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Topic: Clustermasx Review (Read 10715 times) |
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JoeKen
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Re: Clustermasx Review
« Reply #50 on: Nov 14th, 2005, 11:54am » |
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This reply is aimed mainly at Ben UK and Zanychef - both should know why.
I would just like to add my two penn'orth to this thread.
I received my Clustermasx some weeks ago and can wholeheartedly endorse all the good reports that everyone else has given it - thanks Ben, from a fellow Yorkshire man. The previous OUCH mask was OK, (so I thought), but it didn't abort all my attacks. The Clustermasx mask has a much higher success rate, but still not 100%, and having read all this thread and connecting threads, I think I may know why. I pass on my thoughts just in case there are other readers who are as slow on the uptake as I am.
I think that I read somewhere that the recommended flow rate for oxygen, for it to be effective, is 8 to 12 lpm. I have always run my regulator at 9 lpm, not wanting to waste precious oxygen (comes from my Yorkshire background - waste not, want not). I often found myself sucking the bag empty and responded by slowing down my breathing, or breathing a little less deeply. Being a big guy, I guess that I probably need a bit more than average to fill my lungs. I also have a full face set of whiskers and I often feel the 'chill' of cold air leaking in under the whiskers, particularly towards the end of the intake of breath, unless I press the mask really tight to my face.
On my next attack I shall 'turn the wick' up on the regulator so that I have no possibility of sucking the bag dry, and if others are to be believed, (and I'm sure that they are !!), I should reduce the overall consumption of oxygen.
BTW anybody got an answer to sealing the mask against a full set of 'face fungus', apart from a razor blade?.
Thanks again to Ben - when it is effective, oxygen must be the preferred medication - cheap and fewer side effects - anything that can make it more effective is to be commended.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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rextangle
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Hey Joe,
Have you thought about attaching a bigger bag to your mask? That's what I did, and it makes a big difference.
If you do so, crank your regulator to max, and wait til the bag is full.... start huffing and then you can decrease the LPM gauge to your likings.
I also got (from Mr. Happy) a modified regulator that would probably go up to 100 LPM if I cranked it all the way.
Fills the bag in 3 seconds and for the first 3 minutes, I'm probably inhaling 20 LPM. Then I turn it down so that when I'm finished exhaling the bag is refilled.
Works like magic.
As far as the whiskers go.... you can either press the mask harder (don't pop it!), or shave all that crap.
It'll make you look younger, and you'll get more 02 in your lungs.
Practicality over vanity, it's a no brainer.
Good luck to you,
Rex
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PittsburghJoe
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Re: Clustermasx Review
« Reply #52 on: Nov 14th, 2005, 11:38pm » |
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Got my Clustermasx today, and even got a couple hits to try it out.
Get. This. Now.
That is all.
Joe
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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LeLimey
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Re: Clustermasx Review
« Reply #53 on: Nov 15th, 2005, 3:55am » |
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Oh Joe, I'm sitting here grinning like a right nutter! I'm so pleased you've got your masx now and I love it when people are so impressed with it. I know how much of a difference it's made for me and I just want everyone else to have one too!
Thank you for my first happy smile of the day 
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JoeKen
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Re: Clustermasx Review
« Reply #54 on: Nov 15th, 2005, 6:11am » |
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A bigger bag seems a good idea - does anyone do them 'off the shelf' or can any body point me in the right direction to obtain on in the UK.
Can we start a movement to get the Clustermasx prescribed on the NHS - the benefits to them are reduced oxygen consumption definitely, reduced expensive other meds probably, and happier, healthier customers - seems like a 'no-brainer' to me.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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zanychef
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Re: Clustermasx Review
« Reply #55 on: Nov 15th, 2005, 6:31am » |
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clustermasx IS undertrials and should be availiable on nhs soon ben hopes
joe i still want to talk to you about imigran 
ian
edited to add:
use as soon as you feel a hit coming on aborts quicker and you use less o2(for all the yorkshiremen in the house   )
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| « Last Edit: Nov 15th, 2005, 6:35am by zanychef » |
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JoeKen
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Re: Clustermasx Review
« Reply #56 on: Nov 15th, 2005, 7:19am » |
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First to LeLimey: - glad that I made you smile - nice to know - I was beginning to think, because of the lack of reaction, that my humour was not much appreciated on this site. Maybe it's because it's a bit unusual I guess.
Now to Zanychef: - Hi Ian. Glad to know that Ben and the NHS are talking - hope he gets a better response than most of their customers feel that they do.
I fully understand your thinking on my GP prescribing Imigran, but I do not yet want to put him in a position where he feels that I have 'forced his hand'. At the moment I am 'enjoying' a relatively quiet and benign period of CH (shadows only) - keep your fingers crossed that it lasts - and I am learning to manage ok with black coffee, oxygen and fresh air. I would prefer to keep the BNF 'big gun' in reserve until life gets intolerable - at that point I really shan't care who the hell I upset.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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E-Double
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Re: Clustermasx Review
« Reply #57 on: Nov 15th, 2005, 7:26am » |
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Joe,
Although I live in the US, I have learned enough about the UK system from freinds that have to deal with it.
It is a fact that the recognized treatment for CH is sumatriptan injectables in the UK. This is per your government.
There is no need to threaten your doctor with the big guns but why not get what you are entitled to and what is relatively cheap.
If it were the US and you perscribed something other than the approved med, you would then be paying more money. I am not sure if this holds true in the UK.
It appears to me that if it were available to you then you could stock up since everyone there gets tons paid for compared to here and you could wind up with an arsenal ready for the future.
Good luck!!!
Eric
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pubgirl
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Re: Clustermasx Review
« Reply #58 on: Nov 15th, 2005, 8:21am » |
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on Nov 14th, 2005, 11:54am, JoeKen wrote:
BTW anybody got an answer to sealing the mask against a full set of 'face fungus', apart from a razor blade?.
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If your clustermasx came with a mouthtube as well as a mask like mine did, use the tube instead, that's what I use and there is nor problem with "leaking" with that one.
r.e. a bigger bag, message ben and ask him but I can't see any reason why you shouldn't have any size bag you like attached.
Wendy
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pubgirl
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Re: Clustermasx Review
« Reply #59 on: Nov 15th, 2005, 8:26am » |
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on Nov 15th, 2005, 7:26am, E-Double wrote:Joe,
It is a fact that the recognized treatment for CH is sumatriptan injectables in the UK. This is per your government.
Eric |
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Eric (and any UK people reading), this isn't actually accurate. The two abortives recommended in the BNF (the GP prescribing Bible) are Imigran injections and HIGH FLOW RATE OXYGEN.
Only the Imigran is licensed but Professor Goadsby worked very hard to get a page on Cluster Headaches in the latest BNF, AND to have that page include 02 therapy as GP's really do use this book to guide their actions.
If a GP is asked to refer to their own BNF and further encouraged that the 02 is cheaper, many cave in and prescribe.
Wendy
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E-Double
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Re: Clustermasx Review
« Reply #60 on: Nov 15th, 2005, 8:29am » |
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Damn it!
I just fit itnto the sterotype of big mouthed American who doesn't know what he's talking about.
However, I will fight to the end
I defer this round to the Brit
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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pubgirl
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Re: Clustermasx Review
« Reply #61 on: Nov 15th, 2005, 8:32am » |
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You're half right though Eric, our GP's are scared of prescribing the 02 because they have mostly never heard of it and the fucking nutters are happier handing out expensive drugs. 
W
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JoeKen
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Re: Clustermasx Review
« Reply #62 on: Nov 15th, 2005, 8:33am » |
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,
Aimed mainly at E-Double: -
Hi Eric,
I think that you may misunderstand the situation in the UK - whilst it is true, in theory, that the UK National Health Service (NHS) provides whatever treatment is required/needed/necessary, in practice it doesn't quite work like that, and it is getting even less so. (worse).
All local doctors (GPs) have to work to a budget based on the numbers of patients registered with them. I am not sure what the penalties are but they would be quickly in trouble if they did not stay close to their budget limits.
So, even though the NHS Neuro diagnosed CH, he (the Neuro), can't prescribe for me, only recommend - my GP is the only one that can prescribe for me, (unless I am hospitalised, obviously).
My guess is that, because my CH is not 'classic', my GP is treating me, with some limited success, as a Migriane sufferer - I stress this is my guess.
I also believe, (will someone in the UK please correct me about this point or any of the ones above, if I am wrong), that Imitrex injections are much, much more expensive per dose, in the UK, than any other CH meds.
Thanks to you and Ian (zanychef) for your concern.
Joeken.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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pubgirl
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Re: Clustermasx Review
« Reply #63 on: Nov 15th, 2005, 8:37am » |
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JoeKen
They are MILES more expensive. I can get you the figures if you want but the drug plus statdose injector pen system and the cases push the cost up into silly money.
This is why UK GP's keep pushing the pills as they are much cheaper.
The nasals are cheaper too, Zomig nasal is well worth a go to add to your armoury, particularly if you are struggling to keep enough stock of injections as most GP's are very resistant to giving you loads of them
Wendy
btw, most PCT's work on a policy of not withholding the correct treatment on the basis of cost and as the Imigran injection is the licensed abortive for Ch you can always try quoting this.
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| « Last Edit: Nov 15th, 2005, 8:41am by pubgirl » |
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pubgirl
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Re: Clustermasx Review
« Reply #64 on: Nov 15th, 2005, 8:40am » |
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P.S.
JoeKen, did you see my post above about tube and bag?
Wendy
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zanychef
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Re: Clustermasx Review
« Reply #65 on: Nov 15th, 2005, 8:58am » |
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joe
i would still talk to your gp about the injections as it would be no good when you need the 'big guns' and you have to wait 1 day to se the doc and a further 2 days for the chemist to get it in as it (they) are not a standard stock item for most.
yes they are expensive but the immediate relief is astounding (this from a guy who is going to try seeds),
and please remind your doc you are NOT a migraine sufferer but a CLUSTERHEAD (wear the droopy eye with pride) and as such the treatment is different for each and every one of us
ian
edited to add:
ps my imigran bill for my g.p. is currently over £250 per week and he foots the bill because he has seen me at k8 before( we were playing golf at the time, and it disturbed his game ,maybe he just wants to win for once
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| « Last Edit: Nov 15th, 2005, 9:01am by zanychef » |
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plenty of time to sleep now me headaches aint too bad
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Redrum
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Re: Clustermasx Review
« Reply #66 on: Nov 15th, 2005, 10:41am » |
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Just got my Masx...2 thumbs up (hope thats not an insult in the old world, is it?)
Used it last night and aborted in about 5 minutes woohoo!
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JoeKen
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Re: Clustermasx Review
« Reply #67 on: Nov 15th, 2005, 11:26am » |
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This reply is aimed mainly at pubgirl.
Hi Wendy, Thanks for your replies - it seems that our postings seem to spend a long time in the ether before they arrive at their destination, resulting in a lack of chronology when they appear on the Message Board.
Would you believe that I am a BSAC qualified SCUBA diver, (note to Eric: - qualification earned the hard way, not by crossing some PADI instructors palm with siver), although I haven't dived for a few years. I initially struggled with the SCUBA demand valve, but finally got to keep it in without continual wretching. I have tried Ben's mouthpiece but suffer with the wretching again. What cured it for me when diving was getting my head under water and seeing the fishes - took my mind off the wretching. I just can't see myself standing with my head in an aquarium to facilitate Ben's mouthpiece, can you - my family already think my antic's when being 'hit' are somewhat strange - they would probably try to get me certified if I tried the aquarium option.
As an aside to Eric and Ian, my GP has no problems with prescibing me oxygen (I suspect that we are learning together about CH), and he immediately put me on 10 mg Imigran tablets and then, when I asked to try it in addition, oxygen, both on repeat prescription, so I just 'Call and Collect' as I need it - God bless the NHS, eh Eric, is this what you had in mind?
When I asked to try Zomig nasal spray, based on the conference report from Athens in September by Peter Goadsby et al, my GP didn't say "No", he just raised the cost differential between it and tabs and suggested that we 'meet half way' and try the Maxalt Melt wafers (nothing less like a wafer have I ever seen, BTW). To be fair to the GP, (Ian please note), the GP changed my repeat prescription from Sumatriptan to Almotriptan because of the cost, but assured me that if I found the Almotriptan to be any less effective he would immediately put me back on the Sumatriptan - I think that a one person sample trial would find it difficult to distinguish between the two options - anybody else got any evidence to contribute, as I haven't been able to notice any difference. I get the opinion that, if I asked for anything loudly enough, the GP would prescribe, and on that assumption I prefer the dialogue of negotiation rather than coercion (sp?).
Thanks again for your interest and concern.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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zanychef
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Re: Clustermasx Review
« Reply #68 on: Nov 15th, 2005, 11:37am » |
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sure negotiation is a better path i try it too! (sometimes).
I would still like for you to have 1or 2 packs of the 'big guns ' ready and waiting to go though  (just in case).
it seems allthough your doc is reasonable he is still argueing things on cost grounds, i say that cost of meds = a hell of a lot less than either:- 1. a visit to ER and 2.a funeral!
and what on earth is a PADI instructor some kind of deformed irish teacher ?
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plenty of time to sleep now me headaches aint too bad
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pubgirl
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Re: Clustermasx Review
« Reply #69 on: Nov 15th, 2005, 12:08pm » |
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Joeken
It's a bugger about the mouthpiece as I love it (echoes of childbirth and entonox I think) but I am in a minority on this I think. Time to lose that face fungus!
I am a mite confused about the almotriptan prescription as it is just another pill form triptan with limited uses as a result I thought. You are the very first UK sufferer I have ever heard of (and I talk to an awful lot of them!) who has ever been given almotriptan. It is more common in the USA and is called Axert here. Some USA sufferers have had some good short term prevention from it, but I think Frova/Migard has better results if you really have to use a pill form of any of the triptans. Posted elsewhere but useless as aborts due to speed but some value in our armoury for other reasons.
If almotriptan is available here as anything other than a pill I would be incredibly interested to know as we still as far as I know only have two triptans in fast delievry form (Imigran and Zomig)
Wendy
P.S. We are thread hijacking here so if this is going to continue it should be recommenced elsewhere people are looking here for clustermasx info
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zanychef
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Re: Clustermasx Review
« Reply #70 on: Nov 15th, 2005, 12:20pm » |
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on Nov 15th, 2005, 12:08pm, pubgirl wrote:
P.S. We are thread hijacking here so if this is going to continue it should be recommenced elsewhere people are looking here for clustermasx info |
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my thoughts too shall we use the imigran 100mg thread joeken started?
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plenty of time to sleep now me headaches aint too bad
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rextangle
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Hi Redrum,
Glad to hear that the Clustermasx is working well for you.
For anyone who uses oxygen multiple time every day like myself, it's a MUST HAVE, really.
You have no idea what you're missing! Please get one.
I have nothing to gain by promoting this in case you're wondering, but since I'm chronic, it's the best tool in my arsenal right now, the quickest and most effective remedy.
I'm only trying to encourage other people to get one so we can all share the same relief.
The Clustermasks: IT ABORTS! AND QUICKLY.
My old non-rebreather: USED TO KEEP MY COMPANY DURING AN ATTACK.
Enough said,
Rex
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JoeKen
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Re: Clustermasx Review
« Reply #72 on: Nov 15th, 2005, 4:16pm » |
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Aimed mainly at pubgirl and zanychef ,
I agree on the thread hijacking thoughts, so if we continue, let's revert back to100 mg Triptan thread.
I say "if we continue" because I am not sure how much more there is to say.
Almotriptan tabs were substituted about 3 or 4 weeks ago, on the grounds of cost, and appear to be as effective as Sumatriptan, which may not be of much interest to 'classic' CH sufferers. The main problem that I have with them are that they are very small round pills, like a mini aspirin, and my usual dose, unless I am in real pain, is half a tablet. Cutting these in half, accurately, is a real pain, (no pun intended), and they tend to crumble also, whereas the Sumatriptan were larger, lozenge shaped, and came with a helpful depressed line halfway along their length. I stick to half a tablet where possible for 2 reasons: -
1) I found by accident (worried about a full tablet when suffering other health problems), that half a tablet was nearly as effective as a full tablet, particularly when followed by oxygen, and
2) in the early days following the CH diagnosis I was
exploring the web for possibilities of buying Sumatriptan abroad in case I needed some during a holiday in areas not covered by NHS prescription, and was gobsmacked to see the prices for these tablets - my GP then confirmed that they were indeed expensive (but assured me that I would not be denied them on those grounds, but who knows where the NHS will be next year, or the year after).
BTW a nice young lady in a pharmacy at a German airport, when travelling on business, assured me that a normal UK prescription would be filled (medication supplied) by any pharmacy in the EU - nice to know if you are travelling - I have never needed to put this to the test but I'm sure it will be true - can anyone else confirm or refute this?
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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zanychef
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Re: Clustermasx Review
« Reply #73 on: Nov 15th, 2005, 4:18pm » |
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on Nov 15th, 2005, 3:36pm, rextangle wrote:Hi Redrum,
Glad to hear that the Clustermasx is working well for you.
For anyone who uses oxygen multiple time every day like myself, it's a MUST HAVE, really.
You have no idea what you're missing! Please get one.
I have nothing to gain by promoting this in case you're wondering, but since I'm chronic, it's the best tool in my arsenal right now, the quickest and most effective remedy.
I'm only trying to encourage other people to get one so we can all share the same relief.
The Clustermasks: IT ABORTS! AND QUICKLY.
My old non-rebreather: USED TO KEEP MY COMPANY DURING AN ATTACK.
Enough said,
Rex |
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i can only endorse this statement
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plenty of time to sleep now me headaches aint too bad
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E-Double
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Re: Clustermasx Review
« Reply #74 on: Nov 15th, 2005, 9:05pm » |
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I finally had my opportunity to use it.
Actually a few opportunites.
WOW!!!!!!!!!!!!!!!!!
O2 works again and quick.
First one aborted in about 6-7 minutes.
Good stuff!
Thank you Ben!
Eric
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IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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