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Showing content with the highest reputation on 04/23/2017 in all areas

  1. Well, for most people pred taper only works while on the taper, and sometimes/often only at the higher doses (not while actually tapering down). Its principal purpose, as Pebbles suggests, is to tide you over until verapamil can kick in. If you can't get to a doctor, hence can't get verap, the effects of the pred might wear off before or during your travels. Sometimes the pred will kick the cycle, or the cycle will be ending anyway, but we have story after story here of only temporary effects from tapers. The best option is to get to your doctor and get proper prescriptions for everything . . . but that sounds like it might not happen, and even then, it's possible that a sensible doctor won't prescribe verap if you're going to be traveling for a while, since verap needs to be monitored in early stages. I would still seriously consider busting if I were you. Not to add to the bleakness, but I suppose you might know that air travel triggers attacks for many people. At least, be sure you have energy shots/drinks with you on the plane; even better, small amounts of some busting substances placed under the tongue will help abort attacks (though of course having them at the airport is a bit risky). Too damn bad that the UK banned rivea corymbosa seeds -- but you could probably also get those from the Netherlands, too. Try to make arrangements for O2 in Las Vegas (and Greece, if possible). Check with your O2 supplier there, because they might be able to make arrangements for you. At the least, bring your prescription with you and maybe you can get it filled by a supplier in LV.
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  2. Immediate suppression for high priority events is problematic because most require a bit of conventional medication and all the yucky side effects. Prednisone oral with taper is at the top of my list 60-100 mg a day for 10-14 days then taper down by 10mg every 3 days til done. Mix in some Verapamil up to 1200 mg a day until 10-14 day pain free and pray (and I mean Pray) for you bowels to move. Energy drinks (caffeine) may help. Antihistamines Benadryl 50-125 mg at night and Claritin 20-40 mg during the day. Amerge (nartriptan) is a long acting version of imitrex but need an Rx but you can use daily for the duration of your trip. May get rebounds after. This situation sucks and I have been there. The advice presupposes no medical problems and access to medical care. Best to you
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  3. Sorry you're in such a bad way and a tough spot, Steveo. From what you've written, I'm assuming you have no access to a doctor. I'm kind of gathering that you're in the UK (although the times in your message aren't consistent with that). If that's where you are, what about getting truffles from the Netherlands? I think they'll fill a mail order, or maybe you would have some way of getting them directly?? (Assuming that you don't have any resources among your acquaintances for busting substances.) If you're not familiar with busting, it's using psychedelic substances, potentially at subpsychedelic levels, to treat CH. You can read about it in the numbered files in the ClusterBuster Files section. You would have to be off the Zomig, but it sounds like that might be going to happen anyway. In the short run, when it sounds like you have practically nothing, you could try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. That can reduce the severity of an attack, or sometimes even abort them. In the future, you might consider asking for injectable sumatriptan instead of the spray. With most injectors, you can split the doses and make the stuff last longer. (If you've been using the Zomig with most attacks, it is probably making your situation worse, with rebounds, etc. Ultimately, of course, you want to be as pharma-free as possible.)
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  4. You'll have to show me how you did that link, rendering silly my many months of whining and complaining -- but don't show my right now, because I'm busy watching the return of Mystery Science Theater 3000 on Netflix.
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  5. I wish there was more new to report (and others may be more on top of this than me). 1. Batch, as I understand it, is now recommending relatively small daily doses of benadryl as part of the D3 regimen, to be increased to full recommended dosage during high pollen seasons. 2. Batch has recommended a new O2 strategy, which you can find by putting "red neck" into the search bar. Someone here said it really worked well for him. (One new frustrating thing is that this new message board doesn't handle internal links, so I/we can only tell people where to look things up, rather than linking to them. Also, can't (or at least I can't figure out how to) attach things or post images. Otherwise I'd be posting Jeebs-as-Borat images to introduce you to the newer folks. But I digress.) 3. dlnmerced put together advice for creating LSA from HBWR that many people seem to find helpful (over in the CB Files section; also posted at FB) 4. The group put together a nice list of "triggers" (not necessarily instantaneous) that had some surprising entries for me. 5. Moxie is apparently doing a lot better, and hasn't been heard from much. 6. Many seem to think that the clinical trials about monoclonal antibodies are quite promising, and, as you probably saw, there's a psilocybin trial going on at Yale. 7. A fellow said that putting his feet in the bathtub with very hot water helped reduce/abort his attacks; some others seem to have found that helpful, too, at least for temporary relief. 8. Another fellow said that drinking a combo of water, fresh lime, and baking soda helped him during attacks. He hasn't reported back and I don't know whether others have also had positive experiences. My daughter enjoys it at least as a "break" during an attack, though she won't say for sure that it makes any difference. 9. A very helpful fellow has suggested that the only major CH med that blocks busting is probably triptans. Not verap, not steroids. I don't know if anyone has tried busting while on steroids. 10. In addition to the stalwarts, many very helpful newer folks have helped fill the unfillable Jeebs void. I would list them, but then I'd leave some out. Most kind of come and go, but when they're here, it's great. 11. I don't know the status of DALT. Maybe you do from FB. I'd say that in reports here, there were as many disappointing trials of it as positive ones. It's my vague understanding that it's hard to get now, but maybe I'm wrong about that. 12. There was something -- DMT, I think -- that someone significant (maybe Flash under a different screen name?) said was what he used, and it worked great. I was interested, but the topic just kind of fizzled. 13. Registrate will be unhappy if I don't mention his app. He's worked really hard to create it, get it right, and try to get it into use. 14. We pooled our funds to buy a tiny drone to track the whereabouts of disappeared but still beloved members. The basic drone itself was relatively inexpensive, but it was pricey to get the kind that turns into a giant corkscrew and flies up the butt of any said member who fails to respond to three or more PMs. Well worth it, I believe.
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