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Everything posted by CHfather

  1. how are you using o2? what is your system (do you have tanks, do you have a regulator that goes up to at least 25 lpm, do you have a nonrebreather mask (a mask with a bag attached to it)? do you take some kind of caffeine when you start?
  2. i think it works okay for some people (based on reports here), and for some it seems to have some effect as a preventive. not as good as oxygen for stopping an attack; not as good as many things as a preventive. not sure what your question is about the recharge. it won't work unless you recharge it. I had understood it was every month, and it was something like $600/month. Maybe that has all changed.
  3. About D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/
  4. Jackie, the primary thing you want from a doctor, if you have CH, is a prescription for oxygen. This post will give you a lot of info about CH treatments: https://clusterbusters.org/forums/forum/6-clusterbuster-files/ It's not clear to me that you have CH, which doesn't really cause severe pain 24/7. If you are having severe 24/7 pain with periods during the day when the pain is worse, and if you have tried standard CH medications without relief (particularly if you have tried oxygen and also tried injectable sumatriptan, or Imitrex), it seems more likely to me that you might have a condition that is very similar to CH but treated differently, called hemicrania continua (https://www.ninds.nih.gov/health-information/disorders/hemicrania-continua#:~:text=about related topics-,What is hemicrania continua%3F,both sides of the head.)
  5. Jus', it really would help if you'd tell us what you are taking now for your cluster headaches. In the meantime, if you feel like it, you might look through this doc that has info about treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  6. For full accuracy: remove the hair, add about 50 years and 50 (or 60) pounds, insert computer, and replace vest and tie with ripped pajama top. But back in the day, I did get to do some fun things.
  7. kat', I suppose you have checked this out thoroughly, but from looking on google, it seems like there are lots of welding O2 rental places in Puerto Rico, and also maybe a place where you could rent a concentrator, which might be better than nothing (https://www.rentittoday.com/medical-equipment-rentals/san-juan-puerto-rico-portable-oxygen-concentrator-rental-for-cruise-ship-22966). Maybe it's more of a hassle than you want to go through on vacation, or even too much of an expense. But maybe worth bringing your mask and regulator just in case. Another thought is that you might try some of the FaceBook CH groups and just put out a request for whether there's anyone who lives in PR who might be willing to loan/rent you a tank, or can recommend a place to get one. (I don't expect much to come from this, but I sent a message to the Puerto Rico Tourism Company, asking about getting O2. Many years ago, I actually worked for them, doing training at resort hotels on the island.) Story about a PR neurologist: https://www.latinoleadersmagazine.com/marchapril2022/2022/5/11/i-can-feel-your-pain-dr-franchesca-fiorito-headache-center-in-puerto-rico
  8. Lots of people do it this way -- no prescription required: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Your PCP is probably wrong . . . For a long time, Medicaid didn't cover O2 for cluster headaches, but now it does, or at least it can. This is a little complicated -- regional Medicare/Medicaid centers are allowed to determine whether or not O2 is covered for CH in their regions. And of course, you'd need a prescription. Welding O2, as discussed in that link, works fine, with no prescription needed. Since you are new to CH (we don't actually think there is such a thing as "cluster migraines," except maybe for a very, very small percentage of people), you might look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  9. I think if we are understanding your old setup correctly, you have what is called a "simple face mask" -- O2 was continuously flowing into the mask (not being held in a reservoir bag as the new NRB mask does). If that's right, then once you had inhaled with the old setup, O2 was still flowing, but not doing you any good because you were either holding o2 in your lungs or in the process of exhaling. With the bag, the only time you are actually using O2 is when you are inhaling. But I am confused, because a simple mask has holes in it (like the ones on your NRB, but on both sides) because that's where the exhale goes out. Could it be that you had a demand valve system, in which the only time O2 flows is when you "demand" it -- when you start inhaling (or perhaps press a button)? That would explain a lot (no bag; high effectiveness). If it is a simple mask in your old system, you aren't getting nearly as much pure O2 with that as you would with an NRB, because of the holes in the sides and also because you are rebreathing some of the CO2 that you have exhaled.
  10. It's hard to figure out why that would work better, but I'm sure hoping it does again for you.
  11. Some O2 thoughts. (1) Your mask probably has a set of small open holes on one side. Block those so that no room air gets in when you inhale. (2) Some people find that when a tank is relatively low in O2 (maybe 1/3 full or thereabouts) O2 is less effective. (3) If the bag is not full when you are ready to take your next deep inhale, your flow rate is too low. As far as changes in frequency/timing/severity of attacks, many people do experience that.
  12. Well, there are triggers, in the strictest sense of that word. For many, epinephrine (anesthetic used in dental work and other situations) will create an attack, in or out of cycle. Nitroglycerine is used in experiments to trigger attacks in people who are not in cycle. For some/many, alcohol will bring on an attack outside of a person's "regular interval" attack schedule while in cycle, to the extent that such regularity actually exists. (And maybe a little outside of a cycle, too -- seems like a lot of people who think their cycle has ended find out from the "beer test" that it isn't -- certainly at this point they are not having attacks at regular intervals, or they wouldn't think their cycle might be over.) Overall, in the list you provided, maybe you're just naming things differently -- if something makes an attack worse and/or longer, or brings on an unexpected attack, I think we have put it in the category of a "trigger," but maybe it should be called a "worsener." Whatever they are called, they are things to be avoided (in general, though not all of them for everyone). I knew a person with CH who could drink anything alcoholic, any time including in cycle, and get not any effect on attacks. I know a lot of people consider stress a factor, and I also knew a person who, like jon', had their longest attack-free period when under very significant stress. Generalizing about CH can be risky. Just for the record, I also know someone who stayed away from caffeine at all times except when in cycle to help directly abort an attack. It wasn't that caffeine drunk at other times would trigger anything, just that this person found that the abortive effect was stronger when that was the only time they drank caffeine. More importantly to me, I have to say that if you are having so many attacks, and some of them so long, maybe we can add some suggestions to the ones you have offered to provide. Oxygen, as jon' says, being the first but not the only. This file contains some suggestions that I gathered from this group's experience: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  13. CHB, that indeed does not sound like a top-flight neurologist. Was oxygen discussed? You might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ And of course an MRI should be done, to rule out other situations. As for causes, I have to say there's not a lot of discussion of that here, either, though many theories get brought up. Many people with CH remember having had head trauma, but many don't. Most people with CH smoke, but many don't. Stress? Psychological trauma? Weather? Cellphones? All discussed. But no one's gonna know a cause, and knowing it doesn't help much with treatment (some people find they benefit from keeping cellphones away from their cluster side).
  14. This is what UptoDate, an online resource for doctors, says. You should read the whole article -- a lot of good info at the end: https://www.uptodate.com/contents/supplemental-oxygen-on-commercial-airlines-beyond-the-basics#:~:text=In general%2C airlines do not,rented through an oxygen supplier. "In general, airlines do not provide medical oxygen, but allow passengers to bring a battery-powered portable oxygen concentrator (POC) for use in flight. POCs that are approved by the Federal Aviation Association (FAA) can be purchased or rented through an oxygen supplier. Approved POCs will have a label indicating that they meet FAA regulations. Airlines may require notification of the need for in-flight oxygen at least 48 hours before the trip, making it necessary to undergo testing at least three days before travel." Here is a link to what TSA says, but it's really covered in the article: https://www.tsa.gov/travel/special-procedures
  15. Reading that file I linked you to will give you a sense of other, perhaps better, options. You're fighting a monster with a popgun right now.
  16. Since it's new to you, and you don't mention what you are doing to prevent or stop attacks, you might want to take a look at this file for an overview of treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Although the file's title refers to "non-busting," there is a summary of busting protocols at the end.
  17. The anticipated completion date of the Yale psilo/CH study is June of this year.
  18. @MaxHead, I wish there was a stronger reaction available than "like" for your post.
  19. You might be right, kat', and in any event it won't be any time soon. But the fact that the FDA approved Yale's psilocybin/CH study, and the general buzz about psilo and other psychedelics, might at least make this kind of path a whole lot easier than it looked five or ten years ago.
  20. I read a great, long article some time ago about the whole industry of breeding mice with specific traits for scientific research. I thought it was in New Yorker, but I can't find it now. Here's one about how scientists bred happy mice: https://medicalxpress.com/news/2006-08-happy-mice-depression.html. Here are some about other genetically engineered mice: a patented cancer mouse (https://www.sciencehistory.org/distillations/podcast/the-mouse-that-changed-science) and autistic mice (https://www.spectrumnews.org/opinion/viewpoint/promises-and-limitations-of-mouse-models-of-autism/), and the tests that are used to make sure a rodent is depressed (https://newrepublic.com/article/119680/depression-lab-animals). Like so many other things in life, I generally avoid thinking about all these creatures bred to suffer.
  21. A golf buddy of mine invented what seemed like a miracle cure for severe depression--it worked almost instantly and had no side effects. Clinical trials were amazing. In effect, it was side-effect-free ketamine. A big drug company, Allergan (maker of Botox), bought his company and the rights to the drug for 560 million dollars. (He now plays golf at clubs that are way beyond my means, but that's another story.) And then Allergan just shelved his drug, never released it. They gave reasons why, but the suspicion has been the usual one -- maybe a drug company that already had two antidepressant medications for sale wasn't really interested in undercutting the market for those. The first tests of my friend's drug were on mice, and he explained to me how mice were bred for depression. In fact, he said more than once that mice were more reliable subjects for testing depression drugs than people, because the placebo effect in humans testing depression drugs is usually so high that you can't really tell whether anything is actually working. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4172306/) I used to talk to my friend about CH, and even asked whether one of his labs could make BOL (no). He once said to me that one of the big problems with developing drugs for CH or other "headache" conditions is that "You can't breed mice to have cluster headaches." If you could, he said, you would just keep testing things on those rats with CH until you found something that worked, and then develop it. (Rats are bred with predispositions for lots of medical conditions, including propensity for obesity, diabetes, and cancer.)
  22. Fascinating. And then there's BOL-148, just sitting out there waiting . . . .
  23. Since we're talking D3 here, you might want to consider the anti-inflammatory "full monty" that Batch has recommended in critical situations: QUOTING HERE FROM A POST BY BATCH: "The Antihistamine Full Monty is a collection of supplements with antihistamine properties that include 3 grams/day each of Turmeric (Curcumin), Resveratrol, Quercetin and Omega-3 fatty acids. It also includes 200 mcg/day Selenium, 8 grams/day vitamin C and 10 mg/day Melatonin taken at bed time. I buy the bulk powdered vitamin C in 1 Kg bags and stir 2 level teaspoon measures in 8 ounces of water and take sips all day until it's gone by bedtime. This is the least expensive form of vitamin C and dosing throughout the day is best as our kidneys filter vitamin C rapidly. I realize this is a boatload of pills to take, but the Full Monty is proving to be very effective in achieving a CH pain free response. Most CHers respond to the Antihistamine Full Monty during the first week. When you've experienced a sustained CH pain free response for at least a week, you can lower the dose of the first four supplements to 2 grams/day. I'd stay at that dose for at least two weeks then taper the dose down to 1 gram a day. You can skip the selenium and melatonin at that point, but I'd still take at least 4 grams/day vitamin C as it's so important for good health." Back to me: Red eyes are definitely a possible Covid symptom. You can just google [covid red eye] and see plenty of reports about that. And severe headaches are also a common Covid symptom. So it could be that that is what this is all about (fingers crossed). I'd be careful about increasing your verapamil, for three reasons (these are not hugely strong reasons, so you might decide to do it anyway, but maybe they are worth considering). (1) it's generally not considered a good idea to increase verap dosage without a doctor's involvement; (2) while that level might not, or even probably wouldn't, affect busting, the lower the better just for better assurance of full busting results; (3) as with point (1), it's my general understanding that it might not be wise to go up a notch on verap dosage and then go down when the crisis has passed. Could you do a SPUT (small piece under the tongue) if you get hit, or even as a possible preventive? It's my understanding that one SPUT, just a pinch of MM, can stop or reduce an attack but won't interfere with an upcoming bust. That could also be a chance you don't want to take, so I'm just throwing it out.
  24. @xxx (Please see above) (xxx is Batch's handle here.)
  25. I don't think anyone can confidently answer this question, but it won't do you any harm to try. And you can get seeds expressed to you from https://www.shamansgarden.com/p-251-rivea-corymbosa-seeds-ololiuqui.aspx (Some years back, I asked three seed suppliers about storage. None recommended freezing; all recommended a cool dark place; all said that six months was probably the max before potency diminished. However, I'm not really sure that they actually know, and it is of course in their business interest to put a shorter duration than might be true (if they know).)
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