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CHfather

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Everything posted by CHfather

  1. mike', I know this wasn't your question, but what are you doing to treat your CH? Maybe if your attacks were more under control it would help your frame of mind at least a little.
  2. Do the best you can to insist on a prescription for oxygen. I know you have read that in the post I linked you to, but I want to emphasize it. Do your best. Maybe bring this with you: https://jamanetwork.com/journals/jama/fullarticle/185035. Good luck!
  3. And/or . . . see if you can get sumatriptan in vials, and syringes, so you can self-measure. The 6mg in the autoinjector is way more than you need--2mg or 3mg is all that's needed. There's also the 3mg Zembrace (in the US) injectable sumatriptan.
  4. You are right, Denny! I just PMed you a screenshot of the $223 combo, but there doesn't seem to be any other order in the whole realm of sizes, colors, and styles that comes up that way.
  5. I admit to being an overly large guy, but when I clicked on the size I intended to order, the price changed from $20 to $223! I'm sure it was supposed to be $23, but I was reluctant to proceed with my order. There is no place at the website to leave feedback, so maybe you can get this message to her.
  6. If you are looking for these, you might start here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The section called "'Treatments' without O2 or other meds" might be most relevant, but maybe parts of the rest of it will be helpful. Not sure what kind of advice you're looking for, but the general principles of "busting" with psilo or other substances are included at the end of that file I just linked you to (the same information appears if you click on the "New Users..." thing at the blue ribbon at the top of the page).
  7. Several people here have reported that it is helpful for them. The vitamin D3 regimen has also shown considerable success for migraines. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  8. CHfather

    Shadows!

    Interesting. Thanks.
  9. Interesting. Thank you! And any study that inclines toward greater acceptance of LSD as a therapeutic agent is to be celebrated.
  10. Back in 2016, a fellow wrote this: >>.I mix and chug down: 1 Teaspoon of baking soda 1 or 2Lime(s) (Preferably organic) 1 cup of filtered water (Don't use tap water) Not only I have been able to reduce the intensity of an attack, but I have been able to abort it. It's worked several times.<<
  11. Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL."
  12. Here's an overview of CH treatments. It also has a link to the D3 regimen. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I'm not completely certain that what she has is CH, but you might as well try the recommended treatments and see what happens. Maybe it won't be too hard for her to get her hands on a cylinder of O2 with a non-rebreather mask and a regulator that goes up to at least 15 lpm? (She could try 12lpm if that's all that's available.) Thank you for being there for your sister!
  13. I don't think they're "intractable" unless they fail to respond to all conventional treatments, and I'm pretty sure that's not the case. It's possible that you won't have another cycle for a long time, or at all. More likely that you will, of course. Quite possible that the various CGRP meds will be better developed for CH by the next time you have a cycle, or another effective treatment will have been discovered/approved, and it will turn out to be easier for you than it has been for all the previous generations of people with CH. For a general overview of ways to treat CH, you might w
  14. igdc, this is a kind of guide to the treatment options we're most familiar with. Maybe you'd want to look it over, just for preparedness' sake: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It doesn't address the new CGRP pharmaceuticals (Emgality, Aimovig, Ubrelvy, and others), which might be worth trying. And people are always mentioning new things that seem to have helped them. Do not underestimate the potential power of busting!!!!! It's discussed at the end of the post I just linked you to, and also under the blue "New Users..." banner at the top of
  15. Thank you for this information.
  16. Thank you for keeping us informed. Hoping you'll have some good (or great) news.
  17. I hope you get some good help with getting O2. I would also check in at the Facebook group "Cluster Headache (trigeminal autonomic cephalagia)". A pretty strong international representation there. There's a link to D3 regimen basics in this post, which might also have some other ideas for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  18. Myhed', you might want to look into the condition called Horner's syndrome, I think. People with CH can have it outside of their cycles. The main characteristics, as listed Mayo Clinic are droopy eyelid (ptosis), a persistently small pupil (miosis), slight elevation of the lower lid (sometimes called upside-down ptosis), sunken appearance to the eye, and little or no sweating (anhidrosis) either on the entire side of the face or an isolated patch of skin on the affected side. As I understand it, though, Horner's is rarely painful unless there's a more serious underlying condition. I th
  19. Seigfried, I was just reading this for another reason, and saw this info about an apparent way of treating HC. Maybe it doesn't fit for PH, but I felt I should mention it. https://jmedicalcasereports.biomedcentral.com/articles/10.1186/s13256-019-1986-y ".... Patient 1, an 82-year-old Caucasian woman, presented with hemicrania continua with a partial Horner’s syndrome that was present for 2 years. She was unable to take indomethacin as she was on anticoagulation. After a C2–3 diagnostic facet injection, not only did she become pain free but her ptosis completely resolved. She then u
  20. Siegfried, would it be worth it to try any of these supplemental or alternative treatments? https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf "There are alternative medications that can replace indomethacin if needed, but unfortunately they are not perfect for treating hemicrania continua. Sometimes they can supplement a lower dose of indomethacin if that is all that is tolerated. Melatonin is a natural hormone with a chemical structure similar to indomethacin. A few people have had a complete response for their HC with melatonin alone
  21. This is a study of people who developed CH shortly after head trauma (with seven days). (Nothing at this link that isn't here.) https://www.docguide.com/new-insights-post-traumatic-headache-cluster-headache-phenotype-cohort-study?tsid=5 New insights in post-traumatic headache with cluster headache phenotype: a cohort study; Grangeon L, O'Connor E, Chan C, Akijian L, Pham Ngoc T, Matharu M; Journal of Neurology; Neurosurgery; & Psychiatry (JNNP Online) (May 2020) OBJECTIVES To define the characteristics of post-traumatic headache with cluster headache phenotype (PTH
  22. devon' is right. I was wrong. An M tank holds about 3000 - 3400 liters (not 1700, as I had written). Divide that range by 20 and you get 150-170 minutes of O2 at 20lpm.
  23. What the doctor wrote the script for is really irrelevant to your O2 use. The lpm settings you use from the regulator that you put on the tank are the only factors that affect how much O2 you are using. An M tank holds about 1700 liters of O2. That means that if you use a setting of 20 liters per minute, you will have about 85 minutes of O2 in the tank (1700 liters in the tank being used at 20 liters per minute; 1700 divided by 20 = 85). The higher your lpm settings, the faster you will go through the oxygen that's in the tank, but that is not affected by anything related to the script tha
  24. kat', This file has answers to your questions: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ In brief: Typically, welding tanks are bought, not rented. They have no reason to ask you any questions; there are no legal restrictions for getting welding O2. If they do ask, they are just chatting. In the file, there are some suggested possible answers if you are asked. Plenty of women weld, or use welding O2 for other things, such as art projects. https://www.youtube.com/watch?v=TeaMj2m_Wj4 My wife and daughter both get my daughter's welding O2 regularly.
  25. kat', sooooo happy to read this. You want an M tank or an H tank (plus you want to keep your smaller tank for portability). Those are the big ones. The big tanks are heavy, so you might also want a stand, or particularly a rolling stand if you have to move them. Now that you know more about O2 working for you, you can consider using welding O2, too, if your supplier is not cooperative. Since they make more money when they provide you a larger tank (or tanks), and have less hassle from having to constantly replace the smaller tanks, you'd think they'd be interested. If you get a b
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