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CHfather

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Everything posted by CHfather

  1. Racer..... You know this stuff as well as anyone. How much of an improvement would you say a demand valve is over a high-flow regulator with the "Optimask" (ClusterO2 kit)? My daughter (the person with CH in my family, for those who don't already know that) loves her demand-valve-type system (she has to push a button to get the O2, but it's there on demand), in part because it takes some of the "drama" out of the bag filling and then being emptied. Making an O2 abort as simple as possible has psychological benefits as well as possible practical ones. So I have nothing bad to say about demand valves if a person can get one/afford one. But just in practical terms, and insofar as this can be determined given all the variables, I don't think she gets faster or better aborts than she was getting with a welding reg and the Optimask. Curious about your view/experience (and others') about this.
  2. eBay is a frequent source. Not always there, but sometimes. We got ours there. It's a very nice thing to have, but . . . I'll be darned if I can see how demand valve conserves any significant amount of O2. We've had this discussion and I've been outvoted, but I still don't see it. I've never seen demand valves for sale at amazon. Are you sure that's what you got? Do you have a link in your "My orders" section? I have to admit, here again, that I have always understood that medical demand valve systems could not be obtained in the US without a prescription, unless at a "black market" site like eBay. Happy to be shown to be wrong about all of this.
  3. Dr. Lee Kudrow, who had CH, founded the first private headache center in the western US and in 1981 he published the first substantial research on oxygen for CH. I think he might have been the first to consider O2 as a treatment, but I'm not sure about that. He was the first to recognize medication overuse headaches. His son, David, runs that clinic now (somewhere in California, but I'm not sure where). His daughter is the actor Lisa Kudrow.
  4. I think your reading will clarify some things, so just briefly . . . . You should be using the M tank (with a reasonable regulator), not the concentrator. Did your provider not even supply a basic mask to use with the M tank? Your supplier should also be able to provide you with a regulator that goes to at least 15lpm. A typical sensible doctor's prescription calls for up to 15 lpm (and a typical sensible doctor's prescription also calls for a nonrebreather mask). You probably will do better by buying your own regulator, so you get a higher lpm than 15 and you pay less overall, since you are "renting" the regulator from the supplier. You can get a much smaller tank for portability. You will read about that. The smaller tank requires a different regulator than the M tank. Oxygen is always a necessity for CH, and attacks can become a bit more intractable over time, so even though your current system is working okay, you want to be sure your system is optimized. It's hard to imagine that those Boost canisters will help you. 10 liters is about one minute of treatment. BTW, the prednisone taper you are on is pretty long. Three weeks, with four days at 60mg, is a more standard prescription. Not a huge deal, but you don't really want to be using more pred than necessary.
  5. It is often suggested here to stay on the oxygen for a while (5-10 minutes) after you have stopped an attack, because that seems to help hold off subsequent attacks. You are stopping attacks with 10lpm from a concentrator, using cannula???? You're gonna be thrilled at how much faster it can happen if you have even more correct equipment (in addition to the mask you have ordered). Is there a way that you can get cylinders/tanks from your O2 provider instead of the concentrator? Concentrator O2 has more room air in it than is ideal, and with a cylinder you can use a higher-lpm regulator. Cylinders also address your portability question, since the smaller cylinders are highly portable. There's a fairly thorough discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  6. One simple way that they differ is that while people with migraine can generally go lay down in some helpful situation (dark, quiet room, damp cloth on forehead, etc.), people with to CH are too agitated to do that (and it doesn't help the pain). Agitation -- pacing, rocking, etc. -- is a clinical sign of CH. This is pretty generally true, even in milder versions of CH. Since you say that in some situations it your attacks can last for a while, maybe you have experience. At the most basic level, medical preventives and abortives for CH and migraine are the same, so it might not matter all that much. O2, however, is generally not effective for migraine. The D3 regimen is a preventive that helps with both.
  7. Overall, I'd say you are not incurring any overuse risk, particularly if it's sumatriptan that you're using. Sumatriptan has a very short half-life, so your daily 25mg is fully out of your system before your next dose. I don't know whether you're messing with anything significant by breaking them up, but I would think not. (They do come in 25mg doses.) You are very fortunate! We rarely -- if ever; I don't remember it happening at all -- see anyone here who stops a CH attack straight off (or at all) with any dose of a triptan tablet, let alone a dose that small. Even with migraine, where the tablets are sometimes effective, it usually takes a while for a pill to have an effect.
  8. DragonKIller, is that you? https://clusterbusters.org/forums/topic/6701-what-if-there-was-a-cure/?tab=comments#comment-66277
  9. Seems like the O2 shortage in CA is a very real thing, and rationing is real. Here's one article of many about that: https://www.inverse.com/mind-body/covid19-oxygen-shortage-explained So, maybe there are in fact "official" prioritization mechanisms in place, and maybe you really are fortunate that they made an exception for you. (PS: The Food and Drug Branch of the California Department of Health Services regulates the quality, purity, labeling, manufacture, sale and advertising of oxygen for medical use and its delivery systems in accordance with the Sherman Food, Drug and Cosmetic Law (California Health and Safety Code Sections 26000 through 26851)).
  10. If your supplier will give you a 25lpm regulator (or higher), that's good. You can also get your own for under $35, and also get the mask that's made for people with CH (bigger bag, among other things) for about the same amount: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit I don't think they can legally decide not to serve people with one condition because another condition is more profitable. O2 suppliers are government-regulated in all states, I'm sure -- certainly in CA, where what isn't regulated? Not to say they wouldn't do it; just that there must be some kind of recourse.
  11. I posted a comment about how I thought he had understated the pain of CH by suggesting that attacks are far shorter than they actually are and not saying that they are day after day, often many times a day, and that I also though it was surprisingly uninformed about CH treatments. Of course, that comment is now submerged among hundreds of others, many along the lines of "I stopped gluten"; "Mine stopped with menopause"; etc. But, as you say, at least it's out there. Practically any time I have ever read a newspaper or magazine article about something I actually knew something about, I have found it disappointing -- inaccurate, inadequate, whatever . . . . So why do I still give so much credence to ones that are about something I don't know much about?
  12. Attached here. NYT - CH 7-22-21.pdf
  13. Seems like a very good awareness article. (I have attached a PDF to my post a little below here.) A little mystifying that the author seems so helplessly clueless about treating his own CH. https://www.nytimes.com/2021/07/23/opinion/headaches-research-cure.html?action=click&module=Opinion&pgtype=Homepage
  14. We're happy for you to be here, Momma', but (as it is said) sorry that you have to be here. CH is defined as chronic if you don't have any pain-free periods that last a month or more.
  15. I think it's pretty common over time for cycles to vary in duration and also in the regularity/predictability of attacks. Do you feel like your treatment of your attacks (including prevention) is optimized? Sounds like in the past the cycles have been infrequent enough and relatively brief enough that you might have gotten by with less than optimal methods. This post might have some ideas for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ For a feeling of understanding and solidarity (and great info), there's nothing like attending a ClusterBusters conference with a few hundred other folks. This year's is just outside Chicago, September 23-26.
  16. "“We not only saw a 10% increase in the number of neuronal connections, but also they were on average about 10% larger, so the connections were stronger as well.... It was a real surprise to see such enduring changes from just one dose of psilocybin." https://news.yale.edu/2021/07/05/psychedelic-spurs-growth-neural-connections-lost-depression?utm_source=YaleToday&utm_medium=Email&utm_campaign=YT_Yale Today-Best of the Week Public_7-17-2021
  17. If you don't intend to see any kind of medical professional for a month (and you anticipate that your cycle might continue for that long or longer), I would seriously consider setting up a system using welding O2. That's a lot of pain you would very substantially reduce, and the mask and regulator could be things you would want to buy even if you decided you wanted medical O2 (and could get a prescription). (Seems like your cycle has already gone on a longer time than your previous ones, so maybe you're hoping it might be ending soon.)
  18. There might be some helpful info in here (and in the replies) for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There is some info at the end about "busting," which is something you should know about.
  19. I guess this NHS page might be a guide to brand names for diphenhydramine. https://www.nhs.uk/medicines/diphenhydramine/ Note, however, that it lists brand names in Part 1, but only says in Part 2 that some of those brands have diphenhydramine mixed with other medicines. Benadryl is time-tested. I will mention, though, that Batch has suggested Quercetin instead of Benadryl. More can be read about that at the thread titled "Ditch the Benadryl."
  20. CHfather

    Struggling

    Brad, very glad to read this! I'd like to consider adding B1 to our list of possibly-beneficial treatments, but I have a question. You first reported using the B1 on June 22, and it seems you started the B1 on 6/21. In your most recent post, you say that you had bad attacks up to July 4 (~13 days). In the case study you referred to, the patient had "decreasing frequency of attacks until they disappeared completely within 10 days." Was your experience like this, with steadily decreasing something (frequency or severity)? Sounds more like in your case it was more like same same same over. If you credit the B1 in part for ending your cycle, is that maybe because you ramped up your dosage slowly? (I would suggest that during your PF time (may it last forever, but just in case) you might want to work on getting an O2 system.) Glad you can go back to the job you worked so hard to earn, and keep up your studies toward that next one!
  21. There have been one or two reports of people getting O2 prescriptions from urgent care, but I think it's typically a no-go. I think your chances are increased if you have some kind of written CH diagnosis that you can show them, so you clear the diagnostic hurdle and now it's just prescribing. Every time I deal with any medical person, I ask them if they know what to prescribe for CH. 95 percent of the time they know that it's O2, which makes it all the more shocking that the actual rate of prescribing O2 is so much lower, so I don't know if they're not certain of the diagnosis when they see (or hear about) CH symptoms, or if they just chicken out about prescribing O2 and prefer to leave it to your physician. What about welding O2? https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ And be sure to seriously consider splitting your trex if it's a 6mg injector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  22. In a study, eating fatty fish and flaxseed while reducing linoleic acid consumption had a big effect on migraines (40% reduction). ("The major dietary sources of linoleic acid are vegetable oils, nuts, seeds, meats, and eggs. The consumption of linoleic acid in the US diet began to increase around 1969 and paralleled the introduction of soybean oil as the major commercial additive to many processed foods.") There's a suggestion here that eating the fish and flaxseed is better than taking Omega-3 supplements, and a suggestion that the diet affects pain pathways, which is why I thought it might be relevant here. https://www.bmj.com/content/374/bmj.n1448
  23. The only thing to request from your doctor is a prescription for oxygen. The standard prescription is something like: "Oxygen therapy: 15 mins at 15lpm with non-rebreather mask." The prescription then gets provided to an oxygen supply company, and that's where you need to put your attention to get the right equipment. In essence, that's cylinders (tanks) of O2, not a "concentrator" that makes O2 from room air; an M or H tank (the large types, for home use) and at least one E tank (portable for car, office, etc.); and a non-rebreather mask (NOT nasal cannula). If they'll give you a regulator that goes up to 25lpm (liters per minute), that will be nice, but most will just give you 15 lpm. You might read the "Oxygen" section of this document --https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/--which repeats what I said here and expands on it in some places. The big hurdle is getting that prescription. If there's someone you can talk to at the doctor's office in advance about the doctor's inclination or disinclination to prescribe O2, you might be able to provide information if needed to sway that decision. That info is in the file I linked to above. At the least, you might bring some of it with you.
  24. @trjonas Just curious -- Are you taking Neurontin (gabapentin) or a similar medication as part of your post-operative therapy? I ask because Neurontin is often prescribed in nerve-regeneration situations (and it's also sometimes prescribed for CH).
  25. CHfather

    Struggling

    @Brad, how are you doing????
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