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Hey all I just had my wisdom teeth surgery and it went great! 2 of my teeth were imacted and the doc said they just had to come out. He researched cluster headaches before hand and was able to do the surgery with no epinephrine! Just made me feel sedated and it was over in 30 min. Thanks to everyone who informed me about epinephrine via the forum. Much appreciated. Smoothie time! Kat

A concentrator doesn't really do the trick for aborting cluster headaches. Your script needs to read "100% oxygen at 10-15 lpm via non rebreather mask Use prn to abort cluster headaches for 10-20 minutes". You need the O2 delivered via tanks, not a concentrator. It would be nice if a concentrator worked but it does not except in rare circumstances.

Hi Lady Graham! I know what you are talking about. Mine began at 22 as chronic. Low level pain and lasted 20 minutes. I took Enderal (sp) and another drug for them. Doc's could not make a diagnosis. I would get hit about 8 times a day when in high cycle. Then a reprieve! 10 years pain free. During that time, the beast changed and grew. When it returned, it was M.A.D. I then began with the cycles I described above. Now I am over 70 and still have the lovely things. Glare..... Please.look into the D3 Regimen. It is over the counter vitamins that you take daily. It is best to get a blood work up including your D3 levels. This can be a huge help in reducing the level of pain. What are you taking now? Do you have O2 and a non-rebreather mask with a regulator that goes up to 15lpm? Or are they treating you for migraines not clusters? ATB

I should have mentioned this in my previous post. Because most O2 suppliers are dealing with COPD-type ailments, they are used to supplying very small tanks (D size or E size) for portable use. You need a way bigger tank for home -- an M tank or an H tank. You also want at least one E tank for portability (car/work). I'd be surprised if they don't also give you some kind of runaround about this. Tell them that they'll be bringing replacement tanks to your house every other day if you don't get at least one of the big tanks. More than one is strongly preferred.

Great reply from Pebbles'. The reason a concentrator is ineffective is that it makes O2 from room air, and it is not 100% pure O2 (there is still some room air mixed in). Plus, the regulators on most concentrators don't go up to 15 lpm (liters per minute), which is where you want to be. I'm telling you all this because it's likely that the O2 supplier has no experience providing O2 to someone with CH, and you might have to educate them a little. I imagine 95% of their business is providing low-flow O2 from concentrators to people with COPD-type ailments. For those people they typically also supply not a mask but nasal cannula. You need a mask. For relief from CH, you want the purest O2 possible. That also means that when you get your mask, you might find that there is a circle of small open holes in it. Usually, one set of holes has a gasket behind it but one is completely open. Because you do not want to inhale any room air, you should cover the open holes when you inhale. You can use tape, or your thumb. You also want to hold the mask firmly to your face so that you get a tight seal. Eventually, or right away, you should get the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

Oct 21st, Cycle gone...……….. Still taking prednisone, decreasing dosage down to 20 mg per day. Started the D3 regimen, and seemed to work. YAHOO!!!!!!!!!!!!!!!!!!!!!!!!!!!! 2 WEEKS WITHOUT AND HEADACHES!!!!!!!!!!!!!!!!!!

Really appreciate your support, will definitely keep this thread updated as I continue the doctor visits.

Sounds like hemicrania continua to me. https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page

Getting the head scans and tested is a good start to rule out anything else. Next doctors visit you have try to get a prescription for oxygen. You will need to use a non rebreather mask and a flow rate of up around 25lpm. You can search oxygen on this site and find a tun of information on it. I will also down a 5hr energy drink on my way to the oxygen to help abort the attack faster, some will use coffee or other energy drinks. The Vitamin D3 is another good thing that will not hurt starting today and will help with more then just cluster headaches. Read up on this site and ask a lot of questions and people on here will be more helpful then any doctors you will meet. Welcome to the site.