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Posts posted by CHfather

  1. 8 hours ago, Ilya K said:

    Does [Batch] need to be tagged or something to respond?

    Send him a PM.  Click on the envelope icon at the top right of any page, and type Batch into the To line.  If he doesn't respond here, he will surely get back to you.  

    The pinned post is outdated, and now even the link to more recent information is out of date.  This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

  2. There's a lot of crazy, lazy doctoring in here, and plenty of excellent comments and advice from your CB friends.  

    As others have said (and I said at a different post of yours from today), sumatriptan pills are useless.  

    Indomethacin, just to repeat, is used to treat the CH "lookalike," hemicrania (continua/paroxysmal).  For all practical purposes, your doctor doesn't know which you have, CH or a hemicrania, so it's not theoretically unwise to prescribe indomethacin, which is a strong nonsteroidal anti-inflammatory.  Beyond the advice that kat' got, it should be taken with something that protects the stomach lining, typically a proton pump inhibitor such as Prevacid or Prilosec.  I haven't heard of headache as a common side effect of Indo, but it's a potent medicine so it's entirely possible that it afflicted kat' in that way.  Have only read of a few people who didn't find it hard to tolerate for the gut issues.  100mg/day of Indo is a pretty big initial dose, particularly in 50mg increments.  https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf  

    I can't say what I would do if I were in your situation, but I'm pretty sure I'd hold off on the Indo since you have that neuro appointment tomorrow..  If you get O2 fairly quickly, maybe you want to see how that helps, but I'd imagine Monday might be the soonest you'll get it if the neuro prescribes it.  Pray that the neuro knows what s/he is doing and gives a s**t, and ask for at least a triptan nasal spray in addition to the O2. If you get injections, you can split them from the 6mg injector to 2 or 3 mg doses (just ask and we'll tell you how). That's a lot less toxic and a lot less likely to cause significant rebounds.  Maybe you can get a prednisone taper (I don't fully remember your current status) to possibly hold off the pain for at least a few days until you get the O2.

    Have you read the suggestions in here for dealing with CH without the proper pharma prescriptions?  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Caffeine/energy shots usually help.  Ice water to the palate sometimes helps.  In one study, inhaling cold air from an air conditioning vent (home or car) was as effective as using a rudimentary O2 system. 

  3. 1 hour ago, Exigeous said:

    She did give me sumtriptan, which I took when this started so it's also possible that's helping.

    I'm gathering (as Trent suggested) that you might have triptan pills. Those really don't help, unless maybe your attacks are predictable enough that you can take the pills an hour or so before your attack.  Nasal spray might work, injections are pretty invariably effective.  Side effects vary.  As Trent is also indicating, oxygen is what you want.

  4. It's not uncommon that a PA is more helpful than the doc.  This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035  It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better.  All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1).  A commonly used app is UpToDate. You can ask the PA to look up CH.  An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask."  There are abbreviations in there when it's formally written, but that's the content.

    You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too).

    11 hours ago, Brain on fire said:

    If it turns out you have a different headache disorder (e.g. a hemicrania) oxygen won't work for it. @CHfather need your input

    So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania.  You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them.  As BOF says, oxygen is generally not effective against hemicranias.  There is, however, a pharma drug, Indomethacin, that is effective.  Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment.  (Indo is very hard on the gut, for most people.)

  5. Thank you again, Jack, for following up.  Your diligence is much appreciated.

    I know nothing about patents. As I've said, I have thought that some part of Harvard holds the BOL patent.  Wouldn't Dr. Halpern or someone else associated with Entheogen know the answer to this? I see that there's a 2017 patent application for a method of creating 2-Bromo-LSD that doesn't involve using LSD to make the 2-Bromo. http://appft1.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PG01&p=1&u=/netahtml/PTO/srchnum.html&r=1&f=G&l=50&s1=20180354940.PGNR.&OS=DN/20180354940&RS=DN/20180354940   But I have no idea whether the molecule itself is patented, or whether making it in this way circumvents the patent.

  6. 4 minutes ago, Newbie13 said:

    Question - how do I know if a cycle is ending? Because of the sinus diagnosis, I was on Prednisone twice for a few days at a time, and pain came back with a vengeance after the last dose each time. I'm nervous that the same thing will happen with this round.

    Cycles seem to end differently for everyone.  For some, there's an increase in severity/duration before a cycle ends, for others it's a more gradual tapering.  Unfortunately, it is likely that your attacks will return after the pred taper, unless your cycle has actually ended. Sometimes it does seem that the pred will end a cycle, but that seems rare (and there's no way to know in most cases whether it was ending in any event).  I would suggest starting on the D3 regimen as soon as possible. There is about an 80% likelihood that your D is too low just by normal medical standards, and a nearly 100% likelihood that it's too low to treat CH.

    Wonderful that you have such a capable and caring neuro!  

  7. Newbie13, from your reading you probably understand that the #1 thing you want from your neurologist is oxygen -- and you probably also have read about what a challenge it can sometimes (or often) be to get that prescription.  So you might do all you can before the appointment to make sure that will happen.  To me that would mean at least printing out the major research showing the effectiveness of oxygen so you can bring it with you, maybe calling the office to ask whether this doctor prescribes O2 for CH, and getting yourself psychologically ready to advocate for O2.  Maybe have someone come with you.

    You can get a sense of the landscape of pharma and non-pharma options from this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  8. 15 hours ago, kat_92 said:

    I find the non rebreather mask I was provided with super awkward to hold on my face

    If your face is small, you might require a pediatric size mask.  Or it's possible that it's the other way around, and you received pediatric masks instead of adult ones.  The ClusterO2 Kit that you will be ordering can be used as a breathing tube with no mask.  Preferences about mask/tube vary. 

  9. Be sure the open holes in the front of your mask are covered when you inhale.  With your thumb or with tape.  Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2.

    I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out.  The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs.  Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2.  You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help.  As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically.  Once you can tell that the O2 is taking effect, you might dial it all down a bit.  Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks. 

  10. kat', closer to four hours, I would think.  An M tank holds about 3500 liters.  3500/15 = ~230 minutes of O2.  But some people do find that when the tank gets lower in O2, the abort is less effective.  I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2.

    You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).

  11. You have to go to a medical oxygen supplier, which is not the same thing as a medical supply store.  Type "oxygen suppliers" and the place where you live into google.  Or look for Lincare, Praxair, Airgas, Linde, Apria . . . those are some common ones.  It's pretty common for doctors to fax an O2 prescription directly to a supplier. Does s/he not know any?  You could call neurologists, or hospitals, or assisted living places or nursing homes -- they all would have relationships with O2 suppliers.

    But if your doctor wrote your prescription for 5lpm, you are probably not going to get the tanks you need, because that is easily satisfied by a concentrator, which is pretty unsatisfactory for CH. 

    The national suppliers I listed above all have "industrial gas" divisions that will sell you welding O2.  Or google welding supplies and the place where you live.

    I think I have already linked you to these, but in case . . . .





  12. Until recently, I was under the impression that one required a prescription for a demand valve, but they sometimes could be bought on a kind of "black market" at EBay (where my daughter got hers).  Someone recently posted that they had bought one from some medical supplier.  Maybe there's a link in one of the two O2-related posts I reference above.  As I said above, there are good things to be said about demand valves just because they're so easy to use and, in my daughter's case at least, the mask she got is very comfortably cushy (hers involves pressing a button to release the O2 rather than triggering the release just by inhaling).  But overall I think it's hard to justify the cost or effectiveness over just getting a good welding regulator and the "O2ptimask," now called the "ClusterO2 Kit." 

  13. 3 minutes ago, Brain on fire said:

    A demand valve is oxygen on demand-breathe in (through the mouth) you breath oxygen (no mask required)

    No, I don't think so.  It has a mask.  I'm pretty sure my description in previous post is accurate.  I mean, maybe it could be a tube, but the definitional thing is that you have full oxygen on demand, either whenever you inhale or when you press a button. No bag to fill.

  14. I just wrote you a giant long response about how demand valve and regular mask work. They system rejected it and deleted it, and it's late for me to start again.  I'd suggest you read the part about oxygen in this and then ask any questions, but I'm sorry the other one is lost.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  (There is also something about shadows in there that might help you.)

    The basics.  A standard mask system works by filling a bag on your mask (a "reservoir bag") with O2. When you inhale, you are breathing O2 out of the bag. The speed at which the bag fills is determined by the lpm that your regulator lets out of the tank.  The higher the lpm, the faster the bag fills. But not everyone needs the bag to fill superfast.  All you want is that the bag is full whenever you are ready to inhale, using an effective breathing technique (something like deep inhale/hold/full exhale/repeat). The bag refills after you have breathed in the O2 and while you are holding/exhaling.  For some people, 15 lpm is enough to have the bag full each time you are ready to inhale; others need more lpm to accomplish that.  With a demand valve system, there is no bag, and the O2 is available when you inhale (or when you press a button). You also have to have a high-flow regulator with a special fitting, called a DISS fitting. Demand valve is a nice thing, but (a) expensive and (b) you'd have to convince me that it actually saves significant O2, since I figure that each time you inhale you are using the same amount of O2 as you would with a standard mask at a reasonable lpm.  

    As for your other question, yes you would use more O2 at 15lpm than at 5lpm, but you can't abort an attack at 5 lpm.  In any event, even if you could abort at 5lp, it's not three times as much at 15 because the abort would be much faster.



  15. 24 minutes ago, kat_92 said:

    you can buy a regulator that is 15 or 25 Lpn regardless of the flow rate the doctor prescribes? 

    Yes. Just be careful as you're buying.  Smaller medical tanks take one type of regulator (a CGA 870), but larger medical tanks and all welding tanks use a different type, CGA 540.  Then there are welding regulators, also CGA 540 but they are not sold by lpm.  They will support an lpm of at least 25, but you can set it for less. For more information about this, you could look at this file: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/


    CGA 870:  https://www.amazon.com/EverOne-Oxygen-Regulator-Litersper-Connection/dp/B07L9P7V55/ref=sr_1_3_sspa?crid=3ILK8Q00GFC82&keywords=cga+870+oxygen+regulator&qid=1569471449&s=gateway&sprefix=cga+870%2Caps%2C173&sr=8-3-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFFT0VSNlZVUEMzNUsmZW5jcnlwdGVkSWQ9QTAzNTQxNzczNTJPNDVGS1I3Q1A1JmVuY3J5cHRlZEFkSWQ9QTA2NDMyNzBaRzNTVjdBSjJJUlcmd2lkZ2V0TmFtZT1zcF9hdGYmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl

    Medical CGA 540 (looks like this--this one is NOT 25 lpm):  https://www.amazon.com/Medline-Valued-Oxygen-Regulator-Connector/dp/B00BLQKI86/ref=sr_1_fkmr0_1?keywords=cga+540+medical+oxygen+regulator+25&qid=1569471751&s=gateway&sr=8-1-fkmr0

    Welding CGA 540: https://www.amazon.com/Welding-Gas-Welder-Regulator-cutting/dp/B00JJGL7LW/ref=sr_1_1_sspa?keywords=cga+540+oxygen+regulator+25&qid=1569471616&s=gateway&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzMk9DN1ZWVUNCMVlQJmVuY3J5cHRlZElkPUEwMjU0NzQwMVEzMjhSR09LMjlFJmVuY3J5cHRlZEFkSWQ9QTA0ODE0MjExNDRBRUxJMUxJQUZDJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==


  16. 51 minutes ago, CHChris said:

    Another thought would be to get a smaller tank and carry it around using a dolly.  125 cubic foot tanks can be fairly heavy, but with a dolly it is a breeze to move them. 

    I think most people would still need help getting a 120 cu ft tank into and out of a vehicle.  We have found that multiple smaller tanks (for example, three 40 cu ft tanks instead of one 120 cu ft tank) is more expensive but completely manageable.  Or two 60s, maybe.  One can get rolling carts/dollies that will hold two 60s.

  17. 4 hours ago, clovis fick said:

    The length and pain are diminishing, so when i feel something i hit it for 15 minutes and good to go.

    clovis', if I'm remembering correctly, you're using a very low flow rate.  The bigger of the two small tanks (an e tank) holds 660 liters (just because of how cheap it is, I suspect that you have a d tank, which holds 425 liters).  So, with an e tank you could have 60 minutes (4 15-minute sessions) only at about 10 lpm, and with a d tank only at about  7 lpm.  I'm not questioning what you are saying, but only making sure that people reading this know it is very suboptimal.

  18. 12 hours ago, LKD06 said:

    tIthe significance of this question is that I do not want to prolong a cycle because I am not taking medication

    Ah. Thank you. Regarding pharmaceutical meds, you might have a longer cycle if you're not taking a preventive, which typically would be verapamil.  But it usually takes verapamil at least a couple of weeks to take effect.  Steroids seem to stop cycles for some people, but for most (I would say) they just provide temporary relief (often buying some time for the verap to take effect).  I don't think that you are prolonging your cycle by not using pharma abortives.  Regarding non-pharma things, you almost definitely will have a shorter cycle if you have been using the full D3 regimen, though starting it during a cycle might not make a major difference for that particular cycle.  Busting of course would probably shorten your cycle.

    12 hours ago, LKD06 said:

    It has been a long time since I have not taken meds and I dont remember how long my cycle lasted.

    I'm not sure the length of a cycle some years ago would tell you much as a comparison, since cycles morph so much over time.

    12 hours ago, LKD06 said:

    they are small oxygen tanks that I buy at the pharmacy

    This is puzzling to me.  Do you mean actual cylinders with oxygen in them, which you use with a regulator and a mask, or are you talking about those cans with a couple of liters of oxygen in them that you just spray directly into your mouth?  Or something else?  I'm just curious about this.