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Everything posted by CHfather

  1. CHB, that indeed does not sound like a top-flight neurologist. Was oxygen discussed? You might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ And of course an MRI should be done, to rule out other situations. As for causes, I have to say there's not a lot of discussion of that here, either, though many theories get brought up. Many people with CH remember having had head trauma, but many don't. Most people with CH smoke, but many don't. Stress? Psychological trauma? Weather? Cellphones? All discussed. But no one's gonna know a cause, and knowing it doesn't help much with treatment (some people find they benefit from keeping cellphones away from their cluster side).
  2. This is what UptoDate, an online resource for doctors, says. You should read the whole article -- a lot of good info at the end: https://www.uptodate.com/contents/supplemental-oxygen-on-commercial-airlines-beyond-the-basics#:~:text=In general%2C airlines do not,rented through an oxygen supplier. "In general, airlines do not provide medical oxygen, but allow passengers to bring a battery-powered portable oxygen concentrator (POC) for use in flight. POCs that are approved by the Federal Aviation Association (FAA) can be purchased or rented through an oxygen supplier. Approved POCs will have a label indicating that they meet FAA regulations. Airlines may require notification of the need for in-flight oxygen at least 48 hours before the trip, making it necessary to undergo testing at least three days before travel." Here is a link to what TSA says, but it's really covered in the article: https://www.tsa.gov/travel/special-procedures
  3. The anticipated completion date of the Yale psilo/CH study is June of this year.
  4. @MaxHead, I wish there was a stronger reaction available than "like" for your post.
  5. Since we're talking D3 here, you might want to consider the anti-inflammatory "full monty" that Batch has recommended in critical situations: QUOTING HERE FROM A POST BY BATCH: "The Antihistamine Full Monty is a collection of supplements with antihistamine properties that include 3 grams/day each of Turmeric (Curcumin), Resveratrol, Quercetin and Omega-3 fatty acids. It also includes 200 mcg/day Selenium, 8 grams/day vitamin C and 10 mg/day Melatonin taken at bed time. I buy the bulk powdered vitamin C in 1 Kg bags and stir 2 level teaspoon measures in 8 ounces of water and take sips all day until it's gone by bedtime. This is the least expensive form of vitamin C and dosing throughout the day is best as our kidneys filter vitamin C rapidly. I realize this is a boatload of pills to take, but the Full Monty is proving to be very effective in achieving a CH pain free response. Most CHers respond to the Antihistamine Full Monty during the first week. When you've experienced a sustained CH pain free response for at least a week, you can lower the dose of the first four supplements to 2 grams/day. I'd stay at that dose for at least two weeks then taper the dose down to 1 gram a day. You can skip the selenium and melatonin at that point, but I'd still take at least 4 grams/day vitamin C as it's so important for good health." Back to me: Red eyes are definitely a possible Covid symptom. You can just google [covid red eye] and see plenty of reports about that. And severe headaches are also a common Covid symptom. So it could be that that is what this is all about (fingers crossed). I'd be careful about increasing your verapamil, for three reasons (these are not hugely strong reasons, so you might decide to do it anyway, but maybe they are worth considering). (1) it's generally not considered a good idea to increase verap dosage without a doctor's involvement; (2) while that level might not, or even probably wouldn't, affect busting, the lower the better just for better assurance of full busting results; (3) as with point (1), it's my general understanding that it might not be wise to go up a notch on verap dosage and then go down when the crisis has passed. Could you do a SPUT (small piece under the tongue) if you get hit, or even as a possible preventive? It's my understanding that one SPUT, just a pinch of MM, can stop or reduce an attack but won't interfere with an upcoming bust. That could also be a chance you don't want to take, so I'm just throwing it out.
  6. @xxx (Please see above) (xxx is Batch's handle here.)
  7. I don't think anyone can confidently answer this question, but it won't do you any harm to try. And you can get seeds expressed to you from https://www.shamansgarden.com/p-251-rivea-corymbosa-seeds-ololiuqui.aspx (Some years back, I asked three seed suppliers about storage. None recommended freezing; all recommended a cool dark place; all said that six months was probably the max before potency diminished. However, I'm not really sure that they actually know, and it is of course in their business interest to put a shorter duration than might be true (if they know).)
  8. I'd consider googling "ADA attorney." Many will give you a free consultation, and I would think that any of any size would have had, or heard about, oxygen cases.
  9. Thank you for posting this. All experiences are valued here, and it's great that you are feeling so good. There's a long thread about B1 here: https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/, and I think @Bejeeber is, or at least was, taking that phosphatidylserine to keep his memory strong (maybe if I was taking it, I would remember this for sure), but didn't feel like it was helping his CH. Maybe the combo of the three is doing the trick for you. I hope it continues, and I hope you'll keep letting us know how it's going.
  10. If it is migraine, you would think that the rizatriptan (Maxalt) would help, since that's what it's for. It NOT a cluster headache medication (or at least not a first-line CH med). Not saying it isn't migraine, of course, just observing. I will jump to my usual possible diagnosis (NOT a doctor) of some form of hemicrania. The eye droopiness and watering are symptoms of hemicrania, and the continual pain with occasional explosions could fit, too. Hemicranias are typically resistant to triptans (although it's possible that the "painkilling shot" that helped you was a triptan, and as I've said, rizatriptan pills typically don't help CH in any event, so that isn't much of a test). Here is some information about one form of hemicrania: https://www.webmd.com/migraines-headaches/hemicrania-continua-symptoms-treatment Another is paroxysmal hemicrania, which you can look up. A "good" thing about hemicrania is that there is a highly reliable preventive, Indomethacin. There isn't enough info right now to do anything but guess and be sure all the options are being considered. I am just providing this information so you can be sure you and your doctor is considering/aware of all the options. For all I know, it could in fact be sinus-related and/or Covid-related. You might want to look over this file, just in case -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- and maybe you'd want to try some strong coffee or an "energy shot" such as 5-Hour Energy, since those typically help reduce CH pain. Doctor oddities appear much too often: In this case, diagnosing CH (that's a good thing, if she is correct) and then prescribing a migraine medication that is explicitly not for cluster headaches (https://www.mayoclinic.org/drugs-supplements/rizatriptan-oral-route/description/drg-20065868#:~:text=Rizatriptan is used to treat,group of medicines called triptans.). If this painful situation continues for you (I hope/we all hope it doesn't), you're likely to get the best diagnosis and treatment at a headache center.
  11. Yes, and 10lpm is generally too low, or even way too low, for the most effective abort. I always worry when I see concentrator that other wrong equipment might have been supplied. Do you have a non-rebreather mask (it has a bag that fills with O2 and then empties when you inhale)?
  12. Heck yes, we are interested. First, because if you have CH, we want to help you prevent and manage it so it has the least possible impact on your life -- in ways, including busting, that virtually no doctor will tell you about (as jon' suggests in his post). And second because a large portion of what we know here we know from the people who come here. CH is tricky and constantly changing, and probably never the same in all aspects from one person to the next. It's all "citizen science" to really come closer to understanding what happens, why/when it happens, and what works to prevent it and manage it. One reason you're not getting many direct answers to your questions about first attacks and subsequent ones is that it varies from person to person. Some people have CH, boom just like that. For others there are "light" episodes or just single attacks. And sometimes that's all there is, and sometimes a full cycle might come on pretty soon or it could be years before another one. I don't blame you for worrying and wanting more clarity, but I feel pretty sure there is no direct answer to your questions about what might be next (if anything). We are even interested if you have no further attacks, so do let us know. We'd be happy for you, and it would be another data point for us. If you want to be proactive just in case, you could take a look at the D3 regimen (in the ClusterBuster Files section). It's probably good for you no matter what, and even if you start it at a lower level, you'll be building up your system with a very effective preventive.
  13. Nick, here is something you might read to have a sense of the CH "landscape": https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (the reference about "busting" that others have pointed you to is included at the end of this post, if you haven't looked at that yet). You won't fully understand it all, and you surely won't remember a lot of it, but you'll know it's there. (I'd look at the replies, too.) Some of the info might help you for your doctor appointment, and at the least you will have the understanding that there are many ways to treat this condition. It's possible that you'll never have another attack, or that you won't have one for years. Probably the most practical thing you can do right now in case of another attack is to have a few containers of energy shots (e.g., 5-Hour Energy) or energy drinks (e.g., Red Bull) on hand. Particularly for people in early stages, these can abort an attack or significantly lessen its severity. For some people, even a strong cup of coffee helps. Most people find they can drink them at night and still get back to sleep. As spiny says, stay away from alcohol, the #1 trigger (for most people). (If you do have CH, this isn't a lifetime alcohol ban -- most people can drink when they are out of cycle (though many choose not to). There is a file here -- https://clusterbusters.org/forums/topic/4568-triggers/ -- with more info about triggers, but you don't need to stop doing everything on that list. Two things many of us think of when there's a sudden attack: MSG and dental work. Did you have either of those in close proximity to the attack you experienced?
  14. Again, this is about migraine, but the emphatic point from a leading headache expert is that WMLs are essentially inconsequential. In the case of migraine, it does seem that people with migraine are somewhat more likely to develop WMLs. https://americanmigrainefoundation.org/resource-library/migraine-and-brain-lesions/
  15. It would be foolish for me to say it's nothing to worry about, but . . . "White matter lesions are among the most common incidental findings—which means the lesions have no clinical significance—on brain scans of people of any age." https://www.brainandlife.org/articles/what-are-white-matter-lesions-are-they-a-problem My daughter's first MRI for CH, more than ten years ago, showed some WMLs. Nothing bad has happened to her in that regard. People with migraine have white-matter lesions more often than other people. Imma guess that's probably true for people with CH, too.
  16. There is a fairly thorough discussion of oxygen in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. It includes advice about how to get it and how to use it, and also some potentially useful discussion of a conversation you should have with your oxygen supply company as soon as the prescription is sent to them.
  17. 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/
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
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