CHfather

I've been to a few new dentists/oral surgeons lately. They give me a big form to fill out asking whether I now have or have ever had any of a whole lot of medical conditions. Of course, CH is not on the list. I have been urging them to add it, or ask about it, since they could save people a lot of misery by not using epinephrine with patients who have CH. Will they do that? Probably not. But unlike virtually all of the conditions that the form does ask about, knowing that a patient has CH could actually matter. Just recommending that maybe you do the same with your existing dentist or any new ones.

lovely. thank you for checking in.

This is what Batch has written about testing: "You will need to see your PCP/GP for lab assays of your serum 25(OH)D3, calcium and PTH. Adjust the vitamin D3 dose to keep the PTH serm concentration between 20 and 14 pg/mL and still keep the calcium serum concentration within its normal reference range to obtain the maximum therapeutic effect. Once at a stable vitamin D3 dose, annual labs are sufficient. It’s important to drink 2.5 liters of water during the 24 hours prior to the blood draw for your labs. Once you’ve established a vitamin D3 maintenance dose that keeps you CH pain-free, an annual set of assays is sufficient." There is more information about why these tests matter at Cluster and Migraine headache treatment protocol - Sept 2023 | VitaminDWiki

Some people find that staying on the O2 for five minutes or more after the attack has been stopped can hold off future attacks. Others don't find that it helps. Worth trying if you aren't already. Just to confirm that you know about this: Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters And this: D3 regimen - ClusterBuster Files - ClusterBusters

@Drew28, you're not actually the first person here to report that some form of sex helps abort attacks. As I wrote in a post a few years ago, "Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack." As jon' says, oxygen will get you the same results more reliably, if not maybe as enjoyably. With your relatively infrequent and relatively short-lasting cycles, though, I can see that maybe you would just go with what gets you off through them, but on the other hand (so to speak) you did do that vegan thing, so I'd suggest that you look over this document and consider what might be helpful. The D3 seems like a no-brainer for long-term effectiveness, and oxygen maybe for aborts. Basic non-busting information - ClusterBuster Files - ClusterBusters

@MiloS, thank you for this input! I think virtually everyone here would recommend that you start on the D3 regimen right away. It might or might not help during this cycle, but it will help you with future ones if you stay on it. D3 regimen - ClusterBuster Files - ClusterBusters And split those triptans: Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters And maybe try a 5-Hour Energy or some other energy beverage as you start with the O2. This speeds up aborts for many people. Consider the mask made for CH that many people say shortens their O2 abort time by 10% or more. ClusterO2 Kit - Clusterheadaches.com - Online Store And at least keep busting as an option (click on New Users - Please Read Here First in the blue banner at the top of each page).

Definitely much better prices on Amazon. I would not advise getting a regulator that only goes up to 15lpm. Many people need more. In my opinion, a welding reg (also CGA-540) is the best way to go, because it gives you a flow rate that can be pretty much as high as you need it to be. It's very slightly tricky to use the first time because the settings aren't "clickable" like they are on the others that have been mentioned, but everyone gets the hang of that very quickly. One example of many at Amazon: Amazon.com: KLLsmDesign Heavy Duty Oxygen Regulator, Large Tank Gauge Cutting Torch Regulator, Outlet 0-200PSI Inlet 0-4000PSI CGA 540 : Health & Household Welding reg is only good for the big tanks; the clickable ones are what there is for the smaller tanks.

Fingers and toes!! Keep us informed, please.

Do you have a prescription for medical O2?

You were having 10-15 headaches/attacks each day? How long did they last? This is a very confusing to me, because it is extremely rare for someone with CH to get so many attacks. It is much more typical of a different condition that has symptoms similar to CH, such as episodic paroxysmal hemicrania (Chronic paroxysmal hemicrania - Wikipedia) or SUNCT (SUNCT syndrome - Wikipedia). I'm not sure what you mean by "individual cans." Do you literally mean the small cans that contain oxygen -- such as Boost Oxygen? Or do you mean a large tank or a cylinder that has oxygen in it? (If you have SUNCT or paroxysmal hemicrania, oxygen usually doesn't help.)

The Dr. Reddy 6mg injectors are both .5ml. Sumatriptan - Sumatriptan Injection - Migraine Medicine So I would imagine a 1ml vial would work fine. Again -- if my reasoning is wrong, I hope others will correct me. Lots of 1 and 2 ml vials at Amazon. I called my pharmacy, part of a national chain, and they don't stock vials.

I am very, very sorry!!!! I should have looked before I leaped! In my household (I don't have CH; my daughter does), we have only ever tested for D, and there have been no issues. Again, I am very sorry for my error. I see that the calcium/PTH test is also available from labs, if your doctor won't order it. (I guess it is a logical addition to the D test for a doctor to order, since D can potentially imbalance calcium and PTH.) I am hoping that others here will tell you how they approached their doctor about this -- and, you can send a message directly to Batch, who has always been very happy to advise people. You would not be imposing on him -- this is his baby, so to speak, and he has always been very generous with his time. To message him, click on the envelope icon at the top right side of the page and put xxx into the "To" line. The vial method was recommended by @jon019. I'm sure we got it right before posting it, but let's double-check. (We had similar frustrations to yours in getting the Imitrex dispenser open, but found that with patience the cut, keep wiggling, and crack open method eventually worked.) (Damn, I wish you had O2. That will so dramatically change all this.)

I will urge you to start the D3 right away, without waiting for a lab test. I promise you that unless you have been taking regular D3 supplements at high levels, your D is low. (If you had a thorough annual physical (Medicare, I assume), your D was probably tested then.) The best way, as you say, is to ask your doctor to prescribe the vitamin D test. If you don't want to go that way, or get refused, you can have the test done at a lab without a prescription. Your doc should be okay with ordering the test, just in general because most docs appreciate the importance of D. Also, if s/he has any respect for what you are experiencing with CH, it seems like it ought to be enough to say that you have seen some promising results from an anti-inflammatory regimen that includes D3 and you'd like to try it. (I would try to avoid telling the doc what the amounts of D3 in the regimen are, because some can get a little freaked out by that.) For the lab test, if you just google, lab vitamin d test near me, you should see places where you can go to get the test, and pricing, etc. There is also a mail-in test that you can order online (or maybe find at a pharmacy). I think this is the least reliable (and slowest) method. I hope you are splitting your Imitrex injections. Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters For a pill to have any chance of helping, it has to be taken at the beginning of -- or before the beginning of -- an attack (some people can do that if the attacks come at predictable times). I'm sorry you don't have O2. Some people get good abortive results from deeply inhaling cold air, from an air-conditioning vent or outside, if it's cold out. Please get back to us if/when you are considering busting. This isn't the right board for discussing it, so I'll just say that there are substances that you can legally buy and possess that are just as effective as MM (eliminating the sourcing problem you mention). And they are typically tripless.

Maybe someone will give this a try. Do you use the Pepcid as a preventive or to stop an attack that has already started? Just as a historical perspective, I will mention that the antihistamine Benadryl has often been shown to be quite effective, and the overall D3 regimen is also an antihistamine method. Pepcid works on different histamine receptors than Benadryl (Pepcid, H2; Benadryl, H1), and it does seem (to me) that Benadryl might get more effectively to pain sources, since Pepcid works mostly on gastric/digestive tract receptors. Regarding Tiger Balm, there has been discussion of it over the years, and several people have said that it gives them some pain "relief" by being unpleasant enough that it distracts them a bit from the CH pain. You can read input about this by putting "Tiger Balm" into the search bar that is at the top of any page. In your 17 years of CH, I assume you have, as people often say, "tried everything." Are you not using oxygen, or the D3 regimen, or anything besides Pepcid, Tiger Balm, and turning your neck to manage your attacks?