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Everything posted by CHfather

  1. 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).
  2. 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.
  3. 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.
  4. 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.)
  5. 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.
  6. 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.
  7. OMG! (a whole bunch of fuel cats)
  8. All cats all the time here -- Jeebs, B'P', me, and of course there's no cooler cats than jon019 and S'b'.
  9. 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!
  10. 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).
  11. 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!
  12. 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.
  13. 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.
  14. 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).
  15. 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.
  16. 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.
  17. Thank you again, Adam', and thanks, B'P'. So, GammaCore, which works on the vagus nerve (as Adam said), is an approved treatment for CH. Here in the US, it is something like $600/month after the first month, which is free. Somehow, despite FDA approval, I haven't heard of insurance covering it, although maybe it does for some people. Cefaly, which works on the trigeminal nerve (as Adam' also said), is not FDA approved for CH, but just for migraine (I'm pretty sure). Think I have all that right. ClusterBusters was, at least at one time, very supportive of the development of GammaCore, and some heroic people actually did clinical trials where they could get a placebo device, which would presumably have no effect for aborting attacks (although, as I recall it, as is so often the case, the placebo devices actually did have some effect for shortening attacks). It was always hard for me to understand any broad appeal for GC as a CH abortive, since it generally takes at least as long as oxygen to work, at least according to the clinical trials. But I could see the appeal because of portability, allowing you to potentially stop an attack while out someplace, and because of the possible preventive effect. If it wasn't so expensive, I could see saying "Why not?" and using it for that purpose.
  18. That's a nice post, Adam'. Thank you. Can you tell us how the GammaCore has been for you? It has been worth the cost, I take it (or maybe the "UK" means you are in a system where the cost is not exorbitant).
  19. This is very good advice, but if your doctor is an idiot (I think you have a new one, who might or might not be), it's important for you to know that the standard prednisone "dose pack" won't really work well. Here is the recommendation from one primary CH resource: "Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis."
  20. That might help. Some people need still more -- 960 mg or more. Is the verapamil instant release or extended? Most people seem to get better results with instant than with extended. Yes, get on the D3 regimen ASAP -- it's a more effective preventive than verap with a lot fewer potential side effects. There is practically no insurance that won't cover O2, but sometimes you do have to fight for it. I am quoting a passage here from a post by jon019: "....OXYGEN!!!....life changer...saved my sanity, perhaps my life. over the yrs sometimes insurance covered it, sometimes not (always appeal any denial, for O2 have your doc write a letter of medical necessity). note that Medicare has just now approved its use for CH, and many insurers follow their lead. when not covered, i did self pay. either way, my out of pocket was about the same. cheap by any measure, especially compared to triptans like Imitrex, no side effects, fast when flow, mask and technique dialed in, more portable than the stereotype would indicate. don't let anybody dump a concentrator on you.......many a clusterhead bypasses all this nonsense and uses welding O2, "same stuff out of the same spigot"...cheaper yet, widely available....no insurance droids to get in the way. just don't tell 'em you gonna breathe it..." As we have discussed and jon' mentions, welding O2 is a relatively low-cost option. Easy to get, set up, and use. I don't want to oppress you about things you don't have, but getting oxygen is worth almost any sacrifice you have to make. I hope you looked at the link I gave you up above, particularly the part of that file headed "Treatments without oxygen..." None of those are as effective as O2 would be or the D3 regimen can be, but some might help you.
  21. (Part 2) Here's an overview that might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Since you're in a pinch right now, be sure to look at the part with the bold heading "Treatments" without O2 . . . Too much Imitrex is bad for you, and it can cause your attacks to get worse or your cycle to get longer. One way to use less is to split your injections. 2mg is enough for most people, but the injector holds 6mg. Here's some guidance (scroll down 'til you see the videos): https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  22. I am getting the very frustrating "Internal Server Error," so I'm hoping that breaking my message into two parts will help. You could set up an oxygen system using welding oxygen pretty quickly. Maybe check with your doctor's office and see whether she is willing to give you a prescription for medical oxygen (which should have been done in the first place). If not, get started on a welding O2-based system while you look for a better doctor. Start the D3 regimen. It helps some people quickly. Not all people or even most people, but you never know, and you want to start it for the future in any event.
  23. Here's a kind of overview of CH treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There's some additional information in the reply posts in that thread.
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