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Showing content with the highest reputation on 07/20/2019 in all areas

  1. 2 points
    eileenbunny

    2019 Patient Conference

    Hi all, Here's an updated list of speakers. More to come. Dr. Brian McGeeney Dr. Elizabeth Loder Ms. Christina Treppendahl Ms. Nicole Hemmenway Dr. Emmanuelle Schindler Mr. Kevin Lenaburg Dr. Nate Bennett Dr. Mark Burish Dr. Shivang Joshi Mr. Dennis Pohlenz Mr. William Mingus Mr. Bob Wold Mrs. Eileen Brewer
  2. 2 points
    Jeler

    Definitely a Wine to avoid!

    After reading of the Beer to avoid I found this in our wine cellar! Here's to a pain free evening to all! Jeff
  3. 1 point
    Guys, I think there are some important things that needs to be said here. First, histamine IS a trigger for CH, and in many cases foods high in histamine also contain other triggering agents. This includes all aged, preserved, smoked, cured, pickled and fermented foods and drinks, that are also rich in tyramine. Of course, this does not necessarily mean that a law histamine diet will make a noticeable change for many, but some may benefit. It won't help too many people because (a) histamine is only one common trigger out of many and (b) food is hardly the only source of histamine. Histamine is not only consumed but mostly manufactured in the body, especially during CH attacks. Benadryl is beneficial for some people as a short-term preventative, because it inhibits H1 receptors in the brain. It's also useful to prevent Vitamin D depletion due to allergic reaction, which is crucial for the D3 regimen in some people. So, not a cure and not for everybody, but Benadryl and low histamine diet may help some people.
  4. 1 point
    ROFL.. Now that's a scary bottle of wine... J
  5. 1 point
    Looks like some of the old crew and many of the new crew will be there this year. I'll be there as well. Looking forward to pizza with DD, Bill, Spiny, Batch and of course some of our new active board members as well. (Freud, etc.).. Looking forward to it!! Cheers! J
  6. 1 point
    As you've probably gathered, we're not keen on BS. Don't pull our strings by saying one thing just to get people to check out your posts. I've actually ignored this post until now specifically because it had the word 'cure' in it. What you're describing is an abortive, please describe things correctly in future posts, it really helps and makes you look less like a jerk. Sorry, I know that's strong and a bit below the belt. But we are dealing with serious issues here, and we don't need misleading posts. Some people already struggle with trying the concepts we discuss here, and we need to be honest about what we tell them, and not misleading. For the record, my nose runs when I have a bad cluster, and does nothing if it's a moderate one. I also have an abortive that I found worked 100% of the time. It never failed me. It involved pinching my skin to create a fold, and then pushing a hypodermic needle through the skin, and out the other side so the needle ends up laying flat against the skin. Would normally only take 3 or 4 needs for a complete abort, although you can put a 5th one just for fun, if you want. The way this works is that the brain can only process one source of pain at a time. So by introducing another intense pain elsewhere, it leaves the cluster to go investigate that new pain. I don't recommend this to people who don't know what they're doing and aren't a bit weird like me. Nor would I ever call it a cure. Mox
  7. 1 point
    Batch

    Who’s going to Dallas this year?

    Freud, Providing information outreach on RA is a little out of my comfort zone... That said, as it falls in the autoimmune category, RA should respond to vitamin D3 therapy. The only question is how high to take the vitamin D3 dose/25(OH)D response, how much the cofactors need to be increased and any additional conutrients specific to RA that may be needed. The anti-inflammatory regimen is a good place to start, but the target 25(OH)D may be well North of 120 ng/mL, like 180 ng/mL for RA. I say this as I've been there at 188 ng/mL and it depressed my PTH as expected which is good. The only issue is being careful not to depress PTH to zero as we need the parathyroids to continue functioning and not shutdown. The reason for this is simple, we need PTH to maintain calcium homeostasis that maintains serum calcium within its normal reference range. In this case, I pushed my PTH down to 10 pg/mL when the normal reference range is 14 to 64 pg/mL as you'll see in my lab results. This is no different than taking prednisone at too high a dose for too long. The adrenal glands produce the steroids aldosterone and cortisol that are essential for normal healthy physiology. If we take too much prednisone for too long, the adrenals say WTF. Why should I make aldosterone and cortisol when there's so much prednisone floating around... so they shut down. That poses a big problem when you stop taking prednisone and the reason why it is absolutely essential to taper off steroids gradually or only take steroids in short burst doses or week to 10-day tapers. I'm a pragmatist when it comes to preventing CH with vitamin D3 therapy... The expected result of taking the anti-inflammatory regimen is a CH pain free response. Accordingly, I take as much vitamin D3 as needed to stop my CH. This allows me to maintain a very good quality of life, in excellent health, free of terrible CH pain. My lab results for 25(OH)D, calcium and PTH in the following chart are a good example. On the 1st of March, 2018, I increased my vitamin D3 dose to 40,000 IU/day in anticipation of a heavy Alder tree pollen fall in April. On 20 March I had my labs done and my 25(OH)D was 188 ng/mL. As I was CH pain free I dropped the dose to 25,000 IU/day. As you can see, my serum calcium was still within its normal reference range and PTH was low. In early June, I suffered a major insult from mold spores that triggered an onerous allergic reaction (allergic rhinitis) with a flood of histamine. Histamine can make nearly every CH intervention ineffective... so the CH beast jumped ugly. An electrician had ripped out wall board to replace a 50-year-old fuse box in the house in Pelican, AK were we stay while salmon fishing each summer. Unbeknownst to me, there was a half-inch layer of mold in the wall space from years of roof leaks. Within 24 hours of the electrician's work, the stirred up mold spores had the CH beast jumping ugly at night for the first time in many years. Two days of vitamin D3 at 50,000 IU/day and 25 mg of Benadryl (Diphenhydramine HCL) every four hours had no effect. Fortunately, I had welder's oxygen available and I made a couple of my Redneck oxygen reservoir bags out of clean kitchen trash bags, so the CH hits were more of an annoyance that anything else. However, as we were getting up around 04:30 each morning to get an early start fishing, the lack of sleep had me on edge. Rather than trying to sneak up on a therapeutic response taking loading doses of 50,000 IU/day, I took 100,000 IU/day for two days. The night after the second dose of 100,000 IU/day vitamin D3, I slept CH pain free so I dropped the vitamin D3 dose back to 40,000 IU/day for the rest of my two-week stay in Pelican. I estimate my serum 25(OH)D concentration was around 175 ng/mL in June when the CH beast jumped ugly due to the allergic reaction to the mold spores. That should give you an idea how bad an allergic reaction can be to a CHer. On 1 July 2018, I switched to the Bio-Tech D3-50 50,000 IU water soluble (micellized) form of vitamin D3 taking one of the Bio-Tech D3-50 capsules every 5 days (120 hours) for an average daily dose of 10,000 IU/day. When I had my next set of labs on 12 October 2018, I expected my 25(OH)D serum concentration would have dropped from 188 ng/mL to at least 170 ng/mL. When it came back at 181 ng/mL, I was a bit surprised. As I was blissfully CH pain free, I decided it was time for one of by 25(OH)D burn down tests so stopped taking any supplemental vitamin D3, but I continued taking all the cofactors and conutrients. My 25(OH)D serum concentration was 136 ng/mL at my next set of labs on 14 January 2019, 95 days later, for a monthly 25(OH)D burn rate of 14.2 ng/mL.. As I was still CH pain free, I decided to try taking one Bio-Tech D3-50 water soluble capsules a week for an average daily vitamin D3 intake of 7,142 ng/day. At my next set of labs a little over 3 months later on 26 April 2019, the results came back at 152 ng/mL, so it was very clear the Bio-Tech D3-50 was more potent in terms of elevating/maintaining 25(OH)D serum concentration at the same dose as the oil-based liquid softgel vitamin D3 formulations. I'll cover a lot more about this regimen at the Patient Conference in Dallas. Looking forward to seeing all of you there. V/R, Batch
  8. 1 point
    jon019

    Cluster after 30 Year Hiatus

    Hiya plhbn...sorry the beast found your address....but welcome aboard sleep, stress, food, barometer, activity CHANGES (like vacations) were ALL triggers for me...I stopped trying to figure out which one(s) because it basically came down to ANY changes in routine. Makes for a restricted life...yet another present from the beast. Depressing way to live...which is why forums like this to help figure a path out of the darkness.... triptans in various forms have been reported to cause rebounds and/or lose effectiveness...the goal is to make them a last resort abortive. I had my best luck with Zoming nasal spray (5 mg)...oral tabs were worthless to me....too slow. injectables effective but felt like killing a flea with a hammer and SO DAMN expensive.... OXYGEN OXYGEN OXYGEN...saved my sanity...perhaps my life. best reported success with high flow (>15 LPM) or demand system, the proper non rebreather mask (one such priceless gem available at clusterheadaches.com), and proper technique (there are several.... including breath and hold, hyperventilation)….if no medical available welding O2 is the same stuff in a different labelled tank...quite safe and usually cheaper.... energy drinks at first sign of hit and while racing for the o2 proved quite effective for me....triple strength coffee early in career, then the energy drinks came out. all taste like ass soes yur looking for content first: at least 100 mg caffeine per serving and at least 1000 mg taurine (caffeine booster). Buy by content and price...I get mine at outlet stores for $1 per 16 oz can (good for 2 hits). Red Bull too expensive and lower in the ingredients you need.... I have not heard this from others... but my first thought was perhaps you've developed a tolerance for diphenhydramine or there is some kind of rebound effect going on like with triptans. I'd try weaning off for a while and/or trying melatonin for sleep. many a clusterhead finds it helps with nocturnal hits.... interesting comment re reasoning and memory....I had quite the opposite. used to do a lot of critical writing at work and would almost wish for a cycle when I had an important project...seemed to sharpen and clarify my thinking....out of cycle it got all muddy. similar to depression...in cycle no problem...too busy...out of cycle...DAMN! Best Jon
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