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Hi everyone, new member but long time sufferer. It's been over 10 years now but this last year has been the worst, I thought things were bad but it's now progressed to chronic. I've tried all medication over the years and none have been successful apart from oxygen which helps during an attack. I've not been able to dothe job that I love for a long time now as I'm having attacks pretty much every day and night. It's exhausting. My specialist has recommended to try and get hold of a hi flow oxygen valve/mask then they would be able to get me the special cylinders to go with it, any info on this would be very much appreciated. My cycle has been going on for almost 9 months and I'm getting to a point where it's really difficult to stay positive. I could go on to list all the problems these clusters cause but I'm sure you all know them anyway and want to try and remain positive. To anyone who is suffering I wish you well and hope you can find some relief. I'm off now to try and get some sleep( sitting up of course) , goodnight everyone and speak to you soon. Lee
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Hi Lee, so sorry youare suffering so much. Your specialist is correct when he suggests ultra high flow oxygen. We have found this is a fantastic alternative to "ordinary" high flow oxygen and if you get on it at the first sign of an attack it stops the attack much faster than the high flow. If you email info@ouch.org ask for details tthat shoud help
Mike
Chairman OUCH UK