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Showing content with the highest reputation on 01/20/2021 in all areas
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I can speak from experience that I've aborted a headache before by jumping into a very cold sea. You know that shock to the body you get when you enter cold water, the feeling of your breath being taken away? It seems like that can be enough to knock out any headaches for me, CH, migraine or otherwise. Maybe there's a vasoconstrictor effect triggered by that, I'm not sure. I know I've read articles in the past about chronic migraine sufferers who've managed to significantly cut down their headache frequency by doing cold water swimming every morning. So, it doesn't necessarily surprise me that being in extreme cold might help to abort a CH attack. However, in terms of medications to simulate that effect, it would most likely be anything that causes vasconstriction. So, triptans, oxygen therapy etc. Does your husband have access to oxygen? And, if so, does he definitely have access to the right oxygen equipment to get a satisfactory therapeutic effect? That means O2 tanks with a least 15 l/m flow rate, non-rebreather mask etc. There's also different techniques that can be used to improve efficacy of oxygen for those who may have found just standard breathing doesn't work well. Energy drinks high in caffeine can also trigger vasoconstriction and do seem to help many abort attacks. They can also be taken at the same time as starting oxygen to enhance the oxygen effect in a lot of people, speeding up abort times. Some people say they work even better if they are really cold from the fridge (which might be relevant for your husband). Generally it means rapidly chugging down a can, or using one the concentrated energy shots.2 points
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The company is "...doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.” They have acquired a patent to make BOL without having to use LSD to make it. That's a big deal. https://www.forbes.com/sites/amandasiebert/2021/01/18/betterlife-pharma-is-developing-second-generation-psychedelics-drugs-that-leave-out-the-trip/?sh=1405582f648f&fbclid=IwAR1qjwmeOl-LLa9KQyetBMeRSQpBtwKJmmpz0xxX27kFM6-1cRHmE-T5e0o1 point
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Is he breaking open the injectors to get multiple shots from each? That still won't cover 5-6 attacks per day, but properly set up oxygen will deal with many/most/all of those, so the Trex is just needed for breakthrough attacks. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or vials and syringes, as Pebbles' mentioned. Verapamil is a good example of what I was saying . . . One form (immediate release) works better than another (extended release), but most doctors don't know that. And the typical dosage required to prevent attacks is often far higher than most doctors prescribe. So it is concluded in many cases, "Verapamil doesn't work for me," when in fact it never got a test with a real possibility of working. Same for prednisone. We see person after person here who gets doses too low (such as the standard "dose pack"), and/or time periods too short, in contrast to what is known to be needed for prednisone to work for CH. I'm with Pebbles' and your husband that these aren't great options in any event; I was just saying that many, or even most, people with CH haver not had proper prescribing, so they don't know whether they work for them or not. Properly prescribed, they usually do.1 point
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In principle I agree with @CHfather. If one fails to respond to injectable imitrex then the diagnosis should be scrutinized. I have a similar belief to properly administered oxygen. If it doesn't work I would be skeptical of a CH diagnosis. There is general agreement oral forms of triptans are useless for aborting CH. Subcutaneous triptans should be highly effective in a person with classic cluster headaches. Many find reduced doses of 2-3 mg highly effective in aborting an attack. Using multi dose vials or splitting autoinjector doses helps reduce side effects and increases available doses. As @glo points out when you are getting hammered several times a day its impractical and virtually impossible to keep up with the shots. Between limitations on prescription amounts, side effects and rebound headaches very few could maintain control over 3 plus daily attacks. I live just south of Michigan's Upper Peninsula in a similar climate and can't say cold exposure helps much. Tried it naked in the snow and all. I'm not sure most of us can get cold enough to trigger vasoconstriction in the brain without developing hypothermia. Also when you warm up you are going to vasodilate like crazy which might be counterproductive. Its good you are seeing a headache specialist. They are a peculiar group. It must be exhausting to deal with headache people all day especially if you deal with non responders. With a few exceptions I suspicion many get jaded and burnt out pretty fast which is why you have to be your own resource and advocate. The very most important thing is to have a proper accurate diagnosis because that allows you to guide your own therapy. Personally I believe besides the classic criteria for CH you should also respond to sq triptan and\or oxygen to support the diagnosis. All the rest of the treatments are hit or miss and vary widely between and within individuals. @glo mentioned many. There's an endless list of things to try, scattered case reports about IV therapies, hormone intervention, surgery and stimulators but in truth none are consistently reliable. Things like steroids (used properly), verapamil and other pharma have significant down sides which makes prolonged use impractical. Also it seems the beast is a moving target and what may have worked for a cycle is a fail during the next emergence. If you are confident in the diagnosis and maxed out conventional therapy, have followed the latest iteration of D3 and still struggling then it might be time to consider busting. This is a very individual decision and choice which each person must be individually responsible.1 point
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Whoa - wouldn't that be incredible if someone was actually able to get BOL-148 fully approved, manufactured and available for prescription? For that matter over the counter availability would be fine with me . To see this non-hallucinogenic version of LSD, reputedly much more effective for CH, finally become available could be such a game changer, and such a longer than lonnnnnng time coming after it it's promise has been known for so many years, with the maddening (and then some) history of false starts.1 point
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Hi A-Z, I remember reading way back that benzo withdrawals can cause severe suicidal depression, not sure if the source was scientifically legit or what though. Plus it sounds like you're pretty much over the benzo withdrawal side effects by now. Modern day cannabis, bred to be super strong, gives me anxiety and some paranoia, so I don't imbibe. Not sure if it's just a change in my biochemistry or what, but the old, much milder, 70's style cheap "commercial" weed in California never triggered any of that for me. Quite the opposite, in fact, it was relaxing and mellowing. The following are not suggestions so much as stuff I find interesting on the subjects in this thread: Depression: I was going through a questioning existence phase there for a bit. Mighta just been mid-life crisis that was about to end anyway, but around that time I started (successfully) busting with vitamin M for CH, and it not only removed my CH related PTSD-like symptoms, but I also found myself in a better, non existential crisis sort of head space. Of course it's all over the news as of late about psilocybin treatment for depression, and for someone in Oregon, or who could go there, I find the whole thing about Oregon will become the first state to formally legalize the medical use of psilocybin to treat mental health conditions in licensed facilities using registered therapists interesting and encouraging. I'm already thinking about trying to get a relative to head there for such treatment when available and possible. I would stop short of encouraging people to try to wing it with DIY psilocybin for depression therapy though. Panic attacks: I have to wonder if the cannabis could really be a culprit 15 days after the fact? Meantime I found this bit about a new testosterone spray to kill panic attacks seriously intriguing. It sure sounds to me (someone who doesn't even resemble a doctor) like you've experienced some manner of lasting biochemical imbalance induced by a substance intended to be therapeutic for CH, that you can and will regain the balance you were enjoying previously, at which point you'll be so over these side effects, and will be golden.1 point
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Welcome Dave, This site is full of info that may help you out with figuring this out. A little more info on your headaches, Are they the same time of day every day? Do they run in a cycle, Spring, Fall, of only on a certain month and only x number of weeks? Does alcohol bring them on? things like that will help figure out if they are for sure clusters or not. Like Jon said above Oxygen is something you will want to get as soon as you can if you do have clusters. You will want it in a tank not a concentrator machine and you will want a high flow regulator and a cluster mask to get the full benefits from it. You get the tanks and take whatever regulators and masks the company gives you and toss them in the closet, we will help you get the correct things for your setup after that. The redbull and 5hr drinks are great for me as well. I like the 5hr drinks because of the size, I can also drink them any time of day with not effect on my sleeping. I think the magic in them is the Taurine/Caffeine combo. The vitamin D3 your taking could also make a world of difference for you and the member XXX is sure to be able to answer any questions you may have on that. How do you make the headaches go away forever? Well if you can answer that I don't think you would ever buy another drink or dinner again.1 point