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Everything posted by CHfather

  1. 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.
  2. 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.
  3. 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 [medical oxygen Philadelphia] and start calling. Welding O2 is a possibility, but you shouldn't need it. There must be some suppliers that are familiar with CH, but when you call, tell them what you need -- tanks/cylinders, not a "concentrator"; a big tank ("M" or "H" tank) for home and at least one small tank (E tank) for portability; a regulator that goes up to at least 15 liters per minute (you need one for each type of tank because the regulators are different for big tanks and small tanks); and a non-rebreather mask. The prescription should have specified a flow rate for the regulator(s) and the non-rebreather mask, but I don't have enough confidence in this doctor to believe s/he did it right. You should start the D3 regimen right away -- and either find a better doctor or educate the one you have. Quite a bit of info here, including a link to the D3 regimen: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  4. CHfather


    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 turn out that you do have CPH. (Also reminding you again about the D3 regimen.) Fingers and toes crossed for you.
  5. 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.
  6. CHfather


    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.
  7. CHfather


    Inhibits absorption of CGRP. https://www.emgality.com/what-is-emgality/how-it-works People with CH take higher doses than people with migraines.
  8. 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) BACKGROUND Chronic cluster headache is the most disabling form of cluster headache. The mainstay of treatment is attack prevention, but the available management options have little efficacy and are associated with substantial side-effects. In this study, we aimed to assess the safety and efficacy of sphenopalatine ganglion stimulation for treatment of chronic cluster headache. METHODS We did a randomised, sham-controlled, parallel group, double-blind, safety and efficacy study at 21 headache centres in the USA. We recruited patients aged 22 years or older with chronic cluster headache, who reported a minimum of four cluster headache attacks per week that were unsuccessfully controlled by preventive treatments. Participants were randomly assigned (1:1) via an online adaptive randomisation procedure to either stimulation of the sphenopalatine ganglion or a sham control that delivered a cutaneous electrical stimulation. Patients and the clinical evaluator and surgeon were masked to group assignment. The primary efficacy endpoint, which was analysed with weighted generalised estimated equation logistic regression models, was the difference between groups in the proportion of stimulation-treated ipsilateral cluster attacks for which relief from pain was achieved 15 min after the start of stimulation without the use of acute drugs before that timepoint. Efficacy analyses were done in all patients who were implanted with a device and provided data for at least one treated attack during the 4-week experimental phase. Safety was assessed in all patients undergoing an implantation procedure up to the end of the open-label phase of the study, which followed the experimental phase. This trial is registered with ClinicalTrials.gov, number NCT02168764. FINDINGS Between July 9, 2014, and Feb 14, 2017, 93 patients were enrolled and randomly assigned, 45 to the sphenopalatine ganglion stimulation group and 48 to the control group. 36 patients in the sphenopalatine ganglion stimulation group and 40 in the control group had at least one attack during the experimental phase and were included in efficacy analyses. The proportion of attacks for which pain relief was experienced at 15 min was 62·46% (95% CI 49·15-74·12) in the sphenopalatine ganglion stimulation group versus 38·87% (28·60-50·25) in the control group (odds ratio 2·62 [95% CI 1·28-5·34]; p=0·008). Nine serious adverse events were reported by the end of the open-label phase. Three of these serious adverse events were related to the implantation procedure (aspiration during intubation, nausea and vomiting, and venous injury or compromise). A fourth serious adverse event was an infection that was attributed to both the stimulation device and the implantation procedure. The other five serious adverse events were unrelated. There were no unanticipated serious adverse events. INTERPRETATION Sphenopalatine ganglion stimulation seems efficacious and is well tolerated, and potentially offers an alternative approach to the treatment of chronic cluster headache. Further research is need to clarify its place in clinical practice.
  9. CHfather


    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.
  10. 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.
  11. 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. You can start the D3 regimen without the blood test. Measuring D levels in the blood is part of a standard bloodwork panel, so it might show up in the tests your doctor ordered. I'm going to bet that Batch will be here soon enough to show you the simplified version of the regimen, or someone else will (or I will when I have more time). The most important abortive treatment for CH is oxygen. Between the D3 regimen and O2 -- and busting, if you choose to try that -- it's very likely that you can avoid being on any substantial medications for the rest of your life, as you fear. You should also have something, most typically injectable sumatriptan, for breakout pain if you experience that. Verapamil might help you as a preventive (D3 is better for most people, and healthier), but it takes a while (a week to 10 days, maybe) to take effect, and usually the initial dosages aren't high enough to be fully effective. I'd urge you to look over this file and pursue the links to get a pretty full sense of the treatment landscape, including the basics of busting: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  12. 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 …."
  13. Here's a link to the JAMA article about high-flow O2: https://jamanetwork.com/journals/jama/fullarticle/185035
  14. 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 protection against ulcers and bleeding is generally required. Proton pump inhibitors, such as omeprazole or lansoprazole, or H2 receptor antagonists, such as ranitidine or famotidine, can provide such protection. Most people tolerate indomethacin, particularly in lower doses. Unfortunately, others are unable to tolerate indomethacin at all, or in the doses needed to relieve their pain.<<< https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf I'm not saying you should be taking it or shouldn't; just that this seems to be what's needed to give it a reasonable test (and possibly tolerate it).
  15. 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 have no idea about the suffering of CH and/or don't give a crap about it and/or think it's fine to damage you physically and financially with Trex instead. In any event, you can try to pursue the prescription, or you can set up a system with welding O2, as discussed in the file I linked you to. I'm a person who has a lot of curiosity about Indomethacin. If it's not too much to ask, how much were you prescribed? And would you please check back in to report on whether it's helping you? You know, I imagine, that Indomethacin is not typically prescribed for CH (because it almost never helps CH), but for conditions that look like CH but aren't. It's hard on the gut, so it should be taken along with something to protect the stomach lining (Prevacid, Prilosec, that kind of thing). It's sometimes prescribed early in treatment to either rule out those other conditions (hemicranias) or rule them in. I'm usually an advocate for Indomethacin, but I gotta say you sure sound like you have CH.
  16. 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 measure out your own doses is a nice way of doing it.) Are you doing all the sensible stuff that makes it so your need for Trex will be rare? Oxygen, D3, etc? Considering busting? This file might be helpful for an overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  17. CHfather


    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. With your relatively short cycle, I would think that a course of corticosteroids (prednisone, usually) would be the best way to handle it for now. In the long run, D3 and oxygen (and perhaps other things, including busting) will be the best preventive and abortive strategies. I would urge you to read this post and the related links in the post so you have a better sense of standard treatments and other options, including busting: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It's a little puzzling to me that your experience seems to have been that energy shots and melatonin have possibly made it worse. A small percentage of people have reported here that one or another of them seemed to make their attacks worse, so it's not impossible at all that they both would have that effect for you. Like I say, it's just a little puzzling to me. Edited to add: Just saw BOF's latest post. The information at the blue banner, about busting, is reproduced verbatim at the post I linked you to, so you can read it there.
  18. 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/or attacked. He put it out there, and some other people tried it, and it worked for them as it had for him. They really did have to "BELIEVE," to use your word, because it involved obtaining and consuming illegal, hallucinogenic substances. Whatever you have to offer has much better odds of being tried and adopted than that did, if it works. So, I say with no real disrespect, you either have to put up or shut up. That's how it works here. I doubt that anyone is going to beg you.
  19. 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 O2 from tubing attached to a regulator, without a mask. I'm not recommending that, but maybe someone will chime in. You'd need to get tubing that attaches to your regulator, of course. You should be splitting your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Don't know if you need it but more about O2 here https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ and in here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  20. You can start by trying to get an O2 prescription from a doctor and then having it filled by an oxygen supply company, or you can set up a system using welding oxygen. If the first route is straightforward and affordable, it's probably the sensible way to go (if you have a competent doctor who will prescribe O2; and if you have insurance to pay for the doctor visit and the O2, or you can pay out of pocket for those things), but welding is simpler and ultimately no more expensive, particularly since you are probably going to pay for a higher-lpm regulator even if you get one from the medical O2 supplier. Welding O2 is discussed here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ There's a lot about O2 here, plus some things aside from O2 that might help you until you get O2: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  21. There are a bunch of possibilities in here, in the section "Treatments without O2 . . . ": https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  22. That's a nice story. Glad it worked out. There are several threads here about Emgality. You can find them by typing emgality into the search bar at the top right of any page. Mixed results, but it's good to see that you got the right prescription (three injections). We will all look forward to hearing from you how it works for you.
  23. You're keeping this cure a secret, or are you going to tell us what it is? I can guarantee you that you will be met with great skepticism, but the only way to test it beyond yourself is to describe it and see if anyone tries it with the same success you had.
  24. Well, the original report, from authors at Harvard Medical School (at least that's where Halpern was, I don't know about Pope, and Sewall was either at Harvard or Yale then), was here: https://www.ncbi.nlm.nih.gov/pubmed/16801660. You could certainly argue that Yale would not mess with research into psilo and CH without a sound basis, and Yale Medical School is now leading a clinical trial into the effects of psilo on CH. https://clinicaltrials.gov/ct2/show/NCT02981173
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