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Title: Ingenious UK Sufferer Post by ben_uk on Mar 22nd, 2005, 2:45pm Hi all, I'm a life long sufferer and I've lurked here for years. I thought it was time to introduced myself. My name is Ben. 46. 22 years married to Jane. We have two children :- Hannah, 12. ECH. (The fashion queen). and Matthew, 10. (The maths wizard). We live on "the English Riviera" in Eastbourne, "the sunshine capital of the UK." From a very young age (8), I was wrongly diagnosed as acute chronic migraine and prescribed Phenobarbitone! At 25 again wrongly diagnosed as suffering Trigeminal neuralgia! Finally and with many thanks to the eminent Prof. Takahashi, Tokyo university Japan, at aged 30 I was given the correct diagnoses of what was then ECH. I have been CCH for over 10 years now. I am Prof. Goadsby's patient #3 I was the first to undergo his pioneering experiment using PET. that determined activity in the SCN hypothalamus under Nitro bomb inducement. Using the nav bar on the left, click on to "headache links" then under "cluster news" click on to "BBC story about Dr Peter J Goadsby". There under "Revolutionary discovery" you will see a PET brain scan image showing a hypothalamus glowing like a nuclear melt-down, that's me! Some here, will already know me from OUCH UK and CB. Thank you all for all your post's over the years. They have entertained, amused, informed,and often confounded me on the many long dark nights of the soul that I have endured. I have an intimate relationship with O2 and I'm looking forward to corresponding on this subject. I trained through DAN, The Divers Alert Network. as First Responder - CPR - Oxygen Therapy - AED. O2 free flow and PPV ( positive pressure valve ). AED O2 assist. I am certified in Advanced Oxygen Use, by PADI, Professional Association of Diving Instructors. Unfortunately I have a bit of a reputation for dropping threads that I have started, I'll try my best for you all. :oBen |
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Title: Re: Ingenious UK Sufferer Post by sandie99 on Mar 22nd, 2005, 2:56pm Hi Ben! Warm welcome! :) PFdays, Sandie |
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Title: Re: Ingenious UK Sufferer Post by seasonalboomer on Mar 22nd, 2005, 2:56pm Got any good diving off of the English Riviera? I'm an "open water" level diver and am glad to meet your acquaintance. Ever dove while in "cycle" ? Any effects of the pressure changes? I've been lucky to never be in cycle for a dive trip. Scott |
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Title: Re: Ingenious UK Sufferer Post by ben_uk on Mar 22nd, 2005, 3:32pm Thanks Sandie, Hi scott, It's much too cold around here, only the hardy and foolhardy go under this time of the year. There are a few wreaks but tides in the channel are treacherous. I'm trying to get my instructors ticket but unfortunately the powers that be have a problem issuing one to a non diver. Since turning Chronic I can't get insurance to dive. Their main beef is that I use O2. Their protocol is for those who suffer with respiratory problems. I've had 3 successful goes at aborting attacks in a hyperbaric chamber, wish I had one at home. :oBen |
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Title: Re: Ingenious UK Sufferer Post by firebrix on Mar 22nd, 2005, 4:32pm Hi Ben and Welcome! Good to meet you at last! We have "met" your hypothalamus, but it's great to meet YOU! You're a brave man. I have a question about oxygen and as you seem to have trained with experts maybe you could answer this? Mopar found that O2 left unused for several months while he was on prednisone didn't seem to work when he tried to use it. When he took the huge tank to the hospital for a re-fill he mentioned this and was told by the stores man that O2 loses it's "go" when stored for any length of time and should not be used. This didn't sound right, yet the new, refilled tank worked well. I googled for hours, but could find no references at all about it. Can you advise on this please? Happy days to you and your family firebrix |
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Title: Re: Ingenious UK Sufferer Post by pubgirl on Mar 22nd, 2005, 8:07pm :-* Ben is my hero! 4 attacks last night Ben, but all aborted in less than 5 mins. Life is rosier thanks to you. My husband thinks you're pretty cool too. W the B |
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Title: Re: Ingenious UK Sufferer Post by ben_uk on Mar 23rd, 2005, 9:20am Thank you Wendy I'm blushing. Hi firebrix, Re "O2 loses it's go" This phenomena has been suggested before so there might be something in it. I've never encountered it myself though. I contacted CH. WWW.Capital Hyperbarics.co.uk Capital Hyperbarics provide a 24 hour NHS (UK National Health Service) emergency recompression service for London and surrounding areas. The official word from them is no. So long as the cylinder is medical grade, has not been compromised and there is no third element involved :- O2 can not degrade in the cylinder. I asked around and there seems to be no info on this, only one person had anything to say concerning welders O2 :- "Old O2 can smell but is still usable" I have laid down a CD (UK portable size) vintage 20:05:03 Expiry date 19:05:06 for testing. It's a lightweight plastic cylinder so the effect might not be the same as with the standard cylinder. We shall see. :oBen |
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Title: Re: Ingenious UK Sufferer Post by LeeS on Mar 23rd, 2005, 10:15am Hi Ben - good to see you posting 8) How's the head? -Lee |
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Title: Re: Ingenious UK Sufferer Post by firebrix on Mar 23rd, 2005, 5:36pm Thank you Ben! firebrix |
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Title: Re: Ingenious UK Sufferer Post by ben_uk on Mar 23rd, 2005, 9:27pm Hi ya Lee mate, I'm still PF (<- love saying that) Fanx for the info you sent. I'm working on it. :oBen |
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Title: Re: Ingenious UK Sufferer Post by LeeS on Mar 29th, 2005, 11:49am on 03/23/05 at 21:27:51, ben_uk wrote:
I love hearing people say that 8) -Lee |
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