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agreed with the the above 2. getting the O2 is the hard part, tak e the regulator and mask they give you smile and put it in the closet. Get your own! This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit if they are delivering to you then get to know the delivery person and start figuring out how to get extra tanks to stash away for them weekends that just blow your head up! I have been very lucky with my O2 place the last few years but knowing that it wont always be this good I would try to get at least one extra tank out of them a month. Well I have a nice stash of full tanks now and thank god I do. A few months back I was starting to have issues with them charging me 68 bucks per E tank and then told me I was not even covered to get them anymore. Long story short, I have to call them every week and fight on the phone with them for an hour to have the charges reversed. Drivers delivering the tanks do not care and if you treat them nice will do whatever they can to help you out. My place does a crap job tracking tanks so I am lucky, I hope the same for you.

Hi Tony, sorry to hear of this. To clarify- he is getting a good (but sometimes temp) response to O2? The attacks come on quickly to severe like CH? Night attacks mostly? Does alcohol trigger an attack? He has had verapamil? Tried high dose melatonin? Does he have sleep apnea? One could review the imaging as newer onset side locked headache in an older person should always mean reviewing imaging in detail- for instance masses outside the brain may compress the trigeminal nerve.

Thank you, thank you, thank you, thank you! I did order the CH mask, thinking that the mask was the primary issue, which: it was part of the problem, but it's definitely flow rate that's the bigger issue. Will definitely get a regulator on my own and install it ASAP. I will say that the people at that office were really nice, and because I was an "exception" they won't deliver to me, which actually did give me the opportunity to go out there and meet the woman who runs the office (I think it might be a franchise?) in person, which was fortunate, because not only were we able to have a discussion about CH and she made it clear that she understands as much as a non-sufferer (Is there a catch all term? Lucky Majority?) who isn't directly affected can, I was able to be effusively thankful and as charming as I could muster after the weekend I had, and then literally wept with relief when they wheeled a tank out to me. Those of you who asked about legality of Rx refusal - good point! I'm actually lawyer, and I'm going to do some digging... if I can find some broad information or even information for any given state, I'll write up something and post it in General. Thank you again! Wishing you all a great weekend! Six

I am completely screwed up as a result of the COVID. It just took everything out of me to fight it (I was sent home without therapeutics of course even though I felt like I was dying ) and left me totally exhausted. Plus, because I can’t really be around others for the past month, once I was well enough again I have to go into work late and work into the night while no one else is there……so the schedule change has thrown me out of whack and my sleep schedule is a mess. Plus the stress of having to keep up with my workload does not help matters. Our busy season lasts a couple more months but once the damn cough subsides (I feel good COVID wise but because of the cough still have to keep to myself) hopefully I can go back to a more normal schedule. I am so thankful for everyone here who understands and shares tips. So few people (medical professionals included) know what CH is so it’s up to us to support each other!

Ganuchi, I don't know if it would be the same thing as I have not had the pleasures of covid. I do know that when I am exhausted and my sleep schedule is all messed up from the norm that I will get hit more often and harder then normal. This last a few days until I can get back on my normal schedule. Stick with the o2 and caffeine! I carry 5hr drinks around with me they are small and have just enough of what I need to help bead the cluster down until I can get on the oxygen, and if the oxygen is not working as fast as I want or need it to I will also down one to give it a little boost.

....consider a welding hobby in your future if you get the boot....same stuff, different provider.... ....covid has messed with clusterheads O2 possibilities worldwide. besides the universal ignorance of CH already existing, it's a definite supply/regulatory issue in many places. in the US, it's likely not a supply issue. having difficulty believing it is unprofitable (a sale is a sale no matter what the use is for. whether insurance covered or self-pay (50/50 my "career") they made the exact same amount of money off me...shoot, i even picked up/returned tanks myself to save them $). more likely an excuse to avoid the hassles of dealing with folks who are not respiratory patients: we confuse them with our different needs, usage, erratic usage, and weird ailment in general. i don't know what the regs are for a valid script presented in an appropriate manner...but have seen the refusal so many times, in so many places, for so many reasons, that if present it doesn't seem to matter. if there is anyone out there who knows how to call bullshit on this, please share. rant over.... ....re the script for lpm....it really don't matter what the script says, BUY your own regulator (O2 shop leasing is exorbitant) and crank that puppy to exactly what you need. nobody else will know...or care! i wouldn't make a big deal about it with the O2 store if they are providing O2 with your current script....just make sure to keep a script up to date...one less reason to bump you (Lincare required yearly re-cert)... ...abso-friggin-lutely !.....the Clusterkit O2 mask is a Cadillac non-rebreather...which i whole heartedly endorse.... mine is a treasured possession. also have 3 or 4 Amazon purchased regulators of my own that cost less than $150 total. while we recommend 15-25+ lpm, and you might need even more, the specific number is less important than keeping the flow at whatever level keeps the bag full for the next breath... w/o wasted blow by....

We have been trying to help an older fellow clusterhead who is not on the internet with a little team of buddies. The challenge is a presumed cluster cycle that does not seem to respond to treatments that would work for most. I guess I am asking if someone sees some other condition or cause between the lines or has some ideas what should be checked to outrule any other causes for such a tenacious situation. Here goes ... Case is with male patient, I just call him X here, close to his seventies. Cluster headaches started in 2018 when diagnosis was set right away and incredibly lucky X also received oxygen as an attack treatment right away. Head MRI also taken in 2018 and it was ok. He has only one minor neck injury in his past, very large operations with his teeth (several teeth removed) when cause for his headaches was not known. 2019 headaches came back and it was a horrible year, CH being even more severe than now. 5-6 steroid courses did not terminate the cycle and this cycle may have been terminated with RC seeds but not sure. Here and there X has been taking Vitamin D. Headaches were gone for almost two years and now have returned in change of 2020/2021. So X has experienced only around 3 cycles in his lifetime. Current cycle is pretty bad, attacks coming around every 2 hours, for maximum of 15-16 attacks per day (attacks may blend in into one another). I have his attack diary if it helps. Current medication is only oxygen and Diclomex rapid 50mg (diclofenac). No other medications in use. X has been trying to terminate this cycle with psilocybin (mushrooms) and especially before using mushrooms attacks were happening like clockwork. Headaches seem to react to busting, but not by calming down, by increasing frequency and severity. This was expected at the beginning but IMO should not be happening anymore and it is. 4 doses have been 1st dose: approx 1-1.25 grams 2nd dose: approx 1.5-1.75 grams 3rd dose: approx 1.5-1.75 grams 4th dose: approx 2.5-3 grams I asked him could the cycle be happening like it is now if he had not been taking mushrooms and he said probably yes. This is a man who has never used psychedelics but he felt the 1.5 (-1.75) gram dose being more or less the same than the 2.5 (-3) gram dose. X will probably keep on busting and his daughter is delivering him vitamins this weekend for Batch regimen (anti-inflammatory regimen). Some vitamins are hard to find in Finland but especially so in the countryside where X and his wife are living in. I'm personally wondering - Since there are no blockers present, is there such a thing as very personal reaction to psilocybin that even 3 grams would not be felt - Is there some another condition that could be mimicking CH symptoms almost exactly but would not show up on head MRI (something spine related perhaps like cervicogenic headache) Any ideas or thought would be very much appreciated

Hey Dagobah, Good on you! You're on the right track. Love the headache log. Changes in your CH patterns are consistent with the vitamin D3 starting to take control over your CH. Don't be concerned about the total vitamin D3 dose, it's your labs for calcium and PTH that count. As you're slamming the CH beast and making progress, see your PCP/GP for your labs next week. As long as your serum calcium stays within its normal reference range and your PTH is above the low normal limit, keep on trucking! I would go back up on the loading dose until I was headache pain free for two days then restart the taper by adding a day between loading doses every 5 to 7 days. You'll know when to slow the taper. Take care, hang in there and please keep us posted. Hugs, V/R, Batch

Boston Doc Rocks! Tony, Gonna pepper you with a few questions: Can he do a prednisone taper? It won't fix him, but might get him some temporary relief till you guys find something that works for him. Was he sticking strictly to the 5 day dose schedule when using mm? Did he trip? Or was the experience muted? What does he eat? Anything with Tyramine can and will cause his attacks to be more frequent and more intense. Eliminate anything that's high calorie (no cake, pie etc) Eliminate anything that's fermented (no real cheese (the cheese whiz stuff in the can isn't really cheese at all, and is ok). Tons of stuff we eat on a daily basis are fermented or aged and are high in Tyramine. (soy sauce, any meat that isn't SUPER fresh, vegetables more than a few days old (high in tyramine). Anything preserved, also high in Tyramine. J

Tony, please be sure that he is doing his 'post' breathing for five minutes after the pain has stopped! If not, it comes right back for most and we all want to abandon ship when the pain is gone. DON'T!!! It will return with a vengeance! And that ups the number of hits per day! His D levels are quite low! 85nmol/L is about 34 ng/ml. We want it to be above 80ng/ml or 85ng/ml. So, more loading is needed to get there. Yes, I agree that he needs a new D3 test! He also likely needs more D3. On the Melatonin, he can go up to 25mg. I used to go up to 30mg personally. I did not take it all at once, but in two or three doses as I was up with a hit at night. For me, Benadryl is more effective, but I used the heck out of Melatonin for years too. Is he eating 'clean' as they say? No MSG, booze, other stuff that kicks off the CH, right? Some give up chocolate and a lot of foods with a cycle and benefit from it according to them. I can't do booze or MSG. Bacon is still on the menu here. But others delete it during a cycle. Doc has a point too. Hopefully you can check into that bit as well. ATB and thank you for your tireless work for CHers over there!

I find the excuse that servicing a cluster patient's O2 needs has been suddenly deemed "unprofitable" due to the virus situation absurd. While the situation has caused many true supply chain issues, I just can't buy this one. I'm thinking sometimes the virus is just a convenient excuse...... I really have a problem with a business acting like they are doing me a favor by taking my money for a product or service. No matter.... The links posted above will have you (hopefully) aborting in record time.

If your supplier will give you a 25lpm regulator (or higher), that's good. You can also get your own for under $35, and also get the mask that's made for people with CH (bigger bag, among other things) for about the same amount: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit I don't think they can legally decide not to serve people with one condition because another condition is more profitable. O2 suppliers are government-regulated in all states, I'm sure -- certainly in CA, where what isn't regulated? Not to say they wouldn't do it; just that there must be some kind of recourse.

So when I picked up my tank I was told I'm lucky that the woman who took my original call was sympathetic, because they have "stopped filling orders for Cluster Headaches because with Covid and everything, they're not profitable. You shouldn't have been accepted, but you were." She did also say she knew how bad the suffering is so she was happy that I snuck into their system, but the message was clear that they unfortunately won't be of any help to anyone new going forward. Which sucks for anyone in LA in need. I'll keep an ear to the ground. Now to see if they'll take a new Rx from my GP for a higher flow rate - 15L/min isn't cutting it, and that little bag isn't filling anywhere near fast enough for true efficacy...

....thanks...if you've helped even one clusterhead, you've helped us all... .....Apria one of the big boys, you should be able to find locations pretty near anywhere. i used another, Lincare (Apria probably also has a similar travel program i used successfully). never looked at any reviews...seemed kinda pointless. made sure to get to know store managers personally so i was a face/person, and not just a patient number. important, as for whatever reason they churned managers. mostly made a difference in working with insurance and/or self pay and/or stocking issues (e.g. some don't wanna handle M-60 tanks) and/or updating computer systems that purged accounts (frustrating) for us "inactives" (read that clusterheads OUT of cycle). many of us have found it immensely rewarding to get to know and *hint: reward (tips, cookies, thank yous!) the unsung heroes at these O2 shops...the back room techs and delivery drivers. salt of the earth folks, who care about their patients and WILL go out of their way for you..... best jonathan

Me, too. Been dealing with this for 30 years. Luckily my cycles are only every few years, but it's still hell. Hoping this helps.