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Everything posted by CHfather

  1. Very glad that you have found relief, Alex, and you tell the story exceptionally well in the Medium article. I hope your very good writing might help other people toward a correct diagnosis. I think virtually everyone here would be stunned to hear that a pill of sumatriptan and naproxen is sufficient for you to treat your attacks. Clearly Dr. Mathew is not a typical clueless neurologist, since (as you say in the article) he first prescribed oxygen (which you chose not to take) and he understood that triptans are very helpful for treatment. (Just as a side comment, oxygen is not a cure
  2. That's a lovely program, Tony. It's fair to say that a conversation I had with Bob Wold almost ten years ago created a big shift in my life, and I'm sure that you and others in your program and doing the same for many people. Here is another CB document that was created to give people a better understanding of CH. It's kind of old now, but I suspect maybe some of it might still be pretty usable. Also, somewhere there is a famous letter that was created for that purpose. Ah, here it is: A link posted by Denny. http://www.clusterheadaches.com/wwwboard/messages/63158.html?fbclid=IwA
  3. Hello, Shubham Sinha. It's not completely clear to me from what you have said that you have CH, but I think this file will help you see the many things that can be done to treat CH: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ In general, you might look through the ClusterBuster Files section, where there is quite a lot of information. I think it's fair to say that no one knows the answers to these questions with any certainty. Many theories and considerable research, but no certain answers except that to some extent there sometimes seems to be a gen
  4. [Edited: I see Pebbles' mentioned Dr. Schor while I was writing. Just a quick, small point: While Dr. Schor has not (as far as I know) extensively published results from the survey in peer-reviewed journals, he and others did publish findings related to oxygen and other acute treatments in a very thorough article in Headache (which I think is peer-reviewed). This article makes a further very compelling and thorough case for oxygen, and it's very important that the medical community keep being reminded/told about the importance of prescribing O2. https://headachejournal.onlinelibrary.wiley.com/
  5. No. Tanks get refilled and reused, although when a supplier brings you more O2, they bring you a different tank and take the one you have back to be refilled and eventually given to someone else. Or, if your question is different -- you will use the same tank for multiple aborts. Tanks come in different sizes, holding different amounts of oxygen. The number of uses depends on many factors, including how much O2 is in the tank and how fast you use the O2 that's in the tank (this is called the "flow rate" and it is measured in liters per minute). With a really, really big tank, a person mig
  6. I am inclined to agree, as long as you can get it reasonably quickly and are not committed beyond a reasonable initial co-pay. A small possibility . . . Some people have found that EMT stations or firehouses with O2 are willing to let them use it in an emergency. In current circumstances, this might be a lot less likely. But if you have such a place very nearby and can get there during an attack, it might be possible. Another reservation about this is that O2 is not always very effective on the first couple of uses (though I would said that most of the time it is effective enough that
  7. graci, your question is probably more complicated than you think . . . . The simple answer is that for you, to test whether O2 works for you, you might have to pay around $100 for the whole welding-based setup: a small filled tank, (20 or 40 cu ft -- maybe $40-60?), a regulator (maybe $30-40), and a basic mask (maybe $5-10). If it does work and you want to set up a more optimized system, you'll need at least one larger tank (for home use--you can use the smaller one for portability, in the car for example), maybe a second regulator (so you don't have to use the same one for the big and small
  8. Great news!! Congratulations on your persistence, and thank you for letting us know. I wonder whether you could clarify this a little, to add to our knowledge. Did your PF time only start when you switched from busting a minimum of every two days to busting several times a month? Can you be more specific about what several times a month means? Roughly once as week? Every five days? How much of what substance were you taking? Are you doing anything else that might be helping -- the D3 regimen, for example?
  9. This is a place to start, both in terms of knowing your options and with some things you can do while you get properly set up (oxygen, D3 regimen, . . .) https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Make your next post on one of the closed boards (Share Your Busting Stories, for example) and you'll get more advice.
  10. Good! I hope it helps. Doctors usually fax the prescription to a supplier (maybe they have a more modern method of sending them these days). This advice is from this file, where you might want to read, or re-read, the part about oxygen: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ "To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the lea
  11. Just as some general information, you can use the search bar at the top right of the page to see what others have said related to questions you might have. Occipital nerve block is often abbreviated as ONB, so I would think that if you put that in, or the whole phrase, you'll see some thoughts. My own thought on this (others might disagree) is that if you can get an O2 prescription and quick delivery, that's where you should start, along with jumping on the full D3 regimen at "loading dose" levels and maybe a prednisone taper. Pred will typically stop attacks for a few days, and sometimes wi
  12. I agree that it's hard to tell right now whether you have CH. But the anesthetic that is most typically used for dental work does set off severe CH attacks in many people who do have CH. Georgetown's Headache Center is supposed to be good -- but I suspect there's a long wait (if people are even seeing patients now). U of MD has something, too: https://www.umms.org/ummc/health-services/neurology/services/headache-migraine
  13. So, those are all things that have been tested (some of them extensively) related to migraine, because there is a logic that says they should help. This is an odd quote from a journal article about three of your four ingredients: "The prophylactic properties of other agents such as magnesium, riboflavin, and coenzyme Q10 are low at best, but their lack of severe adverse effects makes them good alternative treatment options." Like Pebbles' said, this seems to be arguing (regarding migraine), "They probably won't help much, but they can't hurt much, either." https://www.ncbi.nlm.nih.gov/pmc/art
  14. Sorry that I have no answer for this one, Vipul. Maybe D3? Or try busting . . . it probably wouldn't make things worse.
  15. THMH, thanks! As a test, attaching and inserting Goadsby's journal article on CH treatments. Seems to be working!!!!! Peter J Goadsby, MD, PhD, DSc Headache Group, Department of Neurology, University of California, San Francisco, San Francisco CA Cluster Headache is a very severe form of primary headache with a population one-year prevalence of about 0.1 %. Classified as a Trigeminal Autonomic Cephalagia (TAC), it is probably the second most common form of primary headache encountered by neurologists or headache specialists. Cluster headache (CH) comes in two dominant forms
  16. Tony, it looks to me like this is the same as the numbered items in the ClusterBuster Files. As far as I know, these particular documents haven't been updated since tommyd posted them. Now that THMH has made it possible for me to attach documents again, would you like me to copy the 13 entries from the CB Files into a Word document for you? (I think there's a small problem with including the outdated info, but I don't know what to do about that.) What I do is not half as much as you do.
  17. Thanks for letting us know, j. If you do Imitrex again, keep in mind that you can split your injections to take less sumatriptan (which is still almost certain to stop your attack). You injectors are old enough that they might even be the kind that are much easier to take apart. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  18. Tony, maybe this is what you're looking for???? https://clusterbusters.org/forums/topic/681-1-the-clusterbuster-method-a-quick-rundown/?tab=comments#comment-8322 (Asking this question to anyone who happens to be reading this thread: This document contains this statement about tryptamines: "For aborting attacks, they rival oxygen in safety and effectiveness." This puzzles me. Is this true, but no one does it anymore except on rare occasions (maybe because of the five-day "shutting the door" principle/rule)? From the time I have been here (~10 years), I really don't recall anything being push
  19. Tony, do you mean the 2006 article by Sewell, Halpern, and Pope, "Response of Cluster Headache to Psilocybin and LSD"? If so, I have it. But I can't attach it here because I have apparently already used up my allotted attachment capacity. Tried to paste it, but the formatting all falls apart, as you can see below. Left in here in case you want to try to wade through the mess. If you PM me an email address, I can send it that way. (It used to be easily located at the main CB page, but that seems quite jumbled now.) Response of cluster headache to psilocybin and LSD Abstract—The au
  20. I don't know a lot about methlypred, so I can only say that those dosages sound low, and I feel certain they're much too frequent. Here's what one expert says about dosage and use: "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." https://clusterbusters.org/wp-content/uploads/2014/03/GoadsbyClusterTreatment.pd I don't know of a medical O2 tank that is 2000 liters, but th
  21. My gosh, that's a whole lot of powerful stuff you're taking. You have a headache doctor who specializes in working with pregnant women, so I am very reluctant to overstate anything. And you don't say how often you are using the various abortives and possible preventives, so I can only tell you some things we might say to someone on those meds. 1. Most people with CH don't need 6mg of sumatriptan to stop an attack. 2mg is usually enough; I would say that for sure 3mg is enough 90-plus percent of the time. There are ways to get to 2 or 3mg. One is to take apart the 6mg injector. doses
  22. If you put the word reishi into the search bar at the top right of any page, I believe you'll find some experiences, including a woman who said she had found relief from her CH with reishi mushrooms. I don't know what there is about lion's mane, but I remember a guy who kept trying new things and would often have success followed by disappointment. I think he took lion's mane during one of those experimental periods.
  23. We're sorry that you have to be here, but glad that you are here!
  24. Batch is the fellow you're thinking of. It's a shortened version of his last name. So glad you've found good docs and are getting good relief. (Technically, you aren't chronic until you have attacks for a year with only a short period without attacks during that time.) You might find some useful ideas in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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