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.

Thanks CHFATHER, seems a bit complicated I think i will try and get a demo of someone at Glasgow (will you be going?). Another thing is I've noticed the 3ltr mask(green) is better I've tried to order of clusterheadaches.com but they haven't any in stock, they don't sell them on amazon in the u.k but do in other countries but works out with shipping to be about 75 dollars and I'm unsure whether the tubing, connections are different ( I've attached some photos of mine).So I'm going to phone ouch uk today. Also I would like to increase the flow to 25 or more but I don't think I could fit a regulator on these. I haven't tried the shower thing as mine peak within minutes if I don't take sumatriptan. I do however have at the ready a large bucket filled with water and at the onset empty ice into it and dip my head in until my head is at the point of freezing, which does counter act the pain of the cluster some what, but honestly I don't think it changes the duration time, or actually does anything it's something I've always done in a bad cluster as my head and body gets awfully hot. I've managed to plead and get a small course of prednisone and what a difference less than a day has made, I almost feel human again. Also I've started the D3 regime that batch(fighter pilot) discovered, such a clever man. But going to hold back for now until this cycle isn't so bad, because I believe its the same as vit m & vit L in that you can't take preventative or abortive. Thank you for all your help & advice and I hope I will see you in Glasgow.

Already booked, really looking forward to it, only been on this site 1 week and already learnt more than I have in 24years of having cch, I'm looking forward to meeting you all and hopefully getting a better quality of life, by following the breakthrough clusterbusters has given to many.

Thank you, Vajenna, yes I've tried all them techniques you mention and I can't fiddle about with my cylinder what so ever if I did it would probably blow my house up lol. I've seen these valves where you can up the Ltrs p. minute but look nothing like the one I have everything seems welded together. And once it peaks, there's no chance of me staying on it as I'm all over the place, banging, slamming, rocking, crawling, dunking my head in ice bucket. I'm like a possessed demon screaming and crying. I'm attending the Glasgow conference in 6 weeks I'm sure I'll get so much information and knowledge there. I'm new to this site and its been a god send I've learned more in 1 week than I have from all off my health care professionals. I wish you and all other sufferers well on our independent journeys to find what works for us all.

Evening all, i would like to join the zoom meeting from the u.k but I'm a bit thick when it comes to time zones. Could anyone help to tell me what time and day the event actually broadcasts in the u.k. also I've never done a zoom meeting, I'm a bit of a dinosaur when it comes to this tech stuff. Many thanks.

Good evening all, I'm asking for advice on the O2. I've been taking it for over 20 years, but in the UK can only get 15ltrs p.min. it works for me if the pain is below say a 5 or less( however when I've not had access to it it goes away on its own roughly the same speed but anything over 6 in particular 8-10 all it does is seem to prolong the attack, going from the worst pain, then you think it's going and then comes back with avengeance, and the process repeats several times, a lot of the times switching sides from right to left and can go on for 90 mins, but without O2 tend to last half the time or 1hr max.( since being diagnosed as cch I've always had it on both sides even center of my skull). I'm not sure if it's the amount I'm having 15ltr or if it's a certain technique I'm not following, the mask is non breathable. I've heard or read somewhere that I need to hyperventilate or something???? Can anyone tell me what this is please or where I'm going wrong as I believe most suffering can abort the attack in less than 15mins even when it's at its peak. Thank you I would welcome any help.

Thanks CHFATHER

I once come along this, and its so true, he's nailed what our condition consists of perfectly. https://www.clusterheadaches.com/symphony.html

Hi, is there anyway I can edit my name?? I'm a bit rubbish with tech thanks in advance.