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Topic: Hiya from England (Read 362 times) |
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michael
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Hiya from England
« on: Apr 23rd, 2007, 1:44pm » |
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Hi all. I'm Mike. I'm 54 years old and have suffered from cluster headaches since I was 14. All through the 70's and 80's I was treated for sinusitis, with antibiotics, pain killers, x-rays, menthol inhalation and even a sinus washout. It was even suggested that I had arthritis of the facial bones. In the late 90's I found an article that described exactly what I had. I took this to my doctor and eventually got hold of the imigran injections. These have been a life saver, removing a hit within 10 mins without fail. Unfortunately I can't have enough. I've tried oxygen but I was only given 4L per min although it still had some effect. I have just finished a 10 week cycle and 2 weeks ago finally got to see a neurologist who specializes in this condition. He has set me up on steroids, verapimal, and the correct oxygen for the next cycle, probably in a years time. I found this site about a month ago and it has been of absolute amazing help to me through my last cycle, just reading messages and knowing I'm not alone.
Like I said, I have thankfully just come out of cycle, so if all goes well I am free for a year. However I won't be leaving this site. I will be here to offer support to any of you who are in cycle and feeling low. There's no better support than from someone who knows what you are going through.
Bye for now, Mike
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Guiseppi
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Re: Hiya from England
« Reply #1 on: Apr 23rd, 2007, 1:50pm » |
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Mike, welcome to the board. It's a damned shame it took so long to get the correct diagnosis........Arthritis of the facial bones  I hadn't heard that one yet!
I'm hoping the oxygen proves as much of a success for you as it was for me. And happy to hear you're sticking around, the more oars the easier it is to move the boat!
Guiseppi
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Bob_Johnson
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Re: Hiya from England
« Reply #2 on: Apr 23rd, 2007, 2:05pm » |
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Hope you found the OUCH button (left) and found your local group.
Also see: http://WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options. (2/07: a bit dated but still worth exploring.)
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Bob Johnson
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Yorky
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e: Hiya from England
« Reply #3 on: Apr 23rd, 2007, 2:09pm » |
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hi mike
i had that "arthurigtus to the face" diagnosis
seemed plausable , at the time ?
glad to hear..your pf..
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LeLimey
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Re: Hiya from England
« Reply #4 on: Apr 23rd, 2007, 3:19pm » |
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Hi Michael
I'm in Nottingham too and see Dr Evangelou at QMC for CH. I like him, he puts up with me 
You definitely need to try o2 at 15 LPM and since its so much cheaper than any other treatment your doctors shouldn't have a problem with this. Its centrally funded too so it won't cost them a huge chunk of budget in the way the Imi jabs do. If it IS Dr Evangelou you see BTW I just taught him how to fill on an O2 order form a couple of weeks ago!
There are alot of other home remedies that its good to know such as ice packs or heat, coffee and high energy drinks like red bull - all are excellent stand by's.
Looking forward to getting to know you better - think I'll have toarrage another local meet and greet to get us all together!
Take care
Helen
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michael
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Re: Hiya from England
« Reply #5 on: Apr 23rd, 2007, 5:27pm » |
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Hi Helen. Yes, it was Dr Evangelou I saw. I was referred to him because he had given a seminar on ch at my doctors surgery so they were aware of him. He is the first person I have met in the medical profession that understands.
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LeLimey
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Re: Hiya from England
« Reply #6 on: Apr 25th, 2007, 3:46am » |
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Oh I am glad you got to see him - he's really good, he listens, he does his best to find what is going to work for you and if he needs to consult others for help he does - you can't get better than that!
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Callico
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Re: Hiya from England
« Reply #7 on: Apr 27th, 2007, 12:46am » |
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Hi Mike!
Welcome aboard! Glad you are PF, and that you will be sticking around! To many leave when the pain does, and the rest of us can use the support all the time. there are some wonderful people on here even when PF and they make a major difference for the rest of us. Also, it will give you the opportunity to read up on a lot of stuff to prepare you for the next go around, (may it never come!)
Jerry
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ClusterChuck
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Re: Hiya from England
« Reply #8 on: Apr 27th, 2007, 3:07am » |
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Hi, Mike!
Welcome to the loony bin!
Sorry you have to be here, but glad you found us ...
Now, a bit of a warning, seeing you are on THAT side of the pond ... Watch out for that Helen gal ... she has been known to get a bit fiesty at times ... She used to be a beater on the local quidditch team, but they tossed her off for excessive force ... So ever since she has been trying to beat on us guys .. WATCH OUT for her!!! LOL
We PRETEND to love her ...
Chuck
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artonio7
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Re: Hiya from England
« Reply #9 on: Apr 27th, 2007, 3:16am » |
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Hi Mike!
This place is a heavenly oasis in the pits of hell we've come know as cluster headaches. We all have our little clouds. We do best when we are at our worst. You can have any cloud you see available. Just be sure to come often and stay when you are pain-free... we help each other and ourselves by paying it forward.
Oh... and Chuck is evil. 
with warm regards,
Tony
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| « Last Edit: Apr 27th, 2007, 4:32am by artonio7 » |
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michael
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Re: Hiya from England
« Reply #10 on: Apr 27th, 2007, 12:53pm » |
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Hi Chuck
Good to hear from you. It seems that Helen is not only from the same side of the pond, she's also from the same town (Nottingham). I'm looking forward to meeting her one day. Never met another clusterhead.
Mike
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LeLimey
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Re: Hiya from England
« Reply #11 on: Apr 27th, 2007, 1:16pm » |
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Well that sounds like a cue for me to organise a meet and greet doesn't it?!
I'll get in touch with Dr E and get him to publicise it amongst his patients so how about if we organise one for June?
I'm more than happy to meet up or phone before then if you want to 
Helen
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michael
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Re: Hiya from England
« Reply #12 on: Apr 27th, 2007, 3:46pm » |
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Hi Helen
June would be fantastic. I would be glad to help if I can.
Email me on michael.fisher@ntlworld.com and we can swap numbers.
Mike
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LeLimey
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Re: Hiya from England
« Reply #13 on: Apr 27th, 2007, 3:59pm » |
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job done!
How come your addy is still ntl - thought they had been corrupted by virgin?!
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michael
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Re: Hiya from England
« Reply #14 on: Apr 27th, 2007, 6:12pm » |
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Hi Helen
Got your message. Sorry it bounced, gave you a duff address. Should have been michael.fisher33@ntlworld.com
Must have had a brain malfunction. 
Email address has stayed the same even though it is now virgin.
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