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Drat. System lost my entire post!!! Scoobs, I have not heard that living by the ocean helps. Especially with storms like hurricanes causing barometric pressure changes. That is a major trigger for many. Have you read he O2 file in the Clusterbuster Files section of the board? What type of set up do you have now? Mask and flow rate matter a lot! Pred is used as a 'bridging' medicine until a preventive like Verapamil kicks in. Tylenol and Advil normally do not help much if at all. Have you been prescribed a preventative at all? Pred. is not used long term. You really need a Neurologist - headache specialist if possible - to diagnose you. And get a scan done to make sure there is nothing else going on up there. You might want to start your own thread so members can find it more easily. Your posts can get lost in an existing thread. Oh, and welcome BTW. Sorry you need to be here, but you landed in the best spot!

Yup...what CHFather said. I always had an M tank for home...and a buncha e-tanks for out and about....AND peace of mind. Each needs it's own regulator...again...on the internet not too expensive. Some O2 shops "require" you to rent these regulators....tis ridiculous...buy yur own. A nonrebreather mask is not just a good idea...its the ONLY idea...don't let 'em give you nasal cannulas or a regular mask with holes.... I like the idea re educating the O2 shop...in my experience it was the manager (smooze 'em...get to know them...put a face to your patientness) of the shop who was (or not) interested. Met both kinds...the "don't giva damn"...and the "wow, that's cool, thanks, I can use that for my other ch patients"...so give it a go......... ....and yeah...we are a special group...clusterheads are "clusterfukked"... so we look out for each other...... Best Jon

A lot of people have said that Florida seems to be particularly backward regarding oxygen. It sounds to me like maybe they're intending to give you a concentrator (a machine that makes O2 from room air), not cylinders. No good, concentrators. This is what they're used to providing (for old folks with COPD) -- a concentrator with a limited built-in regulator, and nasal cannula (and maybe a tiny portable cylinder that would be practically useless for you) I've sent you a PM about a small part of this. But you have to persist: You want at least one large tank (an "M" tank or an even larger "H" tank) and at least one smaller, portable tank (an "E" tank), both with the regulator your doctor prescribed, and an non-rebreather mask (which the doctor should also have prescribed). Usually the prescription specifies the lpm and the non-rebreather mask ("NRB mask"), but not how much O2 is provided and in what form. A good provider will give you multiple large tanks and multiple smaller tanks. jon019 is right that once you get the proper tanks and mask, you can buy your own regulator for higher flow rates. But I would think that it is legally required for them to provide the flow rate that your doctor specifies. Before you buy a regulator, you have to know what size tanks you have. For medical oxygen, the larger tanks take a different type of regulator (CGA 540) than smaller tanks (CGA 870). If you get a 15 lpm regulator, or even a 12 lpm, it just might be good enough for you. I have found that oxygen suppliers are willing to be educated about CH. Many of them have never supplied O2 to someone with CH. Often they have a respiratory therapist on staff who might be willing to talk to you. This is a link to the JAMA article, which might be something you want to provide to someone at one of your possible suppliers. http://jamanetwork.com/journals/jama/fullarticle/185035

I have been doing the same mistake. I used o2 full bor until I found relief the stopped and layed down to get another 1hr later . I was advised to try to use it for longer... Once you get relief Turn it down to say 10l for 5 minutes, then 5l for another 5 minutes, the even Lower like 2 for another 5 minutes. Then put it away for a bit. Don't be afraid to use it longer

Mit12, ++ CHF's post. Staying on the O2 for 10 to 15 mins after the attack is gone most always keeps the attack from coming back (for me). J

Damn. Sorry. You're staying on the O2 for 5-10 minutes after the attack is aborted? That's all I can think of. Adding an energy shot or caffeine to go after the next attack harder? Anything else going on -- high pollen in your area. for example?

man, so glad you guys are here. A truly special group in a world full of fucktards.

Hi Chf Several have been able to pass along info to Dr McGeeney and he is now administering his version of the protocol......and, he has trained his brother in law, Dr Rick, who's been administering it on Saturdays at his OKC pediatric practice so his work will live on......all the folks I've talked to held Dr Mike in high regard and are grateful for his "outside the box" procedure!! DD

240 verapamil is very low for CH - For years I dismissed Verapamil for being a waste of time, then finally saw a Cluster specialist who was able to up the dose. This dr maintains that there is a dose of Verapamil that will work for everybody - it's just that some unfortunately can't go that high because of blood pressure / other medical problems etc. Once I ramped up to 560 verapamil it was like a switch turning them off - and as CHFather said some people need up to 960. I have side effects of a bit of dizziness and lethargy, but after a couple of weeks they disappear - please persevere! Not sure what country you're in but UK GPs aren't able to prescribe the high enough dose so you'd have to be referred or just pay for a private appointment and been seen straight away. Good luck!