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Letter to Employers & Colleagues (Read 26521 times)
Ade
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Re: Letter to Employers & Colleagues
Reply #75 - Nov 26th, 2008 at 7:07pm
 
Fantastic! I'm printing this off tomorrow.

I could have done with this 4 years ago, it would have saved me from losing at least one job.

Hang in there people!

Ade.
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mstfr
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Re: Letter to Employers & Colleagues
Reply #76 - Feb 3rd, 2009 at 10:30pm
 
Smiley Smiley Smiley Smiley

I am new to this site, and your letter is a true blessing at this time!!

Thank You!! Misty
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Re: Letter to Employers & Colleagues
Reply #77 - Apr 21st, 2009 at 1:43am
 
I have never spoken to anyone with CH before today, and i want to let you know that it is a relief to hear someone else say the things you have said in this letter.  I am awake now. awaiting another fight with the demon tonight, I will at least know that you understand what i am going through.  I hope you realize how much it helps me to know this.


thank you very much


Mark
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Re: Letter to Employers & Colleagues
Reply #78 - Jun 3rd, 2009 at 10:43am
 
A German version is available at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Oliver
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Re: Letter to Employers & Colleagues
Reply #79 - Aug 16th, 2009 at 3:48am
 
It is a comforting letter for me to read, however, I would be very cautious about giving it to an employer, co-worker, or even casual friends due to the negative connotations associated with CH.  Only the people closest to you that you trust need to know the full range of possible dysfunctions.  I would give the letter to those closest to me and revise it for the others.  I will send it to my family members since there are 10 of us clusterheads spanning 5 generations.
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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Re: Letter to Employers & Colleagues
Reply #80 - Feb 17th, 2010 at 5:36pm
 
I think this is a great letter.  I especially liked the part at the end of things to avoid saying.  That got me to laughing and we all need a little laughter.

Thanks for this valuable asset.

Smiley
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Re: Letter to Employers & Colleagues
Reply #81 - Mar 13th, 2010 at 5:50am
 
This is an excellent letter. I've felt so very frustrated trying to explain what I'm going through to my principal and colleagues.I will most certainly use the letter. I'm in such a bad state, I'm not working, however this can't go on for long, as I have to pay $110.00/day for my sub. I am now going through 5 procedures of injecting blockers into the nerves in my brain. I am so anxious for something to help, I don't know how much longer I can go on like this.
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Richard in San Diego
 
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Simon
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Re: Letter to Employers & Colleagues
Reply #82 - Apr 11th, 2011 at 9:45pm
 
Good God! Amazing to see that this is still doing the rounds. Ashamed to say I haven't been here for a few years, but what do I see popping up before me?!

Glad this is still having some use for people - certainly didn't think when I wrote it in 2001 or so that people would still be using it ten years later.

Sitting here at 2.30am UK time just winding down from an attack - yes, I'm still getting them - been chronic since 1995 or thereabouts. Suddenly thought, I wonder how ch.com is doing and called into visit.

Hi to any old timers out there - to any who have no idea who I am, suffice it to say that I posted message number 55 here, so been around for a while! Wrote this letter when I was setting up clusterheadaches.co.uk, the precursor to ouch(UK).

I have given this letter (or the original UK English version of it!!) to my employer for the first time in the last year, and was gratified that it made a difference - my boss has been very understanding.

As I've said before, I'm thrilled if people want to use it, and feel free to edit out bits that you're uncomfortable with - all I ask is that you keep my name on it somewhere - just a little conceit on my part to make me feel that I have made a difference!

Simon (aka Dolly!)

Baa
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Re: Letter to Employers & Colleagues
Reply #83 - Sep 20th, 2012 at 9:13pm
 
What a great letter. My wife just read. She has seen a full attach of mine and has cant  believe sometimes how I make it to work every day. I have 3-4 attcks a day two of which I am at work for. And I just got proper meds as  dr thought it was a sinus infection. But MRI and Catscan ruled that out.  Thank god for Nero

I am learning alot from this site.  Soo glad I found it.. Thank you all
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Re: Letter to Employers & Colleagues
Reply #84 - Mar 21st, 2013 at 11:40am
 
Thank you Simon for writing this letter. I have a hard time explaining myself to others and this, very bluntly, puts it out there in black and white.
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Due to the cancellation of the penny, I no longer give 2˘ about anything. I may however, give a nickel!
 
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Re: Letter to Employers & Colleagues
Reply #85 - Sep 1st, 2013 at 1:31pm
 
I am so thankful I found this. Being AD Military some people don't understand or even know about CH's. Only in one cycle have I had it come on at work. I was lucky at that time I worked with some great people who to a look at what was going on and could kind of understand why I locked myself in a dark room.

Well, now the beast is back and I am at a different base. So this letter I hope will help them understand why I'm tired, miserable, and if it does happen at work why I disappear quick.

Thanks again for this.
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Re: Letter to Employers & Colleagues
Reply #86 - Dec 13th, 2013 at 1:12am
 
Thank You I am so giving this to my boss tomorrow. I have been going through it pretty bad lately and just missed allot of work. I'm back now , but just want them to understand me... Even just a little bit. This letter is awsome!
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Re: Letter to Employers & Colleagues
Reply #87 - Mar 7th, 2014 at 4:41pm
 
Excellent letter.
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Re: Letter to Employers & Colleagues
Reply #88 - Mar 13th, 2014 at 4:13pm
 
Thank you so much for posting that letter Simon!  I am an episodic sufferer (usually only lasted a few days) and had the first big blow-out episode which lasted for a little over 6 weeks about a year ago.  It was the first long term one that my husband had to also endure (we've been married for 17 years).  He still doesn't quite understand the agony these bouts inflict.  He equated the pain I was going thru with the migraines that his mother gets.  I think this letter will help him understand that there is a BIG difference! 

Also thanks to everyone on this site.  I'm new to this forum, but not new to being a "ClusterHead".  I've had these periodic episodes for over 30 years, but wasn't properly diagnosed until last year.  It's a relief to find out I'm not as crazy as I thought I was.
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Re: Letter to Employers & Colleagues
Reply #89 - May 13th, 2014 at 10:53pm
 
Something happened to the link, and it now redirects to some other site, and the page is not available.

Has it been hijacked?
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Re: Letter to Employers & Colleagues
Reply #90 - May 15th, 2014 at 2:37am
 
scarmig wrote on Jul 29th, 2005 at 3:28pm:
For those who don't have Word, I've htmled a copy onto my website.  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Feel free to use it, copy it, or link to it, though i make no guarantees on how long it will stay put.  Smiley


this link is live was just there
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Re: Letter to Employers & Colleagues
Reply #91 - May 15th, 2014 at 8:54pm
 
shoot wrote on May 15th, 2014 at 2:37am:
scarmig wrote on Jul 29th, 2005 at 3:28pm:
For those who don't have Word, I've htmled a copy onto my website.  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Feel free to use it, copy it, or link to it, though i make no guarantees on how long it will stay put.  Smiley


this link is live was just there


Just in case the link dies, here it is with some formatting applied:

Quote:
A note for those who know a C.H. sufferer:

Someone you know has probably given you this note to explain a little about a condition they suffer from called Cluster Headache Syndrome. It is likely that before you met them, you had never heard of this condition, which, after all, affects less than .05% of the population.

The term "headache"; is very misleading. Your friend or coworker is not experiencing the typical symptoms of familiar primary headaches, such as Migraine and Tension. The cause and cure of Cluster Headache Syndrome are unknown.

Cluster Headache sufferers fall into two categories: Episodic and Chronic. Episodic sufferers experience headaches in clusters for a period of typically six weeks to six months and will go into periods of remissions typically lasting from six months to 3 years. Chronic sufferers experience no periods of remission lasting longer than two weeks in the period of one year.

A CH attack is unilateral (one sided). Pain may begin around one eye, "Like a nail or knife stabbing and piercing" the eye, or as if someone "were pulling out" your eye. It may be accompanied by a tearing or bloodshot eye, drooping eyelid, dilated pupil and nasal congestion or runny nose on the side of the attack. It can radiate from the eye to the forehead, temple, ear, cheek, jaw and neck on the same side. The pain of a CH has been described as piercing or boring and so excruciating that most victims cannot sit still and feel compelled to rock in a chair, walk back and forth, or bang their heads against something.

The pain is so extreme that Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, and the worlds leading researcher on CH has commented, "Cluster headache is probably the worst pain that humans experience. I know that's quite a strong remark to make, but if you ask a cluster headache patient if they've had a worse experience, they'll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight or ten weeks at a time, and then have a break. It's just awful." Most CH victims experience these attacks 2 to 10 times daily. The pain quickly escalates from no pain to unbearable pain within five minutes. The pain subsides in the same manner. Attacks can last anywhere from 30 minutes to 3 hours or more.

A curiosity of Cluster Headache Syndrome is that both the individual attacks and the clusters themselves can have an almost metronomic regularity - attacks starting at a precise time of day or season are typical. Doctors believe the source of CH is keyed to the hypothalamus which regulates sleep and pain in the body.
It is a headache, in that the pain is in the head, but that is really where the similarity ends. The name itself leads to confusion, as people immediately think of it as something that can be cured by taking a pill, or by thinking of it as a migraine.

How is your friend affected?

This will vary enormously, and, surprisingly, you will almost certainly never witness a full-blown attack. Seeing someone in that state can be quite terrifying. Sufferers are reluctant to allow anyone else to see them at that point, for three main reasons: first, with family and friends, it is simply to avoid them having to see something which, as they are powerless to help, is very upsetting; second, no-one is keen to be seen in a state where they will scream, cry, pace, hit their head repeatedly and generally be uncontrollable - dignity does matter; and three, coping with the attack is wearing in the extreme, and having to cope with other people around is just not possible for most.

In addition, the cumulative effects of repeated attacks and the medications used can lead to tiredness, irritability and an occasional loss of temper. Depression is quite common. Some individuals lose their jobs, and even partners and homes. That said, because having to cope is part of the nature of the condition, most sufferers will "get along" - they have to be quite strong to survive.

Most can be helped by medication, but, because the cause of the illness in unknown there is no cure. The medications often mask or reduce the symptoms, but do not remove them. Many of the medications have difficult long and short-term side effects.

What can you do to help?

When an attack hits, there is nothing anyone can do, unless the sufferer requests help. The best thing is to stay well away. Afterwards, a quiet word is probably a good idea. You may find the sufferer will talk about what he goes through if you ask - he may appreciate the opportunity to explain. Sympathy will be appreciated, certainly, and, if you are working with someone, make sure that you do not give any reason for them to think that you blame them for the inconvenience they may have caused. Most will be keen to get on with things, and repay any efforts you have made to cover for them, if the nature of the work allows.

Some misconceptions:
  • "I had one of those once" - no-one ever has one cluster headache
  • "My aunt has migraine too" - migraine is nothing like a CH.
  • "Can't you just take a tablet and lie down?" - No is the answer, most sufferers cannot lie down.
  • "I know an acupuncturist/herbalist/allergist/chiropractor/spirit medium/etc who cures cluster headaches!" - No offense, but that's not how this condition works.

To learn more about this disorder, you may wish to visit the following links:
  • Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  • Cluster Headaches Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Thank you for supporting your friend. This can be a very frightening disease and your encouragement and understanding is an important and vital factor in helping to manage CH.

Original draft of this letter written by Simon Bower for Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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Re: Letter to Employers & Colleagues
Reply #92 - Jul 2nd, 2014 at 10:37am
 
Unfortunately when I click on the link for Simmons letter, I get a page not available error from the Cluster Headache Support Group web-site. I would really like to see the letter. Any suggestions?
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Re: Letter to Employers & Colleagues
Reply #93 - Jul 2nd, 2014 at 8:32pm
 
Biker Corny wrote on Jul 2nd, 2014 at 10:37am:
Unfortunately when I click on the link for Simmons letter, I get a page not available error from the Cluster Headache Support Group web-site. I would really like to see the letter. Any suggestions?


The post above this one has the full text of the letter.
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