CHfather

As is said here, Dr.J', welcome to the community and sorry you have to be here. I don't think anyone can really answer your question about what your future cycles might be like, except to say that you will learn to manage them so that they are far less awful than what you are experiencing right now, and it's not impossible that you will find a way to eliminate some or all of those cycles. I think this post and the links within it will provide you with a pretty good tour of treatment possibilities and options, and some things (like triggers) to be aware of: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. I don't remember whether that post mentions Emgality, the most recent pharmaceutical treatment for CH. Our anecdotal reports here are that it works okay (or well) for some people, but is not very effective for others (we're a limited sample here--people who have found success with Emgality are not really likely to show up here, unless they were already here). Some neurologists are pretty good with CH; most are not. So be as prepared as you can when you have an appointment. In particular, be prepared to insist on oxygen, which is the #1 lifesaver for people with CH. The vitamin D3 regimen and busting are also powerful tools. In that post I linked to, there are several suggestions for things you can do right now to reduce the severity of your attacks. If it will be a while before you can see a doctor and thereby get access to medical oxygen, you might consider setting up your own oxygen system using welding O2, which is used by many people with CH. Finally, note the search bar at the top right of the page. That will help you look into any topic that interests you.

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 getting O2 to be your main priority. You might want to read this: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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/

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).

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.

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).

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 from then https://clusterbusters.org/forums/topic/4506-cluster-headaches-or-migraines-having-difficulty-getting-a-diagnosis/?tab=comments#comment-48715. You might try reaching that person, "tonic," by sending a private message. To do that, click on the envelope icon on any page (top right) and type tonic into the "To" space. I think D3 is probably your best bet. My sense is that 3mg of sumatriptan (Imitrex) is probably more than needed. Most adults with CH can abort an attack with 2mg, even though the Imitrex autoinjector is 6mg. (Your doctor probably doesn't know this about the 2mg usually being sufficient; it's "citizen science," not formal medical research (as far as I know).) 3mg is likely to be a pretty big jolt. (There is a "similar type of headache" (a hemicrania) that is sometimes not responsive to triptans, so the test makes some sense.) I'm a little surprised that the doc isn't trying verapamil first before those other two meds, because in my mind its effects are less severe, but maybe there's a reason.

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://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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-busting-information/

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.

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.

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 (knees, hips, shoulders) dies. Many people with CH who were overtreated with prednisone have developed that condition. I doubt that your "weekend headaches" are cluster headaches. It certainly would be a very rare pattern. But I have no suggestions about what they might be.

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 for CH, as you say in the article. It is a way of stopping attacks.) You mention that the prescription was complex with varying pill combinations, so again, we can't conclude that your doctor was just throwing things at you. I hope that it continues to work for you, and I thank you for sharing your information here and in your article.

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=IwAR26DY-Zyy6hVnPkL-YkuVMcXDEiN6cEBAV0r3H8OUvlj9SE6fQKyBSDe54 20 Facts brochure 8-24-13.docx

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 genetic element, although most people with CH do not have parents who had it and do not pass it on to their children. Another fellow from India treated his CH with some success using the method called "busting." If you put the word Vipul into the search bar at the top right of the page (with the image of the magnifying glass), you can see his posts. In general, that search bar can be helpful if you are looking for a specific topic.

[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/doi/10.1111/head.13473] Dr. Larry Schor led a very big survey-based study a few years ago that looked into (among many other things) the psychological effects of CH. He speaks at CB conferences, so I'm thinking he might have something prepared, or could maybe share some of his findings with you. I will PM you his email address. The booklet I'm attaching, "Living with Cluster Headaches," is anecdotal, and so might not be helpful, but just in case... Living with CH - 8.5x11 - 9-15-14.pdf

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 might get five hours of use. With the smaller tank (called an E tank), a person might get something like 30 minutes.

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 you can tell whether it's helping or not).

Thank you!

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 tanks), and maybe the better mask that is made for people with CH. All that might add $120-150. Then you will have to bring in the tanks when they need to be refilled, and there is a cost for the refill plus the cost/hassle of trips to the welding supply place. When you get medical oxygen from a supplier, you typically have some kind of co-pay (others will have to say what that might be; I just don't know and I think it varies quite a lot). Your payments include a regulator and a basic mask. Depending on the supplier, you might get a large tank and a smaller tank, and basic regulators for both. They come to pick up used tanks and replace them. You might want to spend some extra for a more effective regulator (or regulators) and the better mask. How things work out with the supplier seems very dependent on the supplier and the delivery people. You can read more about welding O2 here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

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?

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.

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 least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working." Virtually all private insurance must eventually cover oxygen for CH -- but it often takes a protracted fight to get it. Medicare and other government programs generally do not cover O2 for CH, although there has been some consideration of waiver to that during the current crisis. See this post if that is relevant to you: https://clusterbusters.org/forums/topic/6975-urgent-request-regarding-oxygen-medicare/

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 will stop a cycle. My only qualification to these suggestions is that if you don't have CH, the oxygen very probably won't help, whereas it might be (I don't know) that the ONB would work for other conditions. Setting up a welding O2 system is pretty straightforward, and we can pretty much walk you through it in addition to the information in the ClusterBuster Files. I don't know whether "industrial gases" (the category that includes O2) are considered essential services and therefore open. I know that there are Airgas offices in MD just outside DC, and also in VA just on the other side of DC. You can get O2 there, if they're open. Then it's just a matter of buying a regulator and a mask online and connecting up your system.

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