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Topic: hello first attack (Read 647 times) |
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patch
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hello first attack
« on: Feb 8th, 2008, 6:23am » |
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hello everyone,
So pleased my husband found this web site and can't wait to start reading when my eye stops aching as much.
I just had my first attack of cluster headache ( with a facial droop) on Monday and been in hospital for 4 days, i got out earlier today .
I look like a bruised pin cushion and had so many drugs pumped in me and scans.
I'm very scared it will happen again after reading information on the the internet.
My biggest fear is people thinking i've been sick with just a headache - headache is like been tickled compaired to the pain in cluster headache.
thanks for letting me moan, hope to post and enjoy the forum if you'll have me.
Patch (cos i'm wearing one 
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Life is not measured by the number of breathes we take, but by the number of moments that take our breath away.
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barry_sword
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Mountain Biking Keeps Me Sane
 
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Re: hello first attack
« Reply #1 on: Feb 8th, 2008, 6:37am » |
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Hi Patch, and welcome to Clusterville. Glad your husband found this site as did my wife Angie.
When you are able or ask your husband to read up on the o2 info to your left. 100% o2 at 15 lpm with a non-rebreather mask. Print it off and take to your Doc. o2 works as an abortive for most of us here and must get right on it at the very first sign or twinge of an oncoming hit.
We need to take a preventative also, I take Verapamil which seems to work well for me, but read all you can and do discuss with your Doc what med might be right for you.
Take care and welcome to your new home.
Barry 
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patch
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Re: hello first attack
« Reply #2 on: Feb 8th, 2008, 7:09am » |
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Thanks for the reply and welcome Barry,
Just had a quick read, but we will both have a good read up in the morning as its bed time Down under in the land of Oz, thanks for the tip as I have doctor's appt on Monday.
Good night
Patch
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| « Last Edit: Feb 8th, 2008, 7:11am by patch » |
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Life is not measured by the number of breathes we take, but by the number of moments that take our breath away.
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Bob_Johnson
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Re: hello first attack
« Reply #3 on: Feb 8th, 2008, 8:18am » |
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If you get a firm Dx of cluster on Monday, then it's time to start some organized learning--your best defense against fear and anticipatiory anxiety. Sending along a couple of book titles and two sources of treatment information.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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Bob Johnson
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imfareware
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Hello Everyone!!
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Re: hello first attack
« Reply #4 on: Feb 8th, 2008, 8:24am » |
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Hello, I hope you find a reliever for your pain, try O2. Good luck and hang in there!
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Pain is temporary, Love is Permanent
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Guiseppi
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Re: hello first attack
« Reply #5 on: Feb 8th, 2008, 11:27am » |
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Bob has given you a wealth of information to get you started! Sorry you had to find us but thank goodness you did. If you do end up having cluster headaches this will be your new second home! The good news is you do not have to fear them, knowledge is your friend and there is tons of it here.
Guiseppi
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AussieBrian
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Re: hello first attack
« Reply #6 on: Feb 8th, 2008, 4:28pm » |
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G'day Patch, and welcome to the nut hut. As your new friends have already mentioned it's a rotten condition but not to be feared, only managed. The only known cure is sending beer to the secret address I've just emailed you but otherwise there are plenty of ways to combat the beast.
Best place to start is by finding a doctor who actually knows something about CH or is at least willing to admit he/she knows nothing about it but will find out. It's not a common condition and their entire medical traing includes only eight hours on the subject of headaches.
Next you need to consider a supply of oxygen (O2). Check out the 'oxygen info' button middle-left on your screen and our good mate Mad Barry of Dragon Country took time off from hugging trees and passing water to put together all the info you need from an Oz perspective.
http://mushys.com/kiwi
A headache diary is also handy for many people and you may even care to take part in my survey regarding the increase in frequency/intensity of attacks immediately following a win by those dastardly All Blacks over the gentlemen of our beloved Wallabies.
Knowlege is the most effective weapon you have, so you're in the right place and welcome home.
Cheers and beers,
Brian.
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patch
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Re: hello first attack
« Reply #7 on: Feb 8th, 2008, 6:59pm » |
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hello
Many thanks for all the advice and help. I'm going to start learning and reading more on this great web site soon.
I want to be well prepared for my up coming Doctor's Appointment.
I had a firm DX of cluster headaches from the head of neuro in the Hospital but he did not tell me that it would re occur, I still have aching in my eye, (is this normal?)
I'm finding it hard to type, so sorry if this seems like rambling.
Thanks to everyone for the 02 tips .
I been on 02 in the hospital for the last week, and will be finding out how to get my grubby mitts on some.
I was starting to get upset by being referred to in the hospital as this the lady with headache, and rellies saying
it good news it was only headache, so glad I found somewhere I have new friends who understand me.
Patch
hi Aussiebrian,
I been your wonderful Oz for nearly two years, I'm pommie
but love my Oz, wild horses could not drag back to the UK,
Patch
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| « Last Edit: Feb 8th, 2008, 7:01pm by patch » |
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Life is not measured by the number of breathes we take, but by the number of moments that take our breath away.
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Guiseppi
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Re: hello first attack
« Reply #8 on: Feb 8th, 2008, 7:31pm » |
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Just a quick tip on the oxygen. For us CH'ers, we need to breathe pure oxygen, at a high flow rate, through a 'NON RE BREATHER MASK" Nasal canulas are worthless as are re breather masks. You must make sure only pure oxygen goes into your lungs, no outside air, no rebreathing of the air you exhale!
For me it will knock them out in 6-8 minutes. Yeah, don't you just love "thank goodness you only have head aches, it could be worse!" 
Guiseppi
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imfareware
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Re: hello first attack
« Reply #9 on: Feb 8th, 2008, 7:43pm » |
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on Feb 8th, 2008, 7:31pm, Guiseppi wrote:Just a quick tip on the oxygen. For us CH'ers, we need to breathe pure oxygen, at a high flow rate, through a 'NON RE BREATHER MASK" Nasal canulas are worthless as are re breather masks. You must make sure only pure oxygen goes into your lungs, no outside air, no rebreathing of the air you exhale!
For me it will knock them out in 6-8 minutes. Yeah, don't you just love "thank goodness you only have head aches, it could be worse!"
Guiseppi |
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When I got my oxygen deliverd, they gave me a nrb mask without the flappers, I asked the nurse why the masks didnt have the valves on them, she told me that with the 15PPM regulator, it was against policy to and insurance claims to put them on. I was devistated, not totally thinking as usual with my headaches I logged on.
Someone posted that I should take a rubber glove, cut a circle, poke a hole in the middle, and put it over the vents. DUH!!!
Thank you!! It works! 
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Pain is temporary, Love is Permanent
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Guiseppi
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Re: hello first attack
« Reply #10 on: Feb 8th, 2008, 10:25pm » |
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Someone posted that I should take a rubber glove, cut a circle, poke a hole in the middle, and put it over the vents. DUH!!!
Thank you!! It works!
Damn, CH'ers are an ingenius lot!!
Guiseppi
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DennisM1045
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Re: hello first attack
« Reply #11 on: Feb 9th, 2008, 7:48am » |
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on Feb 8th, 2008, 7:43pm, imfareware wrote:
When I got my oxygen deliverd, they gave me a nrb mask without the flappers, I asked the nurse why the masks didnt have the valves on them, she told me that with the 15PPM regulator, it was against policy to and insurance claims to put them on. I was devistated, not totally thinking as usual with my headaches I logged on.
Someone posted that I should take a rubber glove, cut a circle, poke a hole in the middle, and put it over the vents. DUH!!!
Thank you!! It works! |
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Good tip. I've also used a hot glue gun and scotch tape in a pinch.
Welcome to your new home patch! The welcoming committee has given you some good advice. Once you've poked around, please ask any questions you still have. The treasure of this place is the vast experience of its members. You'll be hard pressed to find a question that no one here has experience with.
I see our local kiwi has welcomed you in your native tongue I'm not sure who the wallabies or all blacks are but I never get tired of reading Aussie Brian's attempts to get newbies to send him beer. It just never gets old Brian 
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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