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Showing content with the highest reputation on 06/29/2018 in all areas

  1. I have found that it was much cheaper for me to pay for my oxygen out of pocket then using insurance. call the oxygen supplyer and convince them it will be better for both you and them if they give you a few tanks. I have 3 M tanks and about 12 E tanks that I can rotate out to get filled and I manage it so I never run low enough to run out over a weekend. I am lucky with my place as they will deliver the next day as long as I call it in by 5pm the day before. I did have issues with them when I first started using them but after calling and talking with just about everyone I could and meeting and dealing with the driver things go much better now. I ordered the cluster mask from the link above and that is 100 x's better for me and I went on amazon and ordered my own regulators for both the M and E tanks. I keep extra everything just in case i break a mask or crack a hose. I keep tanks in my house, garage, car and work. It is kind of a pain in the neck lugging this stuff all over but it is better then a pain the the side of your head.. Good luck and let us know how you do.
    2 points
  2. Most O2 suppliers don't know anything about CH, so they are likely to give you the wrong stuff. If you get a prescription and decide to go forward, call the supplier before they deliver anything. Be sure that they understand that you need at least one large tank (an M tank or an H tank), at least one smaller tank (an E tank) for portability, a regulator that goes up to at least 15 lpm (the prescription will state a flow rate, probably 15, but if you can get the doc to write it for 25, that would be great), and a NON-REBREATHER mask. Let us know how that goes. The mask will work but you could also order a mask specially designed for people with CH, which many people find to be a very big improvement: http://www.clusterheadaches.com/ccp8/ There have been two people here who underwent a lot of hormone replacement therapy because they were transitioning. As I'm remembering, one felt certain that that therapy made the CH worse, and one found the opposite to be true. That's what I think I remember. You could try putting "hormone replacement" into the search bar ) top right of the page) and see what comes up.
    1 point
  3. Hi DE....welcome aboard! You might want to nose around a bit and see what interests you in the threads...and feel free to ask questions or share your comments. We wish you didn't have to be here...but it's a good place to be....and we all do what we can to help each other out. As I'm sure you realize...just knowing there's folks out there that UNDERSTAND....is a BIG deal! Have heard of Gabapentin before but not a whole lotta success....but that's me. The reduction you're getting is actually pretty good....but I don't know at what cost (side effects that is, other similar meds can be kinda nasty). Many have found success with a Vitamin D3+ regimen that is cheap and easily obtained in most places....and you REALLY need to explore oxygen therapy as it is an absolute life changer. See this thread in another forum ....no membership required to read: you might have to type in the address...cut and paste doesn't seem to work for me. http://www.clusterheadaches.com/O2/index.html Re verapamil. Typical sweet spot for clusterheads is around 480 mg/dy....divided doses of normal release (it also comes in extended release...which works for some but doesn't seem to be as many). Some go over 1000 mg/y (myself in HIGH cycle). 240 is a good starting point tho typically there would be a steroid IV and/or taper (1-2 weeks) to break a cycle until the verapamil kicks in. Personally I would not use verap AND Gabby at the same time....due to cost, side effects AND not knowing which one is really working (if they even do). With oxygen, D3, and perhaps energy drinks (over 100 mg caffeine and > 1000 mg taurine) drunk cold and fast at the first sign of a hit and script meds might not even be necessary. Others will be along shortly....I always forget something important or my technology IQ fails..... Best Jon
    1 point
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