Trent

Thank you Batch, I had read about the Redneck bag before on Clusterheadaches.com , I have incorporated the hyperventilate method from time to time. My main take away was getting CO2 out and absorbing O2 in. I figure I could have another 10-20yrs of attacks ahead of me so the cost isn't deterring me from the Demand Valve. Also a little safer around the house, with kids ect. For others reading, The hyperventilation method can also help if you do not have O2 with varying success.

If ordering from a Canadian site I have not had too much difficulty getting O2 supplies, the trouble arises when I try to source from the US. FDA Approval ect. I do have a welding regulator for my big tanks, trans fill hoses, and a few 870's, just none with the Diss outlet yet. No restrictions on getting Welding supplies locally.

Hello CH Father, Thank you for your reply, I understand what you mean by the High flow regulators, they can fill a bag faster than I can use it, the timing is my complaint. My go to O2 method currently is - take in full lungs of O2, usually the full 3L green bad, "I could take a bit more", and then hold my breath for 5-20 seconds to absorb (depending on kip level), fully exhale all breath, even last bit crunch method. - "I feel this gets rid of the most CO2", then immediately take in full lungs of O2. The "wasted" O2 is from the timing variables of: 1.) holding breath to "absorb" and 2.) releasing every last bit of air on exhale (usually 10 sec process) and then immediately needing to take in more O2. If timed correctly the bag will be full right when I am finished fully exhaling, most often it is just about full, or has been overfull for a few additional seconds, this is where I waste a little O2, more of a concern on D-size tanks. Why Demand Valve: I find that I have to solely focus on my breathing deliberately and this process works for me best at 9-12l/min, my thoughts are that with a Demand valve, I can vary my Hold breath duration for as little or long as I like, and perform the exhale process as fast "pushing" or "relaxed" normal exhale, when it is time for more O2, it will be ready for a full Capacity hit. My other thought is that I could through in a few tidal capacity inhale/exhales at start and or middle of process varied as kip level and particular attack dictate. Other: I am on D3 regime, do take 5-hr Energy at first sign of hit, have had moderate success busting, get 1 or 2 6week cycles a year, turning 40 soon. Trent. CH Father - I received a life time ban from E-bay for ordering a regulator and trying to have it shipped to Canada a few years ago. No opportunity to appeal as I do have an O2 Prescription.

Hello all, I live in Canada, and unfortunately we have strict laws and restrictions on Medical O2 and related materials. I had tried to order a simple regulator on-line but it can't be shipped here. Are you able to order regulators, Demand valves, ect and have shipped to your address in the US no problem? Do you need to provide prescriptions ect? I ask because I have a few friends in the US, and would like to ask one to buy on my behalf, and then I would take a trip to visit, pay them back ect and then make my way back to Canada. It would probably be Arizona or California if it makes a difference. I would really like to increase my setup for O2, I've slowly acquired 2 Welding tanks, 8 D size medical for travel, a transfil hose, and a bunch of regulars with no Diss outlet. I have prescription, but too ridged and costly to go medical route. I think a demand valve with CGA870 and CGA540 would be an effective way to go. "No more waiting for green bag to fill, or wasting precious O2" Thank you

My experience has been only one side of my head, typically in my temple, closer to ear than eye. A real good one will effect my top gum line, and sometimes bottom jaw as well. it can often migrate to above ear to behind ear, down and a bit down neck. Still through all, the temple area is the most painful, radiating out. Mine are always the same side given a cycle mostly right, but once or twice my cycle has been on left side. Some may consider it lucky, but my top gum line above teeth gets sore first, giving me a 5-10min warning that a cluster is coming, the lucky part being the warning time to get to O2. For the first two years my Nuro prescribed my the Zolmitriptan's, and by the time they kicked in, my attack was almost over. So I would take one if I even had the slightest sensation an attack was coming, this created a bunch of rebound's, and overall did more harm than good. It was a life changer to find this board and learn about O2, and busting.

The Trigeminal Nerve runs above top teeth and below lower teeth. Often people will complain about tooth pain when in a cycle. It also could be wisdom teeth coming in. Further reaching, I was recently diagnosed with Trigeminal Neuralgia, which is different than Cluster Headaches. I currently have the TN on left and Cluster cycle on right. The TN has gone down to a fraction of what it was a week or so ago, but I would describe the pain of TN to be very close to CH, except I felt it more in the gum line's, and teeth centralizing right on my jaw hinge point (I swear I could feel my heartbeat in my teeth). It was like a CH in my jaw, same nerve, almost same pain, but for a day or two, didn't relate at all to Clusters during that time. O2 didn't help it.

Episodic, usually a cycle in Fall, although I got an extra one last year in Spring. Typically 4-6 weeks. I started getting them when I was 27, not diagnosed until I was 36. I did buy the cluster mask from Clusterheadaches.com and found it to work well. I prefer the mouth piece to the mask. I'm currently running a "welding O2" setup as I haven't been successful in getting Medical O2 setup, even though I got my nero to write a prescription.

Kat, My abort times at 8L/min are usually 10-15min, if I catch the CH during the first five minutes. I'm somewhat "lucky" if there is such a thing with these CH's, in that I can tell a few minutes before I get an attack. I do usually drink a 5-hour energy shot at first sign of impending attack, I also follow the D3 regime while during a cycle but often fall off wagon in between cycles. If I got woken up last night at 1am, no energy drink (nighttime) already at kip 6-7, I put it on 12 l/min and solved in 10 min, turned down to 8 l/min for another 5-6 min to ensure abort. I do bust w/mm every 5 days and have had some success with that. A few aborted cycles over the years, and if not aborted, I find that it reduces quantity and severity of attacks.

I have been successful at 6 L/min and 8 L/min by breathing out everything "crunch method" and then big inhale, hold O2 till 6 sec before bag is filled, then big exhale … repeat. For me a big inhale 3L bag, holding it for 10sec, exhale all takes 6-8 sec and then repeat ends up being 8-9L/min.

Almost always feel super hot, I'm not normally a sweater, but sometimes I'm ripping cloths, socks off.

Hello CHfather, Thanks for reply, I'll try phoning around. I should sell it as an opportunity, "Do you guys have any doctors that want experience in a rare disorder in order to broader their knowledge?" I do have the Welders O2, would like to get legit, to get smaller canisters and potentially easier refill. I do not have any written documentation, unless it's in my public health file. I do have three years worth of detailed CH diary to plead a case with. Have had success with busting as well, just in process of really covering my bases.

Long shot, but anyone know a Doctor in Edmonton that is knowledgeable in CH, and would be willing to Prescribe O2? I've been to a few so far, and have no luck. I did try the Recommended Doctors list, but the one listed no longer takes new patients. Thanks