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Posts posted by Marc

  1. Glad to hear that it worked for you jonck. Most of us are familiar with the miserable knot from CH. I truly hope that dry needling and massage works for you when/if your CH starts up again. Some have tried this and found that it did relieve some of the neck pain during cycle.


    Most of us have already tried an amazing variety of different meds and treatments from Excedrin to brain surgery. Everyone is looking for relief and pushing for a cure. We are open minded when it comes to CH treatments that have worked for others. It helps us learn new options that might work. It also allows us to share that knowledge and add our own input on its effectiveness.


    Sharing is a two way street. When we differ, we keep it polite.





    Nicely said.



  2. I cannot speak for others, but no recreational drug use or head injuries for me - but I was 14+ years chronic. I was a late starter, but now I'm PF with only a familiar "warning" now and then. (Actually my wife sees it before I realize it, because of the way I move my head/neck)



  3. Rizatriptan (Maxalt) has been prescribed to abort CH's for at least 15 years that I know of - perhaps longer.

    It's another Triptan similar to Imitrex, Zomig, Relpax, Frova, Amerge, etc. Some of the various forms of this class of drug work quite well for some CH'ers but not others.

    My personal experience with it was good, covering a 14 year span. Only if I took it at the very, very first hint of an attack along with caffeine - then hit the O2 tank. Once an attack had progressed - it was too late. 


  4. Anger goes with the territory sometimes, every now and then. And sometimes a dry, witty response can be misinterpeted. It's complicated! We share and come here for help. I don't post a lot these days, but I come here because I want to know how my friends are doing and I wonder where some went. I was happy to "hear" from AO and have thought of him many times.

    I come here to learn and I am so impressed with this group that never stops amazing me with their knowledge and passion.

    This just makes me sad.         Leslie

    If you are saying that I misinterpreted a dry witty response, I will have to respectfully disagree with your opinion.

    I do know a little about O2 for CH's and I've found that most people don't - so sometimes you have to explain it.


  5. If a user like me simply adjusts the regulator so that the bag never overflows, the O2consumption is identical to a demand valve. 

    Yea thanks captain obvious, gee why didnt I think of that?

    I have two collapsed hip joints and can barely walk... ill just stand by my tank for an hour at a time. thanks for your help!

    Not sure why my post angered you, but people like you are a good example of why I don't bother posting here.


  6. If a user like me simply adjusts the regulator so that the bag never overflows, the O2  consumption is identical to a demand valve.

    I agree with your statement 100%. However........the waste comes when one stops to cough....down some water to combat the dry throat or any other such pause and the bag fills to capacity and then vents. For myself I don't cut it back under those circumstances because I will be back to it shortly. Maybe I'm the odd one but during use I tend to worry about getting enough flow and not as much about overflow. So that's why I say slightly....it's not much but it's enough to notice when your anal like I am.  ;D

    I do try to stress that a demand valve is the high end option. A welding reg or a 40lpm med unit will abort just as well and at a lower equipment cost. I have tanks set up in my home office, my bedroom and my truck....only one is a demand valve. I sure won't run past the other two to get to it...that should tell ya something.

    I stand corrected, Sir.

    I can suck in almost 3 liters in a breath, so I use a larger bag that floats around 1/2 full while in use, so it doesn't overflow when I need a swig of ice water. If I'm backing away for longer, I just close the main valve - leaving the regulator where it always sits.


  7. O2 regulators are no problem..... http://www.wtfarley.com/ sells about anything you can think of. CGA 540 reg with a DISS is $55.00. There are of course other places to look such as Ebay, but if you want one right now they are a good option.

    There are also adapters.....If you were to buy an E tank regulator, you can purchase an adapter to allow usage on a 540 outlet....or the other way around. Go here: http://www.cumulus-soaring.com/mh-transfillers.htm to check that option out.

    There are other ways to get high flow o2 other than demand valves....they just happen to be the best and one of the most costly. I love mine, but I get about the same results from a 40lpm reg and a clustermask.....it just uses slight more O2.

    Not to challenge my respected colleague and friend: I must disagree with the standard position that "it just uses slightly more O2." 

    That has been repeated so often that everyone accepts it.

    I have been making this simple statement for over 9 years and have never had anyone show me where I was wrong:

    If a user like me simply adjusts the regulator so that the bag never overflows, the O2  consumption is identical to a demand valve.

    Yes, a demand valve eliminates the need to think about it. But, after more than 14 years of being chronic, when sucking O2 - there isn't much else on your mind - you DO focus on breathing O2.

    High flow O2 at 35-45 LPM saved my life, using a welding O2 and a standard CGA-540 welding regulator........


  8. Herbal combinations are definitely known to work synergistically, so I wouldn't be surprised if one single herb in there is NOT the "cure".

    I'm also not exactly holding my breath for an explanation via current medical science of exactly how or why mamajuana works, as last time I checked, the state of the science isn't yet quite up to understanding or explaining everything a single herb will do, let alone the needle in haystack scenario DrTy2 mentions regarding herbal combinations.

    Still, that would be an interesting experiment to split out each herb - several major universities should be launching extensive mamajuana studies right now.  :D Still not holding breath.  ;D

    Important points to remember.....


  9. Sorry, I don't have a clue about that thumbs no workee phenomenon preceding an attack, but if you have a decent neurologist, it sounds to me like one the first things to bring up at the next visit.

    You are correct, Sir. Loss of fine motor control should always be taken seriously when it's not a typical symptom.

    Vickle, be sure to speak with your Neurologist about losing control of your thumbs!

  10. If one goes to the emergency room for CH, is there a typical drug that is given for the pain? Can you request a certain drug?  We've had bad experiences with steroids and certain other drugs. Also, has anyone experienced a "heaviness" feeling or tension in their chest during CH?

    Heading to the ER is generally the last thing you want to do for a CH. But, if you feel that you will end up there:

    - Get a copy of your diagnosis and treatment plan from your MD.

    - Take it to the ER BEFORE you need to go, and have them create a file for you.

    - Have them note the presentation symptoms that you will exhibit upon arrival in order to cut their diagnosis time!

    - THIS is a great time to be suer that they understand that your CH's are not simply drug seeking behavior.

    I repeat, ER visits for CH's are almost counter productive compared to what you can for yourself in the same amount of time.


  11. For a low budget, reliable solution, the welding O2 regulator is hard to beat. Yes, it fits on all welding tanks and all large medical O2 tanks with a standard CGA-540 fitting. You can also get an adapter to use your welding regulator on a little medical "E" tank with the CGA-870 "yolk" fitting.

    A welding regulator can easily outrun the maximum breathing rate of several people at the same time. I found that I need 45-60 lpm for the first 30-90 seconds in order to get the shortest possible abort time. Once I understood how to breath that fast and deep, I cut my abort times in half and never had a real headbanger again. THAT is worth gold to me.

    Some folks claim that a demand valve uses less oxygen than a conventional regulator. This is not true. If you adjust the regulator output so that you have the O2 you need when you breath in, and the bag doesn't over inflate when you exhale, there is no waste. You can't save anything if it isn't being wasted.

    I'm not against demand valves. They are indeed convenient - just expensive for some of us.

    Just my 2 cents in our world where pennies are worthless.


  12. Just a regulator with a DISS valve.

    Edit: To clarify, regulators reduce the 2500-3000psi down to a usable... say 200psi. When you turn the knob it restricts that 200 psi to the flow you want. The DISS connection should not be governed by the knob... it should deliver the full 200psi directly.

    I would add that standardized DSS port output is 50 psi.


  13. That's why I tried to write that piece clearly - it was confusing to me the first time also. I did those years ago - probably time to update.......

    Edit to add: FWIW, standard medical O2 tubing with the thick ends on it, will stretch and stay tight in the regular threaded fitting - without a barb. I just soaked mine in hot water to soften it up, and "threaded" it onto the fitting. It takes some work, but it will go on there - and stays put unless you really yank on it.


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