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CHfather

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Posts posted by CHfather


  1. Finance,
    Batch is the man for the D3 regimen, so I can only partially answer your questions.  He'll be here soon, I'm pretty sure, or you can send him a PM (click on the envelope icon at the top of any page and then type Batch into the "To" line). He is amazing at responding to questions, here and by PM.  Plus, you can type either "Batch" or some key words ("Kirkland," for example, as I mention below) into the search bar at the top of each page and get virtually all the information you might need, though it's a lot to read through.

    So . . . 

    1. Verapamil comes into two versions, "standard" ("immediate") release and extended release.  The extended release form is, for some reason, generally ineffective.  (BTW, docs will sometimes prescribe a course of steroids, such as prednisone, to quell your pain while the verap is getting into your system. A few fans of verap here, but many are unhappy with the side effects and not thrilled with the preventive effects. Doses that are quite high (even up above 1000mg/day are sometimes needed for it to be effective.)

    2. I think some of these co-factors are good in themselves, but they also combat the side effects.

    3. You have to take a whole lot of D3 over an extended period of months to get D toxicity, and the effects are reversed when you stop taking it. But Batch is insistent that the co-factors do what is needed to prevent hypercalcemia, and I don't think he's seen a situation where that developed as he has been in touch with several hundred people taking the regimen.  I can say I know of one person who thought she could slide by on less than the full regimen and did become hypercalcemic.  The symptoms are quite evident if you have them.

    4. You can get most of the supplements, including fish oil, in large enough doses to reduce your pill intake. Batch gets many of his from COSTCO's store brand, Kirkland.  Batch is now taking a 50,000IU D3 pill (not Kirkland Brand) every x days (I don't remember if it's every 5 days or more days than that).  

    5. If Batch says that, I assume that it is correct.  I think Batch would also advise you to take Benadryl at 25mg several times a day. That has helped a lot of people.

    6. (You don't have a 6. I'm just using this to say again, GET THAT OXYGEN. Your doctor, of course, should have prescribed it. I am assuming that s/he was more comfortable with the sumatriptan because it's the kind of thing s/he typically prescribes . . . but O2 is the winner here, and the Imitrex should only be used for breakthrough attacks, if they occur. You can also get sumatriptan in vials, so you can measure out your own doses, and some people do fine with the triptan nasal spray. Please be sure to read that "basic non-busting info" file that I linked you to -- one or two things there (such as energy shots and melatonin) can help you quite a bit.)

     

     


  2. 40 minutes ago, Brain on fire said:

    Thanks for the correction @CHfather I need to remind myself it is being updated and not to refer folks to the basic non-busting info until that is updated.

    The "basic non-busting info" file has updated info about where to see the D3 file.  But the blue "New Users ..." banner that you referred to has only basic busting info.  No D3 info; no "non-busting info."


  3. The link to the D3 regimen is here: https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people.  You won't find it at the blue"New Users..." banner, but you should read the info at that banner in any event.

    Batch will reply to you, I'm sure, but (a) no matter how much sun you get, your D level is almost certainly low -- if not low by medical standards (which it probably is), surely low by the standard of what is needed to combat CH.  I'd urge you to take the 10,000IU.  You'll probably be taking more than that soon. You have to take all the "co-factors" (the other supplements) to prevent side effects.  Take the calcium 8 hours apart from your verapamil.

    120 mg verapamil won't have any effect, but maybe your doctor is being cautious and will increase your dose over time with some monitoring of your heart.  (You won't need it or want it after the D3 regimen has kicked in.)  The verap should be standard release, not extended release.  If you're going to use the Imitrex, you really should be splitting your injections.  Most people only need 2mg, not the 6mg that is in the autoinjector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/    I don't know what "working on getting oxygen" means, but good for you for doing that!!!  O2 is the life-changer.  D3 and busting are life-changers, too.  You might want to read through this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Several suggestions there for getting by without O2.  Take a look at the "Triggers" file over in the ClusterBuster Files section, too.

     


  4. I have taken the liberty of pasting Matt's original, longer post here.  Quite a coincidence that two people show up on the same day with this idea that is new to me (but maybe not to people who have been around longer than I have been), but I'm anxious to see where it goes.

    >>>>>BEFORE YOU READ I AM NOT A MEDICAL PROFESSIONAL PLEASE SPEAK WITH YOUR GP BEFORE TRYING ANY TREATMENT OR MEDICATION!!!

    Hi everyone I have had cluster headaches for more than a decade.  And for all of this time I have been searching for new drugs to abort my cluster headaches.

     The drug has to meet certain criteria, it needs to be fast acting, discrete, cheap, easily available and constrict blood vessels ideally by acting as an agonist to the same serotonin receptor types as sumatriptan (5-HT1B and 5-HT1D).

    So, after years of searching I have come up with Oxymetazoline, an over the  counter decongestant nasal spray.

    This drug meets all of the above criteria.
    Importantly it works as a full and potent agonist of type 5-HT1B and 5-HT1D receptors. 
    www.sciencedirect.com/science/article/pii/001429999190432P

     I have been testing on myself for the last 3 years with good results.

    I abort at least 7/10 attacks with oxymetazoline alone.

    When oxymetazoline fails I use oxygen and it quickly finishes the attack off.

    For me, the combination of oxymetazoline and oxygen has proven itself to be a near unstoppable way of dealing with the beast (far more effective than oxygen alone).

     

    I would like to  mention that rebound congestion is an issue that I have raised with my GP and have been prescribed a weak steroid nasal spray to combat this.

    I have not used sumatriptan except when abroad for more than a year.

    Since I have substituted sumatriptan for oxymetazoline I have had no drop in frequency of attacks and nasal congestion will almost always progresses to a cluster headache if not treated so I can't rule out rebound headaches as a possibility.

    However,

    I have had phenomenal success with my current strategy of viewing congestion (rebound or otherwise) as an early warning sign of an attack and treating with oxymetazoline.

    This will sound disgusting but this is how I use oxymetazoline.

    At the first sign of an attack (congestion) I administer two metered spray doses to each nostril.

    As soon as my airways open up I can always pull an extreme amount of mucus from my nose and sinuses into my throat I spit this out if I can but have to swallow if not. 

    Every time I pull some mucus back it's like the pressure and pain decreases slightly. 

    I keep breathing and pulling mucus away from my sinuses until the attack stops.

    Because of the current success I have been having with oxymetazoline and pulling mucus, my personal leading theory is as follows:

    Often humans over complicate things and more often than not the answer is simple.

    So,

    I believe Cerebral blood vessels dilate causing a pressure pocket inside the sinus cavity, this then fills up with air and mucus inflating inside the head like a balloon, this gets so big that it starts to put pressure on nerve bundles thus causing the severe pain associated with the condition. (Just a laugh, dont destroy me lol)

    Just to clarify to everyone this post is not a recommendation to try any drug before speaking to a medical professional.

    I have not read about this anywhere else and I am interested to see if anyone else has been down this rabbit hole.

    If not, I hope this helps someone.<<<<<


  5. 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!`


  6. 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.


  7. 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.


  8. 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.

     

     


  9. 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.  


  10. 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.


  11. 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.


  12. 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.


  13. 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/


  14. 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!)


  15. 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.


  16. 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.


  17. 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.

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