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Topic: New Aussie Clusterhead! (Read 4685 times) |
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ouchykitty
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New Aussie Clusterhead!
« on: Jan 7th, 2003, 4:25am » |
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Well hello! I just thought I'd post a note to say that I'm so relieved to find this place! Here I was thinking I had some weird undiagnosable brain thingy going on...and that I was the only one. Yay for finding other people like me! 
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Mr. Happy
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Re: New Aussie Clusterhead!
« Reply #1 on: Jan 7th, 2003, 4:41am » |
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Ouchy,
I wouldn't go so far as to say this Brain Thingy is fully diagnosed......but there has been some progress made, and a lot of the folks here have made it. Hope you find some tips that help you treating your Headaches. If you haven't heard about Oxygen, hold on to your knockers, er...knickers. Then there's the Verapamil crowd. The Triptans have a big following. Prednisone is well liked by many. Hopefully, you'll find something that works for you, unless you've already done so...in which case, SHARE! :)
What's in YOUR meds basket?
A most humble welcome.
Down, Under, Over and Out,
RJ
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| « Last Edit: Jan 7th, 2003, 4:49am by Mr. Happy » |
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ouchykitty
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Re: New Aussie Clusterhead!
« Reply #2 on: Jan 7th, 2003, 5:00am » |
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Hullo Mr Happy!
Yeah, I got the impression that everyone has their tried and true ways of dealing with their respective "Beasts". I was only very recently "diagnosed" with these nasty headaches, and the doctor put me on something called Deseril....which initially resulted in making me quite loopy. I work on the phones, you see, and I was seeing weird swirly aliens on my monitor from the "ergot" componant of this drug. The odd psychadelic effects still haven't worn off completely - though I must be slightly tolerant enough for them to have started to do so.
Tell me, does anyone else have huge amounts of difficulty explaining this ailment to their bosses? My attacks are always when I'm at work, and they think I'm a nut case.....
Oh, and I haven't tried Oxygen. Sound like it might be worth a try!
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Mr. Happy
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Re: New Aussie Clusterhead!
« Reply #3 on: Jan 7th, 2003, 5:23am » |
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Over on the left side, you'll see a button for "Medical Info". Look for the drug called Methysergide....that should be your pill de jour - Deseril. Lots more are listed. Read, read, read.
Oxygen is considered by many to be the first choice in aborting CH's. You'll want to look into this immediately, if not sooner.
As for your employer, the folks at OUCH have a form you may find useful:
http://clusterheadaches.org/resources/emp.htm
Did I mention Oxygen,
RJ
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| « Last Edit: Jan 7th, 2003, 5:24am by Mr. Happy » |
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ouchykitty
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Re: New Aussie Clusterhead!
« Reply #4 on: Jan 7th, 2003, 5:54am » |
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Thanks!
You've been ever so helpful. 
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StanTheMan
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Re: New Aussie Clusterhead!
« Reply #5 on: Jan 7th, 2003, 8:35am » |
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Welcome Ouchy!!
Do stick around! We can always learn from each other.
Sorry the beast has been knocking you around but glad you found us.
You are truly among friends here.
Regards! 
StanTheMan
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"All the days of the afflicted are bad, but the cheerful heart has a continual feast." - - - - - Proverbs 15:15
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Woobie
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Re: New Aussie Clusterhead!
« Reply #6 on: Jan 7th, 2003, 8:43am » |
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Hi there!!
Just wanted to say hello !!
What's the weather like down there now?? I think I would probably rather be there than in northern Illinois right now.. UGH!
Welcome ....
Tina
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echo
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Re: New Aussie Clusterhead!
« Reply #7 on: Jan 7th, 2003, 9:00am » |
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Welcome to the MB ouchkitty. As far as explaining these little jewels to management, it's always a coin toss. I've had many many bosses over the last 40 working years and to my recollection only 4 or 5 have been truly understanding. Most have been the common everyday anal opening about it.
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catlind
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Re: New Aussie Clusterhead!
« Reply #8 on: Jan 7th, 2003, 9:10am » |
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Welcome aboard ouchykitty, sorry you had the need to find us, but we are a wonderful family (if not a bit insane) once you get to know us! Grab an oar and start rowin.
The OUCH boat is headin towards big things! (we hope)
Oxygen is one of the most exalted treatments for this beast and it's been a godsend for many if you use it properly. You want to be sure you have 8-12lpm and a NON rebreather mask.
There is more info on this site than anywhere else, and probably more than your own Doc knows.
Read read and read some more.
Charlie has a link for a letter to give to friends, employers and coworkers, however I'm currently too lazy to find the link LOL. I'll look it up and get it for you
Cat
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If yer gonna be stupid, ya gotta be tough
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ouchykitty
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Re: New Aussie Clusterhead!
« Reply #9 on: Jan 7th, 2003, 4:15pm » |
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Hey again all!
Thanks again for the warm welcome. I've found that letter of explanation for employers (Lets hope Mr. Bransen is feeling expansive when he reads it), so thankyou very much to those of you who kindly pointed it out!
One thing I wanted to ask, has anyone else had some weird psychotropic reactions to Deseril? It's turned me into a space cadet, but at least I'm sleeping well.
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Silver_Dolphins
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Re: New Aussie Clusterhead!
« Reply #10 on: Jan 7th, 2003, 4:53pm » |
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Welcome Ouchy.
I hope you find as much help here as I have.
PFDAN
Silver Dolphins a/k/a Barry
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domm
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Re: New Aussie Clusterhead!
« Reply #11 on: Jan 7th, 2003, 5:15pm » |
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ouchy - welcome to the board. Good advise above from others. Have you tried using any preventatives? Verapamil works for me and many others to keep the beast tamed completely, thereby avoiding the need for an abortive.
Good luck with your boss
domm
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Ueli
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Re: New Aussie Clusterhead!
« Reply #12 on: Jan 7th, 2003, 5:29pm » |
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Hi Ouchy,
Methysergide (Sansert in the US, Deseril elsewhere) is an ergot derivative and as such has a tendency to cause hallucinations. (In olden times whole villages went crazy on poisoning from ergot, a mold growing on rye [St. Anthony's Fire]). A few month ago a guy here reported too some hallucinations from methysergide.
The problem will dissolve on its own, since Novartis has discontinued to production of methysergide. 
PFNADs
Ueli
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ouchykitty
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Re: New Aussie Clusterhead!
« Reply #13 on: Jan 7th, 2003, 5:58pm » |
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Hi Ueli!
Yes, I did some research into this drug of mine, and some of it included seeing green and red swirly things and hearing frieght trains in my head...whoo-hoo!
I've known about Ergot for a while, in my studies I've come accross it as being responsible for mass hysterias and weird goings on in Europe. One hypothesis is that it was also responsible for the goings on in Salem, all those years ago.
If what I'm seeing is anything to go by, then I don't blame the towns folk for getting a bit riotous!
Work is about to fire me, as I only just started and am now taking every other day off. And I think everyone else thinks I'm quietly slipping myself some LSD in my morning cup of tea!
whaaa....
cheers,
Kitty
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BobG
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Re: New Aussie Clusterhead!
« Reply #14 on: Jan 7th, 2003, 10:11pm » |
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This may be the letter catlind was referring to
Simon’s (OUCH/UK) letter to employers and colleages
http://www.ouch-uk.org/ch/note_colleagues.cfm
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| « Last Edit: Jan 7th, 2003, 10:12pm by BobG » |
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cootie
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Re: New Aussie Clusterhead!
« Reply #15 on: Jan 7th, 2003, 10:28pm » |
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Hi ouchy.....Austrailia is onea my most favorite places......jus wanted ta say hey.....or is it OIY....Pam
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Charlie
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Re: New Aussie Clusterhead!
« Reply #16 on: Jan 7th, 2003, 10:50pm » |
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Welcome aboard and look around. Among our silliness, you'll find some good info. I can't speak on drugs but here is another non-invasive thing that worked for me:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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catlind
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Re: New Aussie Clusterhead!
« Reply #17 on: Jan 8th, 2003, 4:35pm » |
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Bob, yes that's the letter I was referring to. My connection is finicky at best right now, so when I tried to find it to post it, I couldn't get the website up.
*sigh* I really hate puter gremlins.
Hope things are working out better for you ouchykitty
Cat
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Mark C
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Re: New Aussie Clusterhead!
« Reply #18 on: Jan 8th, 2003, 4:58pm » |
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G-Day Ouchy,
Welcome to the board. Good luck with the boss thing, I am very lucky to have an understanding boss, this time. The HA suck but this place makes it just a little easier to cope, with or without pain.
Mark
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2late
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Re: New Aussie Clusterhead!
« Reply #19 on: Jan 8th, 2003, 5:42pm » |
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welcome to the board ouchy! my boss doesn't understand either, his answer when i tried to explain it to him was i get " headaches" to, it shouldn't compromise productivity. he's real compassionate. oh well good luck & 02 is the best! ..........2late
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ouchykitty
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Re: New Aussie Clusterhead!
« Reply #20 on: Jan 9th, 2003, 4:15am » |
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Thanks everyone, for all your kind greetings! It's lovely to be so welcomed after thinking I was going to have to battle this thing alone....
Big hugs from Melbourne, Australia,
Kitty
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