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CHfather

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Everything posted by CHfather

  1. Scott -- Sorry that's happening and really unable to answer you main question. I did want to mention that when oxygen level in a tank gets lower, it can become ineffective unless you increase the flow rate (or change to a new tank). Just thinking that might be a reason why your O2 isn't helping you right now. Hope it might help.
  2. B'T', I will recommend that you look this over. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It has some links (such as to the D3 regimen) and some ideas about things you can do (such as energy shots and Benadryl) while you're acquiring what you need -- oxygen being, indeed, as kat' said. foremost among those things. The basic info about busting is also there (same as what you would see under the blue "New Users ..." banner at the top of each page). The new medication, Emgality, has helped some people, so when you get a doctor appointment, you might ask to try that. Regarding doctors, most here have found that doctors at headache centers are much better at prescribing that other doctors, including general neurologists.
  3. M-60 takes a 540 regulator. It's a fairly big tank, weighing more than 20 pounds empty (an E weighs about 7 pounds empty).
  4. Short answer to your question is probably not, since it's pretty much a myth that turkey is full of tryptophan. There's just as much in chicken or beef, and more in nuts and cheeses. However, tryptophan is much studied in relationship to CH, in part because tryptophan levels are higher than normal with people who have CH. You can find lots of studies by googling [tryptophan cluster headache]. Here's a recent one: https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-016-0620-2 Most of them are way too complex for me. For some reason (I think because tryptophan affects serotonin), back in the day people took tryptophan pills or tryptophan precursor pills to try to prevent CH attacks. From what I have read about that, they had no real effect. Turkey wasn't listed in the "Triggers" document in the Files section here, or in the follow-up posts. All that doesn't mean you're not onto something. It could be that turkey affects you in that way, but also, maybe there's something you typically eat when you have turkey that is affecting you. For example, stuffing mix might have a lot of MSG in it, or fried onions (as many people put on "festive" dishes) can be full of MSG, as can the chicken broth or soups that some people use at special times of the year. MSG is a trigger for many. Or it might be one of the other food triggers listed in that post. (Small related personal story. I suffered really brutal attacks of pancreatitis with no recognized cause. They would come, stay for anywhere from a day to several weeks, and then go away. That went on for many years. One night I got an attack after having eaten some very bland Chinese food. I realized it wasn't spicy food . . . and that's when I could track back over the course of all those years to see that it was MSG that had been causing those attacks. Very unusual, but not unheard-of. The worst part for me was that after the first really bad attack, the doctor gave me the wise advice to go on a diet of clear liquids. So I ate canned chicken soup, and every time I did, I got an awful attack. Many canned chicken soups, like the ones I was eating, are full of MSG.) So keep looking.
  5. nate, No time like the present to get things lined up and in gear. D3 regimen, oxygen, etc. Busting (see blue "New Users" banner).
  6. 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/
  7. 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.
  8. CHfather

    Emgality

    I've seen a few saying 75mg 3/day (225/day total) would be the high dose.
  9. 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." It's from a good recent article with good additional references: https://www.clinicalpainadvisor.com/home/topics/migraine-headache/hemicrania-continua-diagnosis-and-treatment/ (Melatonin is frequently mentioned in the literature as having a structure very similar to Indomethacin.)
  10. 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 that it's not impossible. And there is this one reported case of a woman who was thought to have CH and sumatriptan injections stopped her attacks within 15 minutes, but then it was realized that she had CPH and Indocin virtually eliminated her pain. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170242/ With all the complexities of diagnosis and treatment in this area, I'm disinclined to hold to any absolutes.
  11. 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.
  12. 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.
  13. 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/
  14. 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 turn out that you do have CPH. (Also reminding you again about the D3 regimen.) Fingers and toes crossed for you.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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/
  22. 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 …."
  23. Here's a link to the JAMA article about high-flow O2: https://jamanetwork.com/journals/jama/fullarticle/185035
  24. 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).
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