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Everything posted by CHfather

  1. jon' has covered the bases very nicely (as always). A doctor who thinks anyone's current cycle is going to be like their last cycle doesn't have much familiarity with CH. (I'd say the same about a doctor that doesn't prescribe oxygen.) You might benefit from getting to a headache center, if there's one near you. You might want to look at this overview, which has a lot of info about a lot of stuff, including ways to possibly stop hits without oxygen, and things you can try for shadows. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  2. There hasn't been much commentary here about "standard" HRT (hormone replacement therapy). I do remember one prominent member saying it had no effect on her CH. You can search for HRT (using "hormone replacement" as the search phrase) using the search bar at the top of each page. I know there will be a lot of comments from MoxieGirl, but her HRT was part of a male-female transition, so probably not relevant. Regarding shadows, here's a little from a post in the ClusterBuster Files. Ginger seems to be the most effective go-to for many. There is probably other advice in other posts. "Some people find that standard headache medicine such as ibuprofen helps with shadows, some find that caffeine helps (and Excedrin migraine tablets include both a headache med and caffeine), and some find that oxygen helps. Ginger seems to help many people (some also take it as a possible preventive). Tea is one way to take it. Slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it. You can add honey, sugar, etc. You can buy ginger tea, but make sure it’s real ginger. Crystallized ginger and real (strong) ginger candy are also good. Candy from Ginger People is strong. You can make your own crystallized ginger candy. Someone once posted “Ginger and honey on toast. Yum!” There’s apparently a Nut Bar that contains ginger and sugar. Ginger beer (non-alcoholic) has worked for some people." Can you get RC seeds (rivea corymbosa)? Legal to purchase and possess, but often very effective for busting. Are you doing the D3 regimen? As you might know, allergies (even ones you don't notice) can really kick up CH activity at unusual times. Have you tried some Benadryl? We can say more about these or other options, depending on your responses.
  3. Jeri, Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167). I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do. Maybe there's something here that meshes with what you have found. I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH). Unstable joints, bruising easily, some joint hypermobility and clicking.
  4. Prednisone works quite well to stop attacks for many people, but for most people that's only during the time that it's being taken, or even, for many, only during the time when the higher doses are taken. Some people find that if/when the attacks come back, they can be quite severe. The recommended prednisone dosage for CH is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks. If your cycle typically lasts a month and you get up to three weeks of relief, that seems possibly worth doing. Some people also get relief from the standard prednisone "dose pack," which is shorter. I don't think Emgality would be contraindicated with prednisone, but I don't really know. Reports here about Emgality are mixed, as snafu says, but you have to keep in mind that not many people are going to show up here reporting on something that worked for them. You can see comments about Emgality by putting the word Emgality into the search bar at the top right of any page.
  5. Thanks for this update, charles'. So glad that combo is working for you! Do you also have oxygen? Have you considered the D3 regimen? It would take a very long time to answer this question about those three meds individually, let alone in combination (I don't recall anyone who has taken that specific combo and only those three, but it could have happened, I suppose). Leaving side effects aside for the sake of discussion (but they can be significant), each of them has had successes and disappointments for people reporting here. If you want to see more, you could use the search bar at the top right of each page. There are not a whole lot of entries about cyproheptadine (Periactin) and not a huge number about amitriptyline (Elavil), but Verapamil is a whole other topic. Lots of people have tried it, some with very good results (often at doses that are considerably higher than what is typically prescribed). The Periactin is an antihistamine, and in the last few years, thanks mostly to Batch, it has been recognized that allergic reactions (even without symptoms) can fire up CH. Like I say, really too complex to try to discuss all this here. Have you talked to your doctor about this stop/start approach to taking the meds? I feel pretty confident that that is not really a good idea, at least with the Verapamil and probably also with the Elavil.
  6. The VNS device is gammaCore. https://www.gammacore.com/ By itself in typical circumstances, it doesn't work as well as an optimized O2 system. It supposedly has some effect when used as a preventive. I think you have to have a prescription to get it. Previously, and maybe still today, the first month was free but then $598/month after that, in the US. A 2021 evaluation within the UK National Health Service (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8611122/#:~:text=gammaCore reduces the frequency and,in the first 3 months.) "recommends routine adoption of gammaCore into the UK national health service," but presents these "key points for decision makers": gammaCore reduces the frequency and severity of cluster headaches but does not work for everyone. There is currently no evidence of a sustained long-term benefit. Treatment with gammaCore should therefore be stopped if patients do not experience any reduction in symptoms in the first 3 months. gammaCore was used alongside standard treatment, so decision makers should be aware that the possible benefits achieved with gammaCore are as a result of the addition of gammaCore to current standard treatment.
  7. It occurs to me, FWIW, that your doctor might have CH confused with the hemicranias (continua, paroxysmal), which have symptoms like CH and, indeed, most of the time do not respond to triptans.
  8. You're looking in the wrong direction.
  9. [Edit: I see that jon has just posted this same info about UpToDate .. .. ..] am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide. Physician's Desk Reference (PDF) perhaps? This, as all have said, is one crazy doctor. PDR, as suggested by Jeebs, might have the info that jon' mentioned (and as jon' said, any sane site will list triptans and oxygen). The most commonly used online reference/app by doctors is called UpToDate. Says here (https://nhcps.com/top-12-online-resources-for-medical-professionals/): "UpToDate is considered the go-to source for about 90% of US-based medical centers. A 118-facility study published on PubMed.gov found that most doctors and residents turned to UpToDate before any other resource."
  10. David', I don't think anyone knows for certain about either of the substances you're asking about. I think we generally suppose that gabapentin does not block busting. In some support of that, there's a post from a while back from a regular member that says: "Gabapentin works to treat my trigeminal neuralgia flare ups. Hasn't interfered with busting." I feel pretty sure that Nurtec doesn't block busting. Are you taking the gabapentin for CH? It's such an old, often ineffective, and unpopular (side effects) prescription that it feels like you could do a lot better, unless it's helping you and you aren't having significant side effects.
  11. I think it's just free to spiny, because it is covered by Medicare insurance.
  12. I know this could/should be in the "Conferences" section, but I rarely look there, so I figured I'd ask here. (Note that Bob W just posted down there that financial aid can be available!)
  13. I'd suggest you look in this file under the heading "Treatments without O2 . . . " https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Some of the abortive strategies might help you if you need them. I would say that after caffeine/energy shots, the most effective are inhaling cold air from an air conditioning vent, or some variation of the hot water strategy (feet in it; maybe whole body in it . . . ). I'm not sure what you mean by that. If you're out of it, that's one thing. But if you feel like you can't use more than two injections in a 24-hour period, maybe you could split an injection so you're using just 2 or 3 additional mg, not the whole 6mg. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  14. The only two times in my adult life that I ate pineapple, I got severe tooth abscesses within the next few days (the only dental abscesses of my entire life)! Could have been coincidence, I suppose . . . I haven't tested to find out. I see there seem to be forms of quercetin without bromelian. This one, for example (unless bromelian is hidden in those "other ingredients," but typically it seems that bromelian is treated as a feature to be touted). https://www.lifeextension.com/vitamins-supplements/item02302/bio-quercetin?gclid=Cj0KCQjw_7KXBhCoARIsAPdPTfgzpt537enPe4CYw_HWjcfbXmIl_HfnTOXY3f3u674gC_KSZzB7k9YaAqI-EALw_wcB Since bromelian helps quercetin to be absorbed, I would imagine that maybe if you take it without bromelian, you have to pay closer attention to dosage.
  15. Parsing further, however, "stops the cluster period" doesn't necessarily mean ends the cluster period. It could just mean stops it temporarily, which is not uncommon though maybe even that doesn't happen "often" based on the definition provided. It just so happens that the very "world's leading CH expert" that I mentioned, Dr. Goadsby, did a double-blind etc. etc. study of the effectiveness of the recommended prednisone taper. You can read about it here. https://www.jwatch.org/na52979/2021/01/05/prednisone-transitional-treatment-episodic-cluster Having read that, you can explain to me what the heck it means. It mentions some people "achieving attack freedom by 7 days," but not how many, and not whether anyone's cluster period was completely ended. Overall it seems (to me) that maybe most people got significant reductions in attacks but not complete freedom from attacks. Being able to read the whole thing and not just a synopsis would probably help. And then there's this one, with a few hundred authors, that also says (I think) that pred reduced attacks but says nothing about eliminating them in the short run or fully ending the cycle. https://pubmed.ncbi.nlm.nih.gov/33245858/ Although I see here again, in this discussion of this study (https://www.reliasmedia.com/articles/147514-prednisone-vs-placebo-in-short-term-prevention-of-episodic-cluster-headaches), the unclear statement "After seven days, cluster attacks had ceased in 35% of the prednisone group." -- which of course still fails to meet the provided description of "often," and still doesn't tell us whether that cessation was temporary or cycle-ending. But I do remember, as others might, a crabby woman who wanted to take pred while she was pregnant and asked whether it would end her cycle. She was told "might stop it temporarily but probably not end it," which was very irritating to her. She mustered the energy just a few days later to tell us we were idiots because it did end her cycle, long before she could possibly have known whether her cycle had ended or not. But I am nonetheless adding her to jon''s instance and declaring that to be often.
  16. This is what one of the world's leading CH experts recommends regarding steroids: "Corticosteroids in the form of prednisone. 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis." (google [goadsby management of cluster headache] to see the whole document)
  17. A great list from spiny! You might find some useful info in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. And take a look at the info you get when you click on "New Users - Please Read Here First" in the blue banner at the top of each page.
  18. Note that if you do get a larger tank, you will also need a different regulator. The smaller tanks, such as Es, use one type, but the larger M and H tanks have a different type. Of course, your supplier should know this, but it would be easy to mistakenly say "I already have a regulator." As you read in that long post, many people find that a higher-flow regulator works better for them, and that's something you'd want to get on your own. If your prescription was written in the standard way, it will call for something like up to 15 minutes of "oxygen therapy" at 15lpm. Your supplier can quickly calculate how fast you would go through a tank (15 liters per minute for 15 minutes = 225 liters, and an e tank holds about 680 liters, so that's three aborts) (you might actually get more aborts than that, but according to the prescription, that's what you would get), and that might make them more understanding about giving you something that matches the prescription they were given. Seems like it might even be a requirement that they do so. My two experiences talking with a supplier both turned out good once they understood the actual needs of a person with CH, in contrast to the e tank/cannula they are supplying to most of their patients, who are people with COPD conditions.
  19. At the pharmacy today, I saw a big display for Astepro, which is the first antihistamine nasal spray available without a prescription. I have no idea whether this would be preferable to a pill, for people who are taking antihistamines to supplement @xxx's anti-inflammatory regimen (the "D3 regimen"). It seems that it works faster than a pill, but speed really isn't the primary consideration for people with CH. Also, it's not Benadryl's active ingredient, diphenhydramine, and some concern has been raised about whether other anti-allergy medicines are as effective as diphenhydramine (but some people have said that Claritin worked fine for them in a CH protocol). Just tossing this out.
  20. The general advice about O2 is to keep inhaling it even after an attack has been aborted, 5 minutes longer, or more. That can help prevent or minimize subsequent attacks. It's a bit surprising that a sumatriptan tablet is helping you, since many people find that tablets don't work fast enough. Nasal spray or injectable are more effective. You can split the 6mg injections so you get three aborts from them, which reduces the overuse concern and of course makes those expensive injections a little more affordable. Regarding the verapamil, that's a relatively low dose, and you should be using the immediate release kind, not the extended release kind (can't tell from your message which you are taking). The vitamin D3 regimen is a better and safer preventive than verap. You can read about that, and some other information and tips, in this file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  21. NY Times, "Taking the Magic Out of Magic Mushrooms" https://www.nytimes.com/2022/07/15/opinion/hallucinations-psychedelics-depression.html A couple of themes in this story (and nothing about CH), but the one that interested me: "some scientists are working to develop molecules based on psychedelics that provide the therapeutic benefits of the drugs but without the hallucinations."
  22. Thank you so much for this full and clear information. I'm so happy that your headache situation is so much better now, and I hope you learn all that you need to know from your next phase of testing, without too much unpleasantness. It seems that naratriptan is an essential part of your preventive protocol. Of course, I find that interesting because we hear so much about triptan overuse headaches. Wishing you the best as you go forward!!!
  23. Thank you! Eating smaller meals and drinking more water seems to be helping her, but I will pass along this information, because everything helps. Because we often have people here whose symptoms look like a form of hemicrania, I wonder if you would say a little more about your situation. Here are my questions, but of course you don't have to answer all (or any) of them. I really hope you are on track for something good to happen, because I know it's been very rough for you. You mention that you have been taking the Indo for the last couple of months, and it sounds like you still are not sure whether it's PH that you have. Did you start out on a low dosage and then increase it based on your tolerance? What is your current dosage? How has it affected your attacks? What will tell you whether or not it's PH that you have? As I recall, oxygen was somewhat effective for you. I don't remember about triptans. Do your doctors have a diagnostic basis for thinking it's a hemicrania, or is it just that you haven't responded well to all of the conventional CH treatments and they are trying something different? In addition to taking the Indo with meals (which I imagine is partly a way to protect your stomach from the harshness of Indo), are you also taking something else to protect your stomach? Have your doctors discussed any of the other things, aside from Indo, that sometimes help with hemicrania, or have you looked into them? One is boswellia serrata, and there is a discussion of others here: https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf One person has said that busting every five days kept her HC under control, and I think the vitamin D3 regimen is supposed to help (but I feel like you tried that). Thank you for anything you choose to share!
  24. I don't think there's any expedited shipping option for the ClusterO2 Kit mask. Since having the right mask is likely to make a big difference in your abort times (and your cycles have typically been pretty short), I'd urge you to consider getting a basic NRB, like the one at Amazon, ASAP. I see that Walmart lists them at its site, but I don't know whether they have them in stores.
  25. This is not a non-rebreather mask (NRB). NRB has a "reservoir bag" that fills with O2 until you breathe it in. Yours looks to me like a regular oxygen mask. NRB: You can buy an NRB at amazon for under $10. https://www.amazon.com/MEDSOURCE-Adult-Non-Rebreather-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_6?crid=9P5W6TOMN2PM&keywords=non+rebreather+oxygen+masks&qid=1657466467&sprefix=nonrebreather+oxygen+masks+%2Caps%2C90&sr=8-6 And/or presumably you can demand one from your oxygen supplier. The prescription should have specified NRB. I don't know enough to know how to get the most from the mask you have. You need to plug the holes while inhaling. Put tape on them and remove the mask from your face when you exhale. Since the flow of O2 is constant, you're going to be losing O2 after you have deeply inhaled and held (the standard -- but not only -- breathing practice for CH). This might be a situation where at least temporarily Batch's "redneck" bag would help. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/
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