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sheena.t

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New to computer - not new to CH
Dec 22^nd, 2008 at 2:46pm

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Hi there
I'm not sure if i'm doing this right so please bear with me if i mess up and don't know the computer jargon.
I've had this 'thing' for more than 15 years now and I have been in a cycle for over two years after a wonderful break of 10 months - I really thought i had recovered???
I find it difficult to talk about this 'thing' to others cos i end up getting advice about how they deal with their migraines. Others just don't believe that the pain is 'that bad'.
I really thought i was alone until someone suggested i have a look for more info on line - i've only used the computer to send emails and didn't think anyone would want to talk about their problems... And i found this site!!!
I might babble a bit till i get used to talking without waiting for a judgemental;snotty answer. This has made things seem easier to deal with now. I thank you for making my day worth more than a dread of another night of waiting for the next one!!! Cheesy

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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: New to computer - not new to CH Reply #1 - Dec 22^nd, 2008 at 2:52pm Quote: I might babble a bit till i get used to talking without waiting for a judgemental;snotty answer Never here..... BTW, I used to get those types of headaches. Have you tried taking 2 aspirin and lying down? Just teasing.. yes we understand. Tell us a little about what meds you are on etc.
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sheena.t

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Re: New to computer - not new to CH
Reply #2 - Dec 22^nd, 2008 at 3:15pm

Well apart from the aspirin and lying upside down with my head tilted to the sun Roll Eyes

I have O2 and sumatriptan injections. My doctors have all experimented on me many times and nothing else does anything to me. I don't care a hoot that i might be o-d ing on the injections cos i'd cut off my hand if someone told me it would take the pain away...

Check me out? i'm ranting already, this can only be good for me,being able to have a good old moan without having someone tutting & rolling their eyes in the background Cheesy

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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: New to computer - not new to CH Reply #3 - Dec 22^nd, 2008 at 3:26pm Well, welcome and just read, read, read and you will get a feel for the place. 02 and triptans injections appear to be the gold standard available right now. I am glad they work for you. Hopefully you can pick up a few other helps as well, but it sounds like your doc has you on the best of the meds now.
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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: New to computer - not new to CH Reply #4 - Dec 22^nd, 2008 at 3:32pm Welcom Sheena! Since you wrote about overdosing Imitrex... check the Imitrex Tip on the left. Oliver
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david martin

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Re: New to computer - not new to CH
Reply #5 - Dec 22^nd, 2008 at 5:23pm

Hello! I am new here to,But not to this beast.I had a 2 year break but now they are back.Just on the other side.I to know that other people dont understand the amount of pain you are in.I am 53 years old and have these things since I was 16.I found a few things that help me some if I dont have 02 or Imitrex. Like in the winter I can go outside in the cold air.sometimes my wife will fill a bowl with water and ice and with a washcloth rub my back,neck face and chest.She tries to get me to go to the ER.But there is no need to go.By the time you drive up there and sit waiting to been seen.The pain is about gone,then the doctor looks at you like you just want to get drugs.I know sometimes I scare my wife.I have done some pretty strange things to ease the pain.Like twisting a rope around my neck to slow the blood flow down.
I think of myself as a pretty tough guy but this beast makes me cry like a baby.

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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: New to computer - not new to CH Reply #6 - Dec 22^nd, 2008 at 5:39pm Welcome David - hopefully this site will provide a lot of good info for you. I'm a supporter myself, my husband is the clusterhead. He uses a combo of O2 and lithium, of course working with his neurologist. Good luck reading around and welcome.
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Garys_Girl

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Re: New to computer - not new to CH
Reply #7 - Dec 22^nd, 2008 at 6:11pm

You'll get the hang of it!

There's a LOT to learn here - don't assume your doc (docs) have tried everything. ESPECIALLY your 02! If you tried oxygen to abort the attacks and it didn't work, were you using at least 15 litres per minute? And the type of mask you use makes a HUGE difference! They recommend a non-rebreather mask - but click on the "oxygen info" link (in yellow) on the left, and it'll take you to a site where you can purchase the best mask available. 02 working at home may abort quicker or cut down the amount of imitrex you need to use daily. Or just read, read, read and you'll stumble over the info everywhere! Grin

Welcome!

Laurie

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This is enough already

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BarbaraD

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Re: New to computer - not new to CH
Reply #8 - Dec 23^rd, 2008 at 7:11am

Welcome to Clusterville and all us Clusterheads here...

Most of us are O2 pushers and will harp on it over and over. If used properly (for most of us) it will abort a CH in the least amount of time. I agree that you MUST have the proper mask and a high flow rate. It's useless and won't work if you don't.

Then there's Red Bull (or another energy drink with at least 1000mg of Taurine in it). Chug a can of that (tastes terrible, but....) at the onset of a HA and suck some O2 and it seems to work faster.

Read the tips on the trex. For some reason it doesn't take as much trex for us CHers as it does for migrainers. Haven't figured that one out yet, but it's just another mystery. But the good news is - makes the trex go a lot further and is better on the old heart.

Melatonin at night for those night hits. I've been pretty well free of them since I started taking it (12-15mg) it years ago. Gets you thru the REM sleep where the Demon likes to hit.

Go ahead and vent, ask questions, whatever. There's always someone here 24/7. Someone is always awake in Clusterville.

Hugs BD

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What don't kill ya, Makes ya stronger!

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Guiseppi

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Re: New to computer - not new to CH
Reply #9 - Dec 23^rd, 2008 at 10:42am

i'm ranting already, this can only be good for me,being able to have a good old moan without having someone tutting & rolling their eyes in the background

Tutting and moaning??? What's a tutt?? She talks like that Lelimey chick!!! Grin

Good to have another from your side of the pond. I'm so glad you found us. I've lost track of the number of helpful suggestions I've been given by well menaing people. Someone started a thread a while back on all of the stupid things people said trying to be helpful! Some were hysterical.

WE DO understand, welcome home.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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sheena.t

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Re: New to computer - not new to CH
Reply #10 - Dec 24^th, 2008 at 6:42am

Thank you everyone for all the input. I cannot believe there are so many of you out there, this has been the best christmas present for me - what a weight has been lifted from my mind. Smiley

I know it's not a good thing that anyone has the same pain but it's wonderful to have found you all. I've been on this site every day since i joined and have not tired of reading your notes and tips,
thank you... thank you.... thank you.
sheena

Seasos greetings to you all Smiley

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: New to computer - not new to CH Reply #11 - Dec 26^th, 2008 at 10:32am Sheena, there's many diagnostic tools available regarding this dread condition but it was Guiseppi gave you the best. Go to the Cluster Headache Specific board (just above this one) and look for "Dopiest responses to CH". It's worth your time.
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sheena.t

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Re: New to computer - not new to CH
Reply #12 - Dec 27^th, 2008 at 3:23pm

Thanks brian, I've had a giggle over the comments and contributed my best 'dopey response'. I am still glad i found you guys, does anyone else find that the reactions from everyone is very similar?
I was told by Dr Goadsby that was how he diagnosed CH in the initial conversation. Apparently everyone describes the 'beast' in exactly the same way !!! I almost choked when he said it was 'text book' I thought he was saying that I had gotten the symptoms out of a book and was just repeating them. Shocked

Since then whenever I've seen anything about CH i feel that i could've written the script for it Grin

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Jonny Ex Member	Re: New to computer - not new to CH Reply #13 - Dec 27^th, 2008 at 6:20pm sheena.t wrote on Dec 22^nd, 2008 at 3:15pm: My doctors have all experimented on me many times I really thought I could do this.....LMMFAO Nope, aint gonna touch it......LOL
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: New to computer - not new to CH Reply #14 - Dec 27^th, 2008 at 6:32pm I really thought I could do this.....LMMFAO Nope, aint gonna touch it......LOL I stand agape and in awe of your restraint Jonny!!! Joe
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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: New to computer - not new to CH Reply #15 - Dec 28^th, 2008 at 1:37pm Guiseppi wrote on Dec 27^th, 2008 at 6:32pm: I stand agape and in awe of your restraint Jonny!!! Joe I don't - it's the kinder gentler Jonny we now know and love.
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sheena.t

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Re: New to computer - not new to CH
Reply #16 - Dec 29^th, 2008 at 8:52pm

I stand agape and in awe of your restraint Jonny!!! Grin

Joe [/quote]

I don't - it's the kinder gentler Jonny we now know and love.
[/quote]

I can see the kind of restraint I need to use when I'm posting here guys, I'll be more careful how I explain things now. Smiley

But (as the saying goes) I know it's done in the best POSSIBLE taste Smiley

LMSAO
sheena

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