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Topic: Newly Diagnosed. (Read 415 times) |
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spicer
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Newly Diagnosed.
« on: Nov 5th, 2004, 11:15am » |
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I have just been diagnosed as a cluster sufferer after 5 or so years and being diagnosed as havinfg sinusitus and prescribed Antibiotics - which obviously do nowt to cancel out CH's!
It is a releif to actually find out what I have and see that there are similar sufferers out there and that Im not just crazy when this thing decides to come along out of nowhere and knock me for six.
I usually get one bout a year around October/November time and they usually arounf for about a month, with one 'attack' every evenbing about 10 pm.
All the usual symptoms: watery painful eye, pumping pain behind the eye, hot flushes, pacing about and feeling like im going gcrazy etc etc etc.
I find that the comdination of sniffing bowls of steaming water with a little anticongestant fluid (such as Vicks/Olbas Oil) combined with using cold ice packs can help speed up the flow of fluid from the head/eye socket areas out of the nose.
Good luck to all!!!
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unsolved1
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Welcome to the board. Sorry for what brought you here.
PF Wishes,
Unsolved
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nani
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Re: Newly Diagnosed.
« Reply #2 on: Nov 5th, 2004, 11:55am » |
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Welcome and I'm sorry you're here. You will find a great deal of info here and on the OUCH site. Look at the links on the left. Good luck and I hope you find some relief soon. 
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Others may come and go, but MY power is MINE.
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sandie99
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Re: Newly Diagnosed.
« Reply #3 on: Nov 5th, 2004, 12:36pm » |
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Spicer,
welcome to CH family!
I am so glad that you finally got the right diagnosis! I recall very well what it was like to live with horrible pain without the knowledge of what it is.
I know from my own experience that there are GPs in UK who have absolutely no idea what CH is and at least one neuro.
I hope that you have also meds which work!
Wishing lots of PFdays,
sandie99
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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ArCane
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Onward through the fog
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Re: Newly Diagnosed.
« Reply #4 on: Nov 5th, 2004, 1:04pm » |
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Welcome to the boards. Sorry your here but glad you are. PF vibes heading your way.
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LeLimey
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Re: Newly Diagnosed.
« Reply #5 on: Nov 5th, 2004, 3:22pm » |
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Hi Spicer
Nice to meet you and welcome to the board! I too have done the sinusitus thing and I know what you mean about olbas oil! One way I have of coping with heavy shadows is to spread tiger balm around my left eye in a wide "O" forehead, temple, bridge of nose and cheekbone. Its amazing how the fumes can help! Have you any other meds? Check out the OUCH UK website too and print off some stuff for your doctor. I'm taking imigran injections and O2 and I have to say that the oxygen is simple the best thing ever 
There is doctors info on there too and its well worth a look. The stuff is practically the same as here but you know how some doctors can be.. there is more chance of him listening to info from a UK website!  
Read as much as you can on both websites, there is a great wealth of info and as I'm sure you have already noticed.. you aren't going to meet a nicer bunch of people!
I hope you get pain free soon, let us know how you are getting on please!
Helen
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spicer
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I love YaBB 1G - SP1!
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Re: Newly Diagnosed.
« Reply #6 on: Nov 8th, 2004, 4:49am » |
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Hi All - Many thanks for the positive feedback and I am really glad to say that after One month of solid pain I have finally had a whole weekend without any pain at all  I can feel that the latest CH bout is now well on its way into its dark corner where it hides (until next time).
For the record I was prescribed (by a Harley Street Neurosurgeon) Inderal, which is a form of a Beta blocker and I personally dont think it helped reduce the CH's at all. I would like to be prepared for next time the CH's return by keeping some CH 'weaponry' ready in the cupboard, so I have another appointment this Wednesday and want to mention Sumatripan and/or Verapamil.
Any personal experiences on these at all anyone
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LeLimey
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Re: Newly Diagnosed.
« Reply #7 on: Nov 8th, 2004, 8:18am » |
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I'm taking imigran (sumitriptan) injections and these work very well.. limit of two a day BUT see the button for imitrex tip on the left !! Very useful information.
I also have O2 and you need to look that up on the OUCH UK board to get the info you need regarding regulators etc - look at the topic on there marked as CD Oxygen, they are cylinders with integral regulators which is a really good way of trying oxygen to see if it will work for you.
Hope this helps!!
Let us know how you get on
Helen
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