CHfather

Marlon, for an overview of treatment possibilities, you might take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Welding O2 is an option many choose. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ You might not use a lot more O2 with a 25lpm regulator, since you'll probably be aborting faster with it. Are you doing some caffeine as you start on the O2?

Thanks for keeping us updated about this.

mike', I know this wasn't your question, but what are you doing to treat your CH? Maybe if your attacks were more under control it would help your frame of mind at least a little.

Do the best you can to insist on a prescription for oxygen. I know you have read that in the post I linked you to, but I want to emphasize it. Do your best. Maybe bring this with you: https://jamanetwork.com/journals/jama/fullarticle/185035. Good luck!

And/or . . . see if you can get sumatriptan in vials, and syringes, so you can self-measure. The 6mg in the autoinjector is way more than you need--2mg or 3mg is all that's needed. There's also the 3mg Zembrace (in the US) injectable sumatriptan.

You are right, Denny! I just PMed you a screenshot of the $223 combo, but there doesn't seem to be any other order in the whole realm of sizes, colors, and styles that comes up that way.

I admit to being an overly large guy, but when I clicked on the size I intended to order, the price changed from $20 to $223! I'm sure it was supposed to be $23, but I was reluctant to proceed with my order. There is no place at the website to leave feedback, so maybe you can get this message to her.

If you are looking for these, you might start here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The section called "'Treatments' without O2 or other meds" might be most relevant, but maybe parts of the rest of it will be helpful. Not sure what kind of advice you're looking for, but the general principles of "busting" with psilo or other substances are included at the end of that file I just linked you to (the same information appears if you click on the "New Users..." thing at the blue ribbon at the top of the page).

Several people here have reported that it is helpful for them. The vitamin D3 regimen has also shown considerable success for migraines. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

Interesting. Thanks.

Interesting. Thank you! And any study that inclines toward greater acceptance of LSD as a therapeutic agent is to be celebrated.

Back in 2016, a fellow wrote this: >>.I mix and chug down: 1 Teaspoon of baking soda 1 or 2Lime(s) (Preferably organic) 1 cup of filtered water (Don't use tap water) Not only I have been able to reduce the intensity of an attack, but I have been able to abort it. It's worked several times.<<

Paula, sorry you're going through this. Stills Disease sounds awful. I'm sorry to say that is generally believed here that prednisone blocks the effects of busting. (I guess it might be somewhat surprising that you are having attacks, since prednisone often stops attacks. But the dosage you are taking is lower than what would typically be used to treat CH (except that I don't understand the effects of methotrexate on the dosage).) Do you have other resources to deal with your attacks? Oxygen, for example? It seems like a call to Dr. McGeeney would be a very good idea.

Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL."

Here's an overview of CH treatments. It also has a link to the D3 regimen. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I'm not completely certain that what she has is CH, but you might as well try the recommended treatments and see what happens. Maybe it won't be too hard for her to get her hands on a cylinder of O2 with a non-rebreather mask and a regulator that goes up to at least 15 lpm? (She could try 12lpm if that's all that's available.) Thank you for being there for your sister!

I don't think they're "intractable" unless they fail to respond to all conventional treatments, and I'm pretty sure that's not the case. It's possible that you won't have another cycle for a long time, or at all. More likely that you will, of course. Quite possible that the various CGRP meds will be better developed for CH by the next time you have a cycle, or another effective treatment will have been discovered/approved, and it will turn out to be easier for you than it has been for all the previous generations of people with CH. For a general overview of ways to treat CH, you might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ You'll probably forget most of what's in it, but if/when you do have another cycle, you'll know it's there. Asking myself if there's anything you should do now. I'd say to seriously consider starting some version of the vitamin D3 regimen (there's link in the post I linked you to above), so you are building up your D levels. As far as anyone knows, there aren't any bad side effects from following that regimen in a disciplined way. You don't say whether you received any prescriptions (maybe the diagnosis came after your cycle was over). You will read about triptans in the post above: they have their uses. Because the number of triptan devices (injectors or spray containers) that you can get at any time is limited, more than a few people fill their prescriptions for triptans when they are out of cycle so they have a "stockpile" when/if they need them. This is just something to consider. They're expensive. And you might never need them, or never really want to use them.

igdc, this is a kind of guide to the treatment options we're most familiar with. Maybe you'd want to look it over, just for preparedness' sake: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It doesn't address the new CGRP pharmaceuticals (Emgality, Aimovig, Ubrelvy, and others), which might be worth trying. And people are always mentioning new things that seem to have helped them. Do not underestimate the potential power of busting!!!!! It's discussed at the end of the post I just linked you to, and also under the blue "New Users..." banner at the top of each page.

Thank you for this information.

Thank you for keeping us informed. Hoping you'll have some good (or great) news.

I hope you get some good help with getting O2. I would also check in at the Facebook group "Cluster Headache (trigeminal autonomic cephalagia)". A pretty strong international representation there. There's a link to D3 regimen basics in this post, which might also have some other ideas for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Busting has been a last resort for many people in your situation. And then they wished they had tried it earlier. If you are interested, you can read the content at the blue banner "New Users..." at the top of each page. (EDIT: I see just now that you have asked about mushrooms (one kind of "busting") at another post.) D3 regimen is not drugs, and it has helped hundreds. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

If you are chronic -- essentially, no days without attacks for the past year -- Emgality isn't really likely to help you. Results have been poor with people with chronic CH. Rather than waiting for replies, you could type Emgality into the search bar at the top right of the page and read what people have said about it in the past. I hope you're not on prednisone for more than 10-14 days a year. Lots of longer-term risks from that. D3 regimen? Busting? Verapamil? Maybe take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Myhed', you might want to look into the condition called Horner's syndrome, I think. People with CH can have it outside of their cycles. The main characteristics, as listed Mayo Clinic are droopy eyelid (ptosis), a persistently small pupil (miosis), slight elevation of the lower lid (sometimes called upside-down ptosis), sunken appearance to the eye, and little or no sweating (anhidrosis) either on the entire side of the face or an isolated patch of skin on the affected side. As I understand it, though, Horner's is rarely painful unless there's a more serious underlying condition. I think your symptoms probably are not a sign that your CH is returning (maybe others will correct me about that), but I think you should have them checked out by a doctor to rule out other causes. An opthalmologist, I would imagine.

Seigfried, I was just reading this for another reason, and saw this info about an apparent way of treating HC. Maybe it doesn't fit for PH, but I felt I should mention it. https://jmedicalcasereports.biomedcentral.com/articles/10.1186/s13256-019-1986-y ".... Patient 1, an 82-year-old Caucasian woman, presented with hemicrania continua with a partial Horner’s syndrome that was present for 2 years. She was unable to take indomethacin as she was on anticoagulation. After a C2–3 diagnostic facet injection, not only did she become pain free but her ptosis completely resolved. She then underwent a radiofrequency facet neurotomy with complete alleviation of head pain ...."