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Posts posted by CHfather

  1. 21 hours ago, Cjmoe said:

    He put me on 5000 for a month and said to lower it to 2500 after that. 

    That won't be enough, probably, and it is strongly believed that the cofactors (calcium, zinc, etc.) are important.  The post I linked you to in my original post has a link to details about the D3 regimen that is used here.

    Just FYI, you can look up many things here using the search bar at the top right of every page.  For some things, such as D3, there might be so many entries that it's a bit overwhelming.

  2. Since you're new to it, this overview might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/.  At the end of that post you can read the basics about busting, which is why this site was originally created.
    How much D3 are you taking, and are you taking any other supplements with it (calcium, for example)?

    10 hours ago, Cjmoe said:

    I think what’s worrying me is I hear so many people say the get this attack, many times a day, or days in a row. 

    Yes, that's how it works for most people.  That's one very good reason to optimize the resources you do have (D3, oxygen, triptan) and be sure you know what else is available to you. 

    • Like 1
  3. @Sub
    There's a discussion of shadows toward the end of this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Ginger is often very effective. In addition to the ginger items discussed there, some people take ginger capsules. @Shaun brearley wrote recently: "I take 2 ginger capsules every day even out of cycle, Organic root ginger 1100mg each capsule, can order them on amazon."  

    (Since you mention that you're new to CH literature, other sections in the link above might have some helpful info for you.)

    You can look for other posts about shadows (as devonrex says, there are lots of them) by putting the word into the search bar that is at the top of each page.

  4. Can't comment on the mechanical aspect (the fluttering), but I would say that iIf you are saying you're doing, or aiming at, 30 in/out cycles per minute, which sounds to me like hyperventilating, I'd say that's not the typical way of doing it.  If that works for you, I'm surely not going to tell you it's wrong. The more typical model is deep inhale/hold a second or two/full exhale with crunch to expel as much air as possible. (Here, too, people discover variations of the tempo that works best for them.)  I think I do remember seeing @Racer1_NC demonstrating and kind of fast inhale/exhale in a video . . . so I could be wrong about how common that method is.  

    Batch, another oxygen expert, reccomends ten 3-second very deep/forceful in/out cycles with room air, followed by a deep inhale of the pure O2 and holding it for 30 seconds with a crunch exhale, and then back to the room air hyperventilating for 30 seconds, then back to O2 from the tank, etc.

    • Like 2
  5. The general belief here these days, I think, is that verap at 360/day or less surely will not completely block busting, and might not interfere at all.  At 480, it is believed to get more iffy.  Because for a long time verap was an absolute no-no, we don't have a lot of data about all this, but it seems reliable. (Also, of course, CH/busting are not exact sciences to begin with, and also, I think fewer people are using verap, relying on the D regimen to do the preventive job.)

    Just a note: It has been recommended by Batch (known here as xxx) to be sure to separate the calcium in the D3 regimen by at least 6 hours from taking verapamil, becuse verap is a calcium channel blocker.

    Sure, you can bust before sleeping. I'll leave it to the greater experts to comment on the practicalities of this. 

    MM dose recommendation these days is typically 1 - 1.5 grams of dried shrooms.  The key issue is to be sure you get enough, since there is no real way to tell whether that has happened (slapbacks suggest that you got enough, and a light trip or a more serious trip also indicate that you got enough).  If you're comfortable with MM tripping, I think most people would suggest that you start toward the higher end of the range.  If you're not comfortable with tripping, you can either just do it anyway (with safeguards making a good trip more likely -- set and setting, and maybe some kind of sedating medication), or you can start lower.  I keep harping on the fact that in the early days, this was the recommendation: "the range for a cubensis dose will be from about 0.5 grams to 1.5 grams. With more powerful species such as Psilocybe azurescens or Psilocybe cyanescens, a quarter or half a gram will be enough." (https://clusterbusters.org/forums/topic/683-4-the-psilocybin-mushroom/)  Those pioneers were not making this stuff up, but unlike today, they were more concerned with minimizing tripping (and the early research articles invariably referred to a "subhallucinogenic" dose as being sufficient).  I think today's recommendations are higher for the reason I stated -- being sure you got enough so you don't "waste" a dose, with less concern about whether or not there's a trip.  But the trip is not therapeutic; it's a side effect of the therapy.  That's why I favor RC seeds.

    You can read more about busting protocol (and RC) by clicking on "New Users -- Please Read Here First" within the blue banner near the top of each page.




    • Like 2
  6. In the "Treatment of Cluster Headache" that document he created for the American Headache Society, Dr. Goadsby says "1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach."  That was a few years ago.  The 2023 European Academy of Neurology treatment guidelines for CH, of which Goadsby was one of the authors, refer to "the use of at least 100 mg prednisone (or equivalent corticosteroid) given orally." (I can only see the abstract of this article so I don't know what the taper is.)

    In a 2020 study, patients were given "100 mg oral prednisone for 5 days followed by tapering of 20 mg every 3 days," so that's 18 days.   Another study in 2021 used that same protocol.

    A comment on one of those studies mentioned "historical ambiguity about the optimal oral corticosteroid dosing regimen."  But maybe the higher initial level and/or longer duration than a typical approach is what is being used now.  As with many other treatments for CH (including busting), maybe the dosages creep up as people decide to throw more at this condition than they might otherwise have considered at first.

    Sorry that busting isn't working for you this time!!!!!  Have you considered switching substances (from MM to L or seeds, for example), which does seem to help many people? 


  7. If it's the sumatriptan injector (Imitrex) that you have, you can split your injections to use less and still get the same results. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    YES, get that oxygen.  Changes everything.  See the overview file linked to in the last sentence below for more info about getting and using O2.

    Are you doing the whole D3 regimen?  https://clusterbusters.org/forums/topic/1308-d3-regimen/


    Was the loratadine (Claritin) prescribed, or did you decide to take it?  (It's a good idea; I'm just wondering.)

    If you're not taking the full D3 regimen, you don't have a real preventive medication. That's what the Depakote would be for.  I don't think Depakote is prescribed much anymore (side effects, I would guess), but it was fairly effective in small clinical trials.  If you do the full D3 regimen, you'll get the prevention without the side effects.  I take it you haven't tried Emgality or one of the newish CGRP medications?

    Since you're new to this thing, you might get some thoughts from this overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    • Like 3
  8. 2 hours ago, Dallas Denny said:

    I can only recall one forum member from the NYC area and he hasn't been active here in several years!!

    I think that might be the member Into Light.  @TorontoCanada, you might try DMing him.  (Click on the envelope icon at the top right.)  He did not leave here under the happiest of circumstances, but he seemed like a good-enough guy to me.

    I assume you have talked with your O2 supplier.  Googling "oxygen tank rentals in New York City," I did see a few things, including this: https://www.cloudofgoods.com/new-york-city-ny/medical-rentals/oxygen-tank-127.  It's a very small tank, maybe good for one abort.  But maybe they'll be willing to tell you about bigger ones.  Lots of listings for people renting concentrators . . . which might be better than nothing.

  9. @Mike OB, that is some combination of unpleasant meds you're taking!  As a small suggestion, I would consider splitting your sumatriptan injections.  Most people can get good relief with a third or half of what's in that injector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    As a larger thought, the vitamin D3 regimen has worked very well as a preventive for hundreds of people, and might allow you to get off a couple of your current meds.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

    And then there's busting, which of course is the primary reason this site exists. You can read about that by clicking on "New Users -- Please Read Here First" at the top of any page.

    Lithium usually is only prescribed to people with chronic CH, because the rebounds from stopping it can be severe (and of course many people have unpleasant side effects).

    I would imagine that if those meds are working okay for you, you might be very reluctant to experiment with alternatives.  I'd only suggest that the absence of negative side effects from D3 and generally from busting would almost certainly be better for you in the long term.


    • Like 2
  10. 22 hours ago, MagicAces said:

    Ativan, ibprophen, tylenol, Celebrex, indomethicine, and Benadryl, triptans and trudehsa are all in the rotation at this point.

    Great questions and comments from FunTimes.  It's not clear to me whether that rotation you described helped.  Can you tell which (if any) of them did make a difference?  I'm particularly wondering about the triptans: what form were they in (pill, spray, injection) and did they help?  Some of these things should have helped right away -- trudesha and triptans.  The rest had no likelihood of helping if it was CH.  I wouldn't be too quick to say that the Indomethacin eliminates hermicrania as a possibility: How much did you take, and for how long?

  11. Ah, that!  Folks here grow theirs, or they locate a source.  Can help you with the growing, but probably not with the sourcing.

    Rivea corymbosa (RC) seeds are just as effective as psilocybin, and they are legal to buy and possess in most US states and many other locations.  And there's no real trip involved.  You might want to start there.

    • Like 1
  12. If you mean info about how to use psilocybin, you should start by clicking on "New Users -- Please Read here First" within the blue banner at the top of every page.  That's the basics.  After that, it's asking questions.

  13. The recommendation for CH is three doses, starting when a cycle begins.  Two is for migraine.

    This is from the Lilly/Emgality website (https://uspl.lilly.com/emgality/emgality.html#pi)

    • Episodic cluster headache recommended dosage: 300 mg (administered as three consecutive injections of 100 mg each) at the onset of the cluster period, and then monthly until the end of the cluster period.
    You still could get some relief, so it's worth trying, but it might not be a real test.  
    Don't recall from your previous posts what you're doing for your CH.  D3?  Verapamil?  Tried busting?  Oxygen?  Seems like prednisone would pretty surely get you some days of relief.
    • Like 1
  14. Nice!!!!  This 2023 editorial in the journal of the International Headache Society seems relevant (and is an interesting short read): https://journals.sagepub.com/doi/full/10.1177/03331024231212451?utm_source=facebook&utm_medium=social&utm_campaign=ihead2024&utm_content=ap_23pupgtmxz&fbclid=IwAR2YiwAM_00DoSP7j_0PP_hP5zkFXsf5GMpQqLp_3842NNAa0Um0h0L45Dk#body-ref-bibr16-03331024231212451   Would it help with awareness if these "headaches" were actually described as what they are, deep brain disorders?  

    • Like 2
  15. There's info here that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    For your future reference -- the tooth extraction probably made things worse, because the anesthetic typically used for dental work (and other things), epinephrine, is a major CH trigger.  You can see more about triggers in the file of that name in the ClusterBuster Files section (I think there's also a link to the Triggers file in the link I just gave you above).

    Also for future reference, the search bar at the top of the page is a useful tool for information about some things.  Seacrching capsaicin, for example, yields interesting results.  (Search "oxygen" or "D3" would just be overwhelming.)

    10 hours ago, Dany said:

    My definition of grateful sure has changed since the CH started.

    Ain't that the truth!

    10 hours ago, Dany said:

    I dream of remission, even for a month.

    The D3 regimen, properly followed, just might do that for you.  And there's also busting, of course.

    • Like 2
  16. 5 hours ago, Snowflake said:

    I found that oxygen at 4litres per minute are aborting my attacks within 7 to 10 mins. If this is the case, does anyone out there think that those oxygen machines would or could help me? Instead of the tanks. Cos my breathing technique is that I wait for the bag to fill, then pull in the oxygen and hold it until the bag fills again. Then repeat. I find that's works great for me. 

    The thing about the oxygen machine (concentrator) is that they are not pure oxygen the way O2 from a tank is.  Some room air gets mixed in, so you might not get the same results.  As FunTimes says, probably no harm in trying.

    I would suggest that if you are aborting in 7-10 minutes with the method you're using, you might be able to get a quicker abort with the more "standard" method using a higher flow rate of a deep inhale, holding it in your lungs for a couple of seconds, and then forcefully exhaling (rather than just holding the air as you wait for the bag to fill).  But you've been at this for a while and maybe your method really is best for you.

    • Like 4
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