Leaderboard

Medicare actually reversed this ruling in just the past couple of weeks and will be covering O2 for clusters now! Remains to be seen as to when the change will actually go into effect.....since I've already paid for my tank and refills are so cheap I'll probably continue to huff my weld ox but this is huge for the clusterhead community! DD

....ooops....sorry. Benadryl just a brand name...is totally different compound outside US/Can.... .....what i refer to is diphenhydramine.....which in Britain (EU?)is available OTC (i think)as a "sleeping aid".....perhaps Nytol or Unisom...or something called Dimedrol (help! UK folks). Old time med that i have found personal success with..... and many others report same. batch describes partly as a blood brain barrier transit issue. could always deal with the drowsiness for the definitively beneficial effect.... ....away from home PF surely indicative....but involves too much to be specifically helpful (diet, setting, lodgings, activities, etc all different). gonna have to drill down further... ....been chasing diet alterations my entire CH "career".....never amounted to much but i was able to narrow down to several triggers: aspartame (one of the artificial sweeteners), msg (ubiquitous under various names in most prepared foods), allergens specific to me (tomato), and, of course, alcohol. drastic changes do not narrow it down, would suggest taking out specific groups at a time. read your labels..tis unfortunately shocking how many psychoactive ingredients are in the prepared foods we eat...and some of the supposedly "natural"...

Thanks @jon019 ! He was actually away from home in motorsports event and was unexpectedly pain-free which might suggest towards some environmental factor. I don't know about his diet other than that there are no clear triggers he would be aware of. Good thing to consider ! I will pass along your suggestions, thank you again Edit: I think our european Benadryl is somehow different from yours (and thus useless). Benadryl 8mg sold in here is acrivastine.

....i can still get teary recalling the first time (1985) OXYGEN caused the pain to drain.like.water.... and i just KNEW i had my life back. may you continue to say "it worked"....

Thank you for your help earlier. I followed your lead with the slight lift to exhale. That was my first time using oxygen. Not perfectly done I’m sure, but it worked for me.

.....you could breathe straight from the tube. i find a little awkward but many folks prefer...make sure you are not also inhaling thru nose at same time... ....tape over any and all vent holes...you GOTTA have pure oxygen.... ....stick the mask in a bag big enough to hold it and allow some "fillage"....squeeze closed with just a corner open to mash yur face into...breathe then exhale outside the bag... ...experiment with various breathing techniques...many find hyperventilation with intense inhale and crunch (sit up like) exhale to be most effective (start even before the O2) .....slowww breathing works for some (me), as does breathe and hold....try various styles to see which works best for YOU. sometimes a combo works best. different cycles may require different styles... ....downing an energy drink or really strong caffeine drink at first sign of a hit made O2 faster and more effective for me... best jonathan

Hey Spiny, You've done an excellent job of explaining the anti-inflammatory regimen to Nugget. I'll add that we can estimate an optimum dose of vitamin D3 and time has shown that 10,000 IU/day vitamin D3 is a good starting point. That said there are a few factors that influence the optimum dose that results in a CH pain free response. They include total body mass and BMI. Immune system activity particularly in response to allergens, infections, trauma, and surgery are also a major factors. Accordingly, the process I now suggest includes the accelerated vitamin D3 loading schedule where you titrate (take progressively higher doses of vitamin D3) to elevate serum 25(OH)D3 more rapidly to achieve a CH pain free response for at least 48 hours, then taper the loading dose to arrive at a maintenance dose that keeps you CH pain free. The following notional graphic illustrates the 25(OH)D3 serum concentration threshold above which you're CH pain free and below which, the CH beast jumps ugly. The important thing to understand is the CH threshold and actual 25(OH)D3 serum concentrations go up and down with changes in immune system activity. That means the maintenance dose that worked yesterday may be insufficient to keep your actual 25(OH)D3 serum concentration above the CH threshold. The green line is the actual 25(OH)D3 serum concentration and the red line represents the CH threshold 25(OH)D3 serum concentration. As you can see, both vary over time and the single largest factor is the level of immune system activity. Where you run into problems with the CH beast jumping ugly is when your present 25(OH)D3 serum concentration is below the CH threshold due to an immune system response. All this means is the CHer needs to be prepared to titrate (incrementally increase) the vitamin D3 intake with loading doses to achieve a CH pain free response, then taper the vitamin D3 dose to maintain an actual 25(OH)D3 serum concentration above the CH threshold as the new maintenance dose. Intuitively, maintaining a 25(OH)D3 well above the CH threshold results if fewer occurrences of CH burn through. This is a very safe practice as long as you see your PCP/GP for frequent (every 30 days) labs for 25(OH)D3, calcium and PTH to make sure serum calcium is within its normal reference range and PTH is not too low until you reach a stable vitamin D3 dose that keeps you CH pain free. The target/optimum PTH serum concentration is between 11 and 22 pg/mL as illustrated in the 4-year chart of my labs for serum 25(OH)D3, calcium and PTH. My PCP had no problem with my 25(OH)D3 serum concentration up at 277 ng/mL (692.5 nmol/L) as my serum calcium remained within its normal reference range and my PTH wasn't too low. The reason my 25(OH)D3 was this high was due to a heavier than normal pollen fall from Alder and Big Leaf Maple trees that triggered a higher level of immune system activity in response to the pollen allergens. Take care and please keep us posted. V/R, Batch