Royster

I SHOW THEM THIS AND EXPLAIN IT GOES BEOND THE KIP SCALE SOMETIMES WHEN THE BEAST IS OUT TO DESTROY YOU

Great interview

bleach is definitely my worst even if I've been lucky enough not to have an headache that day, bleach will bring one on in minutes

Thank you, yes it looks the business so much better than our u.k versions as never helped me. I'm so looking forward to giving it a go

Hi is this the kit most of you use in the community? http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

Thanks Tony, I'll look more into it, I'm a bit desperate I might put myself up for any future trials, and I here the women are beautiful

Where is this place??

Spiny, thank you for all that information and reaching out to help my situation. ( are you going to Glasgow?) as my brain cannot dissect all of that information, I'm hoping yourself and other fantastic people that have also given outstanding new methods could take me through it at the conference, as I don't want to take to many risks and be doing it all wrong I've been this way for 24 years now and in 6 weeks with wonderful advice from clusterbusters family, I think my quality of life should be much improved. I will be bringing hopefully my tanks with me if I drive if not and get the train, I shall get them delivered to the hotel, so I could show my actual set up, and be advised from there on. As regards your questions: *O2, has never really worked as I've kept daily diary's, using O2, and not using it over say 3 days and there is not much change in frequency, duration nor intensity, if anything oxygen tends to delay the time my headaches peak, and when they peak, the pain can be worse than a 10 if that's possible (more of a 12 in attached diagram), these are the ones I recently experienced for 3 weeks every day with only 1hr remission in between sometimes only 40 minutes, lasting between 25 mins 40 mins 55 mins and 80 mins respectively, and I knew after roughly 10 minutes into an attack how long it would take to go away, 8 out of 10 times. The reason I knew is because the pain pattern changed with the duration ( if that makes sense) some would peak straight away I mean within 2 mins and others 15, 30 and the like, and once I hit around 45 mins they would shift only briefly around 5- 10 minutes to the other eye ( but only say a 7 ). And that's when I know I was on for the grand finale the bit that really scares me. As its the most intense pain I ever have experienced, I actually think I've a brain tumor that the pain is also attacking as it's unlike the 99% of times I usually suffer them. ( and these are always the times when I have rebounds, this time it was due to my holiday in jamacia and I over did it with steroids and sumatriptan injections as not to let it spoil my holiday, when in fact the last few days it did, that was the onset of them. Not to mention the 10 hr flight back home, cabin crew were great they blocked of a toilet for me, on the onset. *M.R.I : The last mri scan I had was 1999, when they mapped my brain for the occipital nerve stimulater(ONS) At the National hospital for neurology and Neurosurgery in London. I cannot have any more as it means taking my battery out, my leads and 24 electrodes, and then replacing them. I've had my battery replaced 4 times, but only the battery as it came to the end of its life three times and 5 years ago it was due to be done again, but this time with a rechargeable battery 1/5th of the size the other, which was more the size of a coke can I was all preped and next on the list, but 2 hours before surgery, they cancelled as my Father passed away in Derby where he was in hospital. My family wasn't going to let me or the hospital know , but my brother in law did call the hospital. And they cancelled it and gave me the bad news. It was the worst day of my life and I had to travel back to Derby with that going on in my mind. So after the funeral they got me in straight away and added a third channel. This 3rd channel was for the base of my scull right in the centre ( the one you enquired about, which hadn't been done before to any other patient. *Switching Sides - I predominantly suffer say 60% left and 40% right however this can also change its not a precise figure, i would say for 80% of the time it's usually one or the other, the time they do switch sometimes more than once is when I'm in a really bad bout and there over 45 minutes long like I've recently experienced with the left side when switching being the worst. not to say the right is ok, it's a catch 22 your slightly relived that the pain level has gone down slightly, but you also know it's going to finish what feels like an explosion and at this point my eyes are streaming both nasal passages are blocked due to the switching of sides, and the pain in my gums and jaw are just as painful as in my head and the orbits of my eyes, it's like having toothache in every tooth. It's the worst but at the same time the best as I know I've just about got of the finishing line, and survived another attack. That's when I cry my heart out, knowing another will soon be along. *Centre pain - This pain occurs way into the cycle mostly, but can come and go throughout an attack its bearable as your main pain is your eyes, mouth and jaw, so you know its there but the other pains far outway that one, although if I just had the centre one I'd still be unable to have one in a public environment I'd still need to be locked away somewhere or hide in a Bush or something. The pain is so different obviously because it's not behind the eye. The feeling is more like pressure pushing down on you head, like your deep under water and the further down you go in the water the more pressure builds up. My Neurologists blocked that channel and just left me with the 2 left and right, just before I went to jamacia and I feel this could also be why this bout was so bad, I honestly think I'm just being used like a guinea pig sometimes, they change the signals to try and find what's best for me, but invariably there's no difference or its worse. Maybe because most only have the one channel with only 8 electrodes. I hope that all makes some sense to you, and thank you and to all other people that's helped me along in this short period if time I've been with CLUSTERBUSTERS. I've got writers cramp now with all this typing, I've never written so much since college lol. That image forwarded is when I really am at my wits end, and when I've been hospitalised 5 or 6 times through failed attempts at suicide. Just like I felt only a short few days and weeks ago. But found this site. And it's the best thing I've done.

Me too Shaun

CHFATHER, SENT ME THIS LINK, GOOD IDEA IN PRINCIPLE, CAN MAKE THE BAG AS BIG AS YOU WANT, AND USE AS MANY TUBES, AND CYLINDERS AS YOU WANT. NY WEEKEND PROJECT.

Yes there health and safety gone mad over here, and probably withdraw my prescription, do you reckon I could get 2 on the go though and bring it up to 30 ltrs with the y tubing??

Thanks Denny, I'm just not sure, if it's compatible, I've gone 24 yrs on this I'm hopeful I can view your guys set up at the Glasgow conference and have a demo and technique etc.. hyperventilating and all that. I've heard a lot about coffee I've tried necking a ltr of red bull, without joy just bad case of hiccups, I've nut done coffee, I'll try it. Do these caffeine supplements do anything?? Anyway I've lots to try and do, I'm so glad I joined this community you've all been so welcoming and full of great advice.

Racer1, that's a brilliant idea about the y tubing I'll have to give it a go, I have 4 large cylinders 2,400 ltrs each on script I could go crazy, and get 60ltr p.min . Also I'm gonna look at that idea I think CHFATHER sent about the link of a homemade mask from a coke btl, tape and I'll use a refuse bag, that should definitely abort it lol. Thanks for the info. N.B I've attached the regulator it's solidly attached like all in the u.k so I don't think I can pimp it up with the ones you can get in the states.

I do like that idea of a trash bag and coke bottle, I'm on that hopefully today, this sites full of tricks and advice, I love it.