Jump to content

All Activity

This stream auto-updates

  1. Today
  2. 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.
  3. 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!
  4. 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
  5. Yesterday
  6. 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!
  7. 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!
  8. Last week
  9. "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!"
  10. 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!
  11. Congrats on this success - pretty impressive.
  12. I have chronic cluster headaches. For about three months straight, I was having attacks daily. About a month ago, I started a new approach: Daily antihistamine (Zyrtec) Very small, consistent doses of a 2:1 CBD/THC tincture (microdosing (1-2 drops), not enough to feel high) Dosing every ~4-5 hours initially, then adjusting based on how I felt Immediately, things started to change: My nervous system felt calmer Neck tension reduced Attacks stopped I’m now at 33 days without a full cluster attack. I still get shadows occasionally, especially around my usual trigger time or with things like daylight savings or hormonal changes, but: They are milder I can usually stop them early with an extra CBD/TCH dose (and sometimes ibuprofen/Tylenol if it feels like the shadow might ramp) They don’t escalate into full attacks A few observations: Timing consistency seems important Microdosing (very small amounts) works better for me than larger doses The antihistamine may be playing a role as well My overall stress/nervous system state feels significantly improved This is just my personal experience, not medical advice, but after a long period of daily attacks, this has been a huge change for me. Note that I am also on on verapamil and Emgalty (and have been for quite some time), but they were not working to stop the attacks. Happy to answer questions if anyone is curious.
  13. ...that would be a double YUP!
  14. I have done a DHE treatment but it was an infusion. # days long and about 6 hours each day. I feel that it did help the first time butt he second time I did it I don't think it was an effective.
  15. I use the 5hr smaller size to help hold the cluster off until I can get to my oxygen tanks. it will sometimes abort a very mild one if I drink it soon enough in the onset of the cluster. Oxygen is the cleanest and best option for aborting a cluster as long as you get the o2 kit and a regulator that will allow you to maximize your intake.
  16. Hi Are you currently pain-free? I can't say how it should help, nor why it should cause severe headaches. Could the answer be hidden in the question? I also suffered from heartburn. I got it under control with baking soda; it was a long process, and that was before my first cluster headache attack. There are connections; they can't be denied. Best wishes and wishing you a pain-free time always.
  17. You didn't list the D3 regimen, which has been a great preventive for hundreds, even thousands, of people with CH. Might just be another one you forgot to include, but just in case: D3 regimen - ClusterBuster Files - ClusterBusters Thanks for the heads-up on Brekiya. Interesting!!
  18. never heard of it before. after reading up on it sounds like apromising abortive. the website even mentions cluster headaches. let us know how it works, please.
  19. Earlier
  20. O2 is the life saver,
  21. It's great that you got that relief, Mike. Do not let it lull you into letting up on getting oxygen! For a lot of people, the effectiveness of energy beverages tends to decline with multiple uses. (Incidentally, the smaller "energy shots," such as 5-Hour Energy, are easier to get down fast and have as much of the CH-fighting ingredients as the larger drinks (more of those ingredients, actually). Also, at least one person here has had success with V-8 energy drinks, which might be a touch healthier.) Many people would be surprised that your triptan pill helps at all (it is reasoned that they take too long to get into the bloodstream). If your attacks are predictable, some people will take the pill before the attack hits. There are a lot of other things I think you might benefit from knowing. The D3 regimen, for exampIe, and busting. I think you might benefit from reading this: Basic non-busting information - ClusterBuster Files - ClusterBusters
  22. Hi everyone, I'm a long time lurker here. I'm 55 and have been suffering from Cluster Headaches for almost 20 years. I typically enter a new cycle every two years or so and they tend to last for 6 to 10 weeks. I am currently in my third week of a new cycle. I usually use Sumatriptan (100 MGs) to deal with category 10 attacks and just got my new prescription yesterday but am a little hesitant to use it because during my last cycle I think I may have overused it and made my cycle even worse and longer. I have never used oxygen but I am trying to get that now. In the meantime, like the rest of you, I would be willing to try anything to end an attack. In recent years, I have seen that some people have had success with Red Bull but I never tried it. I have never even had one before as energy drinks just aren't my thing, but last night I bought a few of the small/standard size cans at a gas station thinking I had nothing to lose. When I got up today, I had a shadow pain in my left sinus but it wasn't that bad. I figured it would pass within 10 minutes. I was wrong. In the span of about five minutes it escalated to a full-on attack. Pain level 10. I grabbed the Sumatriptan I just got and was going to take one but something in the back of my mind said - Try the Red Bull first. I opened a can and drank it all down in three gulps. About ten minutes later - ZERO PAIN. I am absolutely amazed. It was as effective as Sumatriptan and worked more than twice as fast. I wish I had tried this years ago. I realize that not everyone has the same success with each method, but I wanted to post this to let others know in case they want to try Red Bull as an alternative. I am positively stunned at how effective it was for me. Wishing you all a pain-free future. All the best. - Mike
  23. Let me add that I use Emgality, though with little to no relief....sorry forgot to add that one in. There's so many....
  24. Hi All - I'm new here, but have had Clusters for almost 27 years. In that span I've been able to handle or abort them using every published treatment available to include: Imitrex, oxygen, other triptans etc.... for breaking cycles (sometimes successfully and sometimes not) prednisone, magic mushrooms.....and for preventing - verapamil and forgot the name but it's an epilepsy drug. A few days ago, I was prescribed Brekiya, an injection of ergotamine or DHE. Does anyone have experience with this and if so, how fast does it work? I'm having the worst cycle ever at the age of 60 and I'm at my wits end. Any plausible ideas on relief from anyone would be extremely welcomed. Thanks all!
  25. Hi,Andrew. I'm from Japan and I’ve also been suffering from chronic cluster headaches for over 10 years. I’ve tried all the medications that were mentioned, and I’ve even undergone nerve blocks and trigeminal nerve surgery. Although I’ve been managing the pain with opioids, they’ve started to lose their effectiveness, and that’s when I came across this. It seems that Humacology’s CBD oil is also available in Japan, and I wanted to check if the following product is the right one. Formula No.3 Broad Spectrum Oil 34% CBD content: 7,500 mg CBN content: 1,800 mg CBC content: 600 mg CBG content: 100 mg Net volume: 30 ml I would really like to give it a try. I’d really appreciate a reply. Miho
  26. Hi everyone. Dr. Haghdoosts presentation from Sunday evening is below. If you had any questions or insights you'd like to share that may assist in their study design, you'd be welcome to place them as a reply below and I could email them once collated. Thankyou.
  27. @Darryl Lang did you find out why your Vitamin D level is high?
  28. Hi guys. A heads up this Sunday I am privileged to host Dr. Faraidoon Haghdoost via live webinar who will share insights from his recent work in cluster headache research. During the session Dr. Haghdoost will discuss his recently published 2026 study exploring patient perspectives of cluster headache in Australia and provide an overview of the upcoming PEACE trial investigating psilocybin based therapy as a potential treatment for cluster headache. This is an opportunity to hear directly from a researcher studying a treatment approach long recognised by our community. Sunday 22 March New Zealand 6:00 PM NZDT Australia 1:00 PM Perth 3:00 PM Brisbane 3:30 PM Adelaide 4:00 PM Sydney / Melbourne / Canberra / Hobart Register and watch live: https://streamyard.com/watch/eRh3FsriH3x7 Pre-read the study being discussed: Patient perspectives on research gaps in cluster headache https://pubmed.ncbi.nlm.nih.gov/41562498/ More about the PEACE Trial (The Psilocybin Efficacy and Acceptability on Cluster headache Episodes) If you have a question you would like Dr. Haghdoost to answer regarding the above, or feedback, he is very receptive to input from the community. Please send your question or feedback to craigedstewart@gmail.com or submit anonymously here: https://forms.gle/k46Vz5CZigTRn8MJ8 and I will make sure he receives these ahead of time so they can be answered during the presentation. I imagine there are hoops and lengths Dr. Haghdoost and his team need to jump through to get studies like this across the line so I am doing this to help raise awareness and hopefully he will be able to recruit enough participants and garner enough insights from our community to give the study the best shot. Everyone is welcome - if you are interested but do not live in Australia or New Zealand and can accommodate the timing, you are welcome to register and join. Also I will try and make sure it is recorded and shared after. Thanks everyone.
  29. Hello I am an Illinois resident and a CH sufferer. I want to connect with a community of cluster busters to feel supported on this difficult journey.
  1. Load more activity
×
×
  • Create New...