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Everything posted by CHfather

  1. What have they prescribed for you? I hope you'll consider the D3 regimen, which they probably don't know about (but I suppose they might). https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  2. If lithium does affect the trip associated with a tryptamine, that probably wouldn't make the tryptamine more effective at treating CH, since the trip and the medicine effect of the tryptamine are two completely separate things. As with Denny, I only "know" about lithium interactions from what was written in the CB Files. I do know that lithium has helped some people. I know that from reading about it, seeing it first-hand, and from medical research. It is generally not recommended for people with episodic CH because the rebound attacks when stopping it can be quite severe. It has to be monitored closely because of possible side effects. I don't know how the other possible pharma preventives, such as gabapentin and topirimate, work with verap, but maybe they'd be worth considering. Maybe even trying the 25mg of Benadryl 4/day?? They all have side effects of their own, for sure, but maybe overall less than lithium, and a less burdensome than the lithium monitoring. Just checking -- are you taking the verap at least 8 hours apart from the calcium in the D3 regimen? Apparently that matters.
  3. Your friend can't get nearly enough D from foods. Batch's recommended minimum daily dose of D3 is 10,000IU. Your friend would have to eat between 5 and 10 pounds of salmon in a day to get 10,000IU (depending on whether the salmon is wild caught or farmed). More than ten pounds a day of fresh herring; more than 20 pounds of pickled herring. More than 6 tablespoons per day of cod liver oil. Pills are a lot easier. https://www.healthline.com/nutrition/9-foods-high-in-vitamin-d#1
  4. Not an expert, but I've looked into this a lot. It does "indicate" what you say, but it is not conclusive. People with other "headache" conditions sometimes get relief from oxygen. For example, a notable "headache" expert wrote some time ago (2007), " I have found approximately 50 percent of my patients with migraine headaches will be able to achieve some relief with oxygen therapy. They use 100 percent oxygen for eight to nine liters a minute for up to 30 minutes." https://headaches.org/2007/10/25/oxygen-therapy/ If that was true, would more people have better results with higher flows/better masks/etc??
  5. The clockwork regularity is a feature of CH that is not common to other "headaches," at least as far as I know. Of course, it is possible that you are doing something before 2:00 every afternoon that brings on a severe headache, but I don't know what that would be (eating food with MSG in it would be one possible example, though nothing really explains the severity). As jon' said, being able to lay still or go to sleep is very uncommon. "Restlessness" is in fact a diagnostic symptom of CH. Other CH symptoms include tears from the affected eye, redness in that eye, swelling in that eye and a drooping eyelid on that side. Also runny nose and pale skin. Without a different diagnosis, you of course need to treat it as CH. I have the feeling that maybe your Imitrex is a pill. If it is, it will be a very little value. As jon' says, Imitrex (sumatriptan) is meant as an abortive, to stop an attack, not as a preventive, to prevent an attack. If it is in pill form, however, you should almost treat it as a preventive, taking the pill about an hour before your expected attack, but, more importantly, (b) you should get the injectable form of Imitrex, which will stop your attack (if you have CH) when injected right at the start of an attack. In any event you can't "get it under control" with Imitrex. In fact, the more Imitrex you use, the more likely it is that you won't get it under control. Oxygen is a must! Insist on it, right away. I'm not sure what the "IV treatment" you refer to might be. There are some, but they're not usually used this early in the process. However, your doctor might have been referring to a steroid, typically prednisone, which when taken in sufficient doses can stop (temporarily) the pain of CH. It comes back, but you get some relief and time to organize your other treatments. Right now, you have no preventive (verapamil is often prescribed as a preventive, and many or most people here have found that the "vitamin D3 regimen" is a very effective preventive. They both take time to work. (There is more information about both verap and D3 in the document I refer you to in the next paragraph). You might try quickly drinking an "energy shot," such as 5-Hour Energy, at the first sign of an attack. For many people, but not all, that will reduce the severity of an attack and possibly even stop it. Strong caffeine helps some people. Some people get very good benefit from taking Benadryl, 25mg four times a day. There are many other suggestions, of varying value, in this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I would urge you to follow the links there. I'm sorry it's so long, but I wanted to get down most of what I could provide to someone in your situation. You asked, "How does oxygen help?" Not sure anyone knows the exact mechanism, but oxygen, properly set up and properly used, aborts attacks, typically in less than 15 minutes and often much more quickly than that. More info in that document I just mentioned.
  6. 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.)
  7. 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."
  8. 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.
  9. Because this subject appears in another post from today, I took the liberty of pasting the post above onto that thread, so that everything is in the same place. The longer thread is here: https://clusterbusters.org/forums/topic/5829-does-nasal-spray-work-for-you/
  10. 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.<<<<<
  11. 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!`
  12. 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.
  13. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  14. 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.
  15. 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 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.
  16. 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.
  17. Thank you very much for this thorough update, Siegfried!! And I am so happy that the Indo seems to have helped you!!!
  18. 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.
  19. Splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Bunch of things you might want to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ oxygen oxygen oxygen oxygen. Can't stress that enough.
  20. 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. 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). 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. 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.) 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. 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.
  21. I'm sorry the Indomethacin didn't work for you. Regarding SIBO, all I can say is yikes, and if that also happened to you, I'm sorry to hear that, too. https://www.ncbi.nlm.nih.gov/pubmed/28770351
  22. 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.
  23. Yes, although there can be an initial loading period when the D3 amounts are much higher. The other assorted vitamins/minerals are important. 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. Maybe this file might be worth reading in that regard (or maybe not). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  24. CHfather


    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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