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Thank you all so much for the recommendations. Just for an update, I saw a neurologist in Toronto a few weeks ago and got a prescription for E tanks (and my health insurance covered the full cost too!.) My attacks are much shorter now thanks to the oxygen and it gives me the hope to push through the pains. Thank you all again,

....this is unfortunately obscure to far too many folks younger than many of us.... a full side (another obscurity) with Duane and Boz plus God's studio band, cranked at midnight, in a dark room, when i'm feeling thrashed.... improves my whole outlook on life. it starts out slow and mournful, but golly, then it just.kicks.ass! ...thanks for the intro to Lorn xB

Hey all, I try to relax to music when I can. It does help and there was a forum member here a while ago that claimed they were beating CH with just a music regimen! I forget who that was.... Anyway, post your picks here of the stuff you like that may be fairly obscure so we can try out some new stuff. I'll start with one artist. Lorn is pretty good. I have many.

Thank you for all the input and motivation to pursue o2 again. I saw a new OB yesterday who had actually treated mothers with CH before! I was shocked to say the least and relieved about being understood. She agreed with increasing caffeine intake to mimic a steroid and suggesting visiting an ER during an attack for high flow oxygen too. I've only sought emergency help for CH that lasted longer than a few hours. I'm just not keen on an ER visit for relief when I will have another headache roll around in a matter of hours. Im in a rural area outside of Pittsburgh and there are drs. On the list on this website that I'm working on getting in to see but you guys are making me think maybe I can get my OB to prescribe o2 since they suggested it.

Too funny Xboss!! After you watch Acid Rain, a YouTube page pops up which includes a video on 'How to pick Liberty Caps'!!!! I enjoyed all three of the songs guys! The guitar was haunting and driving too Jon. The video to Anvil was pretty amazing Xboss! I look forward to additions to this thread!!!!

PS 7LPM is way to low. We recommend at least 15 lpm w a nonrebreather mask but 25 lpm is most effective for most of us.

Lactation safe! I know @xxx has several grand kids whose mommas were on his regime or a variation there of...

And best part is there is no side effects except for may be drying you out. Although I fell asleep in my long post hit phase last night, and got a little dry. It’s the exception for me. Unless you have severe COPD and you live at a saturation in the 80s there is no such thing as over use.

Aside from the Vitamin D protocol which has a similar success rate to busting, oxygen will be your best friend. It’s worth the money! Are you sure insurance won’t cover it? CMS approved it and insurance cos usually follow suit. Unless you’ve tried to get it in the last 6 months I’d try again. There is a trusted Dr list in the general board. May be one is close to you and you will get real help. Where are you located? My heart goes out to you. I couldn’t imagine how hard this is on you.

...this is otherworldly in straight frame of mind....i always figured it would be awesome in an "altered reality"....

...i'd forgotten about this dude...saw it yrs ago....and howled with laughter. forget that "tap firmly" shit....i've done everything he showed thousands of times (he's seen hits is all).... at high speed and full force. it....ahhhh....ummm... does NOT work....bwaaaaaaaaaaaaaaaaa ....and dang it Brian....ya got me searching for that country song!

Oh boy.. The nose blowing had me dying!!! Half expected to see a big booger come flying out

If I'm "medicating" my ch I always have Neil's Harvest album ( Harvest is under-rated as a music choice to take a journey on in my opinion)and the brick in the wall cd with the comfortably numb cut....for every day it's old, classic country on willies roadhouse or the eagles and John Prine on the boom box! DD

Boo-ya!!!

Jon, isn't it awesome that her OB has had Chers before???? I am thrilled for mhowcroft!! And that the news is spreading in areas that desperately need it!!! Color me very happy! Far too many have had no support for many decades. As in been there, done that!!

....aint no maybe about it....any physician can prescribe. all 7 or 8 PCP i had before a neuro were fully willing after LISTENING to me, and checking standard medical reference guides ...which list O2 as the #1 CH killer sans triptans. you got jackpot with an CH knowledgeable OB and i'm liking (tho surprised) the caffeine acceptance. an energy drink (2 oz 5-hr energy type) with minimum 120 mg caffeine and 1000 mg taurine downed quickly at first sign of a hit improved oxygen effectiveness greatly for me. some find just the caffeine sufficient....be sure to check with OB for acceptable levels of caffeine and certainly if taurine is ok during pregnancy.... ...see this link for guidance on script writing plus other good stuff... High-Flow Oxygen Therapy for Cluster Headaches | Treatments - Clusterbusters

Yes, yes, yes!!!! Great solution! I would definitely pursue that option. She can state that due to your condition and location, this is an imperative for you. Run the D3 Regimen past her and see what you get there too! Since she is aware and helping CHers now, I suspect that she will approve it, perhaps with some limitations. Being a woman, she definitely understands the need for calcium and D to prevent osteoporosis. Please show her the protocol and see what she thinks. It does have an amazing track record.

Yeah, that is a crazy video! Here is one I like to listen to when busting

Here is the first early D3 Regimen protocol: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Batch's kids and grands are all taking the vitamins for general well being. I personally use this Regimen to prevent my clusters and have not had a full cycle in years thanks to it!! All healthy stuff.

How many have they given you , As CHF has said you could really do with the larger M or H tanks as the E tanks only last for 20mins i get an hout out of my H tanks . Ive managered to get my oxygen nurse to prescribe me 5 H tanks and 5 E tanks so im not on the o2 supplier all the time . Make life a litte easier

Good going, kmel' !!!! Just as a small note, I think it's rare for a prescription to specify tank size, so it seems most likely to me that the supplier has decided to give you E tanks. A bigger tank (M or H) is a lot more convenient for you and for the delivery people, at least if your cycle is going to last a while. You might check on what they'll give you. Ideally, an E for portability and one of the bigger ones for at-home use (at least one of each type -- with regulators and at least one mask). What you have might work out just fine, of course. So pleased that you got it doone!

I give up, I can’t find it. It was a country song about CH. a Neuro played it fir me at my first CH visit. He was just tickled pink to find it on his phone and played it for me. It was on iTunes but I can’t find it. I’ll call the worthless doc or stop in and see if he can tell me what it is.

....nope...impossible to say enough.....OXYGEN should be highlighted in every CH forum. may not work for all, but is among the rarest of the effectives: works bestest for the mostest! i am sad when a fellow clusterhead has exhausted, w/o success, all the critical variations of use (flow, mask/valve/tube, technique or timing)....SADDER STILL when they don't or won't exhaust every attempt due to lack of information, misinformation, bad luck, unavailability, frustration, or just frigging despair... ....starting in 1985 and on, there was nothing comparable for me. i KNOW O2 saved my sanity, pretty sure it probably saved my life. have seen SO MANY reports of same, with the tears of gratitude nearly leaking from the text, that i will never not be a fervent supporter... ....the success rate now only recently rivalled by the D3 regimen and busting.....COMBINE the 3 and you really got somethin'....

Also interesting rid bit found when searching: https://www.rollingstone.com/music/music-news/bad-brains-h-r-raising-money-to-combat-rare-headache-disorder-182309/

Nor music but amusing and found on YouTube when searching for this country song about CH. https://youtu.be/7GadfaskoH0

Claims to stop headaches

PS, please look into Oxygen. I put it off for the first year I had CH and even though I have some stubborn CHs that it doesn’t always work for it’s truly a godsend. If you want to see if it works for you go to the ER during a hit aka attack and see if it helps. It has to be high flow, at least 15liters per min. Preferably 25LPM, but most ERs don’t have a regulator that goes that high. With a nonrebreather mask. sorry if I sound like a broken record...

Busting isn’t part of most peoples abortive agent. There are some that try the SPUT (Small piece under tongue) and have reportedly gotten relief, but that’s not been true for most that have tried it. When we say busting aborts CH we mean aborts the cycle or gives you CH free time for chronic CH sufferers. I highly recommend connecting w @xxxand try the D protocol.

Hi mhowcroft! So happy that you found us. I must agree with the 'You need O2' statements above. I know that requiring O2 treatment for CH has been added to Medicare, so there may be hope in that area. Can you have your OB prescribe it and submit the request? Perhaps your insurance co. has also had to change their requirements for O2 needs. I do strongly suggest that you speak to the anesthesiologist regarding delivery! Epinephrine is well known for kicking off our heads and is usually in anesthesia. They need to know what this will do to you and formulate your meds accordingly. I have suffered my very worst CH post surgery and learned the hard way to tell them, not ask, tell! They should be able to accommodate your needs there. I sometimes wonder if the cycle set off post delivery is caused by the anesthesia as much as hormones? I had severe poison oak with my last one and was denied steroids too. Even though the mess was in my eye!!! It can be and is heartbreaking when they say 'NO!' Get your O2 set up now, either way that you have to do it. You will be grateful for the relief. Then utilize the 'non-busting' methods of treating your hits. Energy drinks, V8 Energy, or coffee. I highly doubt that it will keep you up. Feet in screaming hot water. Ginger tea or candy for 'shadows' - that lingering headache that drives us nuts on occasion. It can be a huge help. Read up, but I don't think it is contraindicated. And they abandoned the whole 'coffee during pregnancy is bad' a long time ago due to lack of fact. Besides, soon you won't be pregnant. I know that you will want to keep these internal additives to a minimum till you see how/if they affect your newborn. If you are getting nocturnal hits, then rest/sleep in a recliner with your heart above your head. You will wake sooner and be able to take action quickly if needed. Personally, I would investigate and not rely just on the dr. input. They can have limited knowledge in a lot of areas and just repeat a mantra to you that is not valid. All the best for you and your little one!!!

OXYGEN!!!...your best bet non-medication (traditional or alternative) hit killer. no side effects, no baby harm or medication pass thru, quick, easy, relatively cheap in my experience...tho i would have freely gone into debt for the sanity, perhaps life, saving benefit. when insurance didn't pay for me i made a self pay deal with the O2 shop. welding O2 will bypass all the hassle.... except for the logistics. is too bad, but it won't change cycle length. proper flow, mask, and technique all critical.

Haven't been through it. I don't think the D3 regimen is likely to have any super-quick effect, but it might shorten your cycle. I don't know about that regimen and pregnancy, but I'll bet someone might. Oxygen seems to me to be by far your best bet if hormonal shifts don't do the job for you. Without a prescription, you can set up a welding O2 system, as a good percentage of people with CH do. That can be done in a couple of days, for maybe $200-$250.

I used to live in Toronto and saw Dr. Kingston at the headache clinic in Women's College Hospital. He was one of the best doctors I've ever seen. You need to get a referral, and it took a couple of months to get in, but it was worth it.

You can change the title to “ this has a one in a million chance at working” I could care less. If one person finds relief it was worth the fight .