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Everything posted by CHfather

  1. Timothy', here's hoping you see a competent neurologist today and you do get a prescription. Let us know. If you don't, you can set up your own system using welding oxygen, as many people with CH have done. We can tell you more about that. Many people without O2 find that an energy shot such as 5-Hour Energy will stop an attack or significantly reduce its severity. Here's a file with a lot of info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  2. You have a prescription for medical O2 and you're looking for a supplier? I ask because often a doctor who writes a prescription will have a preferred O2 supplier. Or are you without a prescription and looking for welding O2?
  3. This has been discussed in other threads. I don't think there's a definitive answer, but I think for most people the vaccine wasn't a major trigger. Since there are several threads, you can see them by typing the word vaccine into the search bar at the top right of the page. Not sure you'll learn much, except that reactions vary.
  4. Yes, use O2 and other strategies as primary way of aborting. Split the Imitrex shots (https://clusterbusters.org/forums/topic/2446-extending-imitrex/)! Learn other strategies for reducing the severity of cycles (D3, busting, etc.): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  5. Many people get good relief from the nasal spray. If you get the injectable, you can divide it into two or three doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  6. I haven't read this said much lately, but it has been recommended by Batch that you take the verapamil and the calcium supplement at least 8 hours apart from each other (Verap being a calcium channel blocker).
  7. elSchreib, What jon says. Since you're new to CH, this overview file might be helpful. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  8. Philip', I don't see anything at the site you linked to above that relates to any kind of oxygen or oxygen-related equipment.
  9. CrystalAnn', you don't say if you are splitting your Imitrex injections. If not, https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Since it's allergy season in many places, and allergies seem clearly to induce CH, I would consider Benadryl, 25mg four times a day, or Quercetin, maybe 1-3 grams/day. https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582 I don't know anything for certain about this, but maybe it's worth trying: https://clusterbusters.org/forums/topic/5829-does-nasal-decongestant-spray-work-for-you/?tab=comments
  10. senya, this is really fascinating information. Thank you for posting it. I understand that you don't use any triptans; do you also not use oxygen to abort? Are you relying completely on the nasal spray? Energy drinks/shots? Anything aside from the spray?
  11. Energy beverages (the 8 oz or larger drinks and the smaller "shots") work because they have a lot of caffeine in them. Some people credit other ingredients, such as taurine. I'm not persuaded about that. So straight strong coffee might work, as it does for some people. A 5-Hour Energy shot is very potent (about twice as much caffeine as a Red Bull, for example), and you can swill it down fast. Some people say the colder the better. Surprisingly, I'm going to say that 85-90 percent of people can get back to sleep quickly after taking it during the night. A non-rebreather mask is fine.
  12. Welcome, its'. As we say, sorry you have to be here. First things first. It will make a difference. Sounds like you had a useless system the last time. What is the current flow rate? It's rare for a doctor to prescribe more than 15 lpm, but most people find that flows higher than 15 lpm make for better aborts. Throw down some coffee or an energy shot as you start of the O2, use a good breathing technique, and your life is gonna start changing. Consider getting the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&
  13. I know there are many people here who have been using oxygen for a very long time, who still find that it works fine for them. As you said, there are people who find that once in a while O2 doesn't work for them (I think that is usually because the O2 level in the tank is too low). I do know of a couple of older people who have been using O2 for many, many years who have found that other abortives sometimes work more effectively for them, but I don't think they have posted about that here, and I can't say whether they've developed a tolerance for O2 or whether there are other factors involve
  14. First shot, two weeks ago, no change for my daughter. Out of cycle but within her typical cycle time frame.
  15. You might already have seen this as you've been reading. It gives you a sense of the treatment landscape, including basics of busting at the very end: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly. Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time. The D3 regimen is a good preventive, but probably won't help you right
  16. Even with the loading, two weeks might very well not be long enough for him to get a significant response. Could be, but not very likely.
  17. marcianin, what did the doctor prescribe to you? It might be valuable for you to read this post, which will give you an idea of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I would suggest starting a new topic in the "Theory and Implementation" section, with the heading "Newly Diagnosed" or something like that. That's how you'll get the most advice and have it in one place.
  18. Leo, do you mean a concentrator (makes O2 out of room air)? For many people, those are not really fully effective, for two main reasons: the O2 they make is less than 100 pure (there's still some room air in it); and the regulator doesn't go high enough to support fully effective breathing. I'm glad it works for you, but as I say, they're not really right for everyone. (And I suppose we should consider what "works for you" means--with a fully optimized system, many/most people can abort an attack in ten minutes or even considerably less. If you're getting that result, it's great. If not, a
  19. trjoas, Bless you a hundred times for your perseverance and your positive mindset.
  20. This is not in fact today's "accepted naming convention." It's what people once did (often inaccurately--the "Spanish Flu," for example, didn't originate in Spain, and "German measles" didn't originate in Germany) or still choose to do. Today's "accepted naming convention," pursuant to WHO guidelines issued in 2015, is to avoid using place names. This convention is widely accepted. For example, when the US under Trump's leadership tried to refer to the current coronavirus with a Chinese reference in an official G7 communication, the other G7 countries refused to go along. At least some of y
  21. There are sites, such as www.goodrx.com, that provide coupons for drugs. I feel like some people found that the prices for Imitrex using those coupons were actually lower than what they were paying with insurance.
  22. Just typing Orlando into the search bar at the top right side of any page brings up a whole lot of discussion about getting O2 in that area. I don't know whether there is real possibility in any of those threads. The Boost canisters aren't going to help in any substantial/affordable way. Is there a reason you're not pursuing welding O2? https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  23. Not sure where you are with the fitting. I haven't checked broadly on this, but they seem to be a standard item carried by hardware outlets. That version's usually plastic, and might cost a couple of bucks. It looks like this (ones I have seen have also been grey or greenish-blue). https://www.shopnebulizer.com/p-salter-labs-nipple-nut-plastic-hose-barb-fitting.html?gclid=Cj0KCQiAs5eCBhCBARIsAEhk4r7tJ_qJlVbD-LYAVblIQDDS1UQmdfwxpfpdHXiWOyF99pUai8qpIFQaAuFpEALw_wcB If I was going in to ask, I think I'd ask for a barb fitting for an oxygen regulator. Or, a thingie you attach to an oxyg
  24. As I always say when a question like this comes up, this isn't the best place to get a good answer to that question, because people who have permanently stopped their cycles are not the users here. There are some good answers in the previous replies about the possibility of pretty-much permanent relief if a preventive busting cycle is maintained, and there might be lots of examples among people who came here and didn't come back of even better successes. There are similar stories of seemingly potentially permanent results from the D3 regimen. And, considering all the hype among informed peo
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