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Everything posted by CHfather

  1. No. Or at least probably not. For Batch (username now xxx), I think he found that the full D3 regimen had pretty much eliminated his CH attacks, and when they came back he found that Benadryl eliminated them again (that's how I remember it). So in the right circumstances the answer might be "yes," but I don't think you have reached that state yet (and, frankly, I don't think most people ever do). For now, I would say you will know if it works if your attacks are less severe or maybe less frequent, or both. It sounds like you don't have oxygen. If I'm right about that, you really want
  2. See reply to your other post. (In general, if there's something you want to learn more about, you can type it into the search bar at the top right of the page. No problem with asking--just telling you in case it's helpful.) For a general overview of CH treatment stuff, you might take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  3. Standard dosage. 25mg (one adult tablet) 3 times a day, and maybe 50mg at night. As tolerated. If it's too much for you, you can use children's size or liquid to measure your own. It helps most if it's allergies that are flaring you up (can be allergies that you're not really aware of).
  4. Thank you, Tony. Yes, this is wonderful news indeed. I had no idea that this was a possible treatment, but from some quick googling I see that it has been effective for migraine.
  5. https://jamanetwork.com/journals/jama/fullarticle/185035 Note that O2 is also listed as a #1 treatment for CH in every article or physician's guide to CH treatment (along with triptan injections and nasal sprays).
  6. That's really tough, Taylor'. I'm sorry. I am hoping that Batch, who developed the D3 regimen, will see your post and respond. I am going to send you his email address by a private message, so you can reach him in that way. This is a video about O2 use. It will give you the key information, but I don't know how much it will help you, even if the guy might look a little like Spongebob (????). https://www.youtube.com/watch?v=PtFHRIQN17s&t=273s There was a person here a few years old with an autistic child with CH ("an odd form of autism," the person said). This is a thread fr
  7. Tony2, Please see the post right above yours for some verapamil-related info. Also, note that verapamil takes some time to get into your system, so you probably won't experience results for a while. Sometimes doctors prescribe a course of steroids to temporarily take away the pain while the verapamil is building up its effect. You probably want oxygen; you probably want to start the D3 regimen; probably you want to be taking Benadryl right now; you might want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more: https:/
  8. Others are likely to have suggestions specifically regarding the dread. But you can reduce the dread by being sure that you are using all the best weapons, of which your spray is just one, and maybe not even the best in that category. You want oxygen; you want to start the D3 regimen; probably you want to be taking Benadryl right now; you want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more, including (far down on the page) some advice about shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-bus
  9. No! It is considered to be much less effective. 240mg/day is unlikely to do much of anything for you. I am assuming your doctor is starting low and monitoring side effects before adding more, which is good medical practice. Are you doing the D3 regimen? If so, be sure to take your verap about 8 hours apart from the calcium in the regimen.
  10. CHfather


    I have heard that Brain on fire has been going through some rough times lately, involving surgeries, PT, and a challenging recovery. This community has meant a lot to BOF, and BOF has provided a lot in return. Best wishes from me, BOF. Get well soon and rejoin us when you can.
  11. When you had written somewhere (in your post or in your Medium story) about testing drugs for about two weeks, I imagined it had been prednisone that you had been taking, on a standard "taper" schedule. And so it is. It is good that you had such success with prednisone. More often, it relieves the pain for a while but then the pain comes back. It's not clear to me exactly what you are doing now, but please be advised that taking a prednisone taper more than once a year is risky for your long-term well-being. It can create a condition called avascular necrosis, in which the bone at joints (k
  12. 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
  13. 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
  14. 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
  15. [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/
  16. 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
  17. 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
  18. 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
  19. 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?
  20. 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.
  21. 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
  22. 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
  23. 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
  24. 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
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