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Everything posted by CHfather

  1. 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.
  2. 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 . . . .
  3. This is good news, Jeff, particularly the part about you having no side effects. Thank you for letting us know.
  4. 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???)
  5. 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.
  6. 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.
  7. 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.
  8. You really should go back to your doctor and ask for the oxygen .I promise you it will become your best friend !!!!!!!! I love seeing my tanks of o2 in my house it gives me great comfort to know they are their What Shaun said is just what I was thinking (I notice that my thinking apparently contains a lot of typos!) You can't run away from having it, but when you face it, you can do wise things to make it a whole lot less bad. You clearly are searching for those things, as everyone here is, and coming up with some interesting discoveries. But it's hard for me to see a reason why you wouldn't go for the D3 regimen full-bore, give busting a try, get oxygen, and maybe even give the new CGRP medications a shot (among other things).
  9. Some notes that might be pertinent to some of this discussion. The predictable recurrence of CH cycles seems to have been greatly exaggerated. In Rozen's 2010 study, "Cluster Headache in the United States," of 1134 people with CH, he reported, "In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin." In that same study, 22% reported having just one attack per day. Regarding the effects of light, there was this interesting thread here a while back about glasses preventing CH: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/?tab=comments#comment-78836 In that same Rozen study, 6% of people reported having a father with CH. Hereditary data are all over the place, but overall, the chances that your daughter will have hereditary CH are very low. A JAMA 2020 report said "Across the 22 large cohort studies, the positive family history rate of cluster headache varied between 0% and 22%, with a median of 8.2%. The largest 5 studies had a positive family history in 18.0% (numerator not provided), 5.1% (40 of 785 cases), 10.0% (numerator not provided), 2.0% (12 of 609 cases), and 11.2% (56 of 500 cases), respectively. https://jamanetwork.com/journals/jamaneurology/article-abstract/2764341#:~:text=Meaning Per this systematic review,as well as environmental factors. [Note that this is family history, which could be anyone in the family. If you limit it to fathers, the percentages are much lower.] Since I have a daughter with CH (but -- for those who don't know -- do not have CH myself), I understand your dread, and I think Bosco' was right about the advantage she would have from your knowledge, in the very unlikely event that she does develop CH.
  10. Monica, I'm story #3 in that booklet, so my situation is different, and I'm probably not material for what you are thinking of writing. I wish you the best with it.
  11. Monica, this booklet doesn't do all of the valuable things you are aiming to do, but it does have brief Living with CH - 8.5x11 - 9-15-14.docxpersonal accounts from people with CH. This was created more as a way of educating family/friends/co-workers/etc. about CH than telling people with CH what they already know. (I didn't think the link was going to get pasted right in the middle of that sentence, but it seems to work.)
  12. Like everything else here, the kitten hypothesis is just an idea that is being tested by the citizen scientists. Or maybe your image reads as a kitten's eyeball. Or maybe one eyeball = one kitten, but two kittens are more efficacious.
  13. Speaking of Shaun as we were, I have to say that I looked up your image, Jeebs, fascinated by the idea of kitten jelly. Turns out that this product is made in the UK and sold to customers in the US by a company that proudly declares: "British Essentials was founded so that more people around the world could enjoy the taste of British Food & Drink, without being restricted by where in the world they may live. Our core mission is to make British Food & Drink accessible to everyone around the world." I have often warned my wife that if she continues her spendthrift ways we will be reduced to eating catfood in our late(r) years. Now at least I know that we will be able to vary our diet with the finest of British Food & Drink.
  14. OMG! (a whole bunch of fuel cats)
  15. You can be a hot dog!
  16. All cats all the time here -- Jeebs, B'P', me, and of course there's no cooler cats than jon019 and S'b'.
  17. I had been trying an adorable profile pic to see if I could get more leaderboard likes that way, or at least raise my rank to be a little closer to yours, Shaun's, spiny's . . . and everyone else's. Apparently a Jigglypuff was not cute enough, or perhaps there is some hidden Pokemon animosity here. So now I'm all in! How can you not like this!
  18. Just my usual note that, contrary to what one might think, a small energy shot such as 5-Hour Energy has twice as much caffeine as a standard Red Bull or Monster -- and is a lot easier to get down fast. Also, as has been noted, coffee does the job for many, and some find benefit from taking a taurine pill along with the coffee. Finally, any caffeinated drink seems to work better if you have been off of caffeine for a while (e.g., before your cycle starts).
  19. I think the demonstrator in that video was @Racer1_NC, at a ClusterBusters conference. He'd be a good one to answer your questions. Also, If you type "demand valve" in the search bar at the top of any page here, you will see a lot of discussions of demand valve purchasing. I will not weigh in with my opinions, which are probably or at least perhaps wrong, and anyway you can read plenty of them if you do that search of the site!
  20. I was only suggesting that your offers are very thoughtful, but it need not be too complicated. You walk into a welding supply store, get a tank by telling a fib about why you want it -- if anyone asks, which is highly unlikely -- and walk out. A "massive" tank is good, but very hard for most of us to transport.
  21. Bless you, O'N', for somehow keeping a sense of humor about this, and for the good care you have taken of yourself. At the same time, this guy should be reported to someone. He's a disgrace. It's one thing to be ignorant about CH (as so many are), it's another thing to have your head this far up your butt that you can't see daylight. In the great journal article posted here recently (https://www.bmj.com/content/376/bmj-2020-059577), this appears on the first page. Maybe you should send it to him. Or someone. Sex ratios and cluster headache The true sex ratio is unclear, as the sex ratio decreased each decade from the 1960s to the 1990s at a single site, and the male to female ratio was 4.3:1 in a 2008 meta-analysis but 1.3-2.6 in large studies in the 2010s. Previous misdiagnoses in women are one possible reason for the decreasing sex ratio.
  22. I'm not sure why this would be so. Does Medicare limit the number/size of tanks? Once there is coverage, I would assume (maybe wrongly) that a medical O2 supplier would provide what is needed, perhaps with the same hassles that others experience because CH is not generally understood by O2 providers, but not because of the nature of the coverage. I don't know whether you are referring here to the places where industrial/welding O2 is typically purchased by people with CH, but at those places, if you are honest and explain that this is for CH, they will send you away empty-handed (except maybe in some very rare circumstances), because they are prohibited from selling O2 for medical purposes. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Industrial/welding O2 can be a great thing, but it has some disadvantages in relationship to medical O2, one of which is the hassle of having to return the tanks yourself to get "refills," rather than having them brought to your door. And medical O2 with insurance might be less costly than welding O2, depending on a lot of factors. This is a generous offer. For the sake of clarity, though, no license or other document is required to walk into a place that sells welding O2 and buy it (at least I have never heard of a person having that issue).
  23. I think that's a separate thing . . . but don't really know. I am not terrible at reading regs, and other people who are not terrible at reading regs have also looked at it, but we're not able to confidently conclude what it says. Still waiting on one or two folks who might have a definitive answer.
  24. Some of us were just looking into this. I have reached out to some people who might know, but still don't have a solid answer. I'm told that this is the new document: https://www.cms.gov/medicare-coverage-database/view/ncd.aspx?ncdid=343&ncdver=2. I have a hard time making sense of it, and my conclusion, maybe completely wrong, is that it says that O2 is no longer disapproved, but there is not new guidance, and so (in the part in red) "In the absence of an NCD [national coverage determination], coverage determinations will be made by the Medicare Administrative Contractors under section 1862(a)(1)(A) of the Social Security Act, as allowed and described in Chapter 1, Section 240.2 (Home Use of Oxygen), Subsection D, of Publication 100-03 of the NCD Manual." This is all mind-busting to me -- and I might be understanding it all wrong.
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