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CHfather

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Everything posted by CHfather

  1. CHfather

    My insurance doesn't cover oxygen - any tips?

    The nice thing about 5-Hour Energy is that it packs a lot of caffeine (twice as much as a RedBull) but can be chugged down quickly. Plain strong coffee is enough for some people (keep it ready in the fridge). 10 minutes is a reasonably quick abort. Caffeine and/or the special mask (ClusterO2 Kit) will probably speed that up. You might not get a whole lot faster abort with 25lpm, but you had said that 15lpm didn't really keep pace with your breathing, so it seems reasonable to think that if you can breathe at your most effective pace, you could cut off some additional time. Is it that you now can't use any triptan, or just that you can't take as much as the Imitrex injector (6mg)? It's always good for anyone to stay away from the triptans as much as possible, but you might want to be aware that 2mg of sumatriptan is enough to stop attacks for most people, and there are ways of using only that much. For example ... https://clusterbusters.org/forums/topic/2446-extending-imitrex/ There are a few additional ways of dealing with an attack in this post, under "Other 'Treatments'...." https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Also some info there about the D3 regimen, which as others have said is very much worth pursuing.
  2. CHfather

    I am new here

    Marlon, for an overview of treatment possibilities, you might take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  3. CHfather

    My insurance doesn't cover oxygen - any tips?

    Welding O2 is an option many choose. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ You might not use a lot more O2 with a 25lpm regulator, since you'll probably be aborting faster with it. Are you doing some caffeine as you start on the O2?
  4. CHfather

    Baclofen

    Thanks for keeping us updated about this.
  5. 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.
  6. CHfather

    Toronto Cluster Advice

    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!
  7. CHfather

    Imigran Injections Discontinued?

    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.
  8. CHfather

    Cluster Headache Awareness T Shirts

    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.
  9. CHfather

    Cluster Headache Awareness T Shirts

    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.
  10. CHfather

    Toronto Cluster Advice

    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).
  11. CHfather

    I have migraines

    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
  12. CHfather

    Shadows!

    Interesting. Thanks.
  13. 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 collaborating on a Phase 2 clinical trial evaluating LSD for the treatment of cluster headaches at University Hospital Basel's Liechti Lab. The Phase 2 trial began recruiting patients in early January and has commenced treating patients with LSD. MindMed is the leading neuro-pharmaceutical company for psychedelic inspired medicines and previously formed an ongoing R&D collaboration with the University Hospital Basel's Liechti Lab, the leading global clinical research laboratory for LSD, to evaluate multiple therapeutic uses of psychedelics and next-gen psychedelic therapies. This new development is part of the collaboration and Dr Matthias Liechti is serving as principal investigator of the clinical trial. Cluster headaches, also known as "suicide headaches," due to the severity of the pain caused are often viewed as one of the most profoundly painful conditions known to mankind. The pain occurs on one side of the head or above an eye and can last for weeks or months. Studies have demonstrated increased suicidality associated with patients experiencing cluster headache attacks. Non-clinical and anecdotal evidence suggests LSD can abort attacks and decrease the frequency and intensity of the attacks. There is a need for new treatment approaches for cluster headaches as current available medications often mismanage cluster attack periods. The Phase 2 trial is investigating the effects of an oral LSD pulse regimen (3 x 100 µg LSD in three weeks) in 30 patients suffering from Cluster Headaches compared with placebo. The study is a Double-blind, randomized, placebo-controlled two-phase cross-over study design. MindMed Co-founder & Co-CEO JR Rahn said "As we continue on our mission to discover, develop and deploy psychedelic inspired medicines, we are very encouraged to bring this potential treatment for cluster headaches using LSD out of the shadows and evaluate its efficacy based on clinical research standards with the Liechti Lab." MindMed's collaboration will assess if there is clinical evidence for a future commercial drug trial through the FDA pathway at a later date. Treatments for cluster headaches may potentially qualify for an Orphan Drug Designation and be eligible for certain development incentives provided by the FDA for rare diseases. Liechti Lab and MindMed intend to learn how they can make the administration of LSD more targeted for cluster headache patients through this Phase 2 trial and future clinical trials. As part of the collaboration with UHB Liechti Lab, MindMed gains exclusive, global use to all data and IP generated in the Phase 2 trial of LSD for cluster headaches.
  14. CHfather

    LSD and pain management

    Interesting. Thank you! And any study that inclines toward greater acceptance of LSD as a therapeutic agent is to be celebrated.
  15. CHfather

    lightning-fast effect - but why and how?

    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.<<
  16. CHfather

    Question about D3 + other

    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."
  17. CHfather

    My sister, I"m helpless

    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!
  18. CHfather

    Waiting on my 2nd cycle

    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 want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ You'll probably forget most of what's in it, but if/when you do have another cycle, you'll know it's there. Asking myself if there's anything you should do now. I'd say to seriously consider starting some version of the vitamin D3 regimen (there's link in the post I linked you to above), so you are building up your D levels. As far as anyone knows, there aren't any bad side effects from following that regimen in a disciplined way. You don't say whether you received any prescriptions (maybe the diagnosis came after your cycle was over). You will read about triptans in the post above: they have their uses. Because the number of triptan devices (injectors or spray containers) that you can get at any time is limited, more than a few people fill their prescriptions for triptans when they are out of cycle so they have a "stockpile" when/if they need them. This is just something to consider. They're expensive. And you might never need them, or never really want to use them.
  19. CHfather

    Fall is coming

    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 each page.
  20. CHfather

    Diagnosis

    Thank you for this information.
  21. CHfather

    Nurtec medication?

    Thank you for keeping us informed. Hoping you'll have some good (or great) news.
  22. CHfather

    the joy of CH

    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/
  23. CHfather

    Constantly drooping eye

    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 think your symptoms probably are not a sign that your CH is returning (maybe others will correct me about that), but I think you should have them checked out by a doctor to rule out other causes. An opthalmologist, I would imagine.
  24. CHfather

    Paroxysmal Hemicrania -> Day 4

    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 underwent a radiofrequency facet neurotomy with complete alleviation of head pain ...."
  25. CHfather

    Paroxysmal Hemicrania -> Day 4

    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, but more often they have been able to get relief with a lower dose of indomethacin while taking the melatonin. Alternative medications that may replace indomethacin, if it cannot be taken at all, include gabapentin, topiramate, verapamil, and cox-2 inhibitors (anti-inflammatories less likely to cause stomach bleeding). Even onabotulinumtoxinA, commercially known as Botox (Allergan, Irvine, CA, USA), has been tried in cases where other options failed or were not tolerated. Nerve blocks, injected at the back of the head on the same side as the pain, can be performed with long-acting anesthetics. Rarely, a nerve stimulator is placed with leads extending over the back of the head or neck, providing continuous low-level stimulation to the area."
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