Hi all
I have a question about the cluster 02 kit available from the ch.com store, but a little background first -

I have 4 tanks supplied by the NHS which deliver 15 litres per minute. That's not enough to hyperventilate, but it's the maximum available here in England. The tanks are all sealed so I'm not able to add my own regulator, and I wouldn't want to be caught out trying to tamper with them in case they cut off my entitlement.

The mask is not a full non rebreather as it has holes in one side (also the only option available) so some normal air gets in. It usually takes between 10 and 20 minutes to abort a CH, depending on its severity. I've tried blocking up the holes, but without the ordinary air being able to get in, the bag does not fill up fast enough for deep, fast breathing. I'm not sure of the bags capacity but it's fairly small - probably about 6 or 7 inches long.

I've noticed that the mask available for sale here has a 3 liter bag which seems much bigger. My theory is that with the bigger bag, more 02 available for each breath and I wouldn't be able to "outbreathe" it, as I can now. So with bigger faster breaths, more 02, quicker abort.

Am I thinking along the right lines, or does it not work like that. If I'm right, I'll buy one.
Thanks all
Maz.

Quote:


Totally agree. I've two of them and they just work great. When I'm in cycle one is at home and one at a work location.

Hi Saladin
I've recommended sucking the 02 straight from the tube to other people because I read about it somewhere on this site, but I must admit I've not tried it myself, because my 02 the way I have it does work. It's just when the headache is a severe one it takes about 20 minutes - it works much faster for the milder ones. And as you know, 20 minutes feels like a long time when you are having a really big one.

I've also thought of buying a little plastic joint to fix two tubes into one and running two tanks = 30 litres. I have no idea if it would work - probably blow myself up like a balloon, but I'll try anything once.

Let me know how you get on with your experiment, and how the mask is when you get it.
Maz.

im sure you can make a homemade one really easy with a plastic bag.

ive seen instructions somewhere  just cant remember where.

Tangerine,  Thanks for that suggestion.

Mike, Thanks for the link. It was a good read. I have been "partially" doing it right - standing up and inhaling and exhaling as deeply as possible, but as I said in opening post the bag pn my mask doesn't hold enough, and I have to wait a second between breaths for it to fill. The 02 is not pure either as there are holes on one side of the mask and if I block them, then I have to wait even longer for the bag to fill. So now I'm going to have a go at making a "redneck" one.

As I said before the max flow I can get is 15lts and I can't tamper with the tanks. Do you know if it would create a higher flow, thus filling the bag faster, if I ran 2 tanks. I should be able to block up the holes and still breath easy if it works that way . I know you can buy little T joints for the tubing as it's the same tubing that's used for oxygenating fish tanks. It would be easy to fit 2 into one. (does that make sense ??). I know it would use up the 02 much quicker but luckily it very easy for me to get here in the UK. I also have loads of masks to experiment with.

The way things are I can abort a K7 in 15 minutes with 15 lts, but any worse than that and I have to resort to my injections, which take only 6 minutes. It's always tempting to go there first.

I will still buy an 02 kit in october when they become available again, as the whole thing looks much sturdier than the flimsy little things I get.

Thanks every one as always,  for the suggestions.
Maz.

Hi tangerine,
No I haven't tried busting. My family and I have always been 100% anti drugs (except medicines of course)although I do smoke,  and while I agree that for medical use it would be far more acceptable I am still a bit loathe to try. I did once mention to my husband about marijuana and he said bluntly he wouldn't have it in the house. He would be more tolerant if a doctor prescribed it, because then it's legal and proper.

To be honest I wouldn't know where to start - where to get it or how to prepare it. I was a teenager in the 60's and all around me people were smoking funny fags and swallowing pills, and I can honestly say I was never once tempted.

Where abouts in the UK are you ? I'm in Havant, about 6 or 7 miles north of Portsmouth.

Haven't been to Blackpool since I was a little kid and that's too long ago to remember !!! I have an inlaw from there though although she lives in Weston- Super- Mare now.

Although my husband said he wouldn't have Marijuana in the house he wouldn't actively do anything to stop me if I really insisted, because he does see what I go through with this damned thing in my head. But it would probably rock our boat and cause a few rows. Probably the same with mushrooms or whatever it is. He doesn't have to allow me - I do my own thing, but the trouble is I half way agree with him so I tend not to consider it much. I'm 65 years old in a couple of weeks and after all these years of resisting (and fighting with my kids on occasions) it's ingrained into me and kind of hard to change. That said, I'm not completely closed minded and I don't discount
anything completely so who knows - maybe one day I'll need a last resort. I guess I'm just scared of it. Six years ago before I was diagnosed and had any meds I would have swallowed ANYTHING to take away the pain during a CH, but now I have the right meds, on the whole I feel I'm in control of it. I'm angry more than anything else - tired from badly disturbed nights, and I always get one in the middle of my dinner, or in the bath, or when visitors come round.This last few weeks I haven't even managed to have a cup of tea without having to leave half of it to run upstairs to the 02. And I keep missing Corrie. Bummer.

I have looked at the cluster busters site a few times, but being such a goody goody all my life I don't really understand what they are all talking about. I have considered going on the site and asking a few beginners questions, but haven't done it yet. Do you just take the stuff when you actually have an attack ? I'm having as many as 12 or 13 in 24 hours at the moment so I'd probably end up as high as a kite !!

As you've seen from my posts, the 02 and sumatriptan are working for me but it's just so frequent that it's driving me mad. At the moment I'm just trying to tweek the 02, to see if I can get faster and longer lasting results.

Thanks for the advice, and if I do decide to go down that road I will PM you to find out where to get it and how to take it. Maybe it wouldn't seem so scary if I had someone who knows what they're doing to guide me.
Maz.

the basic way to bust and best way is to start a maintenance regime which basically is a preventative treatment to stop cycles even starting.this is usually a dose every month - 3 month depending on individual some may go longer.
you can bust a cycle very effectively by busting but you have to stop using imitrex and some other drugs for 5 days prior which can make it more difficult.
it depends on your busting agent how theyre prepared as you can grow mushies yourself or order the finish article and just eat.
you can as mentioned above use man made products like 5 meo dalt which is having huge success unfortunatly this is now banned in the uk.

its a personal choice  and i totally understand the trepidation as i had it (married with small kids)_but it CAN work wonders.

pain free to all

Got my clusterO2 kit yesterday and it works great... Even at 15Lpm. A vast improvement over the cheap non-rebreather I was using. Abort times in 5 mins. +/- as opposed to 5-7,8,9 or 10 +/- mins..  .  to whoever came up with that.

My mask arrived today.  Haven't used it yet but I'm all set.

I have to say what a brilliant service. From Wichita, via Chicago, Minneapolis and London, to my front door in 6 days (not counting the weekend). Can't ask for better than that. 

I'll drink to that Brian.