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Going on my 10th year as a Clusterhead this 2025. Always been a lurker in the shadows (no pun intended) Figured I'd actually join a forum and involve myself more. Just wanted to say hi, and thank everyone over the years for sharing their experiences and advice. I have learned more from the community than my own doctors and medical professionals. I know how alone and isolating this condition can feel and decided I should network more, So hey /wave

Hello, it's nice to have a place to go were people understand. I am also fairly new. I don't post much but I do try read alot here so I feel like I'm not so alone. I have only had CH for about 5 years, chronic for the last few. I have also learned alot from this community. Everyone seems very compassionate and caring. I wish you well. Welcome !

My take on this is yes, I would continue. While 3 times gets trotted out as kind of an average number it may take to completely bust a cycle, a hard stop at 3 typically isn't recommended, if the attacks are still continuing. It tends to be more of an "as many doses as it takes" protocol.

MountainAire Medical Supply in Grand Junction, Colorado, came through for me. Unfortunately the mask provided was a joke, so I've ordered the mask system that is available on this site. First night I needed to use oxygen and even with the funky mask, it worked wonderfully to abort the headache! Yay! After seeing the tanks, regulator and mask, I have no idea why the other places were giving me the runaround. One place literally said the regulators were hard to come by so they were saving them for hospice patients. Doesn't make sense. It might be because I wanted to self-pay because we're out of network for my insurance. We've found with other medical procedures that entities get a lot more $$ from insurance then if a patient self-pays.

..LC...as the saying goes...we hate the reason you are here but glad you found us...welcome. best jon

@Bejeeber thanks for the response. Well, I'll keep using psychedelics once or twice a year for good measure. Great excuse! @Inno I'm so sorry to hear that, and I'm hoping this cycle ends soon! Do you attribute the return to any triggers? Sinuses, pressure change (flight or diving), etc or was it just out of the blue? Hang in there! @xBoss sorry to hear that. Does busting do anything for you? I can't imagine having such long cycles, by the end of mine I was DONE. I consider myself lucky (so far) and I will continue to be grateful for every single day that goes without CH. And even if it returns, I am grateful for ClusterBusters. Hope all of you can find, if not a cure, a way to get you cycles under control. Sending good vibes to you guys. Cheers

Yes, I do have a Rx. The first oxygen provider from Blanding, Utah, brought an air concentrator to the house with a canula and said they couldn't provide up to 10 liters flow/minute. They kept treating me like a patient with lung issues. What a disappointing experience. I spoke to others on the phone who said they were unable to go up to the 10 liters per minute I needed, and when they did have the supplies they reserved them for hospice patients (LinCare and Alpine Air in Price, Utah). But, I just got off the phone with MountainAire Medical Supply in Grand Junction, Colorado, and I think they're going to set me up. When I called, the lady on the phone knew immediately what I needed; how refreshing! They have the regulator to rent but also suggested buying my own to save money. Now I'm waiting for my neurologist to send them the Rx. Fingers crossed!

All you need is a provider for the tanks, you can buy the regulator you need off Amazon for under 30 bucks...... If you are looking for an O2 supplier to rent you a high flow reg, you will look a long time. Most of them don't even know they exist.

...old saying...Dr B i believe: if you are not sure a med is working...it's not! but, when you say "cans" it sounds like that faddish and worthless "Boost". you need at least 15 lpm, a proper non rebreather mask, and a breathing technique that works for you. at best an O2 abort takes 5-8 mins...a boost can gives less than 1. you ALREADY got the breathing technique which is a highly effective one for many and the type advocated by the expert on O2. get thee some tanks (not a concentrator) for pure oxygen. and to paraphrase @CHfather, if the O2 doesnt work its one more diagnostic clue to rule out CH. it sounds to me that either you have a very odd type of CH or one of the others he mentions.. best jon

I have tried tiger balm and it definitely can reduce pain very slightly but sadly doesn't abort anything.

Absolutely love your attitude! I'm always excited to hear of people getting such reprieve from CH. I can't help but think that some of the things we have done unknowingly play a role in escaping the bunny. All else aside, it gives me hope that I'll finally stumble upon the perfect (for me) combination of preventatives to go more than a year! Thanks for sharing.

Hey CHfather and Jon...I ordered the 2ml vials because the other sizes had the self-healing tops which I didn't want, wanted the screw off tops. I also ordered the 1ml 31 ga syringes...will both come tomorrow also, I won't try to get the O2, I will get it one way or another!! So tired of this, it's wrecking my life. I started the D3 reg tonight. Thank you both for everything! I will keep you informed. Take Care.

shaydaymayday, I don't know anything about pepcid, but thanks for posting. I'm sure many people know a lot more than me that might be able to duplicate your test. Cheers, J

I don't know if this can help Mike but I hope so. I was desperately trying to find a preventative that would work for me. I tried Emgality for 7 months and it just was not effective at all for me. I don't have anything bad to say but sadly it didn't help me. I had thought verapamil didn't work when I had stopped it at 360 earlier in my journey. I later read a medical paper that the therapeutic dose for chronic started at 480-600. I than started verapamil again and found 480 did help a small amount and was over overjoyed. I am on 720 (240 every 8 hours) currently and have nights now that I sleep. I still have attacks mostly at night but not every night. Perhaps a higher dose of verapamil may help you. Your doctor may find this is appropriate to try ? Good luck Mike

Sorry to hear this but you should do a little more investigating. What things do you notice about your headaches? Same time every day? Same location? Anything trigger them like smells, foods or drink? Alcohol is a big trigger for most, can you drink a beer and not have your headache set in? What are you currently doing that successfully relives the pain your having? What type of doctor told you this and have you had a second opinion? If you do have Clusters the D3 and Oxygen are a great start to battling this and I would get on both as soon as you can! Poke around the site and ask as many questions as you have. Use the search bar at the top of the screen and if yo can think of it someone here has probably tried it and talked about it. We are a good group of head bangers here and willing to help out, as a group or in some cases one on one, anyone who is trying to help themselves

Couple more.... https://www.amazon.com/Ever-Ready-First-Aid-Regulator/dp/B08J174TP5/ref=sr_1_2?dchild=1&keywords=0-25%2BLPM%2BCGA870&qid=1607641221&s=hpc&sr=1-2&th=1 https://www.amazon.com/ResOne-Regulator-CGA-540-MR540-25B-Adjustable/dp/B0CQDBC2HR/ref=sr_1_4?crid=2QYEUHX23GXC1&dib=eyJ2IjoiMSJ9.oKBh0KlatGfqNTbgJbxBnQh9QTrxp80VJAEr-xCQNpMmfWmLaoXZFg370X98qOV96c-kmFJxZ0zjqRj7kvmnr2TZxaEKh8IaWN55CNOwtBqEfJT1MqVJBVHKG8dowLjhmwg0llt6zkFkDOQetC8CLIEnQU7inaT4tMuL_vQkRSF3MRigni7ygyh8bV6zdC2bKJ8atwCe3QFEmCLc9KO1Bl_PmLycnBqgZ1nZ42Kh0IkoYSgvXxw1HqXw-mDZFxp_olA9f51-8f9tlenyediN4e1KsKsL_dgsSTAXxQRR3ka-zug2gnjyZ0RrpUTWqoccRWNp6_5xCZUvvA3bnFt1fzN_FQ9XaQBsFjA1863R45k.qjHFLtlv4JkM0LLF-LKWLE-FSWku6Sfk6hdiJsdZ79c&dib_tag=se&keywords=25%2BLPM%2BEMS%2BOxygen%2BRegulator%2BCGA-540&qid=1739312002&s=hpc&sprefix=25%2Blpm%2Bems%2Boxygen%2Bregulator%2Bcga-540%2Chpc%2C89&sr=1-4&th=1

Here are links for regulators I have gotten, You can find them for a better price on amazon or used on ebay sometimes also Larger M60 and M tanks use the CGA540 Oxygen Standard Body Click Regulator CGA 540 From WT Farley Smaller E tanks use https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator

I would also recommend to keep on trying. You can also look into RC seeds as another option. I have had good results with them and no tripping. The thing with mushrooms is you can have 2 that grew in the same batch next to each other and one be twice as strong as the other. Some will grind them all up together, mix them and put them in capsules to try to even the dose out.

Hi everyone my name is Sade and I’ve been troubled with cluster headaches for the past 17 years and I just found a remedy that has been working for me. So ok I linked the histimine release that happens and they say contributes to our headaches so i decided to take PEPCID ✨ So I take 2 20 mg tablets of Pepcid and it’s been working wonders. Then I started using Tiger Balm, it attaches to the nerves and I guess confuses them and stops the pain ITS AMAZING so as soon as I feel the clusters coming on I run TIGER BALM on all areas effected and that usually allows me to get ahold of if… Oh and I turn my neck to the side and that gives ALOT of relief on the C2 and C3 on my neck. Now I do both and it knocks down my episodes down to almost none a day! I know it’s crazy but it’s working! I hope this helps someone! Please try Tiger Balm and Pepcid and let me know if it helps anyone!

Hi, Some of you may be aware I did some research into the timings of CH cycles and remember that it is connected to solar cycles. Recently, it has become more and more obvious that the intensity of CH attacks "peak" whenever the Sun transitions from one sign into the next - whether this be in the sidereal or the tropical zodiac. If around the same day, the Sun is also "afflicted" by certain other planets, the effect is even stronger. In regards to this, I want to make a "forecast" for later this year. Anyone in a cycle around that time, beware of MAY 14-15 2025. The reason: around the middle of May, the Sun will be Ingressing into sidereal Taurus (sensitive point of transition), On top of that, Mars will also be in parallel to the Sun (affliction).

Today marks four years since my first (and, so far, only) CH cycle. It lasted about seven weeks, with two daily headaches at 10 a.m. and 7:30 p.m., like clockwork. I had no idea what to expect and had basically been told to prepare for them to come back at least once a year. But here I am, four years later, still waiting for The Beast to show up again—and hoping it never does. My first episode was triggered during a flight descent while I had a mild sinus infection. I was pretty nervous the next time I got on a plane, but nothing happened. I was also on edge when the first anniversary rolled around, expecting it might make a comeback, but... nothing I’ve never flown with a sinus infection again—not on purpose, it just hasn’t happened—but I still think that had something to do with triggering that first episode. It’s one of those things I’ll probably never know for sure. This anniversary got me reflecting, though. I’m so grateful for finding ClusterBusters back when everything felt so grim after my diagnosis. It made me wonder—are there others out there who’ve only had one cluster, or who’ve gone years between episodes? As for “busting,” I’ve done it recreationally about once a year—sometimes just a little dose at a party, other times a bigger dose while chillaxing with my wife or friends. I do wonder if it’s kept The Beast away, but honestly, I was busting occasionally even before CH, so who knows if there’s a connection. Cluster headaches are such an unpredictable, personal experience. I hope I never have to learn more about mine firsthand. I feel so lucky to have had nearly four years without them, but I still think about them probably five times a week. My heart goes out to those who don’t get this kind of break and have to deal with The Beast regularly. You’re stronger than most people will ever know.

Hang in there Kevin, the no sleep part is the worst! Hopefully you are closing in on the end.

...the inject into another container then draw from that is what i would call a hack of desperation...like when folks run into issues hacking the statpens (seems its harder than it used to be with new design). what you REALLY need (besides OXYGEN) is the 6 x 0.5 vials of Sumatex/Imitrex. using insulin needles you withdraw 1/3 of vial which is 2 mg med....this works for most of us. you can always up the dose as needed. i could get 15 aborts per script with a much lower chance of rebounds. since you are already getting the auto injectors its just a script change. periodically this med in this form has shortages...i just checked and its available in half a dozen pharms in my area. call around ...last time i checked Amazon Pharm did not carry...but that was a while ago.... ...the D3 regimen is a near must...us seniors are low in D and it is critical for many health functions besides CH... ...now then, ALL THIS (except d3) CAN BE MOOT once you get OXYGEN. saved my sanity, perhaps my life starting decades ago. absolutely the best abort for most clusterheads when used at the right flow (15 lpm to start), right non rebreather mask, and a breathing technique best suited for you....and don't let 'em pawn off a concentrator on you...gotta have pure O2 and enough flow which they don't. ...get thee OXYGEN brother!! best jon

jon19 did say that. I checked. I just need to get vials and syringes. What do the vials look like and what size. order on Amazon? No problem re: calcium/PTH. I'll just have to include that with the other. Things are clearer to me especially since googled the test and it was explained to me clearly. As far as the O2 goes, that is still something I will look into in earnest over the Spring and Summer. If this cycle goes away as it should, it won't occur again until the Fall/Winter comes around. I get 2 cycles a year, historically anyway If the D3 really works, maybe it won't be necessary. I can only hope because this is destroying my quality of life to put it mildly. As always, thanks!

I will urge you to start the D3 right away, without waiting for a lab test. I promise you that unless you have been taking regular D3 supplements at high levels, your D is low. (If you had a thorough annual physical (Medicare, I assume), your D was probably tested then.) The best way, as you say, is to ask your doctor to prescribe the vitamin D test. If you don't want to go that way, or get refused, you can have the test done at a lab without a prescription. Your doc should be okay with ordering the test, just in general because most docs appreciate the importance of D. Also, if s/he has any respect for what you are experiencing with CH, it seems like it ought to be enough to say that you have seen some promising results from an anti-inflammatory regimen that includes D3 and you'd like to try it. (I would try to avoid telling the doc what the amounts of D3 in the regimen are, because some can get a little freaked out by that.) For the lab test, if you just google, lab vitamin d test near me, you should see places where you can go to get the test, and pricing, etc. There is also a mail-in test that you can order online (or maybe find at a pharmacy). I think this is the least reliable (and slowest) method. I hope you are splitting your Imitrex injections. Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters For a pill to have any chance of helping, it has to be taken at the beginning of -- or before the beginning of -- an attack (some people can do that if the attacks come at predictable times). I'm sorry you don't have O2. Some people get good abortive results from deeply inhaling cold air, from an air-conditioning vent or outside, if it's cold out. Please get back to us if/when you are considering busting. This isn't the right board for discussing it, so I'll just say that there are substances that you can legally buy and possess that are just as effective as MM (eliminating the sourcing problem you mention). And they are typically tripless.

I use Tiger Balm or Olbas oil or both. They don’t usually stop them, but bring the pain level down. I use Atomic Fireballs under my tongue on the headache side. The fireballs came from a member, Ricardo, who used hot sauce under the tongue. I also use Monster Energy drinks.

Maybe someone will give this a try. Do you use the Pepcid as a preventive or to stop an attack that has already started? Just as a historical perspective, I will mention that the antihistamine Benadryl has often been shown to be quite effective, and the overall D3 regimen is also an antihistamine method. Pepcid works on different histamine receptors than Benadryl (Pepcid, H2; Benadryl, H1), and it does seem (to me) that Benadryl might get more effectively to pain sources, since Pepcid works mostly on gastric/digestive tract receptors. Regarding Tiger Balm, there has been discussion of it over the years, and several people have said that it gives them some pain "relief" by being unpleasant enough that it distracts them a bit from the CH pain. You can read input about this by putting "Tiger Balm" into the search bar that is at the top of any page. In your 17 years of CH, I assume you have, as people often say, "tried everything." Are you not using oxygen, or the D3 regimen, or anything besides Pepcid, Tiger Balm, and turning your neck to manage your attacks?

Yeah, the beginning 25 years ago was fairly easy. I had a couple week stint the first year and probably only about 4 out of the first 10 years were in cycle. These days I'm fighting a once per year average with twice in a year countering the zero years and the cycle length has reached 100 days. :O

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.

You’re so right that the results have to come from the forums, as the results of the med trails are always statistical and most of the times not first hand by trail participants. I’ve been in the Aimovig trail in 2019 and Emgality trail in 2020. On both occasions trying to break my cycles as the meds (verapamil, naratriptan, sandomigran, prednisone, D3) I took were not sufficient anymore while the beast was jumping very ugly 8-14 times a day with kip 8-10 very often. I had 5 rounds of Aimovig and it did not break my cycle. It was only when I upped my verapamil from 600 to 720 that I noticed in hindsight brought the relief of ending my cycle. Aimovig had no side effects besides a minor obstipation. The Emgality I took last year also did not break my cycle, in fact this cycle started last year June and is still ongoing now for 11 months. I do not contribute that to Emgality, I believe the beast wants to ‘play’ with me a little longer than normal. I have to say that in my current cycle before I used the Emgality I had the GON injection which also has zero effect, but also no side effects. From the participants in both trail groups I understood that 4 of of 10 had positive results, their cycles did not start. Saying this, my observation is that those CGRP medicines are not meant to break cycles, it is to prevent them. Once in cycle there is little one can do apart from having your rescue meds on stand by and try to ride it out the best you can.