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  2. I would second Inno, Slapbacks are common in busting most of the time it is only on the first and less on the following busts.
  3. Today
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  6. Those could very well be slapbacks, which are very common after busting. If you are clusterfree for some time after slapbacks, this is probably a good indicator you are doing it right.
  7. Yesterday
  8. I am so glad you found something to help you get relief. That is amazing! Wishing you more pain free days and nights!
  9. I am chronic daily cluster never a break. I have been 8 years no break maybe one week here or there. I have found that when I was going through perimenopause and during my cycle that I had longer headaches instead of 45 mins to an hour, I will go 4 to 6 hours during those hormone shifts. I tried to think, when I finally noticed it was a pattern, what am I doing different or what part of the d3 regimine might be more affected or depleting. Water, water, hydrate hydrate for sure during these shifts... that made a big difference. Anemia possibly?? during my cycle crossed my mind lower iron levels plus the hormone shifts d3 drops b drops... vitamins and supplements never seem to hurt and almost always help shorten my headache. Such a personal journey on this one because we all shift in different ways but we all do cycle one way or another. Maybe there should be a study for it. I hope you find some relief in your research!
  10. WEBINAR Pain, Not Personality: Why Behavioral Medicine Matters in Cluster Headache Care Wednesday, April 8 from 7:00-8:00pm Eastern Time In collaboration with Clusterbusters, the Jefferson Headache Center invites you to join an upcoming educational webinar for patients living with cluster headache and those who support them. The session will be presented by Susan McCrea, Licensed Psychologist, who will discuss psychological and coping strategies that may help patients manage the challenges of living with cluster headache. Bob Wold and Joseph McKay from Clusterbusters will share their perspective as patient advocates and share insights from the patient community. Physicians Dr. Young, Dr. Marmura, and Dr. Nahas from the Jefferson Headache Center will also join the discussion. Date: Wednesday, April 8 Time: 7:00–8:00 PM (Eastern Time) How to Register: Click the registration link below: https://events.teams.microsoft.com/event/24bb6ffd-b82d-42cc-b970-b1b57c59a880@55a89906-c710-436b-bc44-4c590cb67c4a/registration After registering, you will receive an email with instructions on how to join the webinar. If the link does not open, copy and paste the link into your web browser (such as Chrome, Safari, or Edge).
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  11. quick question, Every time I do a shroom regiment, the day after I get headaches. Does anyone experince this?
  12. I remember @jon019 saying that his doctor gave him a certificate of medical necessity, or something like that, which helped clear the path with insurance. So the argument here is that contaminants will mess up a welding job and so suppliers are not going to let those tanks have anything but pure O2 in them. The second argument is that people here have been using welding O2 for ten, fifteen years or more without issues. It's not clear to me what the answer was, but if it was just "we don’t supply oxygen to cluster headache patients" and not the insurance thing, it could be that you were reaching someone on the industrial gas (welding) side rather than the medical side. The first time I tried to get welding O2, at a place in Northern Virginia, that's what I was told. So you learn not to ask for it in that way. 15 years ago, we got medical O2 in D.C. from Lincare. No insurance hassles, but it did require some educating about what a person with CH needs. Of course, I don't know what things are like today.
  13. Thank you so much, FunTimes! AdaptHealth is who I’m currently trying to climb the ladder with :praise:
  14. @Mordecai Give this place a try https://adapthealth.com/locations/ see if you can get to a guy named Ed Pucket. He is located in Northern Maryland and may be able to get you what you need. Best of luck to ya!
  15. I see what you are saying now. I went and made sure to read the label on my pills, and thankfully the 1 capsule is the full 400mg. Since the regimen has been effective for me so far, I'll keep doing what I'm doing now. I'll consider changes in the future if I see any worsening cycles. I'm hoping to find a PCP who's more receptive to this regimen by then. Anyways, appreciate all the information. And good luck to you, brother. Good luck to us all.
  16. Thanks for the reply. I’m in Virginia and the area I’m in only has two suppliers and the one manager I’ve spoken to this afternoon tells me we don’t supply oxygen to cluster headache patients…I ask why?!? … and get the same response the next 5 times I ask Why? I’m politely asking the why and finally asked for the next manager, which I’m sure I’ll be asking for again tomorrow. I’ll continue exhausting this company and then go to the other. My PCP has a neurologist calling me to schedule an appointment so I’ll talk to them about this too, but first think I’m asking them before scheduling is making sure there is actually someone knowledgeable with CHs before scheduling, b/c I saw on this site we have CH specialists in Alexandria, Woodbridge, Charlottesville (UVA), VA Beach. I’d rather try and work with someone who knows about them than someone who just “knows ‘about’ them.” I've also read some people getting relief from 10lpm concentrators, which I’m willing to try if I can’t get O2…not sure about the welding supply stores yet….but that’s also an option, Im just afraid of the contaminants in it … Thanks again!
  17. Last week
  18. 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.
  19. Thank you, Craig. Your information is helpful and reassuring. My attacks skipped a night a couple nights ago. Typically an indicator that the cycle is winding down. That would mean this cycle will have lasted roughly 2 WEEKS. My cycles last at least a month. Don't want to count my chickens just yet, but I am overjoyed and just so thankful for all the work that went into creating this regimen. I am also glad to hear your unexpected cycle has ended. Appreciate the information you provided. I am taking all the co-factors listed in the regimen, including a Mature Multi from Costco. I also take 1 capule of 400mg of Magnesium as instructed in the regimen. Are you saying I should up this to 3 times a day?
  20. I have come across the same issues in the past. I am not sure what country you are in, Here in the US I keep on calling and climbing the latter going from one level a=of management to the next until I find someone who understands that money is money and it does not matter who is paying as long as they are getting paid for the services they are trying to provide. I also pay out of pocket and it is actually cheaper for me. I pay a monthly fee for the home delivery service and I pay that regardless if I get oxygen. That covers 4 M60 tanks. I can order more and pay a different rate depending on the size tank I order above the 4 M60's. Smaller Mom and Pop type shops I find get the same tanks from the larger distributers and usually only get one order a week so they don't like Clusterheads cleaning them out every week so go direct to the larger supply house and deal with them direct. Be extra nice to the delivery person bringing the tanks and you will be able to get extra tanks from them on occasion if they have them on the truck. Stock up on as many extra tanks as you can store for when something goes sideways. Don't accept the "we don't serve cluster headache people" What do they care what it is used for, they are selling it and we are paying for it. The Market down the street does not care how much milk you buy why would the oxygen people care how much O2 your getting as long as you pay the price they are asking. This makes me nuts how they think they can just say no because we use more oxygen at times than others. Your other option would be to get welding oxygen and use that, but do not tell that supplier you will be breathing it. We can help you get set up with that equipment if you do decide to give it a try.
  21. 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.
  22. First time poster. Long time sufferer of Cluster Headaches. I decided to start the D3 regimen in early March, and I'm so glad I did. Like many of you here, I've had some great results. My current cycle started on March 27, but the intensity is greatly reduced, and for the first time in my life, my cluster headaches feel manageable. Simply amazing. However, I have some questions regarding my lab work. I tried explaining the D3 Regimen to my doctor, but he didn't really seem to care. I asked for the blood work, and he said ok. Felt somewhat dismissive. Anyways, here are the baseline results and the results 30 days after starting. Vitamin D3: 22 ng/ml -> 127 ng/ml Calcium: 10 mg/dl -> 9.8 mg/dl PTH: 46 pg/ml -> 55 pg/ml From what I understand of the regimen, my PTH should be dropping, right? But instead it has increased over baseline. What would be the reason for this? And any concerns I should have? BTW I am a 200lb male. Is 127 ng/ml D3 anything to be concerned about?
  23. 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.
  24. Hi everyone, I got oxygen for the first time today. I watched a demonstration on YouTube and got the breathing technique down. It definitely works in stopping attacks and that is awesome. The problem I am having is that it doesn't last. I have used almost a quarter of the tank on the first day. It stops an attack and then I need it again an hour later. Is this typical? What if anything can I do to prolong the relief? Thanks so much!
  25. Hi All, I feel for every one of you and am so grateful I found this forum. Back story, I am a 41 year old male and started getting CH as far back as high school. At that time I thought it was glasses as I couldn’t see well, and then through my late teens and 20s I thought it was due to dental issues, but they still came back. When I finally had good insurance (around 2008), I had talk to my PCP and he diagnosed me with Episodic CH. I usually get them in spring or fall and sometimes summer or winter. I was prescribed sumatriptan nasal sprays which usually work for me in 15mins, but it seems to give me rebounds, so I only use them in emergency situations. I usually suffer though the attacks and would chug 8oz of water every 30 mins, which makes it hard to go places. I found MM on accident helps. Since I found this site, I’ve been reading through the different abortive methods and finally went to my doctor to ask about the D3 regimen, which he said he could not get behind because it’s toxic levels. he is referring me to a neurologist ( I had a cat scan back in 2020 to rule out brain tumor). Im hoping the neurologist will be able to help me with the D3 regimen, but we’ll see. I was able to get my PCP to prescribe O2 (I had to ask and he prescribed two 3gal tanks), which I picked up yesterday from a local home medical supply company and they let me pay out of pocket until insurance was ran. And man oh man that was the fastest relief I’ve ever experienced! My only problem is, the medical supply store calls and tells me insurance won’t cover it since it’s for CH and they don’t accept out of pocket payments??? WTF! I called the only other medical supply store and they asked what the prescription was and told me the same thing insurance won’t cover so I can fill your prescription. So I get emotional from finally getting O2 and then sadness when they take it way a day later…. They are letting me keep until Monday at least. Does anyone know how to get past this? I had the doctor right me the prescription again. So I picked it up, but don’t know who to call or how to word it to them. I called insurance company and they weren’t the most helpful. It really sucks to have this right in my fingers, but can’t get it filled. I don’t mind paying out of pocket, I use my HSA anyway, but just reaching out to the community. Thanks, Mordecai
  26. Hi Iris Pleased you have found this link with Hormones. I cannot tolerate Oestrogen and my headaches are directly linked to fluctuating levels of hormones. I have been doing quite a lot of research on this recently particularly in the link between hormones and calcium channels (given Verapamil helps a number of people) and Vitamin D. My history: worse during perimenopause cycle lined up with menstruation and hormone fluctuations, every month, starting mid luteal phase and lasting two weeks from age 15 (now 53 and post meno) improvement during pregnancy improvement with progesterone or Depo‑Provera flares with oestrogen spikes What I have found so far: oestrogen increases intracellular calcium progesterone reduces neuronal excitability vitamin D stabilizes calcium regulation the hypothalamus is hormone sensitive TACs are disorders of trigeminal autonomic circuits these circuits are heavily influenced by calcium signalling When hormones fluctuate (perimenopause, cycles, postpartum), TACs often flare. When hormones stabilize (pregnancy, Depo‑Provera, post‑menopause with support), TACs often calm. Even though men don’t have the same oestrogen–progesterone cycles as women, the same biological theory still applies to males with hemicrania continua, cluster headache, or paroxysmal hemicrania. The inputs are different, but the mechanisms are the same. All trigeminal autonomic cephalalgias (TACs), including hemicrania continua, paroxysmal hemicrania and cluster headache involve: trigeminal hyperexcitability hypothalamic dysregulation Men don’t have progesterone cycles, but they do have hormones that affect neuronal excitability and calcium signalling. Testosterone has several effects that parallel progesterone's calming influence: supports GABAergic (calming) pathways reduces inflammation stabilizes calcium‑channel activity Low testosterone, which is extremely common after age 40, can make pain circuits more reactive. This is why some men with cluster headache or hemicrania continua improve dramatically with testosterone replacement. Men also produce oestrogen (via aromatization of testosterone). It’s lower than in women, but still biologically active. Oestradiol in men: modulates calcium channels influences hypothalamic function affects trigeminal sensitivity If testosterone is low, oestradiol can become relatively high, which may increase neuronal excitability. Vitamin D is a major regulator of: calcium movement neuronal firing inflammation hormone synthesis (including testosterone) Low vitamin D in men is strongly linked to: lower testosterone higher inflammation more reactive pain pathways worse TAC symptoms I still have a lot of research to do to confirm this theory, and I am finding it very interesting. My specialist (menopause) is also supporting trials I am doing on myself with various combinations of hormone replacement to find the right balance. She also has trialled me on H1 blockers and whilst these did not help with headaches, my allergy symptoms improved, always a bonus. I am about to start a trial of H2 blockers alongside 200mg daily of progesterone. Hope you remain pain free!
  27. 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!
  28. "Hey everyone, I wanted to share my recent experience in case it helps anyone else, especially the ladies here. I’m 37, and I’ve been a chronic episodic sufferer for 22 years. My cycles usually hit once a year (sometimes every 1.5 years) in the spring or fall and last about a month to six weeks. Up until now, I never really saw a connection between my clusters and my hormones. That changed on February 20th. My cycle started right as I began taking phytoestrogens to manage low estrogen levels. It was absolute hell. My daily attack count at least doubled, and the intensity jumped straight to an 8–10 on every single hit. I started reacting to a bunch of new external triggers, including food, which I never had issues with before. At the peak, I was hitting 5–7 attacks a day (my usual is max 3). On March 27th, I honestly thought I was dying—3 back-to-back attacks, 30 mins each, 10/10 pain, plus severe vomiting. I immediately went cold turkey on the phytoestrogens and added 9mg of Melatonin to my routine. It was a total game-changer. Within 48 hours, I dropped to one attack a day, and the intensity leveled out at a 5–6. Then it went down to a 3–4, and as of today, April 2nd, I’m finally PF (pain-free) and heading into remission. It’s honestly frustrating how little research there is on the hormonal link to clusters. We really need more focus on this, specifically for women. Stay strong, everyone!"
  29. Earlier
  30. I just made a post today that I've been 33 days attack-free after adding Zyrtec (one time a day) and 1-2 drops of a 2:1 CBD/THC tincture (every few hours). I then started searching the site to see if anyone else had tried this, and came across your posts. I also saw that you posted about the possibility that they might come back if I take the tincture everyday. I will have to look into that. Thanks!
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