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Showing content with the highest reputation on 07/19/2016 in all areas

  1. 2 points
    Mle

    OXYGEN!!!!

    Hi all, I'm new to this website, but so impressed with all the great info. But what has amazed me is how many ch sufferers don't know about oxygen or don't have it! I'm so damn sorry that the medical community doesn't have a f-in clue when it comes to cluster headaches. Please Get Oxygen if you don't have it by any means possible. If you need help, post that you need help. I've had ch for 15 years and oxygen for the last 7. It still sucks but nothing like not having oxygen. If you'd like to hear my story, just let me know. I'm just going to keep this post brief and to the point. Get oxygen now!
  2. 1 point
    Rogier Koning

    Registrate your pain

    Hi, I'm walking around already for a long time with the idea to make a pain registration App to help us registrate our attacks, treatements, medicine use, use of mushrooms or other therapies. My Problem: My docter told me to make a diary of all my attacks so he could see how I was doing. through the years I've seen a lot of Doctors and a lot of them asked the same from me. Problem always is that it takes a lot of time for the doctor to see my attacks and to get a clear view of when I have more and when less. So I started to make a excel sheet with all dates of the year. Like that the doctor had an easier view of my attacks. I've also added my intake of medicine, MM use, Vit D, Therapies I did. So the doctor already got a more clear view of my attacks and related things. Problem for me was that I had problems filling the excel. The Diary I had next to my O2, so I could fill it in directly. The excel I had on the computer, so I had to fill it in later. Because of the pain, meaby an other attack or what so ever I got a lot of holes in my excel. So I Started to look for apps to keep track of everything. Problem with these is that they gave me a whole list to fill- in with every attack I had. How much pain, were, did you take medicine, did you see a therapist, did you.... all kins of things that weren't connected to the thing I wanted to registrate. My pain at the moment I have it. My medicine use, at the moment I took something. My MM use, when I took those. My Idea: My Idea is very simple. Lets make an app for us. An app that only has a few butons. One for pain, one for medicine, one for therapy and one for MM use By just tapping the button a registration is made of that item on a timeline. Use personal or share with Doctor or Clusterbusters.com We could add a option to the app that we can send this info to our doctor or to clusterbusters.com to help understanding the things we do and help research. Or...you can keep it private if you would like. I've add two screenshots of how the app could look like. I'm self employed and the nice thing is that I just got myself a emplye. One that is starting to explore the app-world for me. I'm also willing to let him work on this app in the office hours but I need help. He is starting building an app for me but still needs to learn. What would I like: Some feedback of clusterbusters.com and members to know if they also think this could help us killing the beast Feedback of information that is important to collect People that have the time and energy to help building the app, designing it. Extra: I know we are all different, but I also would like to add people that have other kinds of headaches. Meaby our shared data will bring us more result than only looking at ours.
  3. 1 point
    CHfather

    Hi all, so happy to have found you!

    Yes, there was a big capsaicin craze a while back. I can only say that I have never actually heard of anyone who found that the relief was close to being worth the discomfort. Even though CH treatments haven't progressed nearly as fast as they should have, I think a lot of the strategies--virtually all developed by people with CH, not by the medical profession--have made it less necessary to resort to crazy s--t to deal with CH. Those strategies would include effective high-flow oxygen, energy shots/drinks, and the D3 regimen, as well as melatonin for some, and other awarenesses, such as staying away from MSG, which is a big trigger for many people, and of course busting. (Speaking of MSG, lately there have been a couple of people here who have reported substantial benefit from a low-histamine diet.) Your O2 situation is unfathomable to me. Someone better informed than me might be able to figure it out. You do have tanks of oxygen, right, and not a machine that makes oxygen from room air? Why would they give you a mask with a hose that only let 4 lpm through? You want to get a decent mask quick. If you don't order the "ClusterO2 kit" mask right away, just go to amazon and order one non-rebreather mask. If you have Prime (or if you pay a little extra) you'll get it in a couple of days. Or for that matter, demand that Apria give you a non-rebreather mask with proper tubing, for God's sake. That's their freaking job, which you are paying them for. I'm not sure how much I would rely on your delivery guy for help and advice -- Apria ought to have some kind of respiratory specialist on staff who knows something, or is willing to learn something. I'm not sure I really like your neurologist, either, if you have described any of this mess to him and he hasn't corrected you, or stepped in to correct the situation. Speaking of your neurologist, are you taking any kind of preventive -- typically, that would be verapamil. Of course, I don't know how the classic CH meds interact with your MS or other conditions you might have, but typically the first-line pharma response to CH is (or should be) oxygen as an abortive, verap as a preventive, and injected sumatriptan (Imitrex) as a backup abortive. A steroid taper helps some people. It's generally believed that one needs to do the full D3 regimen, as listed in that file I linked you to. Don't do only the D3. There's something about absorption and secretion that's affected by the other elements. You understand that whatever I say here is just my observations, although they are observations based on having read well over 10,000 posts here over the past however many years it is, and participating some at other boards. With anti-depressants, there always seem to me to be a roughly equal mix of "helped me," "no effect," and "made it worse." That's actually true for lots of things, all kinds of meds. People often say that CH is so tricky that way, that something that works for one person won't work for another, but I have to say that I also attribute it to the perfectly understanding hypervigilance of people with CH and the unpredictability of the damn attacks themselves, so there's a lot of attribution of effects that is real for the person saying it but not necessarily more than anecdotal information. Oxygen, on the other hand, works in more than 90% of cases when it's done properly, and I would give the same success rate for Imitrex, and darn close to it (at least in terms of reducing attack severity and frequency) for D3 as a preventive and energy beverages as abortives. I'd say busting might be 75% effective (or at least it can take some time to find the right busting substance), and verapamil is pretty darn effective although high doses can have substantial side effects. Unless I'm forgetting something, in my view the rest is pretty much a crap shoot -- indeed some things work for some people and some for others. And with these you're getting into pretty substantial side effects, too: lithium, gabapentin, topamax . . . Two last thoughts: (1) A few people here have said that putting their feet into a bathtub with very hot water in it helps them abort their attacks; and (2) As much as I hope you stick around here, you should know of two other places where you can get good information and advice. One is www.clusterheadaches.com, where meds and non-busting alternative treatments get discussed pretty well, and the other is the Facebook group, Cluster Headaches. That's a closed group, so you have to request to join, but we can probably help you if that process is slow. I'm not very fond of the Cluster Headaches group, because in my view there's a lot of opinion being presented there as sound advice, but the people are generally very very good-hearted and there's a lot of really nice emotional support. Both here and at clusterheadaches.com, the search bar at the top of the page can lead you to some interesting stuff. (As you've noticed, this site is pretty empty these days. Seems like most folks have migrated to Facebook.)
  4. 1 point
    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.......
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