cheeky but I definitely dont have big butt ! 8)

Annette

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by Edski_1 on Sep 17^th, 2006, 6:06pm

Luckily this cycle has been mostly at night. I guess that's lucky... :-/ The sleep issues are the worst, as many have noted.

I started a new job in April, and this is the first time they've seen me go through this, and they really haven't seen anything yet. At my last job when I got hit (often right when I got to the office) I'd just hide in the bathroom for 20 minutes or so until I could look like I was going on.

I've found that if you like your job it's easier to harrow through it. When I last frequented this board I was a job I really had grown stale with, and it was easy to take the time off. Although I have enough accrued PTO at the new job, I find I want to go in and be productive.

It's kind of like flipping the finger to the beast and saying "screw you! I'm still going to make it!". :)

Title: Re: FINALLY PEOPLE WHO UNDERSTAND!!
Post by calisto on Sep 18^th, 2006, 3:27am

Im a hairdresser and i find doing my job whilst im in cycle practically impossible.Its hard enough making collegues understand let alone every member of the general public!!I just cant make conversation and be cheerful when it feels my eye being forced out from the inside.I cant nip off for 20 mins a deal with the pain in the middle of a cut and while im working to a schedule plus theres never anywhere private to go.Employers try to be understanding but when i have 2 or 3 hits during the day theres more chance im going to lose clients than make them.On top of this the lack of sleep combined with the sedation effects of the drugs practically turn me into a zombie!
I find when im in cycle life grinds to a halt.I hate it!!Plus hairdressers dont get paid sick pay so things get very tough during cycle.Thank god im only episodic

Simon