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sierra last won the day on March 5 2021

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  1. Are you sure the tank was full? take the regulator off and just crack the valve on the tank for a second, should be high pressure escaping when you crack the valve...if not, the tank is empty.
  2. Hello Jacob, most of the people on this site have been where you are now. In order to get the best advice/help please tell us about your back ground with treatment, a lot of people think they have tried 'everything' before coming here and that is not always the case. Do you have oxygen and know how to use it properly? if not please read up on it and check the files on this site. Are you currently taking any Dr. prescribed meds ? if so, please let us know what they are. Have you been diagnosed with cluster headaches by a doctor? There is nobody here that can 'cure' cluster headaches, but there are plenty of smart people who can teach you how to manage this awful disease and hopefully help get you some pain free time. I found this site about 4 years ago and it changed my life. Please tell us what you have tried, and what you are doing currently to try and manage the pain, and we will try and help you.
  3. Thanks for posting CHf, at least some part of the medical community is trying to help. It's good to keep up with progress.
  4. Hey, finally a discussion I think I can add something to. I am no oxy expert but I am a hell of a technician with anything mechanical. You have to keep in mind that 'flow' is a combination of orifice size and pressure(psi). The bag on these masks is nothing more than a temporary reservoir. If the bag is not completely exhausted after you inhale deeply it is big enough, if it fully re inflates while you are exhaling, your flow is probably adequate for your lung capacity. That 22 gal. bag may look cool but I don't think it's helping anything. The one way valve in the mask is a simple one that lets the oxy out and keeps your exhale from going in, but it is also a very primitive one that must blow-off at a predetermined psi so the bag doesn't explode, plus they all leak a little. So, while you are exhaling or holding your breath all that noise you hear is a combination of oxy flowing into the bag AND escaping past the blow-off. In my opinion, a demand valve is the way to go.....it will conserve oxy and not waste it, plus the flow rate will be a lot steadier without the bag. Ha, all this from a wise guy with a welding tank and regulator.......
  5. CHF, thanks for the correction....I understand that the spray works for some people. I just tend to have a short fuse when it comes to the medical community not advising patients on the proper use of oxygen. Trex is a love/hate thing with me, I still keep some around and always take it with me when I travel in case of an emergency. However, before I found this site trex was my only weapon. When you are getting hit 5 times or more in a day it's like an addiction. I learned how to split the injectors and experimented with the dose. In my case, anything less than half (3mg) would not abort for me. Thanks to you and your excellent white paper on oxygen I learned how to get away from trex. I eventually learned how to bust trying different methods. I recently got lazy in my management of CH and got caught without any busting material, I felt like a newbie struggling to get things under control. I am back in remission and trying to learn from folks here like you how to help others who have just discovered the site. I think the toughest thing for a new visitor to get over is that they will find better help and advice here than they can get from the average neuro, sad but true. They may all be 'doctors' but somebody graduated last......we just don't know who. I will be forever in the debt of the founders and moderators of this site who have taught me how to manage this awful disease.
  6. Hi Jen, CHfather is one of the most knowledgeable, experienced people you will find when it comes to CH. Right now you need to think about the difference between aborting an attack and then preventing one. Your first priority should be to get oxygen now. Please read up on the attachments from CHfather....get the mask first then focus on the oxygen. Every area/doctor is a little different, some of us have trouble getting medical oxygen and just use welding oxygen. Once you have it you have to practice your breathing technique .....read the files and watch the videos. Oxygen is used to abort an attack, it will not prevent one. When used properly it can abort an attack within 10 minutes without side effects. Some of us have developed breathing techniques that can abort even quicker. Do not waste your time with immitrex/sumatriptan pills or sprays, the injectable sumatriptan is a good abortive but leaves you feeling really lousy afterward and can only be used twice a day. I am a little harder on the medical community than most here. I went through 5 different neuro's and only one provided temporary relief. Most of them have limited knowledge of CH and keep throwing hand me down drugs developed for other purposes at you while you continue to suffer. Ask questions, there are plenty of good folks here who will help you. This is a damned awful disease that must be brought under control and closely managed if you want your life back. Please get oxygen ASAP then come back to us with questions.....keep reading the files here you will learn a lot.
  7. Mit, do you put them in the freezer?
  8. I would be willing to participate if it helps the cause.
  9. Welcome Debs, let's start with...have you seen a neurologist, if so, what was the diagnosis and suggested treatment. This place is a great resource for those who suffer with CH but we need to know a little more about your situation and how you are being treated. Please poke around the site for a while, read some of the threads that sound similar to your situation and some of the files on oxygen use and procurement. Please post again with some info on how long you have had CH, is it a seasonal thing, did it just start etc. I am a rookie at trying to help others but there are plenty of folks here who have a far better understanding of CH and it's treatment than any doctor I have ever met. You will find help here, I did about 18 months ago when I was in a very dark place with chronic CH and they saved my butt. Sierra
  10. I took it for about two years, before it stopped working for me. I took it as a daily med, I forget the dose. It was prescribed by my neurologist. If I remember correctly, I took it for about 3 days before it kicked in and the headaches stopped. I was able to tolerate the constipation with a laxative but the fatigue was frustrating. It's was a good news/bad news thing......good news-CH was gone......bad news-had to live with the side effects. As it is with most meds, everyone reacts differently. In my opinion it is worth a try but you need to develop a back up plan in case it stops working or just plain doesn't work for you. Good Luck Sierra
  11. The vast majority of posts on this site are from new members who desperately need help, and that's great. The moderators jump in and provide the best advice and guidance you will find anywhere. I was lucky enough to find it in 2014 after my neurologist threw up his hands and said 'I don't know what else to do'. (I was on my fourth neuro at this point) after over 10 years as an episodal CH I had become chronic and verapamil just stopped working. I was having 5 attacks a day and the only tool I had was sumatriptan, insurance only covered eight boxes a month and I had to buy the rest. This went on for over three weeks until I found the site, learned about oxygen, and read every thing on here about busting. I tried seeds and that did not work for me. By pure luck I was able to procure some schrooms, and broke the cycle on the first dose. I had two doses left so I felt comfortable. I went about 9 months before the attacks returned, took another dose and busted again.....problem solved. I don't think I ever thought I was cured, but going 9 months pain free had never happened before. As I look at the situation I am in now, I just plain got lazy or complacent or what ever you want to call it. My attacks returned full force two weeks ago and I had one dose of schrooms left. When I took them out of the bag I had them in I discovered the vacuum package they were in had been cut. I took them that night and nothing happened. My guess is that they just lost their potency from not being sealed and being over a year and a half old.....panic was now setting in. I have two 125 cu. ft. tanks of welding oxygen and I know how to use it, but I had no busting supplies. I have tried to procure some more schrooms with no luck at all. I ordered some truffles from the Netherlands that should be here in a week if they make it through the system but there is no guarantee. I just finished my second week of full force attacks at the rate of 5 a day, all coming at the appointed time. I don't even know if truffles will work for me but I have to do something. My point of the post is this......I have never read anything about a long time clusterhead being 'cured'. We are going to have this damn disease for the rest of our lives and it requires constant management and preparation. Always have a 'plan B' whether you are using meds from the Dr. or busting with something legal or not. Nobody owes us anything, nor should we expect it. It is our problem and we need to deal with it in what ever way works for us.....or suffer the consequences like I am now. This situation has also reminded me that nothing is 'free'. The great people that put this site together and moderate it have helped so many with so little deserve our financial support. (I got lazy in that department too) after going 9 months pain free I failed to check the board to see if I could help somebody and also failed to donate what I could......it will not happen again. Sierra
  12. Welcome Chris, chfather is the expert on oxygen here. I hope some of that 25 pages you read was from his white paper. The big deal is a non rebreather mask and about 15 lpm. You will find many threads and stories here that are similar to yours where the perscribed pharma stops working. The other thing you will learn is that this damn disease morphs and changes over time.....I have had it for over 15 years now, it started out like yours ....episodal or twice a year. when verapamil stopped working I became chronic, the attacks came every day. This site and the great moderators here saved my butt.
  13. Welcome Doc, I would not wish this condition on anyone, but I do wish there were more neuro's who were as interested as you are in finding new or alternate ways to treat CH. I have been to four different neuro's in the Detroit area and none of them were any help. The more Doctors we can get to attend, the better, try and bring some of your fellow neuro's.
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