Craigo

Its 6am, just about to make coffee - reading this, man - awesome awesome awesome and may your remission continue long into the future. There is nothing better than reading of a fellow warrior getting pain free. Made my day. Cheers brother Jimmy! Craig.

Thanks @Bejeeber. I would refer to the earlier posts I have shared on this migraine forum in respect my evolving understanding and views of both CH and migraine and the related alternative treatments as to the options that the OP may find worthy of her investigation; not much has changed from my side. @Amy R, welcome and glad to have you join. I would ask what alternative treatment your friend tried and found success with; whether using psychedelics or the vitamin D3 regimen, both popular alternative treatments you will find well discussed on the CH forums. It is only my personal view as a CH patient and someone who tries to read as much as I can about headache research that there is an evolving literature suggesting a correlation with gut health / microbial dysbiosis and migraine. Whether this is applicable to your migraine type I could not offer comment although I would say that the vitamin D3 regimen and psilocybin in more recent literature are both shown to shift the microbial landscape in the GI tract towards a less inflammatory profile, reducing systemic inflammatory burden and this may be a contributory pathway that correlates to some of the improvements we see in CH - the jury is still out. I would encourage you to check out the resources relating to the regimen either here or at www.vitamindregimen.com - download the guides or watch the videos and see if it is something that resonates with you to explore further. One thing that cannot hurt is having a baseline 25(OH)D vitamin D lab test to see what your level is. As for the approach of busting for migraine, I would only say that my recent experience using psilocybin for CH was both successful and an incredibly fruitful experience for my soul, and as to whether the emotional release of the medicine (only a 1g dose at 5 day intervals) had anything to do with its prophylaxis for my CH cycle is again not something I can offer any literature to support but certainly for me it felt that way. I anticipate to continue with this quarterly as a preventative strategy and spiritual / tension release alongside my continued commitment to staying on the vitamin D3 regimen year round for CH prevention and overall good health, fingers crossed. Another thing I have found recently to try and release tension and relax a bit more has been to do 2 or 3 TRE exercises per week in the evenings before bed. Strange, funky, odd - not something I would have normally tried had my odd sibling not suggested but weirdly and entirely relaxing! Every time we do these my wife is lights out within 5 or 10 minutes. I have found myself a little more relaxed so far. It is off topic to share this and I apologise but here is a video that explains it! https://www.youtube.com/watch?v=QoB9wpuO688 Hope that is of some value, I feel like I have drifted - and its very much a post from the lens of a CH patient not versed in your specific migraine type thus treat with caution and make of it what you will. Wishing you well on the journey of discovery, hoping you find your answers. Cheers, Craigo.

Thanks for joining and sharing your experience and journey. Long may your extended period of remission remain and best wishes to you.

Hey again there @jimmyogden sure thing. Again I am just a patient that read a few too many studies and followed Batch's work so please take my commentary as exactly that but... reference ranges vary slightly by laboratory, most common ones are: Serum calcium: 8.6 to 10.2 mg/dL (2.15 to 2.55 mmol/L). Your result was 9.0 mg/dL. Intact PTH: 15 to 65 pg/mL (some labs use 10 to 65 or 16 to 77 pg/mL). Yours - 47 pg/mL. If Pete were active I am confident he would say thats a green light to take another loading as your PTH is relatively high and your calcium on the lower side of mid-range. The risk of issue with a further loading dose is minimal and the benefit of further CH improvement is a goal worth aiming for IMHO. But even increasing to 25,000iu per day for some time I am sure you will see an improvement. I am remiss that I did not mention magnesium in my original reply albeit just made a presumption that you were getting the 400mg or as much as tolerable. Whilst some would say its used up in the conversion of vitamin D3 through its various forms, I know as much as to say it is a necessary cofactor in those enzymatic reactions but just like the starter motor in your car, it isn't consumed each time you turn over the engine but you do need sufficient amounts of magnesium as you increase the demand on the liver to convert the vitamin D3 into its storage form 25(OH)D - the form we measure in the lab test. Anyway good luck take care keep us posted.

Greetings to all thanks @Dallas Denny and hey @jimmyogden, great to hear the headaches are better- that is the main signal and a drop in attack frequency even without full remission is a signal the regimen is doing its job. Hopefully with a few tweaks you could get more improvement. First, @snafu is spot on about the fatty meal. D3 is fat soluble, so a capsule taken midday on an empty stomach can leave a chunk of it unabsorbed. Moving it to right after a meal with some healthy fat is a single easy change and on its own it may lift your numbers. On the 56 to 52 reading, I would not read too much into the drop. Most D assays carry a 10 to 15 percent margin of error, so 56 and 52 are effectively the same result. You are sitting stable in the low 50s on 25,000iu a day, and that is useful to know. The question is less why is it not increasing and more how do you push it up. Before I suggest anything I know Batch would ask for a few numbers: What was your baseline 25(OH)D before you loaded? What was your total loading dose (the standard 600,000 over 12 days, or something else)? Roughly your body weight or BMI? D distributes through body fat. If you can get them, your PTH and calcium (albumin corrected) from a recent panel. That's some private info so feel free to tell me to piss off or rather DM or whatever you are comfortable with. With baseline and total load you can work out roughly how many ng/ml you gained per 100,000iu and from there how much more you need to reach 80 to 100ng/ml. Options to consider, in the rough order I would try them: Switch to a nano-emulsion or micro D3 drop. These bypass a lot of the GI absorption bottleneck, so you get more into your blood per unit. If absorption is your limiter, this moves you without raising the dose much. Where are you located, perhaps can find a link to suitable product. A partial top up load. As a rough rule of thumb, 100,000iu units shifts serum about 10ng/ml. To go from low 50s to the 80 to 100ng/ml band you are likely looking at something around 300,000, taken over a few days the way you did the original load. For context, that is not an extreme number. Renu Mahtani used 600,000iu loads across her psoriasis case series of around 90 patients, with some staying on 30,000iu a day or more until clinical remission and adjusting from there. And here in NZ, Starship runs stoss therapy at a single 600,000iu dose for deficient kids aged 5 to 18. So an extra 300,000 spread over a few days sits well inside what is done clinically. That said, you would want to see your PTH and calcium and hopefully are able to discuss with your doctor A short course of calcifediol instead of cholecalciferol, then back to D3. Calcifediol is already a step down the activation pathway, so it raises 25(OH)D faster and more reliably, handy if absorption is the issue. A short run could lift you into range, then you revert to normal D3 for maintenance. Hope that is of some help there mate, again - feel free to DM. Cheers, Craig.

I hear you when it comes to changing cycles - can be somewhat unsettling. Glad that you haven't had a full blown attack in a few weeks and that you have O2 on the ready. Heres hoping that your cycle is short lived and that it is over soon. On the D3 regimen side a couple of things could help tweak it and for that you'd want to have the follow up lab tests at the 4-6 week mark - you'd see where your 25(OH)D level got to and if within the target of 80-100ng/mL. Did you have that lab measurement and did the loading dose get you up into that range? Cheers, Craig.

Hey there Jimmy. I would say you sound like you have been doing the reading and I reackon you are onto something with the D3 regimen down year round along with intermittent preventative busts and hopefully it never comes. As for diet, there was that small ketogenic study - I just don't know about caveman diet, by that I presume you mean meat - and meat alone, I am not sure that the microbes in your colon would thank-you for that and I suspect in time we might see that the state and composition of the microbiome influences the disease in ways we currently don't understand. I am one for the D3 regimen year round and 3-4 monthly busting (more so than ever now given a recent 16 day cycle was aborted with the MM - 2nd dose). If only there was a magic prescription of things we could do to guarantee ourselves no cycles would come but thats currently a well-wish, best we can do is - as you say, stock up and implement those things that are tried, tested and true as per the community, be that traditional or alternative treatments. I think you'd be hard pressed to find a more definitive guide that Bob Wolds Pocket Guide as a resource of most all treatments, last time I looked. Worth having a look if you have not done so before! Cheers and all the best. Craigo.

Dude I tried to do this some time ago to this very song!!! Good choice of song for it man. You'd be able to achieve this with AI somehow if you were open to using it for this - there are some amazing open source generators floating around on Github that I had bookmarked to circle back and look at this again. If you want me to jump on and add this to list of projects I'd be more than happy to investigate for you. Let me know bro!

Fellow Kiwi here. Sorry is the first thing I would say, and dang that it has extended this long, I get you'd be feeling a bit down and like when the heck is this going to come to an end. CHFather is right, oxygen - it's key. Were you able to get the GP to write a letter and refer you to your DHB respiratory team for funded supply? If not - push back on the GP hard. They probably don't know the protocol. If respiratory team denied cover, push back again - ask for a reason in writing from your GP and to see the correspondence (and send it to me so I have it on record along with my own tribulations - I am not going to let this rest, we need change in NZ re access to o2 as it is inconsistent and I believe comes down to lack of education). If you can't get it funded and can afford to pay for it, then it would be worth it - all you need is a letter from your GP (if they won't write it up, tell them to get on the phone to the on-call neurologist and seek their advice, that's what they are supposed to do). Send letter to BOC's medical team and they will setup an account and you can go get oxygen or have delivered. You need the Cluster o2 kit for breathing apparatus. Vitamin D3 regimen. Your doctor can prescribe D3 capsules without testing and they are subsidised, ask for 12x 50,000iu - most GP's will just write it up. You can get the lab test you need by going to lab tests and paying for it. You can get most of the other supplies at at pharmacy less the D3 and K2 (order from iHerb - 7 days its here). It's worth asking your doctor to write up the lab for calcium and PTH and most won't know how to interpret the test so just tell them to make sure it's uploaded to your portal - the D3 regimen quick start guide explains how to navigate this. I can't offer medical advice clearly but you can ask me for my opinion by sending me a message with the lab values and any other questions. Starship gives kids the same amount 5-18yrs 600,000iu as a one time dose, no testing (Stoss protocol) so make what you will of that - I suggest be practical and sensible with supplementing D3 but it's nowhere near as dangerous as some would suggest. Busting - do you have supplies and is it an option for you. I needed to do this during my recent cycle, if you need to discuss, DM me. Verapamil, what dose did they start you on and what formulation, extended or immediate release? How many times a day are you taking it? Did you consider a pred taper to see if that would, cross fingers, disrupt the cycle enough to abort it? Try dropping carbs - I am not saying go carnivore, just as the D3 regimen guide calls for anytime you fall from remission or the D3 base regimen doesn't get you pain free, go keto but include whole foods. Consider adding some of the full monty supplements on top of the standard D3 stack being curcumin, resveratrol, melatonin, quercetin. I realize I have thrown shit at you hoping something might stick, please forgive if you have tried any of these and/or any of what I said has been taken the wrong way. If you just want support - message me. I am sorry again, hopefully you are able to find the tools and support to get out of this cycle. Hang in there.

Not related to smell but there was an anecdotal post on a FB group a couple of days back from someone saying that if in the morning they have a particular song playing in their head over and over again, they are guaranteed to have an attack that evening. What happens beneath our conscious awareness where the central nervous system and layers of the mind communicate is absolutely wild. I would attest to the persons comments around often having a particular song stuck in my head first thing in the morning, much to my wifes displeasure as I crank it out on repeat for several coffee cycles, however I do not have a correlation with attacks the same day. Thank-you for sharing this and I am interested to hear more reports, if they are out there. Congratulations, from another with a history of substance abuse, for closing that chapter and may your future be radiant.

I heard a similar story from a CHer in Canada last week whom once a year picks up everyone’s fav coffee, tea or whatever (he has it written down) along with some deluxe pastries and donuts and puts on a morning tea for his oxygen hero’s at the store. They appreciate it and I know he appreciates their very efficient assistance. Love it.

No, I'm just saying in the years I have helped people around the world with Pete Batcheller's regimen I have found often times they buy a magnesium supplement whereby the 400mg dose is x3 capsules daily, rather than one capsule being 400mg so I considered worth a note - never know whom else may read this, wander over to their supplement box and find - wullah, indeed they had been taking too little. As I found the regimen kept me in remission so long and certainly believe the attacks during this cycle mild to the brain bruising experience of full kip-10's, I decided to throw everything but the kitchen sink so I am on 800mg magnesium per day, one capsule in AM and one with dinner - no stomach upset but also have added inulin as part of an OMG can't believe I found myself in cycle for so long - what can I do to improve my overall health (knowing full well that all the recent literature suggests there is never really a return to normal post an episodic cycle ending). Just to be pain free again anyway - for today, I'll take that. And I wish for you the same streak of luck to continue friend. I'll try and swing back here in a couple months and share with ya'll my updated 25(OH)D, calcium and PTH labs when I get around to taking them. I don't think I want to allow my level to drop to 78ng/mL again, which I'm not attributing to the cause of the cycle (frankly I reackon it was a good dose of life stress in Feb). It was surprising to me that it had dropped that low considering it's only the rare occasion I get lazy and flag the vitamins for the day.

Not a doctor, not medical advice. First, celebrate the win, it’s great to hear you have found it has reduced the intensity of the attacks, hopefully the cycle is short lived. You are correct in principle. With rising 25(OH)D, PTH trends downward due to improved calcium homeostasis however a couple thoughts for you and your lab values. 1. PTH is not a static marker and fluctuates based on circadian rhythm, dietary calcium intake, hydration status, assay variability and even lab timing. I would think a shift from 46 to 55 is fairly small and within normal variability. 2. If dietary calcium is inconsistent or on the lower side, PTH may rise slightly to maintain serum calcium, even in the presence of higher levels of vitamin D. Are you taking a men’s multi with calcium? Any of the doctors at my clinic don’t know much about vitamin D3 apart from that it’s important - they will order the lab tests for me, even right a script for subsidized D3 capsules but I understand they can’t get on board given it isn’t in their practice guidelines. I wouldn’t worry too much about your level, my own would be slightly higher having taken a loading dose with a baseline of 78ng/mL of 800,000iu and anticipate hovering around this level for a wee bit longer (I think I am one week or so out of this unexpected cycle that started mid-March having added MM this time round with success, it seems). Look after your kidneys, hydrate well and ensure you are taking the adequate amount magnesium (often times people miss to get the required magnesium dose often requires 3x capsules per day). Hope it helps, just my 2 cents. PFW - hope cycle ends soon mate. Craig.

Hey Mike, what size tanks do you have and do you have the Cluster O2 Kit for your breathing apparatus? Using that kit and the mouthpiece at 15lpm I am able to abort an attack in about 3-5 minutes, making a point to fully exhale before drawing back the full bag of 02. Once I have aborted the attack I step the reg down to 10lpm, slowing down my breathing but following the same technique and then down to 8 or 6lpm, again using the same technique, in order to conserve oxygen. You may find that others, and I will attest to this myself, say that if you don’t stay on the o2 for a minimum of as long as it took to abort and maybe a few more mins so for me that’s 10-12 mins, then they experience rebound attacks an hour later, staying on the o2 at the lower flow rate may be worth a shot to see if this results in fewer slap backs for you (although I get the feeling of it being counterintuitive as you want to conserve 02 if it’s arduous to replenish or a weekend etc). I also suggest having an easy to use timer, I hate fidgeting with my phone to reset timers during an attack etc, an analog one means I can easily keep an eye on the timer. Is your o2 covered or are you paying for it? I know one or two warriors that have purchased an Invacare o2 concentrator and tank filler unit so they can refill their own tanks and not worry about having to go to suppliers etc, I was and maybe still will consider this. It’s said that the purity is above 90 but less than 100% - from my conversations with those that use it with the Cluster 02 Kit mention it works for them just fine to abort attacks, albeit a bit of a costly setup to get initially. I’m sorry if I missed any other posts but I would ask what preventative meds you are taking? I find the D3 regimen has really helped reduce intensity of the attacks (when it hasn’t kept me pain free completely) and it was originally designed by Batch in an effort to improve his 02 abort times. Hope that helps, we in it together, keep us posted.

Awesome I am happy for you to get pain free and hopefully have broken the cycle. Woohoo. That must feel great! I yearn for the same, I think I’m nearly there with this cycle. For others curious and I am sure it is recorded in other threads on the forum but immediate release melatonin at 10mg before bed has been studied in a small cohort in the 90’s, 10 with and 10 without, of the 10 in the intervention arm, 5 got into remission within a week (all episodic patients). https://pubmed.ncbi.nlm.nih.gov/8933994/ There have been some other case reports of efficacy in chronic CHers as well. Here is a case series of two that was published a few years after the above study and they saw benefit in 48 hours. https://pubmed.ncbi.nlm.nih.gov/11843873/ That being said, a recent thread on Reddit had a similar report of efficacy with melatonin at this dosage but I also noted a number of replies from others that said they found it triggered attacks, so there is that - who knows if those that reported it triggered used immediate release and/or a dose close to 10mg. For the CHer at home considering it, it’s relatively safe - could be something to ask your doctor about. I’d love to see more literature as to its mechanism. I believe whilst it is produced by the pineal gland for sleep, it is also produced directly in mitochondria and scavenges free radicals, up-regulates antioxidant enzymes and stabilizes mitochondrial membranes. Based on a Mendelian randomization study earlier this year which found a number of metabolites elevated in CH patients that showed a causative risk factor for CH, those metabolites are involved in ATP production, both the electron transport chain and the glutathione cycle, and suggests to me that a feature of CH may be disruption / inefficiency in how we produce ATP, the cells energy currency. https://pmc.ncbi.nlm.nih.gov/articles/PMC12988619/ I am curious if this results in a metabolic crisis where, as the body moves from wakefulness into sleep and the energy requirements of cells change, the mitochondria are unable to meet the energy demands for the processes involved in sleep, triggering an attack. I am also curious as to why / how DMT is able to arrest this crisis - is it temporarily boosting ATP production via calcium flux at the endoplasmic reticulum via chaperone receptor S1R - Sigma 1? These are findings they are now investigating in the context of Alzheimer’s. My mind is also curious as to the 2024 thought piece of Jonathan Borkum whom suggests Lee Kudrow's earlier hypothesis of hypoxia in CH may indeed hold some relevance when considered in this context, however as the author suggests, it may not be low oxygen that triggers the crisis (as researchers were able to show and thus the theory was largely left in the 90’s), more rather an issue in the way in which cells sense subtle changes in o2 levels during the sleep / wakefulness cycles and, if I follow his hypothesis correctly, suggests the accumulation of hypoxic inducible factors (HIFs), which are normally continually degraded in the presence of oxygen by enzymes, as somehow being related to this metabolic crisis. https://pubmed.ncbi.nlm.nih.gov/39728749/ There is a PhD that talks about this in a roundabout sort of a way, Chris Masterjohn. Well worth a watch of his presentation on SSRI’s and ATP. Whilst unrelated to CH, many of the aspects touched on above are discussed in more detail in this presentation including melatonin, serotonin, DMT and ATP. He suggests that when we sleep our mitochondrial energy production drops, as does the energy requirements of the cell so that there is always an excess of ATP to meet metabolic demands. https://youtu.be/lkPUHw1oPd8?si=UjadSDEym-V3dAA1 I am sorry I have hijacked this post. Just thought it’d be worth sharing that insight but notwithstanding, long may your remission period continue!