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Topic: 8 hours!!! (Read 535 times) |
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Buzz
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8 hours!!!
« on: Jun 28th, 2007, 11:38am » |
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The beast crept in at 4am this morning and started yanking nerves, kicking my eye and pissing his poison everywhere. He made himself comfortable and helped himself to my Red Bull, my coffee and my mental faculties. By 1.30pm he was getting bored and by 2pm he had crept out again, no thanks, no nothing.
8 hours of misery for me with peaks and troughs between kip 10 and kip 5.
Who would have thought that a Kip 5 could be bliss? I did.
And I've mown my lawn. Saint badge, please!
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An 8 hour hit is very unusual. If this is the norm, I'd be talking to your neuro again. Maybe you have more than just clusters going on. Either way, it's got to be bad to suffer for so long. 
Goodluck & PF Wishes
UNsolved
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Buzz
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Re: 8 hours!!!
« Reply #2 on: Jun 28th, 2007, 2:40pm » |
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I think it was more headaches coming end-on-end. They have not been sticking to much of a pattern lately. I think either the cluster is peaking or that because of all the Red Bull and coffee and their sleep-reducing capabilities, my body clock has become confused...
On the bright side, I GOT O2 PRESCRIBED AT LONG LAST!!! 
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Rosybabe
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Re: 8 hours!!!
« Reply #3 on: Jun 28th, 2007, 4:29pm » |
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Great Buzz!! now it is time to PUff it in!! 
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thebbz
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Re: 8 hours!!!
« Reply #4 on: Jun 28th, 2007, 7:34pm » |
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endless and relentless. demon bastard.
Hope your doing better with the 02.
jb
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Shedz
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Re: 8 hours!!!
« Reply #5 on: Jun 28th, 2007, 7:43pm » |
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Glad you got the 02 chap, now the beast gonna be sorry!!!
PFDAN's to ya Buzz.
Paul.
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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Buzz
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Re: 8 hours!!!
« Reply #6 on: Jun 29th, 2007, 4:45am » |
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I will have it in 3 days time... In the meantime, I had a really good night, woken up only 3 times, with easily dealt with headaches.
I have a sneaking suspicion that by the time the O2 arrives, the cycle may have ended... but let me not tempt fate!!
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DennisM1045
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Re: 8 hours!!!
« Reply #7 on: Jun 29th, 2007, 8:48am » |
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I'm glad you got some rest last night. Next time the beast shows up you'll have the O2 to kick his a$$ with. I hope it works well for you...
-Dennis-
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LeLimey
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Re: 8 hours!!!
« Reply #8 on: Jun 29th, 2007, 9:11am » |
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Buzz are you episodic or chronic and is your supplier going to be Air Products, BOC or Allied? (Not sure if you are actually IN London or home counties)
Make sure they leave you NON REBREATHER Masks when they deliver (the sort with the bag dangling) and if they have holes in the mask tape over them or it won't be so effective.
If you need any more help or tips once you have your cylinders let us know and we'll get you sorted. You should have portables as well as big berthas for use at home so we'll make sure you have all the info you need to get the right equipment!
Helen
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MR_FLOOR
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Re: 8 hours!!!
« Reply #9 on: Jun 30th, 2007, 6:42pm » |
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Sounds like you needed a shot of trex.I tel ya I thank the almighty that I never had an 8 hour Cluster I don't care what it was on the kip scale that sucks.You are 1 tough S.O.B.
Dave
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Buzz
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Re: 8 hours!!!
« Reply #10 on: Jul 2nd, 2007, 3:48am » |
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They went away for 24 hours then came back again... 8 in rapid succession, all kip 6-8. ten last night had 2 with a 20 minute gap and since then nothing. And these are supposed to be called "Alarm clock headaches'??? I hereby rename them "Cheap alarm clock headaches". Hopefully the O2 will be delivered today.
LeLimey, I will check as you suggested. Thanks for the advice! 
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Buzz
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Re: 8 hours!!!
« Reply #11 on: Jul 2nd, 2007, 3:49am » |
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They went away for 24 hours then came back again... 8 in rapid succession, all kip 6-8. Then last night had 2 with a 20 minute gap and since then nothing. And these are supposed to be called "Alarm clock headaches'??? I hereby rename them "Cheap alarm clock headaches". Hopefully the O2 will be delivered today.
LeLimey, I will check as you suggested. Thanks for the advice!
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Buzz
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Re: 8 hours!!!
« Reply #12 on: Jul 6th, 2007, 5:03am » |
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Well... the jury's out on the O2... the headaches came back yesterday afternoon... I have been using the O2 and the pain seems to go, but comes back again quite quickly... And I've already used most of the tank. I am going to ask for 2 big tanks (the one I have has, when fully charged, 2 hrs supply which seems to be a bit pathetic)...
My Dr suggested I cut down on the Verapamil now that I have O2 but I think that was a mistake.. again, I'm not sure... my headaches seems to have a mind of their own - no real pattern, just "Oh, here's a gap, I'll fill it with pain". Bastard Beast.
Beast? Nah! Beasts are impressive - CH is actually a pathetic, attention-seeking goblin. Get thee hence, goblin!
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LeLimey
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Re: 8 hours!!!
« Reply #13 on: Jul 6th, 2007, 5:58am » |
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Verap is a prevent whereas O2 is only an abortive - You need the prevents to work on the cycle rather than individual hits which is what the O2 is for.
They have two completely different functions which, although they are aiming at the same goal, can't be confused. Definitely do not wind down on the verap just because you have an abortive hon.
No for the O2. Its a bit of a tricky bugger when you first get going. The main things I have found that help wth it are:
1. Get on it asap. Do not wait to see what happens - if you get a twinge bury your face in that there mask boy!
2. Breathe as steadily as you can. I try to breathe in for a count of four and breathe out for a count of four. I can't go higher as I generally can't remember what comes after four when I'm getting hit. It's also a coping/calming mechanism as I find that the moe fractious I get the less I can cope so give it a try.
3. Once the pain has gone - ie the hit has finished STAY ON THE O2!! I can't stress that enough. This is the best tip ever given to me and it really stops hits coming back. What I do is I carry on breathing once the pain has gone at 15lpm for a couple of minutes then wnid it down to 12lpm, 10, 8, 6 and so on for a couple of minutes at each level and once I get below 6lpm I loosen the mask from my face slightly to let "normal" (common!) air in. This seems to lessen the "shock" of going from pure o2 to just skanky old air 
As a rule of thumb I stay on o2 for as long after the hit as it took to abort the hit so ten minutes to abort = ten minutes to wind down off it.
It's also a good way of coming back down to earth without people bothering you as they do as soon as they see the mask gone. It lets you become "Buzz" again instead of just the beasts trophy.
I hpoe this helps - bear in mind anything that hits you again an hour later is probably a new hit rather than the same one coming back for another piece of you.
Keep letting us know how you are getting on
Helen
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Klusterkopf
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I have had back-to-back CH attacks lasting for a week, sometimes more. If yours are like mine were, the break in between attacks is 30 minutes at most, with the residual pain still hanging around and then, BOOM, back comes the full attack, lasting, in my case, up to 2 hours. Fentanyl lollies helped some in making the breaks last longer and shortening some attacks (and diazepam or chlonazepam helped reduce my anxiety). Viel Gluck, mein Freund-Ich bin bei dir!
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Buzz
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Re: 8 hours!!!
« Reply #15 on: Jul 6th, 2007, 12:27pm » |
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Helen, thank you so much for your very helpful advice. Its a great comfort to know we have people who have become such experts on this bloody condition - and who so energetically and willingly share their knowledge.
You are a real hero!
Thank you
Paul
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horsegirl
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Re: 8 hours!!!
« Reply #16 on: Jul 8th, 2007, 5:12pm » |
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you realy have been given great advice,im gonna try the wind down on the o2 also, but i have to say i have had the 02 for three cycles now and durring the peak of my headaches the 02 seemed to only postpone or delay them so don't get discouraged because except for a week there it worked great for me.
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southwalessunshine
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Re: 8 hours!!!
« Reply #17 on: Jul 9th, 2007, 3:45pm » |
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Hey Buzz,
How did you get prescribed O2? My doc has never suggested it and i want to bring it up when i'm next there but want to be armed with info so i can't be fobbed off! Any info would be greatly appreciated. thanx x
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
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Buzz
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Re: 8 hours!!!
« Reply #18 on: Jul 9th, 2007, 3:58pm » |
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Go armed with the information you can pull off this website. This and OUCH UK have so much info to give your doc; make sure you have it and have swotted up - knowledge is everything - and show your doc that you KNOW what the problem is, what the options are, how important it is to have O2 and how unethical it would be not to provide it.
Have you seen a neurologist? I saw Dr Blau at the London Migraine Clinic - he's a world-leading expert in cluster headaches and he wrote to my doc prescribing Verapamil - I guess he (and other specialists) would be happy to recommend O2...
Good luck and be determined. Don't take "No" for an answer.
Perhaps a seriously large tantrum should be kept close at hand...
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