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CHfather

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Everything posted by CHfather

  1. The pills barely work in any event. If you ask your doctor about oxygen, s/he is likely not to give it to you. Lord knows why, but that's how it usually works. You need to insist on oxygen, and/or find a doctor that is competent enough to prescribe it. For a bunch of stuff that might be helpful, take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  2. For basics, click on the blue "New Users..." banner at the top of any page. Rivea corymbosa seeds (in most places) are "over the counter" in the sense that they are legal to purchase and possess, yet are very effective busting agents. To discuss any of this further, you'd want to start a thread at one of the more private boards ("Share Your Busting Stories" would work, or "Theory and Implementation").
  3. Might not be any detriment. But . . . According to your NHS, "Diphenhydramine is also called by the brand names Histergan, Nytol Original, Nytol One-A-Night and Sleepeaze." https://www.nhs.uk/medicines/diphenhydramine/# Looks like maybe Tesco also sells it (??): https://www.drugs.com/uk/tesco-sleep-aid-25mg-tablets-leaflet.html
  4. You might look through this file to see if there are any other strategies that might help. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  5. Batch says that the average nmol/L for people who have been highly successful with D3 is 203.5, but the minimum that some successful people have had is around 85 nmol/L. That's a big range, but you seem to be in the ballpark. https://clusterbusters.org/forums/topic/1308-d3-regimen/ You should send Batch a message about the swollen knuckle. He is very generous about responding. His handle here is now xxx. So, click on the envelope icon on the top right side of the page, then put xxx in the "To" line. When you say you don't take any other medication for your CH, does that include
  6. I think everything is well covered here. As I understand it, Batch's recommendation from 2017 is different from what he recommended in the 2011 post linked to by Siegfried. The 2017 one (which seems like it would seriously save O2) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ Here's what I understand him to be saying. (1) For 30 seconds, hyperventilate using room air. That's ten three-second deep inhale/full exhale events, deeply inhaling and forcibly exhaling during three seconds each time. He says, "On the tenth exhalation, hold the sque
  7. kat_', you might be making a wise and perfectly good decision about this. But do keep in mind that here and at other CH sites, people are there because things haven't worked for them. A few people have showed up here to say that Emgality, Aimovig, or some other medication of that type has helped them, but for the most part, people who find relief from something are not likely to be here, so the comments are skewed toward the negative, which might not represent the whole picture.
  8. Nurtec is an abortive, Emgality and others are preventives. Nurtec's materials specifically say "Not for prevention."
  9. I guess it's late, but any chance of getting a prednisone taper for your trip? For most people it will stop attacks at least part of the time while you're on it. Seems like that would be safer than driving while aborting. It will also give the D3 more time to ramp up. It can take a while, weeks or even months, for D3 to get up to therapeutic levels. You seem like a wise and knowledgeable person, so the rest here is just in case . . . (and I might not have read carefully enough, so forgive me where I'm wrong) Batch has talked about not driving while taking those Benadryl doses.
  10. Phantom, just a note that if there's a topic you're wondering about, you can search for it using the search bar at the top right of each page. I'm not saying that you shouldn't ask questions, but sometimes you can get a lot from a search, too.
  11. Flunarizine can't be prescribed in the US (or Japan) because it seems to create "movement disorders" related to Parkinson's disease. https://www.nature.com/articles/s41598-018-37901-z There was a time when it was also banned or limited in the UK -- not sure whether that's still true. It does seem to be effective as a migraine treatment, but maybe not more effective than other calcium channel blockers with less risky side effects.
  12. For treating your CH or as a defense (in his view) against coronavirus? He was big on the latter, so just checking.
  13. Acupuncture is almost always ineffective. I think a few people have benefited from it. WHY do neurologists keep finding reasons not to prescribe O2. It might be difficult to get it approved by insurance, but with most private insurance companies that battle can be won, and sometimes there isn't even a battle. Medicare and Medicaid won't cover oxygen. Also, having a prescription allows you to pay the O2 provider out of pocket if that's a necessary way to go. If you read the post I linked you to, you'll see the answer to this question (which is yes, by using welding oxygen).
  14. Here's some basic info about treating cluster headaches (it does sound like that's likely to be what you have). Among other things, there's a link in here to the D3 regimen, which the previous posters recommended (for good reason). You should start the D3 right away. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Check out the "Triggers" link, too. I have a slightly different view regarding the Topamax. Yes, it is not a first-line CH treatment. So, if you can get a revised set of prescriptions quickly (something like oxygen, a nasal or injected triptan,
  15. If 25lpm with a non-rebreather (NRB) mask is sufficient flow for you (sufficient that the bag is always full when you are ready to inhale using a fully effective breathing technique), there's no reason I can think of that your aborts would be faster using a demand valve. There are small "studies" claiming greater effectiveness for demand valves vs. NRBs, but in those studies the people using the NRBs had flow rates of 15lpm, which might just have been too low for them. (Average abort times for people using the demand valves in one study was 12 minutes. I don't think that means much, since eve
  16. It's not like we didn't expect this would happen, but it's infuriating and disgusting and disgraceful, and the words I have for your PCP and the practice are a lot stronger than that. You said in a previous post that the neuro was going to tell the PCP that he (the neuro) recommended high-flow oxygen for you. That had no effect, either??? jon' -- I'm thinking these are standard migraine prescriptions, no??? Just sayin' they probably didn't actually have to put in any real effort, since they've probably prescribed this stuff many times for people with "headaches." The heartless bas
  17. People often start at about 9mg of melatonin, and then work up as needed/tolerated. Some people here take amounts in the high 20mgs or even higher. Melatonin plus Benadryl is a strong dose of sleep-inducing medications, though, so take care if you are doing both. Yes, GET THAT O2, ASAP!!!!!!! You're putting yourself through a lot right now that you won't need once you have the O2.
  18. Jimmy, wishing you the best, as always. What specifically have you been doing for your CH?
  19. Colette (and maybe Monica), you really should read this file. You're missing a whole lot of treatment options. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  20. I was kind of surprised that this wasn't actually a BOL trial. (For those that don't know, BOL-148 is a whole lot of LSD, many times the recreational dose, that is rendered non-hallucinogenic by the addition of another molecule (brromine).) I know there were issues with another company's attempts to bring BOL to market for CH, and I know some of those issues were related to licensing rights and fees. Or something. Anyway, it could be that there's a "business" side to this choice.
  21. Your triptan decisions are completely sensible. I just wanted to be sure you saw the other side. Great that you have such a good O2 setup! Only advice, which you might already be using, is to be sure you get as much air out of your lungs as you can before your first inhale and after subsequent exhales. Hyperventilation as Batch recommends, or at least a good forceful "crunch." I don't think the D3 regimen should be an "if." Even if it doesn't help you right now, most people find that it's generally good for them, and it will help you with the next cycle. Two years is far away, t
  22. Acknowledging spiny's strong knowledge, I'm not sure I agree. There is probably no question that triptan overuse will have many bad effects, probably including rebounds and maybe including extending cycles. On the other hand, so much of this is guesswork. Look at your current cycle--came sooner, has been more severe (so far). If you were using triptans (now or before), you might be inclined to attribute it to that. My daughter has virtually never used triptans, but her cycles seem to keep getting longer and she has plenty of what seem like rebound attacks. (Many people get wicked rebound a
  23. https://www.biospace.com/article/releases/phase-2-clinical-trial-of-lsd-for-and-quot-suicide-headaches-and-quot-begins-treating-patients/?fbclid=IwAR2i4zGnc86d3Hijjzi4vxCBi87AlgJvc5Naeh0wlcXhQP-bgCKFc_h5YZM Phase 2 Clinical Trial of LSD for "Suicide Headaches" Begins Treating Patients Published: Jun 08, 2020 MindMed Is Collaborating on a Phase 2 Clinical Trial of LSD For Cluster Headaches with University Hospital Basel's Liechti Lab BASEL, Switzerland, June 8, 2020 /PRNewswire/ -- Mind Medicine (MindMed) Inc. (NEO: MMED OTCQB: MMEDF), is supporting and collaboratin
  24. Maybe this helps explain where it went -- message from CB on FB this morning (not sure why we're not being asked here): Clusterbusters is currently building a new physician finder to help people find knowledgeable healthcare providers. The best place to learn about which providers treat our community well is to ask the community. If you have a great doctor or other healthcare provider that is excellent at treating cluster headaches, please complete this survey to help us build this important resource. Please fill out the survey multiple times if you would like to reco
  25. As long as your tanks are well secured so they don't fall over, the only significant danger would be if your house were to catch on fire (from some other cause). He was right in the sense that there's some tiny risk associated with having tanks in the house, but he was wrong in the sense that now here you are in cycle and still trying to get O2. Splitting the shots from an autoinjector will require you to inject yourself in the conventional way (autoinject is disabled when you take the injector apart). O2 is going to very significantly reduce the number of times you need to inject. (And
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