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CHfather

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Posts posted by CHfather

  1. You might already have seen this as you've been reading.  It gives you a sense of the treatment landscape, including basics of busting at the very end:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly.  Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time.  The D3 regimen is a good preventive, but probably won't help you right away.  Busting works for a lot of people.  Strategies like energy shots/drinks can help you now.

    11 hours ago, Bejeeber said:

    Many blame things like imitrex use for worsening their cycles. I don't particularly doubt them, but my CH went ahead and started continually worsening before imitrex was even available in the US.

    Same was true for my daughter, who used no pharma of any kind for the first ten years she had CH.  

    • Like 1
  2. 10 hours ago, glo said:

    I convinced my husband to take the full regime for 2 weeks and when he didn't respond, he gave it all up.  I'm realizing now that I should have done the loading dose (btw...I can't get him to the doc to take labs so we are guessing which I know is not ideal).  

    If I try to get him to take them again, what is the bare minimum of the co-factors along with the higher dose of D3 or is the entire regime necessary.

    Even with the loading, two weeks might very well not be long enough for him to get a significant response. Could be, but not very likely.

  3. marcianin, what did the doctor prescribe to you?

    It might be valuable for you to read this post, which will give you an idea of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    I would suggest starting a new topic in the "Theory and Implementation" section, with the heading "Newly Diagnosed" or something like that.  That's how you'll get the most advice and have it in one place.

    • Like 1
  4. 49 minutes ago, Leo Sticinski said:

    With regards to using the oxygen you may want to bite the bullet and buy an oxygen machine. I would check online for one. It's been worth it to me.

    Leo, do you mean a concentrator (makes O2 out of room air)?  For many people, those are not really fully effective, for two main reasons: the O2 they make is less than 100 pure (there's still some room air in it); and the regulator doesn't go high enough to support fully effective breathing.  I'm glad it works for you, but as I say, they're not really right for everyone. (And I suppose we should consider what "works for you" means--with a fully optimized system, many/most people can abort an attack in ten minutes or even considerably less. If you're getting that result, it's great.  If not, a cylinder-based system might show better results.)

    • Like 1
  5. 9 hours ago, xxx said:

    The accepted naming convention for epidemics and pandemics, that’s been around for over 130 years, names these epidemics and pandemics for their country of origin.  If you’re so extremely offended, are you rewriting history to do away with and renaming the "Russian Flu" Epidemic of 1889,  the 1918-19 “Spanish Flu” Pandemic, the 1957-58 "Asian Flu" Pandemic, the 1968 “Hong Kong Flu” Pandemic, the 1964 “German Measles” Epidemic and the 2015-2016 “Zika Virus” Epidemic.  The “Zika Virus” Epidemic was named by the WHO, as it originated in the Zika forest of Uganda.  Are you doing this because these epidemic and pandemic names are racist and may offend someone? 

    This is not in fact today's "accepted naming convention."  It's what people once did (often inaccurately--the "Spanish Flu," for example, didn't originate in Spain, and "German measles" didn't originate in Germany) or still choose to do.  Today's "accepted naming convention," pursuant to WHO guidelines issued in 2015, is to avoid using place names. This convention is widely accepted. For example, when the US under Trump's leadership tried to refer to the current coronavirus with a Chinese reference in an official G7 communication, the other G7 countries refused to go along.  At least some of your history here is wrong or misleading: "German measles" (rubella) was first identified in the early 1800s and it was so named because it was identified by a German scientist, not because it originated in Germany.  The Zika virus was named in 1948 (not by the WHO) indeed because it was identified in the Zika region, but not necessarily because that was where it originated.  No one really knows where the "Russian flu" originated, only that the first identified outbreak was in a city in the Russian empire.  Whatever the accuracy or inaccuracy of your historical assertions here, it is not a medical or epidemiological protocol today to use place names. When you call it the "Wuhan virus," you are not following contemporary naming protocol, as much as you might be following a historical practice.  Things change. (And it is not "rewriting history" to use different terms for the epidemics you refer to, such as the "1918-1920 influenza pandemic.") 

    • Like 1
  6. There are sites, such as www.goodrx.com, that provide coupons for drugs.  I feel like some people found that the prices for Imitrex using those coupons were actually lower than what they were paying with insurance.  

  7. Just typing Orlando into the search bar at the top right side of any page brings up a whole lot of discussion about getting O2 in that area.  I don't know whether there is real possibility in any of those threads.

    The Boost canisters aren't going to help in any substantial/affordable way. Is there a reason you're not pursuing welding O2?  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/  

  8. Not sure where you are with the fitting.   I haven't checked broadly on this, but they seem to be a standard item carried by hardware outlets.  That version's usually plastic, and might cost a couple of bucks.  It looks like this (ones I have seen have also been grey or greenish-blue).  https://www.shopnebulizer.com/p-salter-labs-nipple-nut-plastic-hose-barb-fitting.html?gclid=Cj0KCQiAs5eCBhCBARIsAEhk4r7tJ_qJlVbD-LYAVblIQDDS1UQmdfwxpfpdHXiWOyF99pUai8qpIFQaAuFpEALw_wcB

    If I was going in to ask, I think I'd ask for a barb fitting for an oxygen regulator.  Or, a thingie you attach to an oxygen regulator so you can attach a tube to it. You could bring your reg and a piece of the hose tube to test it.

    • Like 1
  9. On 2/22/2021 at 6:26 PM, Kluster said:

    has anyone seemingly ever stopped their cycles permanently?

    As I always say when a question like this comes up, this isn't the best place to get a good answer to that question, because people who have permanently stopped their cycles are not the users here.  There are some good answers in the previous replies about the possibility of pretty-much permanent relief if a preventive busting cycle is maintained, and there might be lots of examples among people who came here and didn't come back of even better successes.  There are similar stories of seemingly potentially permanent results from the D3 regimen.  And, considering all the hype among informed people about the new CGRP medications (Emgality, etc.), it seems impossible to me that there aren't some people who are preventing cycles with that approach.

    • Like 1
  10. You didn't whether the indomethacin is working.  If it is, are you confident that you're taking the right dose (could be reduced if it's a higher dose than necessary)?  Are you taking it along with something to protect your gut?

    There are some treatments aside from indomethacin that sometimes help, but not as reliably. I believe that Batch (xxx) has suggested that the Vitamin D regimen can help with some hemicrania conditions. The literature suggests Celebrex, along with many treatments that are used for CH -- verapamil, Topamax, lithium, gabapentin.  There's at least one study in which vagus nerve stimulation helped -- that's what the Gammacore device does. 

  11. Some of the Yale non-CH psilocybin studies use niacin as a placebo, and say so explicitly (for example, https://clinicaltrials.gov/ct2/show/NCT03356483).  In the CH study, the placebo is listed as "Microcrystalline cellulose capsule."  (https://clinicaltrials.gov/ct2/show/NCT02981173)  Maybe you know what that means. I think it means that there is no active ingredient in it.

    In the CH study, there are two different dosages being tested: essentially, a "high" dose of 10mg and a "low" dose of 1mg (these high and low doses can also be measured on the basis of body weight (see the link above)).  The high dose, 10 mg, is one hundredth of a gram. I have read that the psilo content of a dried shroom is between .5% and 2%.  So, assuming 1%, the 10mg high Yale dose would be roughly equal to what's in 1g of dried MM.  The low dose would roughly equal one-tenth of a gram of dried shroom.  So it seems like only the high dose has any "trip" potential at all. People with lower body weights might be taking less than that, but the weight-based option is, I assume, calibrated to bring about roughly the same trip risk.  Am I calculating this right, and/or is my assumption that pure ingested psilo has a similar effect to psilo in a dried shroom correct?

  12. Thanks, John'.

    I'm now "familiar" with it, from having read the study itself, which is here -- https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0040173 -- and also from glancing through some articles that cite it.  I certainly have nothing definitive to say, except to suggest the following:

    1. The study was done in 2007. You would think it would have been compelling enough to inspire significant follow-up and maybe an actual change in O2 delivery procedures for healthy adults, but I don't see that having happened (though I might not have looked in the right places). (I say "healthy adults" because there seem to be studies related to O2/CO2 for patients receiving anesthesia, and for children, and other special cases. The adverse effects of pure O2 on premature babies have been pretty well studied and accounted for in practice, as far as I can tell.)

    2. If it didn't inspire follow-up or change, maybe it's because practitioners who have seen pure O2 administered to countless people have not noticed the adverse-sounding effects that the authors describe, or any practical consequences from those effects (just guessing).

    3. This study was done on children.  It is hypothesized within the study, but not shown, that it will also apply to healthy adults. I can see a couple of articles that might be addressing that, but I can't access them to find out.  Of course, if you consider people with COPD to be outside the category of "healthy adults," I guess there aren't that many people aside from people with CH who regularly inhale pure O2 (high-flying military pilots??).

    4. Specifically regarding CH: I don't think it is known exactly how O2 aborts CH, but one assumed factor is vasoconstriction.  I gather from reading this article that the vasoconstriction is caused (at least in part) by lack of CO2.  So could it be that the "negative" vasoconstriction side effect of pure O2 is actually a positive one for treating CH?  They also mention effects on the hypothalamus, which is considered a crucial brain area in relationship to CH.  Could it be that this hypothalamic reaction is also part of the treatment??????

    • Like 2
  13. There's info in here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

    If your medical tanks are large ones ("M" size or larger) you won't need a new regulator.  You can look at the links within that post to see if what you have is the same as what is recommended.  Large medical tanks and ALL welding tanks use a CGA540 connection.

    No one here has reported any health issues/bad reactions from welding tanks, and a lot of people use them.  Some people argue that since impurities will really mess up a welding job, welding O2 has to be at least as pure as medical.

    • Like 1
  14. 6 hours ago, drewbie said:

    My escape hatch abortives failing makes me feel like I'm staring at a future against the beast with no plan B.

    drewbie, I haven't read your whole history, so maybe I'm mentioning things that you have already addressed, but there's a lot of stuff out there that could be part of a plan B that becomes part of Plan A. I feel hopeful that the D3 regimen is likely to make a big difference for you. A week is way too soon to tell about that, but it could be what is at least reducing your symptoms now. I think Batch (xxx) would suggest that at a time like now when your symptoms have ramped up, you ought to also be taking Benadryl or Quercetin. Jteira has mentioned busting. A person might even be able to do that without the regular tripping by using seeds. 

    Pharmaceutically, there are all the new CGRP-related medications, both preventive (for example, Emgality) and abortive (for example, Ubrelvy).  The medication Octreotide can work as an abortive when triptans don't, and so can DHE (dihydroergotamine).  You might have tried Verapamil as a preventive, but even if you did, you might not have reached a high enough level for it to be effective (most doctors don't prescribe the levels that some people with CH need).  Lithium is often quite effective as a preventive, and there are other things that work for some people, such as gabapentin and topirimate.  Indomethacin actually helps some people with CH, and for reasons I mentioned in my post to Jteira, it might be worth giving that a shot.  For some people, ketamine has been a very effective preventive.

    I understand that saying there are a lot of possible treatments and "all you have to do" is keep trying them is maybe not very heartening. There is likely to be some disappointment associated with that search, and some expense, and in some cases some side effects that you might not want. But you plainly have strong reasons to keep trying, and I'm just saying that there are things that could be tried.

    • Like 1
  15. 26 minutes ago, Jteira said:

    I have hemicrania continua, FYI. 

    That's a lovely message you wrote, Jt', as your posts so often are.

    I don't want to hijack this important thread, but I am interested in the sentence I quoted for a few reasons. 

    First, in reading in drewbies' post about the "the symptoms that persist between cycles (that my neuro has insisted are migraine)," and the shortcomings of O2 and triptans, and the many daily attacks, and the efficacy of the nerve blocks (which are often effective for HC), I couldn't help thinking of the possibility that drewbie might have HC or some variation of it. 

    Beyond that, I'm interested in what you said for purposes of increasing my understanding related to HC.  I can recall a few people who came here thinking they had CH but later turned out to have HC.  The pattern was the same -- busting helped them for maybe a day or two but not longer.  I now have to revise my understanding of this.  Maybe it's the depth and regularity of your busting that made the difference, or maybe there was just something else going on that shouldn't have led me to generalize about HC and busting in the first place.

    So, three questions:

    Did busting work well for you from the beginning, or was it just your commitment to make it a way of life that turned things around?

    Did you use Indomethacin at some point to treat your HC?

    Are you doing any other major things in addition to busting--D3 regimen, for example?

    Thank you.

     

      

  16. Agreed -- it's stunningly wrong.  (I should mention that the BOL trial was funded by ClusterBusters.)

    Many of us here (or several of us, at least) have observed or participated in many experiences of trying to make BOL available over the past ten-plus years.  A company, Entheogen, was founded in part for that purpose.  But Entheogen couldn't raise enough money to do the necessary clinical trials toward FDA approval. Clinical trials are very expensive, and among other things potential investors didn't see the potential market as big enough to justify the investment -- not to mention that at least at that time, there was a real concern that an LSD-based substance could not get approved no matter what the trials said. (The trial funded by CB didn't meet any of the criteria for rigorous clinical testing.)  There were patents to be dealt with, not just the patent for BOL itself but also a patent that was taken out for using BOL to treat CH.  That patent created a pretty ugly rift between two doctors who were very big supporters of CB and pioneers and the use of psychedelics to treat CH.  (Money changes everything, as they say.)  As the article notes, a big deal now is the ability to make BOL without starting with LSD. So, prayerfully, things are better now in many ways. One of those ways, which is a double-edged sword, is the potential for BOL to serve a much bigger market than the CH community. If it has potential as a treatment for depression, for example, there will be much more interest in making the investment--but the clinical trials will probably focus on that, and possibly mean that BOL would be available, but its use for CH would be "off-label" in the sense that it wasn't demonstrated by clinical trials.

    If you're a drug manufacturer, you have an additional issue related to CH. If doctors don't diagnose CH correctly, they won't know that their patient will benefit from BOL. And even if they do diagnose CH correctly, we have seen that way too many doctors don't even prescribe oxygen, or don't correctly prescribe practically anything. In part, they don't prescribe O2 because they have no familiarity with high-flow O2 with their patients, so they are reluctant/afraid to prescribe it.  It might be tough to get them to prescribe something LSD-based.  (And I remember reading somewhere that most doctors believe that they are very effective at prescribing for CH. Probably because their patients don't come back, or don't know any better.) So you have a massive education campaign to do to (1) get CH diagnosed properly, and then (2) get BOL prescribed. The cost of that is part of the cost-benefit analysis that goes into pharma companies' analysis of getting into a clinical trial.

    I guess I'm saying all this because there are many reasons now to be more optimistic than ever, but, as Jeebs said up above, we've been through a "maddening (and then some) history of false starts," so I am trying to temper my optimism. 

    • Like 1
    • Thanks 1
  17. Thank you, devonrex.  I appreciate your caution about this, and will be more careful.  I could quibble with some of your points, but what you say is wise and appreciated, and I will remember it.

    • Like 3
  18. As Batch's statistics show, low or not low isn't the right criterion for D3 effectiveness.  Sometimes you have to get into the "high" range for it to be effective. 

    (4mg is better than 6, but 4 is still probably twice what you need to stop a CH attack. If you're not having side effects and you have plenty of injectors and cost is not an issue and you're not using too much per day, no problem . . . )

  19. 1 hour ago, Stephen said:

    1. Go to a lab and ask them to test serum D3 levels

    2. if they are above 45 then no need for the regimen? If they are lower, then start regimen

    3. Take bio tech d3-50 every day for 2 weeks.

    I wish I could respond to the other things you ask about, but I can say about these three that to the best of my knowledge, Batch (xxx) says you can start the regimen before being tested, and you should start "with a few doses at 10,000IU per day" (his words), because of the small risk of a negative reaction to D3.  I'm not sure where your point 2 comes from. If you're having CH attacks, then your D level is too low.  Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL." The specifics of these ranges might have changed since he wrote that, but you can see that many people needed to get considerably higher than 45 ng/ml to get relief.

    1 hour ago, Stephen said:

    luckily sumatriptan injections are still doing the trick

    If you are using the full 6mg injector each time, you shouldn't (or at least needn't) be: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

     

    • Like 1
  20. 3 hours ago, Jenn B said:

    He suggested Nurtec to replace the Imitrex I've been using, which really knocks me on my ass and leaves me with some unpleasant side effects.

    I don't have anything to say about Nurtec, except to mention that just yesterday a person posted that s/he was recently prescribed Nurtec: https://clusterbusters.org/forums/topic/7465-newbie-to-group-advice/?tab=comments#comment-71856   I looked at goodrx.com, where there are often free coupons for lower prices for things you can get at standard pharmacies, but the lowest price there was $886.62.

    I did want to mention that a possible antidote to being knocked on one's ass by Imitrex (and to most of the other side effects) is to use less of it each time.  Most people only need about 2mg to stop an attack, and the injector holds 6mg.  Many people disassemble the autoinjector so they can give themselves smaller doses.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Some folks can get it in vials with syringes so they can measure out their own doses. Some do fine with a triptan nasal spray, which has fewer side effects.

    Do you have oxygen?  Are you doing the D3 regimen?

    • Like 2
  21. Welcome, Erica.  As it is said here, glad you are here but sorry you have to be.

    First, foremost, and above all else -- OXYGEN is what you want for stopping attacks.  It's the life-changer.  You will have a lot less need for other abortive meds (such as triptans or Nurtec) when you use O2. 

    Then there's the vitamin D3 regimen -- the best, safest preventive.

    An energy shot (such as 5-Hour Energy) or drink (such as Red Bull) at the first sign of an attack can reduce its severity or even sometimes abort the attack. There are reasons why the shots are preferred (more caffeine, easier to get down fast).  Don't know how this fits with your heart situation.

    You can read about all of those things, and some more, in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    You might want to consider busting.  Click on the "New Users..." wording in the blue banner at the top of each page for busting basics.  The same information you would get when you click there is at the very end of the post I linked you to.

     

     

    • Like 2
  22. 27 minutes ago, glo said:

    Thank you, busting is the plan.  Luckily it is "decriminalized" here (DC) though only avail in edible chocolate.  I don't see any dosing advice for that method...any ideas?  Otherwise we'll wing it.  

    So DC's "decriminalization" (which you correctly put in quotes because it is actually a decision to make the arrest of users of entheogens a very low priority) has actually made it through Congress? As I recall, Congress blocked even the decriminalization of marijuana in the District.  Others will have to comment on the feasibility of busting with chocolate-based psilocybin.  I suspect that you can't get enough psilo in that form . . . but I don't know.  I do know that you can legally buy RC seeds and have them shipped to DC.

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