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ClusterBusters

Don O2

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  1. Don O2

    Cluster rules

    My number one rule is, when the pain starts, take action now.
  2. Don O2

    new to verapimil

    Too much Imitrex can cause rebounds and failures. Too much oxygen does not. Used properly for CH, I stop 97% of my attacks with oxygen alone, with above 15lpm. We all do whatever it takes to stop the pain. I've had CH for 30 yrs,. Oxygen has helped 29 of those. When I first used o2 it stopped 50-60% of my attacks. More is better with o2. I told my Neurologist, if I could only have one CH treatment, it would be oxygen. Minimum 15lpm with a Cluster Headache mask. With a bag.. I now use a demand valve. Like a fighter pilot mask, lets o2 out only when I inhale. Not cheap. I can got almost equal results with a 40lpm regulator and a 3 litre cluster mask. You will find what helps you best. Doctors are behind the curve, so we must know more than they do. Take charge of our condition and treatments.
  3. Don O2

    New Headache need advice

    The best advice I was ever given about CH was to know more than my Doctor. We are such a rare patient, Most doctors don't have a clue. They may have some knowledge, but not enough. Learn all you can about CH and treatments that work. In your post I see no real treatments to prevent or abort CH attacks. There is hope with CH. Things like o2 used properly. Oxygen stops over 90% of my attacks. There are many things that help.
  4. I only wish, I could convince every ClusterHead. These meetings are the most uplifting experience me and my wife have ever experienced. The 2017 Conference was the best yet. To be with my sisters and brothers is priceless. Yet there is more, the Doctors, who spoke, get it.. Everyone involved in putting this together deserves special thanks. The best thing for me is to be at every one of these I can.
  5. Your husband is being tortured. I feel for you both. Does he have a non-rebreather mask,these have a bag, regulater that goes to at least 15 LPM? No outside air from holes in the mask. The fastest way to abort with oxygen is by hyperventilating the o2 as soon as the pain starts. Waiting to see if it's a bad one, can cause a failure, with o2 and energy drinks. Another way to use o2 is take a full breath and hold it, then exhale COMPLETELY. For me the pain will stop on the exhale.
  6. Don O2

    New and worried

    It is very common for CH cycles and frequency to change. I have changed from chronic to episodic more than once, cycle length has changed many times. I'm chronic now and find it almost easier! My attacks seem easier to abort when chronic. Also, I can have a cocktail with no effect. When episodic that is not possible. Oxygen is my #1 abortive, I stop up to 97% of my hits with O2 only. Used it this morning. They posts above are giving you good information. Anything we use to stop an attack must be used as quick as possible. Waiting to see if it's a bad one can result in failure to abort . The fight is our own so we have to take charge of our own treatment.
  7. Don O2

    Demand Valve.

    No Rx was required.! I bought a demand from lifegas also and they required the Rx. Don
  8. What a wonderful Conference!!!!! I met several folks that were interested in getting a Demand Valve. I did not remember the correct web address. It is below. www.lifemedicalsupplier.com The prices average $300, be sure to order a mask or mouthpiece. Clusterkit, facemasks and mouthpiece's will work on these. The model I have is the: L063-050 It came with the valve (can be used as a mouthpiece), and a hose. Required: a DISS fitting on your reg. This can be done on welding regulators also. Can't wait to see the family, Don
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