CHfather

Not a woman here, but my daughter is, and O2 works great for her (thank God). Can you give a citation or link for that article?

If I can say so, those were some pretty fast jumps. Plenty of info about him here. Not an unimpressive resume. No mention of surgery. Work on CGRP; a developer of Imitrex. https://medvadis.com/our-team-2/ He co-wrote some articles with the "bad" Dr. Shevel about migraine patients with "extracranial" migraines and with cervical muscle issues, and those have turned out (from what I have read) to be useful for treating a subset of migraines.

Well, of course they were looking for major investors (which we were often told were just about to sign on), but they also did a crowdfunding thing, which a few friends of mine contributed to. It did seem futile, even at the time. You might know that people have found unscheduled substances that could be purchased "legally" and used to treat CH as psychedelics would treat it, but without the trip. Perhaps not in the class of BOL in terms of efficacy, but very effective for a whole bunch of people (with the qualification that Denny mentioned -- a miracle for some; a bust for others). 5-MEO-Dalt was the big one, but the door got shut on that when companies stopped making/selling it. Just on a personal note, your work might have intersected with that of a friend of mine, Joe Moskal (of Naurex and Aptinyx), who has invented new compounds for treating brain and nervous system disorders, including rapastinel. I played golf regularly with Joe over many, many years as the new molecule he invented for treating depression (no side effects, instant results) went through tens of million dollars in clinical trials. Eventually sold to Allergan for a whole lot of money (which allowed Joe to join a country club and no longer have to play golf with a hacker like me), that substance "failed" some final trials and has been shelved. I'm directly aware of what it takes to bring pharma drugs to market. https://www.globenewswire.com/news-release/2019/07/12/1881976/0/en/Aptinyx-Salutes-Retiring-Chief-Scientific-Officer-and-NMDA-Receptor-Drug-Discovery-Pioneer-Joseph-Moskal.html

Denny, did you follow the Sewell vs. Halpern vs. Rick Doblin vs. bunches of other people saga that ensued when Halpern patented the application of BOL for CH? Man, that was a juicy bunch of recriminations. You almost had to pick sides, and I picked Sewell. You can still find it on the internet, but I won't link to it.

Bob is a hero to many of us. And everyone who keeps it together while coping with CH is a hero to me, too. There's no reason for me to be chiming in here, and absolutely no need for you to respond. I had a strong psychic investment in this (my daughter has CH) back then, and a financial investment in Entheogen (in the form of donations) that was not insignificant for me. It's my understanding -- which could well be wrong in many places -- that there are two patents at issue. One is the patent for BOL-148 (2-bromo-LSD) itself, and one is the patent for using 2-bromo to treat CH. I know that John Halpern and Torsten Passie patented the latter around 2010, though I think maybe the patent holders are the institutions where they worked, Halpern at MacLean Hospital and Passie at a German hospital. I think Harvard holds the BOL-148 patent because Albert Hoffman invented it there in the 1940s (but I know the patent for plain LSD was "assigned" to Sandoz). I have attached a little booklet that ClusterBusters put together a few years back. Living with CH - 8.5x11 - 9-15-14.docx

I'm sure we all wish you the best, and appreciate that someone with your drive might be taking on the challenge. Bob W is the right guy to be talking to about the background and realistic prospects. Thank you.

Jack, As Denny says, a lot of us got our hopes way up for the availability of BOL through the company called Entheogen, which we were told year after year was on the verge of success, until it collapsed. I won't do that again, but will wish you well if you want to give it a shot. You expressions -- "quick, safe, reliable, affordable," etc. -- seem vastly optimistic to me, but maybe a smart, young, innovative, entrepreneurial fellow like yourself can make it happen.

This is the article that I remembered having read: https://www.ncbi.nlm.nih.gov/pubmed/17367596 Aside from oxygen (which works for CH but generally doesn't for migraine), there's a lot of overlap in the treatments for both conditions: pharmaceutically, that would be verapamil as a preventive and a triptan as an abortive. Non-pharmaceutically, the D3 regimen and busting are both effective for migraine.

Yes, but I believe Batch still recommends (he used to recommend it) that you take the calcium supplement at least 8 hours apart from the verapamil, because verapamil is a calcium channel blocker.

The term "cluster migraine" is sometimes thrown around by doctors with the wrong meaning, but there is apparently a very, very small segment of people who have symptoms of both at essentially the same time. (This is different from the group that has both migraines and CH, but can tell when each is occurring.) The sharp decline in cognitive ability is also often experienced by many people with CH (but I don't know if that is also true sometimes of people with migraine). As you can see, I have quickly reached the end of my potential usefulness. Maybe someone else here will have more useful insights. Is your neuro a headache specialist, perhaps at a headache center? It might take that level of expertise, not just the expertise of a general neuro, to help you sort this out.

Nice remembering, Freud! Looking back over these threads, I see that HC has been discussed. Easy to forget key things when under the pressure of talking to a doctor. A "required" aspect of a hemicrania diagnosis is the eye or nose symptoms that are also typical of CH, which kat' doesn't have, but your suggestion is very important to follow up. Maybe it's "atypical" HC!

Atypical means that it doesn't have all the symptoms of the "typical" cluster headaches that most people have. What that article says is that atypical CH often comes from causes such as pituitary gland issues that are not the causes of "typical" CH. There is no identifiable cause of typical CH.

A week generally isn't enough for the D3 to be effective, or at least not fully effective. Your blood test will tell you what your D level is. It has to be pretty high for the D3 regimen to be most effective.

The attack you experienced sure sounds like CH. One difference between migraine and CH is that while people with migraine often seek relief by lying down in a dark room, people with CH generally can't sit or lay still: they are "restless" or "agitated." A proportion of people with CH also have migraine-like symptoms, including aura, so those symptoms don't rule out CH. There are people whose treated CH appears with a feeling that there should be pain, but there isn't any. This seems to most often be true of people who are treating their CH with psychedelic substances. I don't know how it would happen with untreated CH.

BKP -- Maybe a triptan nasal spray will work for you. Or would you feel better without the self-injector, if you were just injecting yourself with a syringe? That can be arranged.

kat' -- Glad you got a diagnosis. Hope the steroids help. Unlike regular cluster headaches, atypical CH often has an underlying physiological basis, such as something going on with the pituitary gland. Have you had an MRI? (From a journal article: "Based on this review, I suggest that neuroimaging, preferably contrast-enhanced magnetic resonance imaging/magnetic resonance angiography should be undertaken in patients with atypical symptomatology" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3928394/) Your doctor should prescribe it, particularly since you have the diagnosis and an apparently caring doctor (Yay!). It's listed in all the medical resources as the #1 abortive. If you can't get a prescription or run into insurmountable hassles with insurance, welding oxygen is an option that many people use.

Restlessness/agitation are part of the diagnostic criteria.

If you want to see what there is in the medical world regarding CH, new and old, it's pretty straightforward: Go to pubmed (https://www.ncbi.nlm.nih.gov/pubmed) and type cluster headache into the search bar at the top of the page. For most things, you can only see the basic information, but some will show you more.

Here's a proper link, but there's nothing else there about this article. Big bucks required to see the actual thing. Quite a few other melatonin studies also listed there. https://www.ncbi.nlm.nih.gov/pubmed/31370669

I don't really understand most of the crucial terms here, but it still seems interesting enough. Long-term efficacy of superficial temporal artery ligation and auriculotemporal nerve transection for temporal cluster headache in adolescent; Chang B, Zhu W, Zhu J, Li S; Child's Nervous System (Jul 2019) Tags: OBJECTIVES Cluster headache is a primary headache disorder, which has affected up to 0.1% population. Superficial temporal artery ligation combined with auriculotemporal nerve transection (SLAT) is one of the surgical alternatives to treat the drug-resistant temporal cluster headache (TCH). The current work aimed to assess the effect of SLAT on TCH patients based on the very long-term clinical follow-up. METHODS The current retrospective study had enrolled 20 adolescent TCH patients undergoing SLAT between December 2016 and January 2018. The headache diaries as well as the pain severity questionnaire of the visual analog scale (VAS) had been collected to measure the pain severity before and after surgery. RESULTS The pain-free rates 3 days, as well as 1, 6, and 12 months, after SLAT surgery were 2.00%, 10.00%, 25.00%, and 70.00%, respectively. The frequency of TCH attack daily was found to be markedly reduced on the whole; besides, the pain degree was also remarkably decreased. CONCLUSIONS Results in this study indicate that the sustained headache can be relieved after SLAT in adolescent patients with intractable TCH. https://www.docguide.com/long-term-efficacy-superficial-temporal-artery-ligation-and-auriculotemporal-nerve-transection-tempo?tsid=5

Some more info about melatonin (more than I knew, anyway), and more thinking about understanding the brain processes involved in CH. Current understanding of pineal gland structure and function in headache; Peres M, Valença M, Amaral F, Cipolla-Neto J; Cephalalgia 333102419868187 (Aug 2019) PURPOSE The pineal gland plays an important role in biological rhythms, circadian and circannual variations, which are key aspects in several headache disorders. OVERVIEW Melatonin, the main pineal secreting hormone, has been extensively studied in primary and secondary headache disorders. Altered melatonin secretion occurs in many headache syndromes. Experimental data show pineal gland and melatonin both interfere in headache animal models, decreasing trigeminal activation. Melatonin has been shown to regulate CGRP and control its release. DISCUSSION Melatonin has been used successfully as a treatment for migraine, cluster headaches and other headaches. There is a rationale for including the pineal gland as a relevant brain structure in the mechanisms of headache pathophysiology, and melatonin as a treatment option in primary headache. https://clusterbusters.org/forums/forum/13-research-scientific-news/?do=add

It really sounds like what Freud said, hemicrania continua: https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page You'll see on this page that if it is HC, it is treatable with a medication, indomethacin (and cluster headache treatments, such as oxygen, are likely not to be effective). It's relatively easy to test with indomethacin whether it's HC or not, though it is not beyond doctors to screw that up with not prescribing enough or not long enough. Indomethacin is hard on the guts, so it needs to be taken with something to protect your stomach. You can start the D3 regimen without a blood test. It's 99% likely that your D level is low. I don't know whether the D3 regimen helps with hemicranias or not. CH is somewhat genetic, in that it can run in families, but most people who have it do not have a family history.

If all this sensible advice doesn't work, maybe you could go for some welding tanks. If you have a friend there, s/he could pick it up for you, or maybe you could find/make the time.

Diamond is fine. My only big question about making such a journey would be whether If they give you prescriptions (for oxygen and medications), you will be able to get them filled where you live. Maybe you're coming to the US for other reasons besides going to this clinic.

Vitamin D: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I would also urge that you might read this for an introduction to things you can or should do: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/