Willie Pete

Thanks for the follow-up and good luck. -Willie

As Jon019 said you can get your own regulators and just rent the tanks for now. I found these on Amazon. I'm partial to Amazon because I've never had any problems with any purchases and with my Prime account I get most everything the next day. It also has a picture so you can get an idea of what you're looking for in case they have one for sale on site. You'll need the O2 wrench or a pair of pliers to open the stem on the smaller bottles. Those things get lost so I tie them to the regulator with a piece of paracord. Oxygen regulator for "E" and "D" type cylinders: https://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ Oxygen regulator for "M" and "H" type cylinders: https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBI82/ref=sr_1_8_a_it?ie=UTF8&qid=1503190565&sr=8-8&keywords=large+oxygen+cylinder+regulator Oxygen wrench for the "E" and "D" type regulator" https://www.amazon.com/Oxygen-Key-Wrench-Plastic/dp/B0046UOQGO/ref=pd_sim_328_3/144-8413806-1619156?_encoding=UTF8&pd_rd_i=B0046UOQGO&pd_rd_r=N6BND1B2XP9NQST3A53M&pd_rd_w=JFWtF&pd_rd_wg=cs4gO&psc=1&refRID=N6BND1B2XP9NQST3A53M Brass washers to place on the regulator. Look for the three prongs that connect to the bottle. The washer goes on the nipple neck on the regulator and seals so the gas doesn't leak. New oxygen bottles usually have a tear off tab with a new washer so use it. But sometimes it's missing. It doesn't hurt to have some on hand. I also use the oxygen wrench on the butterfly screw to give a little extra leverage to help give it an extra 1/4 turn to tighten it even better. I use the large hole with one of the spindles sticking out and lay it flat and push against the other to tighten it. https://www.amazon.com/SP-Medical-Oxygen-Regulator-Washer/dp/B004IJ3VNW/ref=pd_sim_328_4/144-8413806-1619156?_encoding=UTF8&pd_rd_i=B004IJ3VNW&pd_rd_r=N6BND1B2XP9NQST3A53M&pd_rd_w=JFWtF&pd_rd_wg=cs4gO&psc=1&refRID=N6BND1B2XP9NQST3A53M New non-rebreather mask. https://www.amazon.com/Non-Rebreather-Mask-w-Vent-Adult/dp/B00B1FJNXS/ref=pd_sim_328_5/144-8413806-1619156?_encoding=UTF8&pd_rd_i=B00B1FJNXS&pd_rd_r=N6BND1B2XP9NQST3A53M&pd_rd_w=JFWtF&pd_rd_wg=cs4gO&psc=1&refRID=N6BND1B2XP9NQST3A53M

CF, I'm curious to hear if the nerve block helped?

I'm writing this as someone wearing a couple of hats right now. I am a CH sufferer and a member of the medical community for 30+ years. I served as a Combat Medic in the US Army and when I finished my tour and returned home I went onto the streets as a Paramedic where I still work to this day as a Critical Care Paramedic. I'm in Texas and know the Texas Laws and each state is different, but the oxygen law is pretty much the same. Because of my job I transport a considerable amount of patients that are on ventilators and are sedated and require oxygen. This is one of the apps I use to help me with oxygen calculations that is free on Google Apps: https://play.google.com/store/apps/details?id=com.ccn8.gasdurationcalculator Just enter the values of your device to get the amount of minutes left on your personal bottle. Because Medical Oxygen is listed under the USP (United States Pharmacopoeia) it is a drug and requires a prescription. However, welding oxygen isn't. The only difference is, from what I'm told is that welding oxygen isn't filtered as medical oxygen is and it may have some impurities in it that may cause a certain pneumonia. That is what I've been told, but I've never seen it ever happen nor has anyone ever produced any citations to back this up. It's just taken at face value. Anyways, the Medical Oxygen Supply folks that I have met that run the desk that I have met have not exhibited with much medical training. They know some things, but it usually involves billing issues. A concentrater has an upper limit of 10Lpm. What we do for patients at home that require a higher output is "daisy-chain" two concentraters. Take two 10Lpm concentraters and use an adapter to connect both hoses together into one to the delivery device. It's called a "T" device or a "Pigtail." Plug it in and let it run. It does work. That is what the military is using in field hospitals in combat zones today. The difference is the concentrater pumps out about 94% on average versus 100%. They'll both work. 100% is more effective, but I can make the concentrater work just fine it just takes just a little longer and more patience. I use a 10Lpm concentrater at home, but it takes a little training. One should not use anything other than a non-rebreather for it to work properly. I hope this helps. -Willie

Dallas Denny, Thank you for the replies. I did edit the original post and made the appropriate corrections. It should have originally read that "they can advertise, but cannot actively pursue or seek out patients." I was post-headache and drained from the day when I typed the original post. I was excited about the meeting and wanted to share, but was fearful of going to sleep and triggering another headache. I hope everyone understands my error. Update: The Occipital Nerve Block seems to be working. I had 14 hours of uninterrupted sleep. When I woke up I had zero pain. No shadows, no raw nerve pain, no facial/scalp/neck tenderness. Nothing. It's been 26 hours since the injection. I'm two months into my cycle and it's seems to be temporarily in remission. I'll head over the the treatment area to follow-up. -Willie

I believe they can advertise, but not actively recruit. I'm not the best with words right now. Thank you for bringing that to my attention. I did word that rather odd, Dallas Denny.

I would like to begin by saying that I have been reading the forums for just a few years as I did not know they even existed until just a few years ago. This is my first time to ever post here regarding Cluster Headaches. I was diagnosed with Cluster Headaches about 27 years ago. I've been under the care of a Neurologist for the last 18 of these years. I'm currently on the downside of a rogue cycle, as I usually get a cycle in the Spring or Fall ~+/- 2 weeks around the time change. This cycle hit me unexpectedly in June and I was completely unprepared. The only good thing that has come of it is that I learned some new things regarding CH. I met with my Neurologist today (03 August 2017) and he performed an Occipital Nerve Block just behind my right ear with an injection of Lidocaine and a long acting steroidal. Afterwards, I had an appointment with Dr. Burish at the Will Erwin Headache Research Foundation, Memorial Hermann Health System, Houston, Texas. Dr. Burish met with me personally and told me that this study is 10 years and has 20 million dollars invested into it and the gentleman that made it all happen started this because he lost his son to suicide at the age of 24 years because of Cluster Headaches. Their goal is to find a cure. I signed the necessary consent forms and gave tissue, blood, urine, tear and saliva samples. There were some questions and some online questions to perform later. Dr. Burish said they have been going for about 2 years and probably have ~50 CH sufferers enrolled. I'm hoping that anyone who reads this will contact the Will Erwin Headache Research Foundation at 713-238-9100. I get the voice mail and left a message. It only took a day for a return call. I don't know if their is a receptionist line to actually speak with. They are in Houston, Texas, USA. I'm sure for patients samples you would have to work out some type of arrangements with them. I've read where in the past 25 years only 2 million dollars was spent on Cluster Headache research. Once more people become enrolled in the Will Erwin Study I have a feeling we will make a huge impact on the Cluster Headache community in as much as Cluster Headache awareness. Having medical codes to where we can get more than 9 Imitrex tablets filled for just 30 days, medical code for Oxygen without having to have a low pulse oximetry reading, have the ER admission clerk actually understand why you need the oxygen instead of stuffing papers into your hands, we won't have to fight with the overzealous pharmacy that is more knowledgeable about our condition and patient/physician education interaction than her 3 minutes of blabbering about drug interactions. You get the idea. I know any one who has this has dealt with it and many other things that don't come to mind now. As far as I know this study isn't limited to Houston, Texas either. That's why I said I'm sure they have some type of work around to get the samples needed. But they need volunteers. My wife was with me and enrolled because she has chronic migraines and they are studying those as well, with Cluster Headaches being the main focus. I hope anyone who reads this that has Cluster Headaches calls and does the preliminary consult over the phone. If you know someone that may have Cluster Headaches please share these web links with them. Now that I am enrolled I'm looking forward to contributing to all who come here and learning as much as I can from each and every one of you. Take care. The following are the links to the studies I have mentioned, they are all interrelated : http://www.cureheadaches.org/ http://neuro.memorialhermann.org/wec/ https://www.facebook.com/cureheadaches/ https://med.uth.edu/neurosurgery/wec/