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CHfather

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Everything posted by CHfather

  1. CHfather

    Emgality

    ddove, of course, as FT says, you'd be a lot better off with oxygen as an abortive, but at least please consider splitting your sumatriptan injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  2. CHfather

    Emgality

    Yep. Glad to see that about the DHE! I've read people here talking about good results from DHE infusions, but know nothing about that.
  3. CHfather

    Emgality

    I've seen a few saying 75mg 3/day (225/day total) would be the high dose.
  4. CHfather

    Emgality

    Hoping you are getting closer to success, Siegfried. I have wondered why Indo, but not other anti-inflammatories, is the best treatment for hemicranias. Found this today, which partly resolves my curiosity about that: "Indomethacin is one of the cyclooxygenase 1 inhibitors with the highest penetration rate in the blood-brain barrier.1 Indomethacin, but not other NSAIDs (ie, naproxen and ibuprofen), was found to inhibit nitrous oxide-dependent vasodilation. Other medications that could be considered for HC include topiramate, lamotrigine, naproxen, lithium, onabotulinumtoxinA, and melatonin."
  5. CHfather

    Emgality

    @EyecePick, thanks for letting us know. I sure hope this helps you. Same to you @Siegfried. I would add that while it is indeed very unusual for headache to respond to both triptans and indomethacin, it might not be completely unheard of. Table 1 here shows that a small percentage of people with PH did respond to triptans, at least to some extent: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5519518/ Can't say that those people also responded to Indocin, but the fact that some hemicrania patients responded to sumatriptan as an abortive, and one achieved full relief, at least seems to mean
  6. Just a small thought about this. As tank pressure levels get lower (as you have used more of the O2 in the tank), there comes a point for many people when O2 loses its effectiveness. Our solution has been to switch to a new tank, but turning up the lpm rate on your regulator, if you're able to do that, can also have a positive effect.
  7. You can order a test kit online, but I think you then have to mail in a blood sample and they give you your results online. In my daughter's case, the sample was a drop of blood from a pricked finger onto a piece of paper that was sent in. For example: https://www.everlywell.com/products/vitamin-d-test/?utm_source=google&utm_medium=cpc&utm_campaign=vitamin_d&gclid=EAIaIQobChMIupm8gPrA5gIVGuDICh1xiQcPEAAYAyAAEgKO3PD_BwE I don't think it was this one she used -- just an example.
  8. This isn't Jilly from Philly, is it (a member from long ago)? That's a horrible prescription you got. Gabapentin might help, but it's not a first-line prescription and most people feel crummy from taking it (and 1800mg is a lot). Sumatriptan pills basically don't help, and the verapamil is too low, as BOF said. Prednisone taper would have made sense to cut the pain for a while. And your doctor has not been looking very hard for a medical O2 provider -- there are plenty of them in Philly and as auto' said, they have to supply you if you have a prescription. As auto' said, google [me
  9. CHfather

    Emgality

    I agree with you that hope is always low-key, but I will hope along with you. In what I have read about Indomethacin, recommended dosing is all over the place in terms of both quantity and duration. Do you mind saying how much you're taking? You're taking it along with something to protect the stomach lining (a proton pump inhibitor or something else), I imagine. Have you looked at octreotide as an abortive? I've seen it listed many places as an alternative when triptans aren't working, but I don't think I've seen anyone here who actually has used it. But then again, maybe it'll t
  10. Thank you for taking the time to post this. It seems like folks in Florida often have challenges with getting O2 (even when it has been prescribed). This is a big help.
  11. CHfather

    Emgality

    I'm so very sorry to read all this EyecePick. You know your way around all this, so forgive me for this suggestion, but if oxygen properly administered doesn't work, and sumatriptan barely works, and other CH treatments also don't work, is it possible that you have hemicrania continua? I'm sure you know this, but hemicranias look like CH, but typically don't respond to CH treatments, but do respond to the drug Indomethacin. I would only ask in addition whether you've tried the D3 regimen. Grabbing at straws in the hope that something might be found for lasting help.
  12. CHfather

    Emgality

    Inhibits absorption of CGRP. https://www.emgality.com/what-is-emgality/how-it-works People with CH take higher doses than people with migraines.
  13. I only have about 25 questions about this research, but it's new and it's substantive, so here it is. https://www.docguide.com/safety-and-efficacy-sphenopalatine-ganglion-stimulation-chronic-cluster-headache-double-blind-random?tsid=5 Safety and efficacy of sphenopalatine ganglion stimulation for chronic cluster headache: a double-blind, randomised controlled trial; Goadsby P, Sahai-Srivastava S, Kezirian E, Calhoun A, Matthews D, McAllister P, Costantino P, Friedman D, Zuniga J, Mechtler L, Popat S, Rezai A, Dodick D; Lancet Neurology 18 (12), 1081-1090 (Dec 2019) B
  14. CHfather

    Emgality

    Hope the no headache today is a good sign -- and thank for posting. Getting a solid perspective on how valuable Emgality might be seems important.
  15. You can stop despairing, Emmalou. The target nmol/L is around 200. In some places, including the US, it's measured in ng/mL, and with that measurement, the target is around 80. At 86 nmol/L, you are right about where most people start.
  16. I can't say whether you have CH or not (as you note, you have some typical characteristics such as the regularity of the attacks and their location and nature, but not all of the physical symptoms), but here are a few answers to your questions. Amitryptiline (Elavil) is sometimes used to treat CH. In a 2015 study, the results were like yours -- pain reduction but not complete elimination. It might have been prescribed to you also because of the stress in your life that you mention. It's not a first-line treatment for CH, but it's not completely unusual. As you say, 15mg is a pretty low dose.
  17. As preparation for the big reveal, folks might want to put the word parasite into the search bar at the top of the page. The post-reveal follow-up assignment will be "Compare and contrast …."
  18. Here's a link to the JAMA article about high-flow O2: https://jamanetwork.com/journals/jama/fullarticle/185035
  19. This is from the American Headache Society, 2018, regarding Indomethacin for hemicrania: >>>Indomethacin (Indocin) is a medication that fights inflammation, similar to ibuprofen or naproxen, but indomethacin is unique in that it is the only medication that functions as a key in the lock to stop HC. Usually indomethacin is started at a low dose, such as 25 mg, taken 3 times per day with meals. The dose is then increased until the head pain is relieved. Doses can sometimes reach 75 mg 3 times per day or more before the pain is fully blocked. When taking this medication, stomach prote
  20. Gosh, it's sickening to read this over and over, year after year. First of all, he can prescribe it whether or not you can get your insurance to cover it. You do have the option of paying out of pocket. Secondly, sometimes insurance coverage is a breeze, and sometimes it can be a battle. My belief is that most doctors -- including most neurologists -- don't know how to write a prescription for O2 for CH, or they have no patients with high-flow oxygen and don't know what to expect, so they make up excuses for not prescribing it. The only alternative explanations are that that they either h
  21. You can inject it in your abdomen if you have a little fat there to grab (I'd be happy to loan you some). But as jon' says, it's a short needle -- the autoinjector goes in only about a quarter of an inch. However, if you use the method described here for splitting doses -- https://clusterbusters.org/forums/topic/2446-extending-imitrex/ -- you'll be injecting by hand, and you'll probably be better able to pick the spot where you want to inject. Virtually no one needs 6mg; most people only need 2 or maybe 3. (Again, as jon' says, getting it prescribed in vials so you can more easily measu
  22. CHfather

    Hello!

    So, here's the first line of a long page of pharmaceutical information about Maxalt: "Rizatriptan is used to treat acute migraine headaches in adults and children 6 years of age and older. It is not used to prevent migraine headaches and is not used for cluster headaches." I can't think of an injectable preventive (as you mention) that is typically used for CH, except for the new drug Emgality. Sumatriptan (Imitrex) is an injectable abortive. Verapamil is not likely to have any significant effect after a week (it takes time to get into your system), particularly at that very low dosage. Wit
  23. D'K, What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached? And very few people here have the clout with a doctor to get an off-brand prescription. This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and
  24. You can get overnight delivery on a non-rebreather mask from Amazon, I'm sure. But that's a lot of $ for one day's use. You can get masks without a prescription, so maybe you could find one at a medical supply store. Some people have had success with O2-related things by asking at places that carry O2, so it's possible that a nearby firehouse, EMT station, hospital, walk-in clinic, etc., might give you one or sell you one. They probably pay about two bucks or less for them, so it's not a big deal if they're willing. I feel like I've read that some people in a pinch have actually sucked
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