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Posts posted by CHfather

  1. 1 hour ago, kat_92 said:

    They are all $78 no matter what size

    I'm kinda ignorant about the variables on the financial side here.  When we had medical O2 (before switching to welding), we paid a flat monthly fee.  Is your cost $78/month, or $78 for each full tank?  Or was there a higher charge for the tank initially and the $78 is for refills (replacement)?  You got only the tank and bought your own regulator and mask?  Do you get the same service as a customer gets who goes through insurance--prompt deliveries on request?

    Thank you!`

  2. 1 hour ago, Jost said:

    How are people getting oxygen? The doctors around here are squeamish about prescribing it. Why is that?

    If they just look in whatever resource they use for prescribing, they will see that oxygen is listed as the #1 abortive (along with injectable sumatriptan). So either they don't care enough to look, or if they do look, their squeamishness is probably the result of not having CH patients and therefore either (a) not knowing how to prescribe it, and/or (b) never having had a patient who used high-flow O2 and not having any idea about how it is used, what could go wrong, etc.  That is, either they don't really care or they are protecting their own ignorance at your expense.  Maybe there are other explanations, but I haven't been able to think of them.  I think the BS they sometimes pass on -- "I could prescribe it but why bother since your insurance won't cover it anyway?" -- is just part of that self-protection.

  3. You understand of course that I'm not a doctor, so this is just my two cents.  It does make the heart race. What I've read is pretty consistent with this quote: "If hyperventilation persists for a long enough period of time, the affected person can develop a temporary tetany, secondary to the changes in calcium. This state is manifested first by tingling in the fingers and lips and then by contractions of the hands and wrists. Finally, a wobbly feeling may appear. This complicated phenomenon is scary, but is reversible and not dangerous." (https://www.psychologytoday.com/us/blog/fighting-fear/201206/hyperventilation-and-hyper-hyperventilation)  You might get as far as the tingling part -- Batch recommends it -- but I suspect that because it's a very controlled and limited hyperventilation in the case of Batch's recommended approach -- 30 seconds of room-air hyperventilation in ten three-second cycles followed by 30 seconds of holding in inhaled O2; repeat -- there isn't the risk associated with uncontrolled hyperventilation.  I also suspect that Batch wouldn't recommend  anything dangerous.

    While Batch is quite insistent about the positive effects of hyperventilation, and it of course makes complete sense that the clearer your lungs are of room air the faster you'll abort (plus there's something involved related to CO2 that I really don't understand), I think that most people use some kind of modified version of this, expelling as much room air and inhaling as much O2 as possible, and they are generally satisfied with the result they get from that.

  4. 3 hours ago, xBoss said:

    1. How do I use it? Like do you just keep breathing it until you feel better? I was always scared that I would hyperventilate or something.

    Review of what the others said and some additional thoughts here.

    Hyperventilating is actually good when you're trying to do it.  In general, you will get good results if you exhale deeply before your first inhale of O2 (having drank down an energy shot or some caffeine before you begin), then inhale as deep as you can, hold it for a few beats, and then fully exhale, forcefully, with a "crunch" if you can to get as much as possible out of your lungs.  You can stay on it as long as you need to, plus 5-10 minutes after the attack has been aborted to hold off future attacks).  You'll get the hang of it quickly, and develop your own approach.  Some people will turn down the flow rate and breathe more naturally in later stages.  When you feel better you can read more about hyperventilating here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/  

    Tips: Look down toward your feet as you do the O2.  This helps.  If you have a standard non-rebreather mask, there will probably be an open circle of holes on one side of it (usually, one side has a gasket and one is open). Put your thumb over that circle when you inhale, or cover it with tape.  You don't want any room air mixing with the O2 as you inhale.  For the same reason, make sure you hold the mask firmly to your face -- don't use the strap.

    The mask made for CH is very highly regarded:  http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

    3 hours ago, xBoss said:

    2. Are high flow valves available or do I have to mod one? I am handy and can do it, just need tips.

    You only need a higher flow rate if you have to wait for the bag on your mask to refill while you are using the best breathing strategy.  If you can do what I said above and the bag is full after your full exhale, you're good.  Yes, you can buy higher-flow regs, but as Rod' said, different size tanks take different size regulators.  The two types are CGA870 for smaller medical tanks and CGA540 for larger medical tanks and all welding tanks.  If you go to amazon and type cga 870 into the search bar, you'll see what those look like, and can compare to what you have.  Check with us before you buy.



    • Like 1

  5. As I understand it, Ubrelvy is being marketed as a migraine abortive.  I might have missed it, but I haven't seen anything about Ubrelvy for CH.  It seems to slow-acting to me (it's a pill).  The others are preventives.  They all address calcitonin gene-related peptides (CGRP), but in different ways.  As I understand it, for example, the abortives are going to be small-molecule concoctions, whereas the preventives are large molecules.  Also, they are administered in different ways.  Most are injected, but Ubrelvy is a tablet.  This article covers the bases: https://www.practicalpainmanagement.com/pain/headache/new-frontier-migraine-management-inside-cgrp-inhibitors-migraine-prevention  A competitor to Ubrelvy is supposed to be introduced this year.  

    Emgality results of people reporting here seem to be mixed, but I wouldn't take that to mean anything broader.  

  6. I'm sorry I don't have more to offer you. It sounds like you have been sensible about what you have chosen, given all the factors you have described.  I'm going to quibble with you about two things, if only for future reference in case the dike springs a leak.  If you do the D3 regimen while everything else you're doing to treat your CH is the same, and you feel that your situation has improved, you can at least tentatively attribute the improvement to the D3, and begin seeing what happens if you reduce some of the other meds.  It's not the best situation to be in to play with something that is working, but over the longer run it will be greatly beneficial to you if a more natural, less damaging approach such as D3 works as well as the pharmaceuticals you are using. (I do understand that the "long run" isn't very interesting when you're risking severe attacks right now, so I'm only offering this perspective.)  

    (It's a strange thing about CH. I was talking just the other day with a fellow who was in remission for a couple of years, which he attributed to the 1200mg of verapamil he was taking every day.  At some point, a doctor told him it was going to be very bad for him to keep taking that much verapamil, so he started to lower his doses.  As he lowered them, the attacks didn't come back.  He's been off all verapamil for several years now, and still hasn't had an attack (full disclosure: he does have shadows every day). I am not saying at all that anything like that could be the case for you. I am just saying how much we don't know about what is actually helping and what isn't.)

    Second, I have no desire to convince you to use any substances you don't want to use, but I don't think we've seen anyone here whose life has been taken over by psilocybin and other substances used to treat CH, in the way that addicts' lives can be taken over by "hard" drugs. If you were some day to try this, a substance like rivea corymbosa seeds can treat CH without even giving you any kind of "trip."  Since you live in a place where some recreational drugs are legal, you might have seen more "hard cases" associated with psilocybin than I imagine there are . . . and of course the leap of faith to stop the triptans and try "busting" would have to be enormous for you. For some, it has been a "leap of desperation" more than a "leap of faith," and I hope you don't ever get to that desperation point.

    (I guess this is a question regarding O2. I'm sure you have thought of this, but I just want to make sure it's said.  As a big strong guy, you might well have very large lung capacity.  If you are using a proper breathing technique, perhaps even hyperventilating, I can imagine that you sometimes have to wait for the bag on your mask to refill before you can take another full, deep breath.  Really, that is the standard for flow rate -- can you use the best possible breathing technique without having to slow down or modify that technique because there isn't enough flow to the bag. If this is an issue for you, then you would want a flow rate even higher than 25 lpm.  We have seen some highly fit people need flow rates of 40 and even higher to keep up with their lung capacity.  A demand valve system is particularly valuable in a situation like that.)

    My best wishes to you.  My father came to the US from the Netherlands when he was a boy, and Dutch, not English, was the language spoken in his home here in the US.  I'm sorry to say I never learned any, but I do still feel an affinity toward folks from my ancestral home.

    • Like 1

  7. 6 hours ago, Cast Iron said:

    But there are two things: a long time ago I swore to myself never to take any alcohol and drugs, and, my neurologist says that compared to others in his patient group I am in the ‘premier league’ of CH suffers where meds are the only viable option.

    As jon' says, what you choose is what you choose, but many of the people who have benefited from busting have been in that premier league of sufferers. The idea that "meds are the only viable option" for you is both silly and true.  Psilocybin, LSD, and LSA used to treat CH are "meds" in the same way that what you are taking are meds -- except that psilo etc. in effect have none of the side effects that you are very reasonably concerned about.  Psilo will be an official "med" within a few years, you can bet on it.  The D3 regimen, which is supplements but not "meds,"  has helped people who are in that same premier league as you, and who are actually chronic as opposed to be said by their doctors to be chronic.

    Overall, I think you are putting much too much reliance on things your doctor says and beliefs that you have adopted.  As jon' says (or suggests), your doctor is letting you kill yourself with triptans, and overuse of triptans is shown to make attacks worse and cycles longer.  I think you might be in a  situation where what you think is helping you is actually making things worse, causing you to then use more of it and continue the cycle.

    6 hours ago, Cast Iron said:

    although I only have one big cluster a year, my neurologist considers me to be chronic.

    This also doesn't make sense, at least to my way of thinking.  Chronic is chronic.  If you have time off from attacks, you're not chronic. It doesn't really matter for treatment purposes (except, for example, that lithium is usually recommended to be prescribed only to chronic patients because the rebound attacks if you stop taking it are so severe). 

    6 hours ago, Cast Iron said:

    In the weeks I am at my peak, I use 60mg prednisolon daily for 5 days in addition trying to lower the number and severity. This gives some avail in those 5 days, but the effect is gone in the days I have to slowly reduce it to zero again. I read that others here are using prednisone too, my neurologist says there is a difference between prednisone and prednisolon, the last one being quicker and more effective.

    Prednisolone is what prednisone is metabolized to by the liver.  The dosage and duration you're taking of prednisolone are essentially the same as they would be with prednisone, and the effects seem to be about the same. Prednisolone is generally more expense.

    6 hours ago, Cast Iron said:

    I read that redbull is sometimes used for its sugar and taurine, but this has an opposite effect on me.  

    It's primarily the caffeine in RedBull that seems to be beneficial for aborting or reducing a CH attack.  Many people use sugar-free versions of energy drinks with good effects.  But if RedBull increases the severity of your attacks, then it's clearly not for you. (It's very unusual for that to happen.)

    6 hours ago, Cast Iron said:

    When O2 is just not enough anymore I am entering into the medium and large attacks, kip 5-9.

    I have to wonder whether your O2 system is optimized.  Do you have a flow rate of up to 25 litres per minute?  Are you using an effective mask? (at the least, a non-rebreather mask, but better would be the mask specifically designed for people with CH).  Is it O2 from a cylinder or tank (not from a "concentrator")?  Are you breathing deep, holding, and then expelling all the air you can from your lungs?  Fully effective O2 is the key to better treatment of your condition, in my opinion.

    6 hours ago, Cast Iron said:

    720mg Verapamil, 3mg Sandomigran and 2.5mg Naratriptan

    Sandomigran is indeed a somewhat effective preventive, but it's low on the list of recommended prescriptions because of the side effects.  You probably arrived at all this by trying a lot of things that didn't work, so, again, if it's what you choose, it's what you choose, and we can all hope that the dike will hold for you.  I'll say again that if you can get your O2 working better, you'll have the option to consider alternatives to this and all those (other) triptans you are using, and I think that might be a good thing.

    • Like 1

  8. 1 hour ago, MRUPE said:

    The same can be said for melatonin. Correlation to cluster headaches but little research suggesting supplementing is effective. 

    Well, I don't know what your high standards would call for regarding melatonin, but here's report of a randomized placebo-controlled study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5012937/"In a randomized placebo-controlled trial consisting predominantly of episodic cluster headache patients (18/20 with episodic, 2/20 with chronic), melatonin 10 mg orally, when introduced early in a cluster period, i.e. 2nd to 10th day, was superior to placebo at decreasing cluster attack frequency."  Some other references in there as well.  No adverse side effects reported.  Worth trying? Up to you.

    Regarding the D3 . . . more or less what Denny said.  Do it; don't do it; up to you.

  9. 15 minutes ago, MRUPE said:

    From what I’ve read it appears to be 10,000IU/daily with an addition of other assorted vitamins/minerals. 
    am I correct in my interpretation?

    Yes, although there can be an initial loading period when the D3 amounts are much higher.  The other assorted vitamins/minerals are important.


    17 minutes ago, MRUPE said:

    The resources were a bit lengthy and not made up of high quality evidence from a research methods perspective.

    You are correct. No formal control group, placebo, etc.  The anecdotal evidence from more than a hundred users is, however, extremely compelling, and what research there is is very nicely done.  

    1 hour ago, MRUPE said:

    Hope to learn a thing or two here. 

    Maybe this file might be worth reading in that regard (or maybe not).  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  10. When the great tommyd created the first Clusterbuster Files entries back in 2010, he wrote that there was an "ongoing debate" about whether the taurine has an effect, or whether it's just the caffeine that is impacting the attacks (or shadows).  I don't think that debate has been resolved, since some people get good results from caffeine alone, and I'm pretty sure that the V-8 energy drinks that some people prefer don't have taurine in them. Some people even think it's the niacin in those drinks that helps, more than the taurine.  So if by "just a taurine supplement" you mean taurine alone, without caffeine, I suspect -- but can't say for sure -- that it would be ineffective.  I know that some people have taken taurine pills and caffeine pills, but don't ask me why, or how helpful it was.

    (I'm guessing that the reason that the Red Bull doesn't make you shaky is that the 8 oz. version has roughly the same amount of caffeine as a cup of coffee, about 80mg. A 5-Hour Energy shot has 215mg of caffeine!)

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  11. Scott -- Sorry that's happening and really unable to answer you main question.  I did want to mention that when oxygen level in a tank gets lower, it can become ineffective unless you increase the flow rate (or change to a new tank).  Just thinking that might be a reason why your O2 isn't helping you right now.  Hope it might help.

  12. B'T', I will recommend that you look this over.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  It has some links (such as to the D3 regimen) and some ideas about things you can do (such as energy shots and Benadryl) while you're acquiring what you need -- oxygen being, indeed, as kat' said. foremost among those things.  The basic info about busting is also there (same as what you would see under the blue "New Users ..." banner at the top of each page).

    The new medication, Emgality, has helped some people, so when you get a doctor appointment, you might ask to try that.  Regarding doctors, most here have found that doctors at headache centers are much better at prescribing that other doctors, including general neurologists.

  13. Short answer to your question is probably not, since it's pretty much a myth that turkey is full of tryptophan. There's just as much in chicken or beef, and more in nuts and cheeses.  

    However, tryptophan is much studied in relationship to CH, in part because tryptophan levels are higher than normal with people who have CH. You can find lots of studies by googling [tryptophan cluster headache]. Here's a recent one: https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-016-0620-2   Most of them are way too complex for me.  For some reason (I think because tryptophan affects serotonin), back in the day people took tryptophan pills or tryptophan precursor pills to try to prevent CH attacks. From what I have read about that, they had no real effect.

    Turkey wasn't listed in the "Triggers" document in the Files section here, or in the follow-up posts.  All that doesn't mean you're not onto something. It could be that turkey affects you in that way, but also, maybe there's something you typically eat when you have turkey that is affecting you. For example, stuffing mix might have a lot of MSG in it, or fried onions (as many people put on "festive" dishes) can be full of MSG, as can the chicken broth or soups that some people use at special times of the year.  MSG is a trigger for many.  Or it might be one of the other food triggers listed in that post.

    (Small related personal story. I suffered really brutal attacks of pancreatitis with no recognized cause. They would come, stay for anywhere from a day to several weeks, and then go away.  That went on for many years.  One night I got an attack after having eaten some very bland Chinese food. I realized it wasn't spicy food . . . and that's when I could track back over the course of all those years to see that it was MSG that had been causing those attacks. Very unusual, but not unheard-of.  The worst part for me was that after the first really bad attack, the doctor gave me the wise advice to go on a diet of clear liquids. So I ate canned chicken soup, and every time I did, I got an awful attack. Many canned chicken soups, like the ones I was eating, are full of MSG.)  So keep looking.

  14. 1 hour ago, EyecePick said:

    the actual dx doesn't matter so much as long as I can find some sort of relief! The intranasal DHE is suiting much better than SQ sumatriptan shockingly

    Yep.  Glad to see that about the DHE!  I've read people here talking about good results from DHE infusions, but know nothing about that.

  15. 1 hour ago, EyecePick said:

    225mg/day seems to be out of the spectrum of most resources I've found regarding doses

    I've seen a few saying 75mg 3/day (225/day total) would be the high dose.


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  16. Hoping you are getting closer to success, Siegfried.  I have wondered why Indo, but not other anti-inflammatories, is the best treatment for hemicranias.  Found this today, which partly resolves my curiosity about that: "Indomethacin is one of the cyclooxygenase 1 inhibitors with the highest penetration rate in the blood-brain barrier.1 Indomethacin, but not other NSAIDs (ie, naproxen and ibuprofen), was found to inhibit nitrous oxide-dependent vasodilation. Other medications that could be considered for HC include topiramate, lamotrigine, naproxen, lithium, onabotulinumtoxinA, and melatonin."  It's from a good recent article with good additional references: https://www.clinicalpainadvisor.com/home/topics/migraine-headache/hemicrania-continua-diagnosis-and-treatment/  (Melatonin is frequently mentioned in the literature as having a structure very similar to Indomethacin.)

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  17. @EyecePick, thanks for letting us know.  I sure hope this helps you.  Same to you @Siegfried. I would add that while it is indeed very unusual for headache to respond to both triptans and indomethacin, it might not be completely unheard of.  Table 1 here shows that a small percentage of people with PH did respond to triptans, at least to some extent: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5519518/  Can't say that those people also responded to Indocin, but the fact that some hemicrania patients responded to sumatriptan as an abortive, and one achieved full relief, at least seems to mean that it's not impossible.  And there is this one reported case of a woman who was thought to have CH and sumatriptan injections stopped her attacks within 15 minutes, but then it was realized that she had CPH and Indocin virtually eliminated her pain. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170242/   With all the complexities of diagnosis and  treatment in this area, I'm disinclined to hold to any absolutes. 

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