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Everything posted by CHfather

  1. I've got a lot to say to you, Titan, but I think most of it is in here, and I'm urging you to read it with some attention, even though it's long. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ One important thing you will see in there is that you can open up your Imitrex injector and get 3 shots instead of one. Here's a direct link to that info. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Are you in the US? Because here, Imitrex is very expensive and most prescriptions are very limited, and it's hard to see how you'd be using so much. Yes, the theory is that Imitrex is for attacks that are not handled by oxygen -- taking too much of a triptan (Imitrex is sumatriptan) is bad for you and can not only extend your cycle but cause severe rebound attacks (triptan overuse attacks). Given my misgivings about your doctor, I have some fear that your oxygen setup might not be correct. You should have a tank or cylinder, a regulator, and a non-rebreather mask. (Much more detail in the post I linked you to.) I also want to note, not as a putdown but just for clarification, that there really is not such a thing as a "cluster migraine." Two different things, cluster headaches (CH) and migraines (although some medications, such as Imitrex, work for both). A small number of people have both, and for an even smaller number, a CH attack is always preceded by a migraine attack. If a doctor in the US said you have "cluster migraine," I would be very wary of that doctor. It seems more commonly used in other places, such as the UK (but it's still wrong).
  2. A small PS. I remember seeing a video about O2 use in which the guy was saying that the way that the Optimask/ClusterO2 Kit is built, when using high flows some O2 tends to leak from the back of the tube that the mask is attached to. As I remember it, he put his palm over that end of the tube while using it. That video is pretty old now, so it could be that that minor flaw has now been corrected.
  3. I'm gonna wonder whether maybe that built-in regulator might not take a DV. Verging into territory I don't know very well, it's my understanding that a DV requires a particular kind of valve on the regulator (a DISS valve). You would want to be sure you have that. Since a couple of clicks on your photo gives a very close-up view of the tank, maybe @Racer1_NC, or @xxx, or someone else can tell whether you have it. I was composing a brief discussion of how much O2 a DV actually saves, but in your case I can see that avoiding the fumbling and the waste would be great. Is this the only kind of "industrial" O2 tank you can get in Canada, or just what you wound up with? In the US, tanks can be obtained without a regulator and then you use your own. No idea about Canada, but generally in the US you need a prescription to get a DV. Sometimes they are sold on eBay. There seem to be some there now (type oxygen demand valve into the eBay search bar). There have been some people here who have described other ways to get them (type demand valve into the search bar at the top of any page at this site and you'll see them, and you'll also see a lot of potentially useful discussion about DVs). As you'll see, they're not inexpensive, and so part of the question for me has been whether if just conserving O2 is the goal, what's the cost of any "wasted" O2 vs the cost of the DV (and, potentially, the cost of a reg with a DISS valve). The savings from conserved O2 might not be as much in most cases (not necessarily yours) as buying and another big tank and refilling it a few times. Any chance that you could set the reg low enough that the bag fills slowly (but fast enough) while you're hyperventilating that you don't have to do the on/off switch? Or maybe xxx's "redneck bag" would be a reasonable solution for you in some circumstances?? https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/
  4. Thank you all. She is going to try smaller meals and water before/after. She's very diligent about all CH-related things except staying hydrated. She's currently doing as much of Batch's "Fully Monty" as she can stand. Quercetin makes her very tired, so I think she would only include Benadryl out of complete desperation. Tough to answer this, since she doesn't have much of a "usual." Some cycles are very rough, and others not so bad. Used to have summer cycles, but it's been spring and fall for many years, so this cycle in itself is a little weird. For her, cycles usually start out with attacks that occur at erratic times but then settle into a pattern. This one just started about ten days ago. Again, thank you all.
  5. My daughter is getting attacks after eating, in addition to regular nighttime attacks. This never has happened to her before. She's very careful about not eating trigger foods. Any experiences or thoughts?????????
  6. You mean the floater seeds, right?
  7. OMG. So sorry!!!!!! Know our thoughts are with you.
  8. Wishing you the best. Please do report, partly because we'd love to hear that you are doing better, and partly because every report makes a big contribution to our knowledge base.
  9. My suggestions . . . . If you can, I would start with oxygen. If it works, you have a good, side-effect-free way of stopping your bad attacks, and you also have a pretty reliable indicator that what you have is CH. (O2 will sometimes help people with migraine or HC, but usually doesn't.) Sometimes you have to give O2 a couple of tries, but you should be able to tell pretty quickly whether it's helping. You can still use your triptan if O2 doesn't work, and you can request a more effective triptan (injected or nasal) to stop attacks more quickly. You can also start the D3 regimen, since it isn't contraindicated with other things. If your doctor is willing to support your discovery process, you could do an Indomethacin test at the same time as O2 and D3. Since Indo is a preventive for HC (and some other "atypical" pain syndromes), it's not going to effect what you learn from using the O2 as an abortive, and its impact should be pretty quick, whereas it usually takes a while for the D3 to get to a high enough level to substantially prevent attacks. If you are going to request Indomethacin, I would suggest reading up on dosage (google Indomethacin and or HC). Some reports say that Indo works within a few days, but (as I remember it), others suggest you need to give it a couple of weeks to be sure, starting with a lower dosage and going up as tolerated. As you might have read, Indo is hard on the guts (for some people), so it is often recommended that it be taken with a med that protects the stomach, such as prevacid or nexium.
  10. Theoretically, the triptan shouldn't help. But there are some people with HC who do have positive results from triptans. I don't think that multi-hour attacks are common with HC.
  11. Silly of me to have assumed France! Just making sure you saw my earlier, longer message in this thread. Being in Canada, getting oxygen and a more effective triptan should not be that hard. You could also consider a course of prednisone, which will usually stop CH attacks for some days. The everyday lower-level pain might add something to the suggestion of hemicrania continua (HC), and you could test the drug that stops HC, Indomethacin.
  12. This is where you can find the information about the D3 regimen. It might be a little hard for you to get through in English. There is a list/table there showing the basic ingredients. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  13. SciMMiA, your English is excellent, but I'm not sure I completely understand everything you have written. As Bejeeber says, the long duration of your primary attacks does not sound like it is CH, but the fact that a triptan helps, and the eye/nose symptoms, suggest that it is at least in the same category as CH. Are you also saying that in addition to the six bad attacks per month, you also have some "small" pain every day, and that pain is mostly associated with your eye? If you do have CH, then you should have oxygen, and you should probably have a triptan that is not a pill but is either an injection (called Imigrane in France, I think) or a nasal spray (which I think is called Zomig in France). These triptans will stop your attack much faster than a pill, and if you are only using them for attacks about six times a month, you should tolerate it okay. Oxygen will stop a CH attack pretty quickly and it is not as potentially harmful as triptans. Oxygen is inhaled through a mask, coming from a tank/cylinder/cannister. Oxygen and triptans are the recommended treatments in the European Union for stopping a CH attack. Verapamil is the recommended medicine for preventing attacks. You have to take it for several weeks before it becomes effective, so you don't really know yet. Your dosage is in the low range, so your doctor might be going to increase it. That is the way that verapamil is correctly prescribed, starting with a somewhat low dose, monitoring for side effects, and then increasing as needed. Some people need three or four times as much as you are taking before verapamil is fully effective. You could also try the CGRP drug Emgality. As Bejeeber has said, the Vitamin D3 regimen and busting are often very helpful for a variety of conditions. They have fewer side effects than the medications I listed above. There are some people here who have both migraine and CH, sometimes at the same time, or one directly following the other. This is a possibility. Another possibility is some kind of hemicrania (hemicrania continua (HC); paroxysmal hemicrania). These look a lot like CH, and HC includes a constant headache. But . . . usually they do not have such long-lasting attacks as yours, and usually they do not respond to triptans. Have you seen an eye doctor to rule out a headache associated with an eye condition?
  14. Any reason not to take some seeds right now, preventively?
  15. Pretty sure most folks here would disagree with that.
  16. Haz', I remember you well, and I'm so glad for your long remission! You worked hard for that. In general, people here have reported a wide range of results from propranolol (Inderal), which was actually prescribed for CH way back when and still is sometimes these days (it seems to help prevent migraines), from seeming to reduce their attacks to having no effect to seeming to make them worse. I think only one person thought it made them worse. You can see what people have said by putting propranolol into the search box at the top right of each page (if you're going to do this, do Inderal, too). It seems highly unlikely to me that it would set off a cycle.
  17. Is it that your doc doesn't know you have CH, or that he knows that you have CH but keeps endorsing/prescribing migraine meds? Has he prescribed oxygen? Has he prescribed Imitrex, or verapamil, or one of the new CGRP meds (such as Emgality, Aimovig, or others), all of which are also treatments for CH? What are you doing beyond pharma meds? D3 regimen? Busting? Most CH patients, as has been suggested, have very little need for doctors. If you can get an oxygen prescription, that's good, but you don't need it to have an O2 system. A prescription for an injected or nasal triptan can be very good to have, but those are also migraine meds. And I think everyone probably ought to try one of the CGRP meds (also essentially migraine meds, with boosted dosage for CH), but others disagree with me about that. Beyond those things (and maybe a course of prednisone to interrupt a cycle), the OTC D3 regimen is much better (more effective; fewer side effects) for most people than verapamil as a preventive; the D3-related anti-inflammatory practices (including the "Full Monty") can often stop a cycle; the best abortive, oxygen, can be set up without a prescription, as I've said; and busting is great if you are open to it.
  18. At the home page, there's a tab (upper left) called "Users Online." It says that right now there are 94 users online. I don't know how that number is arrived at, and I suspect it's not anywhere close to an actual reflection of how many people are actually making use of the site (as opposed to search engines finding it, or maybe multiple entries that reflect each time one person does a different thing), but maybe it does suggest that the information is being used, even if there are not many active discussions. (There's also an "activity" tab where you can see that there are people joining.)
  19. This sounds kind of nuts. You can't keep taking steroids -- once a year is the recommended maximum (although some of your courses have been relatively short, so it's not like you've done it three times). I don't know whether what's going on is making your cycle worse (sometimes they're just worse), but I think there are some things to do. 280mg/day of verapamil (if I'm reading you right) is still not a very substantial dose, so that could go considerably higher. But if you're going to get titrated slowly higher, that will take time . . . and verapamil can be bad for you, too. I think we would recommend that your first steps would be to start the Vitamin D3 regimen ASAP and make sure your oxygen system is optimized. The D3 regimen is described here http:// https://vitamindwiki.com/Cluster+headaches+virtually+eliminated+in+7%2C000+people+with+high-dose+vitamin+D+and+cofactors+-+Feb+2022, and you can get lots of help from folks here with understanding it and doing it right. Your O2 system should of course be from a tank/cylinder (not a concentrator), using a nonrebreather mask or, even better, the mask designed for people with CH. The flow rate of your regulator should be sufficient that you can inhale and exhale deeply and never have to wait for the bag on your mask to fill before you do your next inhale. And you should be sure that you are using a good breathing method and you probably should do as most people do and get some caffeine in you as you start the oxygen. There is info about all this (and a lot of other stuff) in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Beyond those basics, I think we would urge you to consider busting (the essence of which is described at the end of the file I just gave you the link for). I would also think that in the short run, aborting with a triptan (Imitrex, Zolmitriptan...) is better for you than the steroids, particularly if you split the Imitrex doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ To me, the main thing is to get stabilized without steroids, and find the strategies that will be most reliable for you over the long run, with the least side effects.
  20. In this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a section toward the end (headed "Treatments" without O2...) about things you can do when you don't have O2 or other meds. Most are variations on things that have already been listed in this thread, but maybe worth a read. In addition to what's there, many people find that sleeping more upright (e.g., in a recliner, or at a table with you head on pillows) can reduce the frequency or severity of nighttime attacks. (If you look through the reply posts in that thread, you'll see a couple of other things that might be worth trying.) Since you are new to actually dealing with CH, you might want to look through that whole document. It also contains some tips about how to make it more likely that you get an O2 prescription. Keep us informed . . . .
  21. This is good news, Jeff, particularly the part about you having no side effects. Thank you for letting us know.
  22. Fascinating. I feel like this is the first time I've heard of doing it that way. What strength are the pills that you use? (You're doing this instead of the V8 Energy, or alternating them in some way???)
  23. Interesting . . . Thanks, Denny. I'd just note that it contains a lot of aspartame, which would concern some people, and another controversial sweetener, acesulfame potassium (and controversial food colorings), and it has about the same caffeine as 8 ounces of coffee. Coffee + a taurine pill might work just as well, in a similar cost range, with maybe less health risk.
  24. You do you. Bold experimentation got many people at this site to the better place where they are now, so no one is going to deny your privilege to do the same. If you reach the grail and share it, we all will benefit. But I'd be careful about putting too much stock in the quotes you provide here, since they are from a study of people who don't absorb vitamin D or absorb it very poorly -- "patients with malabsorption syndromes" as the article's title says. So it stands to reason that they can cite the research you mention showing malabsorption in these patients, but it doesn't say anything at all about people with normal absorption. One reason I looked at the study is that the quotes you provide so are contradictory to what has been observed time and again with the D3 regimen, where D levels go up significantly as people take more D3 (and not D2, which is the stated product in one of the quotes). The "minimal erythemal dose" mentioned in one quote means "the minimum amount of x-rays or other form of radiation sufficient to produce redness of the skin after application, regarded as the dose that is safe to give at one time." You would have to create a whole lot of redness, or mild sunburn, all over your body day after day, to get to a substantial daily dose of D. The increases reported in this study from using the sunlamps for eight weeks might be beneficial to the patients in the study, but they are trivial in relationship to getting D to a level where it makes a difference for CH. Plus, it appears that the tanning machine (not cost-free) couldn't sustain increases. Maybe the first quote, about sunlight, is accurate. But there have been many people here who have believed that their pattern of daily activities, from working outside to a lot of daily outdoor recreation or gardening, would have given them a satisfactory D level -- and were surprised to find out that they were at or below even the minimum level, let alone the substantially higher level needed to combat CH. I don't know what they are considering the "daily body requirements" in that quote, but the level of D required to combat CH is substantially higher than what medicine considers to be the "daily body requirements." Like I say, bless you in your search for a "non-invasive & cost-free preventative." Something is working for you now, which is great, and who knows what you might discover.
  25. The link at the top of this post will take you to a page updated by Batch (xxx) in February of this year, and the post and replies contain more information: https://clusterbusters.org/forums/topic/1308-d3-regimen/ This should cover the basics, but, as I say there, I'm not confident that I am fully up-to-date on all of the current revisions.
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