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Posts posted by CHfather

  1. D'K,

    What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached?  And very few people here have the clout with a doctor to get an off-brand prescription.  

    This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and/or attacked.  He put it out there, and some other people tried it, and it worked for them as it had for him. They really did have to "BELIEVE," to use your word, because it involved obtaining and consuming illegal, hallucinogenic substances.  Whatever you have to offer has much better odds of being tried and adopted than that did, if it works.  So, I say with no real disrespect, you either have to put up or shut up. That's how it works here.  I doubt that anyone is going to beg you.


  2. You can get overnight delivery on a non-rebreather mask from Amazon, I'm sure.  But that's a lot of $ for one day's use.  You can get masks without a prescription, so maybe you could find one at a medical supply store.  Some people have had success with O2-related things by asking at places that carry O2, so it's possible that a nearby firehouse, EMT station, hospital, walk-in clinic, etc., might give you one or sell you one. They probably pay about two bucks or less for them, so it's not a big deal if they're willing.

    I feel like I've read that some people in a pinch have actually sucked O2 from tubing attached to a regulator, without a mask.  I'm not recommending that, but maybe someone will chime in.  You'd need to get tubing that attaches to your regulator, of course.

    You should be splitting your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    Don't know if you need it but more about O2 here https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/  and in here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/


  3. You can start by trying to get an O2 prescription from a doctor and then having it filled by an oxygen supply company, or you can set up a system using welding oxygen.  If the first route is straightforward and affordable, it's probably the sensible way to go (if you have a competent doctor who will prescribe O2; and if you have insurance to pay for the doctor visit and the O2, or you can pay out of pocket for those things), but welding is simpler and ultimately no more expensive, particularly since you are probably going to pay for a higher-lpm regulator even if you get one from the medical O2 supplier. Welding O2 is discussed here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/   There's a lot about O2 here, plus some things aside from O2 that might help you until you get O2:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  4. Well, the original report, from authors at Harvard Medical School (at least that's where Halpern was, I don't know about Pope, and Sewall was either at Harvard or Yale then), was here: https://www.ncbi.nlm.nih.gov/pubmed/16801660.

    You could certainly argue that Yale would not mess with research into psilo and CH without a sound basis, and Yale Medical School is now leading a clinical trial into the effects of psilo on CH. https://clinicaltrials.gov/ct2/show/NCT02981173


  5. Andrew,

    Please read the post I linked you to.  You can fight with your insurance company for O2 and perhaps win -- many have -- or you can get a prescription and pay out of pocket for the O2 without insurance, or you can do as many do and set up a system using welding oxygen.  This study, from 10 years ago, met all the criteria for a medical test (randomized, double-blind, placebo-controlled) and showed the effectiveness of O2 for CH: https://jamanetwork.com/journals/jama/fullarticle/185035  Every medical resource about treatment of CH lists O2 as the #1 abortive, along with injected triptans.  In short, your insurance company is full of shit.  One way or another, YOU NEED O2. IT WILL CHANGE YOUR LIFE. 

    If you read the previous post I linked you to, you'll see that you can split Imitrex injections (if injections are what you have) and get full relief from much smaller doses.

    I don't know why prednisone stops attacks while you're taking it but doesn't end cycles, but that is the common experience.  If you're saying you weren't in cycle until after you took the pred, I also have no explanation for that.  Often it's used as a bridge to give verapamil time to get into your system. Usually it's administered for more than the few days you mention. 

    D3.  O2.  Compensatory strategies as discussed in that other post (e.g., energy shots; melatonin; Benadryl). You need to take control.  Not easy to do when you're suffering, but it's what is needed. 

  6. For sure, you're doing O2 all wrong (thanks in large part to your astonishingly misinformed doctor).  The idea is that you want to fill your lungs with O2 as quickly as possible , hold it in for a couple of moments, exhale as much as you can, and immediately fill them again, hold, exhale fully, repeat. In order to do that you need a flow rate that fills your the bag on your mask quickly when you start and that makes sure the bag is full as soon as you exhale, ready for you to inhale.   8 lpm won't do that for most people.  So you need a different regulator, which your O2 supplier should provide (just as the O2 supplier should have provided the mask, for heaven's sake).  You can buy your own regulator, but you have to be sure you're getting one that fits your tanks (different size tanks take different types of regulators).  In a different post I think you said your tank was "tall and skinny."  How tall?  I wish I knew how to insert an image here, so I could just ask you what your regulator looks like.  I would have guessed that you didn't actually have a tank, but a concentrator, a machine that makes O2 from room air, but I feel pretty sure you have mentioned a tank.

    There's a lot of info that might help you in this post:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   It includes a link to info about the D3 regimen.  I'd urge you to read that post and get back to us.

  7. FWIW, methylprednisolone is only slightly stronger than prednisone, about a 5/4 ratio.  Otherwise, it's the same thing.  So depending on the dosage, you might not be taking any more corticosteroid, or the same, or less than if you were prescribed plain old prednisone.  There was a time when there was some research on injections of methylprednisolone for CH, and that seemed to help, but the general conclusion was that it reduced attacks but wouldn't break a cycle in most cases.

    As the previous posters have said, a doctor that doesn't prescribe O2 just doesn't seem like a CH expert.  I hope you're doing the D3 regimen and taking steps to get O2.

  8. nick, I don't know whether there's anyone from Scotland here.  I think I vaguely remember a woman from Scotland at the Facebook page that is called "Cluster Headaches (Trigeminal Autonomic Cephalagia)."  There are some people here who are active at that FB page who might be able to tell you more.  I remember the name of the person I'm thinking of as something like Ainslie Course.   You should also look up the website for OUCH-UK.  It's my understanding that they can be very helpful, particularly for obtaining oxygen.  [I see jon' just posted about that.]

  9. Big', welcome to the forum.  You might get some direct replies to your question, but you might also get a broader sense of experiences and opinions by typing ketamine into the search bar at the top right side of any page.

    Are you doing the D3 regimen that has helped hundreds in big ways?  https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

    Considered busting? (click on blue banner at the top of the page) 

  10. Given your descriptions, you might consider looking at hemicrania continua (HC) as a possibility, which would involve finding out whether the drug Indomethacin takes the pain away.  https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page    It doesn't sound like you have used the standard CH abortives, oxygen and triptans.  If you did try oxygen properly and/or triptans (Imitrex; sumatriptan; etc.) in a proper form (nasal spray or injection), and they didn't work, that would strongly support an HC diagnosis.  Some people with CH have pretty constant pain in the form of "shadows," but I think that's pretty rare, even in people with chronic CH.  That verapamil didn't address your pain doesn't say much either, unless you took it in strong-enough doses over a long-enough period of time.  Prednisone usually at least stops CH pain for a while, but not always.  So that med history doesn't really tell us much, but it does again lend itself toward at least checking into HC.

  11. This video is good.  https://www.youtube.com/watch?v=PtFHRIQN17s

    He's using the special mask/bag called the "ClusterO2 Kit," which can be purchased, and he has a higher-flow regulator, but the technique is clear.  Some people start with quickly drinking an energy shot or some caffeine, which typically speeds aborts.  

    Deep out.  Deep in.  Hold.  Repeat.  Stay on for 5-10 minutes after you have aborted the attack. 

    Your mask might have one or two circles of open holes in it.  There might be one set of holes that has a gasket behind it, and one that are just open.  Put tape over the open holes, or cover them with your thumb as you inhale.

  12. yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people.  I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one.  There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Or some people get it in vials with syringes so they can measure out their own doses.  Sorry if this is old news to you, but thought it was worth mentioning.  Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.

  13. jimmy', your best bet is to type Emgality into the search bar at the top right of the page.  You'll see more responses that way.  I think they have been mixed: little or no success for some, good results for others.  Important to keep in mind that people for whom it worked probably are no longer here or might never have been here.

  14. 5 hours ago, spikeinthehead said:

    He is going to try to get a script for oxygen , hoping a general doctor may prescribe .  

    This is very unlikely.  Most general-practice docs don't prescribe oxygen, for unjustifiable reasons that we don't have to go into here.  Maybe he'll get lucky.  Ask the doctor to look up CH abortive treatments in whatever app s/he uses -- oxygen is listed #1. As spiny said, medical O2 without insurance is very expensive, and some medical oxygen suppliers won't give it to you without insurance, even with a prescription.  I know it's hard to appreciate how critical O2 is to his wellbeing and state of mind, but it can't be overstated.  Many, many people with CH describe it without much exaggeration as a lifesaver.  A welding O2-based system can be set up for under $200.  I won't push on this any more, but needed to say this.

  15. Batch is of course the person to be answering this.  You should probably PM him.  Quoting him from an earlier document that he might have updated since then: "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."  So it seems like by now you are probably above the average but likely still considerably below the maximum.  I realize that your actual question is probably whether it's okay to go back to a higher dosage, not whether a higher dosage might be helpful or needed.  Stupid me, I was probably answering the wrong question, but maybe that info will be slightly helpful for thinking about where you (probably) are.  Whether it's safe or wise to do more now, I guess I can't answer, but Batch can and will, for sure for sure.  

  16. Karen, he needs to get oxygen.  Without insurance, that probably means welding oxygen.  (He could get a prescription for medical O2 if he sees a doctor and then try to pay for it out of pocket.)  Here's info about the welding route: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/     O2 is really the highest priority, and he/you should move heaven and earth to make it happen.  A welding-based system can be created in a matter of a few days.

    If espresso helps, an energy shot such as 5-Hour Energy will be even better.  Much more caffeine in it, and some other ingredients that are believed to also help.

    The D3 regimen won't solve his problem right now, but he should start it right now.  The whole thing.

    If the sumatriptan was in pill form, then no, it's not gonna help.  Injectable sumatriptan, or the triptan nasal spray will usually stop attacks.

    He should consider ordering some rivea corymbose seeds for busting. Legal to buy and possess. This file includes basic information about busting (the reason this site exists) and a whole bunch of other non-busting stuff.  Throwing things at it like he's doing now is not a sound approach -- particularly considering the things that are being thrown.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    Bless you for being there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I am a supporter myself, so I have this advice -- Don't let him talk you out of doing whatever you are willing to do to change this situation.  Sometimes people with CH won't accept help in the way they should.  Lots of understandable reasons why that sometimes happens, not really worth discussing here.  You have to persist.  I'm not talking about during an attack -- you have to listen to what he wants then, agonizing though it is.  But in terms of getting what he needs, whether that's O2 or vitamins or even seeds, you don't need to have permission.  In my opinion.