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Posts posted by CHfather

  1. @Dallas Denny, I agree with what you say here: "the amounts we suggest are, in my mind, sub hallucinogenic but that doesn't mean there's not an effect."  I was just confused because in your previous statement you wrote, "while the sub hallucinogenic doses may prove effective for some ailments, I believe clusterheads will require a larger dose."  

  2. 16 minutes ago, Dallas Denny said:

    As to the scope of the research, while the sub hallucinogenic doses may prove effective for some ailments, I believe clusterheads will require a larger dose to see any efficacy!

    Denny, is this because you just believe that a sub-hallucinogenic dose is just too little "medicine"?  I guess my question here is just clarifying important semantics.  To me, "sub-hallucinogenic" means that something might happen (or nothing might happen), but it's not a full-blown trip experience. So I'm asking whether you think a trip experience is essential, not for the trip itself but because that's the only way to get enough psilo?  Or do you think a sub-hallucinogenic dose, with some effects, just not "hallucinations," could be okay?  That's what Bob W is saying in the next paragraph, and Dr. Schindler actually uses the word "non-hallucinogenic" below to describe some successful busts.  

    Here's Bob, from last year, saying that the the right dose is going to be sub-hallucinogenic: somewhere between no effects and a full-blown trip: "The small doses of psychedelics used to treat cluster headaches are usually enough to produce some felt effects, often described to me as a two-beer buzz.  But these are still far less noticeable than the effects of a recreational dose."  https://blog.petrieflom.law.harvard.edu/2022/04/18/small-doses-of-psychedelics-for-cluster-headaches/

    This is Dr. Schindler [the person conducting the Yale research] reporting on the results of a 2015 CB survey of 496 people: "...infrequent and non-hallucinogenic doses were reported to be efficacious." https://pubmed.ncbi.nlm.nih.gov/26595349/  (To me, non-hallucinogenic and sub-hallucinogenic both mean the same thing -- no "trip.")

    More from Schindler (https://americanmigrainefoundation.org/resource-library/can-psilocybin-treat-cluster-headache/):    "Researchers also discovered that for those who found the psilocybin treatments effective, the degree of symptom and pain relief was not directly related to the strength or intensity of the psychedelic experience. This indicates that “the mechanism [of cluster headache] is probably not directly related to the psychedelic experience itself,” says Dr. Schindler. “That’s in contrast to most studies in psychiatry [involving psilocybin], where the bigger your experience is on the test day, the greater your improvement weeks and months down the line.”  

    Way back in 2006, from one of the Sewell/Halpern/Pope publications: "...given the apparent efficacy of subhallucinogenic doses, these drugs might benefit cluster headache by a mechanism unrelated to their psychoactive effects."   https://www.semanticscholar.org/paper/Response-of-cluster-headache-to-psilocybin-and-LSD-Sewell-Halpern/e9aec20b22da4b258365f1e21d17ac3c62a48899

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  3. As I remember, Cindi, you are only taking verapamil, probably at a pretty low dose.  So the hopeful part is that soon you'll have more of an arsenal.  Don't know whether you have started the D3 regimen or tried any of the "Treatments Without Oxygen ..." that are mentioned toward the end of this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- which I'm pretty sure I would have linked to in your earlier thread.  

    CH is very unpredictable for lots of people.  With the pattern you have described here, I'm also wondering about triggers, which you can read more about here: https://clusterbusters.org/forums/topic/4568-triggers/ .  (I'd suggest reading through the whole thread, not just the first post.) 


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  4. Just a few unreliable thoughts . . . 

    As Bosco' says, I'd try to avoid the triptan.  It sounds like you are doing that the best you can.  Many people find that ginger helps a lot with shadows.  Ginger tea (store-bought made from real ginger, or made yourself by peeling and boiling some ginger (look up specifics on google)); ginger candy (Ginger People or crystallized ginger); non-alcoholic ginger beer.  Excedrin helps some with shadows.

    Some people find that frequent use of caffeine reduces its effectiveness.  You gotta do what you gotta do, so this is again just a thought for you to consider.  Basically, try not to drink it when you don't need it.

    You might try some Benadryl, since sometimes persistent CH stuff results from allergies.  I think Batch would suggest trying Quercetin first, because it's less drowsy-making.  He suggests 3 grams/day, but you might start less than that (or not). Some people stick with the Benadryl (roughly 25 mg four times a day, as tolerated). 

    On 2/24/2023 at 5:10 PM, Johnnynash1967 said:

    it seems the O2 treatment isn’t as effective as before

    I'm not sure that O2 is good for shadows.  I just don't know.  Haven't read of many people using it for that, but if it has worked for you, one possible reason it might be less effective now is that O2 is (for many people) less effective when the tank gets low on O2 -- maybe 1/3 full, or less.

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  5. 3 hours ago, dmlonghorn said:

    I take a daily Zyrtec to mitigate this. My heavy cycle period is right around the corner, we'll see how this year goes.

    Thanks, dm',

    The daily Zyrtec reduces but doesn't eliminate the "allergy" symptoms?

    And fingers crossed for you anticipated heavy cycle not to be too darn heavy.

  6. My daughter (the person in my family with CH) gets intense allergy symptoms at the same time as her attacks -- starting just before an attack and ending just after it.  Itchy eyes, nasal congestion, a lot of sneezing.  I know some of this is CH symptoms, but she knows the difference.  We are wondering whether this is true for anyone else.

    This is not a D3 question. She's on the full regimen and some of the "Full Monty" elements. There are zero reported pollens where she lives.  Her attacks are so mild (right now) that she isn't using O2 to abort, just tea -- so it isn't anything in her O2 system.  Like I say, just wondering whether anyone else has had this odd thing happen.

  7. I suppose your doc wanted his/her diagnosis confirmed by a neuro before prescribing any of the other standard CH treatments, such as oxygen.  The timing of attacks that you have described surely sounds like CH.  I assume you'll have an MRI to rule out anything else (CH can only be diagnosed from the symptoms, not from an MRI or any other medical test).

    Being new to the condition, you might get some benefit from this "overview" document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/.  

    As is mentioned in there, lot of people find that caffeine will stop an attack or reduce its severity -- and even though your attacks are nocturnal, most people find they can get right back to sleep even after that caffeine intake.  Given the relative mildness of your attacks and your newness to CH, I wouldn't be surprised if a strong cup of coffee would be enough to do the job.  Some people do energy drinks of one sort or another (discussed in the document).

    As others have said, you'll find a wonderfully supportive community here, so please keep us informed and don't hesitate to ask any questions you might have.


    • Like 3
  8. 10 hours ago, CaptChaos said:

    I'm not finding it as effective now

    I think it is just the case that there are times when O2 is less effective, but I'm also gonna mention that many people (but probably not all) find that when the O2 in the tank gets low (which could be from about 1/3 full to less), it works less effectively.  It is also true for some people that only consuming caffeine when starting on the O2 (and not at other times of the day) seems to help make the abort more effective.

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  9. Semi, I'm not sure this will be helpful, since you've had CH for a long time and so you might be describing something more unusual than what are called "shadows" here -- ongoing pain at a lower level than a full-blown attack.  There is some advice about shadows (under the heading Shadows) in this document, toward the end -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- and there is a lot of discussion of shadows in various threads.  You can see that discussion by typing shadow into the search bar that is at the top right side of every page.  There's a lot there, but you can skim the summary text to get a sense of what the posts cover.

    If you're just looking for SUNCT/SUNA information, I hope someone will respond directly, but you can also see the posts about them by putting SUNCT into the search bar.

    • Like 2
  10. @Rachael R,

    The answers to your questions are a little complicated.  I think it would help you to read this post.  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/


    And maybe also the part near the beginning, headed "Oxygen," in this post.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/


    You might still have questions, but maybe they'll be easier to answer.  

    I don't understand why so many doctors say that medical O2 can't be obtained.  Did she give you a specific reason (insurance?  Covid-related shortages?).  Usually, there's a way.  

    10 hours ago, Rachael R said:

    About how long does a tank last? I know everyone's experience will be different - but this is all new to me.

    This might be in one of the posts, but the way to calculate very roughly how long a tank will last is to divide its capacity in liters by the flow rate you will be using (which is measured in liters per minute).  US welding tanks are stated in cubic feet, so you have to convert that capacity to liters.  Say you have a 60 cubic foot tank.  That's 1699 liters.  I know that because I typed [60 cu ft = liters] into google and it told me the answer.  If you were using a flow rate of 15 lpm (liters per minute), you would get 1699/15 minutes of oxygen from the tank, or 113 minutes.  For a bunch of reasons, you can only really rely on getting about two-thirds of that as fully useful O2 for aborting, or about 75 minutes.  You might use a higher flow rate, which would theoretically mean that the tank would empty faster -- but many people get faster aborts with higher flow rates, so they might get as many or more aborts from a tank as someone using a 15 lpm flow rate.  (Like I said, it can be a little complicated -- but of course the simple urgency is to get O2 and start aborting with it.  The rest works itself out.)

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  11. Wow, so sorry that happened.  Thank god you made it home, indeed.  Horrible.

    Of course, it's an important reminder to everyone to "don't leave home without it," the "it" being whatever will help you out in that situation, from a small O2 setup in the car to a 5-Hour Energy in the pocket or purse to whatever emergency abortive you have (Imitrex, Zomig, etc.).  

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  12. In my experience, Imitrex is cheaper using goodrx.com than with insurance.  Not "for cheap" by a longshot, but less.  Don't know about the others.

    I also think there are other places like goodrx.

    Are you splitting those injections?  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    Do you feel like the Emgality is helping?

    Do you know about the vitamin D3 regimen?  It can possibly replace your verapamil.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

    While I'm at it . . . Do you have oxygen?

    • Like 3

    You want a non-rebreather mask (sometimes called a non-rebreathing mask), not a rebreather mask or a partial rebreather mask.   I don't know what the visible differences are.  I am pretty sure that a rebreather has two sets of completely open holes in the mask (circles of small holes), while a non-rebreather will have a gasket, usually white, behind at least one of those circles of holes.   

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  14. 5 minutes ago, chh said:

    About the O2 mask with a bag when I use it and inhale I also inhale CO2 right ? is it better without a bag ?

    With a non-rebreather mask, you are only inhaling pure O2.  That's what's in the bag, pure O2.  If it was a rebreather mask, you'd be getting some CO2.  They both have bags, but the design of the rebreather allows some of your exhaled air, with CO2, into the bag, whereas the design of the non-rebreather mask keeps your exhaled air out of the bag so no CO2 gets mixed in.

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  15. I'm sorry . . . I don't have anything more to suggest.  If the liometacen/indomethacin is actually working, then it's possible (I imagine) that you might have a condition that has symptoms like cluster headache but is not the same, called a hemicrania.  There are several types of that condition, most commonly hemicrania continua and paroxysmal hemicrania, and they can be either episodic or chronic.  https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua#:~:text=Hemicrania continua and paroxysmal hemicrania both affect one side of,hemicrania causes repeated%2C sudden headaches.  People with hemicranias generally do not get results from triptans, as it seems you don't, and they also generally do not get results from oxygen, which seems like it might also be true for you.  They do get results from indomethacin, but it is administered in the form of a pill every day (multiple times a day) as a way to prevent attacks, and not, as you are using it, as an injection to stop an attack.  Maybe you have also tried this.  Usually the daily pills are taken with something to protect the stomach lining and digestive system. (I see you were here some years ago asking about busting. If that also didn't work for you, it would be a further indicator that you might have a hemicrania, since generally busting has little effect on hemicranias.)  We can hope that when your O2 system is sorted out, you will start getting results from that and things will be much better.  But, if you haven't done it already, I would look into the possibility of a hemicrania treated with indomethacin.  Like I say, I'm very sorry for what you are experiencing, and very sorry that I haven't been able to be more helpful to you.

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  16. did you prescribe this liometacen to yourself, or did your doctor prescribe it?  it is basically a drug we know of here, called indomethacin.  it is very unlikely to help with your CH, and it is probably causing pain in your gut, too.  could tell you a long story about how we know this, but take my word for it.  i have no idea what the story is in egypt, but of course there are many countries where you can get drugs without a prescription that can only be obtained with a prescription in some other countries.  i am not prescribing anything here, only telling you what we know about what works and what doesn't.  the medicine that will stop CH attacks is injectable sumatriptan (called Imitrex in the US and Imigran in some other countries), or sometimes a nasal spray of zolmitriptan (Zomig).  you have to be careful with these, but they will stop attacks.  "painkillers" won't stop attacks, no matter how strong they are.  Imitrex and Zomig are standard prescriptions for CH.  if a doctor is prescribing for you, he or she should know that.  the pill form of sumatriptan, or zolmitriptan, or any triptan, is not very helpful, because it takes too long to work, but it might help you, particularly if your attacks occur at regular times so you can take a pill in advance.

    the standard medicine to prevent CH attacks is verapamil.  most people here strongly prefer the vitamin d3 regimen, but you don't seem sold on that.  verapamil should be prescribed by a doctor and used at first under a doctor's supervision to be sure it doesn't damage your heart. many people get some relief from taking a steroid, such as prednisone. it is taken in a "taper," with a high dose at first and then lower doses over a period of roughly a couple of weeks.  again, a doctor should know about this, and it doesn't usually end a CH cycle, but gives a few days of relief. 

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  17. a red bull has about the same caffeine as an 8-ounce cup of coffee.  some people think that other ingredients in red bull make it more effective than coffee alone.  it could be that if you get the oxygen working properly you can get a satisfactory end to an attack without caffeine.

    if you use the bag method that i linked you to, flow rate is not an issue.  but 95% O2 is generally not as good as 100% from a tank. 

    • Like 2
  18. [Note: I was writing this as Bejeeber posted his reply.]

    Many people use Red Bull.  The differences between Red Bull and the smaller energy shots like 5-Hour Energy are (1) It's harder to quickly drink down an 8 ounce Red Bull than a 2-ounce 5-Hour Energy, and (2) even though it is smaller, the 5-Hour Energy actually has twice as much caffeine as the Red Bull.  But as I say, many people do fine with the Red Bull.  Many people like whatever drink they use to be very cold.  As I mentioned, you could also try brewing some strong coffee and keeping it on hand for when an attack comes.

    A concentrator is not a good idea.  It does not make pure oxygen like what you get from a tank, and usually the flow rate is very low.

    In the previous posts in this thread, there is discussion about the kind of mask you have.  It is kind of shocking to me that you can't get a non-rebreather mask.  It is important when using oxygen that you get as much "old air" out of your lungs as possible, by deeply exhaling, and then fill your lungs with oxygen by deeply inhaling.  In a system with a bag, the oxygen is held in the bag until the next time you inhale. With the mask you have, the O2 keeps flowing.  That just wastes a lot of oxygen, and I think it might encourage a kind of "normal" breathing instead of the deep inhales and exhales you need to stop an attack.  Maybe you could make your own bag, as described here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/.  It's not the same as a nonrebreather mask, but it would serve the same purpose for you.  (Some people think it's not a good idea to keep a bag full of O2 sitting around in your home.) 

    • Like 2
  19. 9 hours ago, chh said:

    cyclinder + mask + regulator up to 250 o2 pressure or 3500 lb/in2 + water cup

    No nonrebreather mask and no caffeine

    what I am missing ?


    @Racer1_NC  Help, please!

    9 hours ago, chh said:

    No nonrebreather mask and no caffeine

    what I am missing ?

    I asked Racer for help because I don't recognize this system.  Most people find that some form of caffeine ingested just as you are starting the O2 will significantly speed up the abort.  Often, that's in the form of an "energy shot," such as 5-Hour Energy, but for some it can be just a strong cup of coffee, and some favor other energy beverages, such as V-8 Energy.  I can't tell from this what your mask is, but a nonrebreather is the best way to get O2 for CH (or a demand valve, or the mask that is made for people with CH (the ClusterO2 Kit), but those all work on the same principle, that you get pure O2 when you're ready to inhale).  

    • Like 2
  20. 2 hours ago, chh said:

    I found that on my extreme attacks O2 does not work , it make the pain happen faster

    how are you using o2?  what is your system (do you have tanks, do you have a regulator that goes up to at least 25 lpm, do you have a nonrebreather mask (a mask with a bag attached to it)?  do you take some kind of caffeine when you start?

  21. Jackie, the primary thing you want from a doctor, if you have CH, is a prescription for oxygen.  This post will give you a lot of info about CH treatments: https://clusterbusters.org/forums/forum/6-clusterbuster-files/  

    It's not clear to me that you have CH, which doesn't really cause severe pain 24/7.  If you are having severe 24/7 pain with periods during the day when the pain is worse, and if you have tried standard CH medications without relief (particularly if you have tried oxygen and also tried injectable sumatriptan, or Imitrex), it seems more likely to me that you might have a condition that is very similar to CH but treated differently, called hemicrania continua (https://www.ninds.nih.gov/health-information/disorders/hemicrania-continua#:~:text=about related topics-,What is hemicrania continua%3F,both sides of the head.)

    • Like 3
  22. 2 hours ago, jon019 said:


    For full accuracy: remove the hair, add about 50 years and 50 (or 60) pounds, insert computer, and replace vest and tie with ripped pajama top. 
    But back in the day, I did get to do some fun things.

    • Haha 5
  23. kat', I suppose you have checked this out thoroughly, but from looking on google, it seems like there are lots of welding O2 rental places in Puerto Rico, and also maybe a place where you could rent a concentrator, which might be better than nothing (https://www.rentittoday.com/medical-equipment-rentals/san-juan-puerto-rico-portable-oxygen-concentrator-rental-for-cruise-ship-22966).  Maybe it's more of a hassle than you want to go through on vacation, or even too much of an expense.  But maybe worth bringing your mask and regulator just in case.  

    Another thought is that you might try some of the FaceBook CH groups and just put out a request for whether there's anyone who lives in PR who might be willing to loan/rent you a tank, or can recommend a place to get one.

    (I don't expect much to come from this, but I sent a message to the Puerto Rico Tourism Company, asking about getting O2.  Many years ago, I actually worked for them, doing training at resort hotels on the island.)

    Story about a PR neurologist: https://www.latinoleadersmagazine.com/marchapril2022/2022/5/11/i-can-feel-your-pain-dr-franchesca-fiorito-headache-center-in-puerto-rico 

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