CHfather

If the CBD ever lets you down and you start having attacks again, please check back in here. Some of what you say above is a little bit inaccurate, and people here will be able to give you some guidance about highly effective preventives and abortives that you can use while dosing with psychedelics (or on their own). But for now, may your CH-free life continue forever!!

I was surprised to see that CHsince99 seems to be getting good results, even preventive effects, from "drowning myself in coffee, " because in the experiences that I know of, the approach that you describe -- limiting coffee only (or as much as possible) to times when it is needed as an abortive -- seems to have made the caffeine more effective for achieving or helping the abort. Very frequently there is new stuff posted here about so many things related to CH, contradicting or challenging what I thought I knew, and there are so darn many possible variables that I don't see a good way to sort them out, except by the kind of question you ask and seeing what the most common experience is.

I very much appreciate this report, and as you say, it probably couldn't hurt for people to give it a try. It's wonderful that you have experienced this relief! I will say that you are far from the first person who has reported here on trying CBD, and some have indeed reported good results -- though not a "cure," which is not a word we use here lightly, and surely not until at least a couple of years have gone by. If you (or anyone else reading here) want to see past reports related to CBD, just put CBD in the search bar located at the top of each page (here's an example: https://clusterbusters.org/forums/topic/5581-cbd-i-know-i-know-but-bear-with-me/#comment-56361). Of course, it is possible that through your research you might have hit on just the right oil and/or just the right dosage and/or who-knows-what other "just right" thing that gets it all aligned. If you don't mind, I have a few questions/requests: Two questions here: (1) Did you continue dosing with shrooms? (2) Would you point me to one of those videos you mention, making that specific recommendation ("small micro dosages of 0.4 grams every 3 to 4 days")? As the first site specifically created to encourage/help people to use psychedelic substances to treat CH, we try to keep track of what people are saying out there about how to do it, and I have not seen videos making this recommendation (which is different from what we have learned here about the best way of treating CH with psychedelics). As people here know, I like to dig into the research, so I have the same request: Would you be kind enough to point me to one of the studies you found showing this deficiency in people with CH? I have tried googling, and I have found research about hormones lacked by people with CH (one study, for example, says "CH often show accompanying neuro-endocrinological changes such as a blunted circadian rhythmicity of hypothalamically regulated hormones including testosterone, cortisol, growth hormone, thyroid-stimulating hormone, prolactin, melatonin, follicle-stimulating hormone, and luteinizing hormone..."), but I haven't located anything about endocannabinoids and CH.

Well, there isn't that, but the core principles are pretty straightforward: > Use the vitamin D3 regimen to prevent cycles or at least lessen the severity of attacks during cycles: https://clusterbusters.org/forums/topic/1308-d3-regimen/ > Yes, there are other preventives that work for some people at the right (usually high) doses, but D3 ought to be enough, and it has no (or far fewer) side effects > To end a cycle and potentially prevent one, busting is a choice that many make (click on "New Users - Please Read Here First" at the top of any page here) > To stop an attack, oxygen is the go-to for most people. (This is discussed, along with a lot of other things, here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/). Many people are finding DMT to be an effective abortive (DMT experiences and advice - Theory & Implementation - ClusterBusters). Triptans in various forms (injected or inhaled) will also stop attacks, but with side effects (see the "basic non-busting information" file above for more on this). > A course of prednisone, if properly prescribed, will typically hold off attacks during a cycle for some amount of time, and can sometimes (rarely, in the experiences that have been described here) end a cycle > There are lots of other strategies that can be used to supplement the above, or make some things more effective (caffeine, for example), and to treat the shadows that some people get. You can read about all that in the linked document from above (https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Oxygen should not be hard to get because you're episodic. A doctor should prescribe it, and (if you're in the US) Medicare would most likely cover the cost. And it is the job of oxygen suppliers to do the part you mention -- bringing it up to your apartment. But even if you go with welding oxygen, unless you have to walk up a lot of steps to get to your apartment, it ain't that hard to lug some decent-sized O2 cylinders once in a while. There are rollers you can put them on, for example, or some decent sized ones fit in a rolling suitcase. If you are using the injectable triptans, be sure to split your doses: https://clusterbusters.org/forums/topic/2446-getting-partial-doses-from-sumatriptan-injectors-imitrex-imigran-etc/

Thank you for posting this. Quite a few people (though not all) have reported good results from ketogenic diets (I understand that carnivore is a subset of keto).

Seems like adding zinc is the most practical of the things listed there, although there's no indication there of how much zinc to take, so I suppose that could become another whole area of study. The vitamin D3 regimen already includes zinc, I think at 10 mg/day in the recommended multivitamin. I think he also recommended supplementing at some times with 50 mg zinc, and as I recall, there was mention of studies showing that taking zinc can reduce migraine attacks. Whether that's considered to be related to adenosine, I don't know.

Here's something from 2019: https://pmc.ncbi.nlm.nih.gov/articles/PMC7802413/ "As previously mentioned, it is still unclear why oxygen exhibits such good efficacy in the treatment of CH. The vasoconstrictive theory was prevalent in the early 20th century until Wolff et al. found that ergotamine constricted external carotid arteries and simultaneously relieved migrainous headaches.20 Therefore, they proposed that headache is caused by vasodilation rather than vasoconstriction. The study was published in 1938 and overturned the past theory.20 In 1961, Horton7 proposed that histamine cephalalgia was caused by the vasodilatation of extracranial vessels, and that oxygen was a vasoconstriction factor. If the vasoconstrictive effect of oxygen exists, oxygen therapy should be effective for both migraine and CH. However, the oxygen treatment is only effective for CH. In the 1980s, some studies reported a decrease of cerebrospinal flui in patients after breathing 100% oxygen as compared to breathing room air.21 Since then, animal model studies have demonstrated the protective, anti-inflammatory role of hyperoxia in microcirculatory inflammation. In 2006, Schuh-Hofer et al.11 demonstrated that hyperoxia can inhibit dural plasma protein extravasation in rats. Recent studies have suggested that CH is associated with some brain structures, including the trigeminovascular system, the cranial autonomic system, and the hypothalamus. The activation of the trigeminovascular system is thought to play an important role in the pathophysiology of CH. Goadsby and Edvinsson22 attempted to demonstrate the associations between hyperoxia and neuropeptides, and the results indicated that a significant reduction of calcitonin gene related peptide concentration in the jugular vein after oxygen treatment occurred, which suggests a possible effect of hyperoxia on trigeminal afferents. However, animal experiments have shown that oxygen does not directly act on trigeminal afferents, but appears to play a key role at the parasympathetic pathways.23 At present, studies assume that oxygen may act as a terminating factor in CH attacks. More research is needed to clarify the specific mechanisms of oxygen treatment for CH. Table 1. The history of oxygen used for cluster headache Study Year Findings Alvarez et al.15 1940 First use of oxygen for headache at a flow rate between 6 and 8 L/min. Horton16 1952 First description of oxygen used for histamine cephalalgia. Horton17 1955 Oxygen treatment in 1176 patients with histamine cephalalgia. Horton7 1961 He raised the vasoconstrictive effect of oxygen in histamine cephalalgia. Kudrow et al.18 1981 First systematic study on oxygen used for cluster headache. Fogan et al.12 1985 Crossover study found that oxygen was more effective than room air. Cohen et al.19 2009 Oxygen at 12 L/min, as well as at 7 L/min, was effective. Open in a new tab Figure 1. Open in a new tab The possible mechanism of oxygen in cluster headache. Note: TCC: Trigeminal cervical complex.

Thank you for this!

Is it an airplane ride that starts setting off the attacks, or just travel in general? Are your headache issues generally well controlled, or satisfactorily controlled, when you are not traveling? Do you mind saying what meds you are using (in part, I'm curious about what works for both CH and HC, or whether you have to somehow treat each one separately)? Vitamin D regimen comes to mind as something that might help. D3 regimen - ClusterBuster Files - ClusterBusters

@Kevin Broderick In this document (same one I sent you earlier with the O2 information), toward the end, there is a section headed "Treatments without O2." Some of them might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I would also say that the effectiveness of this anti-inflammatory suggests that you ought to be doing the anti-inflammatory "vitamin D3" regimen that has helped so many hundreds, or thousands, of people with CH: D3 regimen - ClusterBuster Files - ClusterBusters. In contrast to the anti-inflammatory you're using as an abortive, the d3 regimen is preventive.

I'm glad your new doctor is competent. Any doctor that doesn't prescribe O2 is incompetent when it comes to treating CH. Oxygen is a very good test of whether you have CH. Properly used, it works for virtually everyone with CH, but it generally has no effect on other headache conditions. There's a discussion of proper O2 setup here: Basic non-busting information - ClusterBuster Files - ClusterBusters. It's very important. In terms of using the oxygen, people eventually find their own best ways of doing it, but it is usually recommended that you want to get as much O2 into your lungs as possible, and as much CO2 out as possible, which could mean starting with a full exhale, even with a "crunch" at the end, then inhaling deeply, holding for a second or two, and then forcefully exhaling (with a crunch). As noted at the link above, you want to have a regulator that creates a flow of O2 that allows you to use a process like this (or whatever process works best for you) without having to wait for the bag to fill. Because I have no way of knowing how incompetent your previous doctors were, it's hard to say that a lot of what you have tried (or are taking) was properly tested. Indomethacin, for example, often isn't tested for long enough or at high enough levels to actually determine its effectiveness. Not many big fans here of gabapentin, if only because the side effects are tough for some, and efficacy varies. It is, however, a first-line treatment for TN. Lithium is often used as a last-ditch treatment for chronic CH. I don't think "busting" -- treating CH with psychedelics such as psilocybin, LSD, and certain kinds of seeds -- has been mentioned in this thread. Busting is the reason this site was created, so you can get plenty of information about it if you want, starting with the "New Users -- Please Read Here First" button at the top of each page.

I would say that parts of it sound like CH (pain in eye/jaw; very tight muscles) but many parts don't sound like CH to me (15 attacks/day, 8-hour attacks, pain brought on by "minor" activities such as turning head, opening mouth, brushing hair). To me, some of it sounds more like TN, and some of it sounds more like paroxysmal hemicrania or hemicrania continua. Do you have redness or swelling around your eyes? Do your eyes water when you have an attack? Does your nose run or get stuffy? Do you feel like it's almost impossible to stay still during an attack, like you have to keep pacing around or moving in some way? What medications have you tried? Oxygen? A triptan injection (such as Imitrex) or nasal spray? Steroids? Are you saying none of these consistently help? Have you been given Indomethacin to try? Gabapentin (Neurontin)? Lithium? You might consider the Vitamin D3 regimen, which has been shown to help multiple "headache" conditions: https://clusterbusters.org/forums/topic/1308-d3-regimen/

From your posts, I don't see any indication that you have cluster headaches. What symptoms are causing your doctors to think that you do?

@col, it will probably be good for you to read the general busting advice you will see by clicking on "New Users -- Please Read Here First" at the top of any page.

Are you sure it wasn't nitrogylcerin? That's what is usually used to deliberately trigger an attack. There have been people here who thought that nitrous oxide ("laughing gas") was a good abortive for them.

Yes, it's the epinephrine. This is from the "Triggers" post in the CB Files section: "Anesthetics containing epinephrine (such as Xylocaine) and nitrous oxide have been identified by some people as triggers. Ask your dentist to use something else: Prilocaine seems not to cause bad effects. Another person has mentioned carbocaine as an anesthetic that didn't trigger his CH."

Because an answer seems so important to you, I can tell you that in the last big published study of people with CH in the US (more than 1100 people, mostly members of CB or ch.com), about 13 years ago, this was the report: "55% of the US cluster headache population has had suicidal thoughts while 2% have tried to commit suicide. In addition, 50% of survey responders also demonstrated selfinjurious behavior during attacks." https://www.clusterheadaches.com/yabbfiles/Attachments/Cluster_Headache_in_USA.pdf This doesn't precisely answer first question you are asking, but it might be as close as you can get. Overall, about one in 30 suicide attempts actually result in death. If you would want to try to project those statistics to today, you might want to consider the many recent developments that might affect suicidality, most of which are included in previous posts in this thread (the study that showed effectiveness of "high-flow" oxygen, for example, was published a year before the study I have quoted from). On the other hand, I wouldn't be surprised if the percentages have remained about the same.

Just to follow up a bit more . . . If you have medical tanks (silver), the welding suppliers won't fill them with welding O2. But of course your medical oxygen supplier would. If you have welding tanks (green), and you don't tell them it's for medical use, the welding suppliers would be expected to fill them. If you tell them you want it for a medical use, as I've said they will turn you away. But maybe we're just not understanding your situation.

I'm not sure I am understanding this. Are you asking welding O2 suppliers for medical O2, or welding O2? It seems 100% impossible to me that welding O2 companies would only be supplying doctors -- that would leave a very huge hole in the economy.

Thank you, Busted'. That's helpful information to share. Would you mind saying (1) how long it typically takes to abort an attack; (2) whether you are also using it as a preventive, as the company recommends; and (3) how much you are paying per month (last I heard -- which was quite a while ago -- it was about $600/month)?

erin, probably your best bet for an overall view would be to type paroxysmal into the search bar at the top right of any page. There are no recent regular participants here who have a hemicrania (PH or HC), and I think it's safe to say that for those of us who are active, our knowledge is all second-hand. I assume you are using Indomethacin. my sense over many years of seeing people here with hemicranias is that busting doesn't help much unless it's a pretty constant thing, every five days or every week, which most people for good reason don't want to undertake. But you might get a different idea from what you find from a search. On the other hand, the vitamin d3 regimen has (as I understand it) been quite helpful. You can send a message from here to xxx, who is called "Batch," and he will probably let you know what he has learned about this treatment and PH (to send him a PM, click on the envelope icon (above the search bar) and put xxx in to "To" line).

It's a great story about a brave, brave man. It is remarkably true of people with CH that, as you say, they resist burdening anyone else with their struggles. It's also a sad story to me, because even then there were treatments that could have helped him, but it sounds like he got nothing from his doctors (another common theme for CH). Thank you for taking the time to write to us. I might be mistaken, but I think there has been at least one other person who experienced remission after cancer treatments.

Please remember to ask the dentist not to use anesthetic with epinephrine. If you do have CH, it will almost certainly trigger attacks.