Hello fellow sufferers, my name is Jay and I am a clusterhead. I will be having an attack within the next 2 months I suspect and I am getting ready. This will be my 4th bout and I am afraid it will be a doozy as my attacks have increase in duration and intensity since they started. They come every five years, my last bout lasted 52 days with 4 to 6 daily onset attacks and 4 to 6 rebound headaches between them . My primary doctor was only giving me stadol spray and imitrex pills and I believe the spray was causing me the rebound headaches so I am trying to avoid using that. I went to a neurologist last week who of course ordered up a brain scan- I'm waiting on the results- and we discussed treatment. He mentioned lithium, verapimil, and imitrex injections among others but I was there to get the o2 script which I did at 10-15 Lpm. ( I may have  a problem getting him to increase the Lpm) I have not used o2 before so I am having a lincare set me up with a system and they will show me how to use it. I choose the liquid o2 tank over the gas tanks because it holds so much more. I have not read anything on this site that refers to liquid o2 tanks. I am curious as to why liquid o2 tank aren't the tanks of choice. Is there a reason I would  need gas tanks? When I am under attack I can't go anywhere or do anything so I don't really have a portable need, even if o2 works wonders I can't see taking a tank to work. I work as cashier in a smoke filled bingo hall with an array of perfumes and other smells. Smells really trigger me off. Also have any body heard of cranial sacrum massages working as a preventative?
Thanks in advance.
Jay

Welcome Jay.... sounds like you are ahead of the curve by preparing to do battle with the Beast. Hopefully this time around he will pass you by.

Getting a prescription for 02 was a great move you may also consider getting the proper mask. It can be purchased online from the ch.com store. Here is a link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm certain others will be along shortly to great you and make any additional suggestions.

Good luck.
Tony

This is Jay again, I am full of questions and I will try the glean the answers from the forums as best as possible but here's a couple more.  I will be using a non re-breather mask for o2 delivery. I do not know the brand but is one better than the other? Is an on demand valve the device by which to get around the 10-15Lpm setup I will be getting?Are those of you who find that o2 works also using imitrex, verapimil, lithium or whatever other meds as well. I know it will be a trail and error situation and I can't expect to be pain free but knowledge is power and I'm going to need  plenty of power for the beast this time around. Is there anybody out there that has missed their cycle and or just plain gone into remission? Conversely, has anyone that has been in a cycle gone chronic. That's what scares me the most.
Thanks in advance,
Jay

This is Jay again, I am full of questions and I will try the glean the answers from the forums as best as possible but here's a couple more.  I will be using a non re-breather mask for o2 delivery. I do not know the brand but is one better than the other? Is an on demand valve the device by which to get around the 10-15Lpm setup I will be getting?Are those of you who find that o2 works also using imitrex, verapimil, lithium or whatever other meds as well. I know it will be a trail and error situation and I can't expect to be pain free but knowledge is power and I'm going to need  plenty of power for the beast this time around. Is there anybody out there that has missed their cycle and or just plain gone into remission? Conversely, has anyone that has been in a cycle gone chronic. That's what scares me the most.
Thanks in advance,
Jay

Hi Jay, Hopefully you will not be having a cycle in the next few months but... usually the docs will prescribe a preventative such as Verapimil and you would use the O2 as an abortive. I can only speak for myself but O2 and or imitrex nasal and ice is what I use. O2 first. Don't know the diffenece between liq and gas on the O2 but the O2 helps. And believe me if these babies get bad enough you WILL take the canister anywhere if it helps you, yes, even to work, if you can still work. I didn't say use it where folks are smoking but there is always someplace out of the way, because who wants to be around alot of people during an attack?? :o

Welcome Jay, can't help you with the liquid 02 questions as I know nothing about it! AS to the meds.......

I use a 2 pronged approach in managing CH. I'm male, 49, about 30 years of CH, episodic. I use lithium as my preventative medication. When I'm on cycle, I take 1200 mg of lithium a day, it reduces the number of attacks by up to 70% if I'm really strict at avoiding my triggers. Mine are alcohol, extended stress, getting really hungry, or major sleep cycle disruptions. Learning your own triggers is mostly trial and error. Other popular first try prevents are verapamil and topomax.

Then you have your abortive strategy. Glad to hear you already have the oxygen, you're WAY ahead of the game. As far as flow rates.....for oxygen to work, your lungs must get ONLY pure 02, no outside air, no exhaled air. There are people on the board who get relief at flows as low as 8-10. I'm a deep deep breather so that would NEVER work for me. I use a demand valve set up. That allows me to hyper ventilate for the first 2-3 minutes, then slow down to my deep cycle breathing. I can abort in 6-8 minutes using that system.

The good news is, high flow regulators are available online, Craigs List, E-bay, no prescription needed and they're cheap.

As far as the different types of re breathers, you want a soft face mask that conforms to your face so there's no air leaks. You want a large enough reservoir bag that you're not sucking it empty and thus geting outside air.

Glad you found us, keep firing away with the questions, someone will be along shortly to help with the liquid 02 stuff.

Joe

I have several regulators but my favorite is a Precision CG 540 dials to 25 lpm.  A demand regulator would waste less Oxygen and I may yet lay out the coin for it but the Precision cost me $50.00+-.

I have several regulators but my favorite is a Precision CG 540 dials to 25 lpm.  A demand regulator would waste less Oxygen and I may yet lay out the coin for it but the Precision cost me $50.00+-.

I have several regulators but my favorite is a Precision CG 540 dials to 25 lpm.  A demand regulator would waste less Oxygen and I may yet lay out the coin for it but the Precision cost me $50.00+-.

Jim,

If your 25 lpm regulator is wasting O2, you need a bigger bag or your flow rate is too high.

The beauty of a demand regulator is that you don't have to adjust it and will give you virtually any flow rate you can take. But there should never be any waste with a conventional regulator with a large enough bag.

Marc