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you need to do the loading doses with the d3 and k2, it's one of the most important components. calcium has been taken off the list btw. for the nausea: never on an empty stomach. take a vitamin b multi and not b12. you need to be taking the whole list of supps for best results. and you need to keep taking it for more than just a couple of days. use the searchfuntion here for more info on it. it has been one of the biggest impacts on abortion/prevetion together with psychedelics.

Thank you. We will be looking into another Neuro. This one just happened to be the earliest, everyone else was between early September to mid October for availability (yay me) I'll keep in mind the exercise and I'll get an energy drink to go with it, just in case. The regimen article you linked is what I'm on, though I'm on the lower end of doing it due to the aforementioned nausea. For now, we're not sure when it will start against with actual attacks or if at this point, something else could trigger it. The Benadryl did help to subdue it from starting 'early', between 10pm-12am, but they usually ended up happening later, between 3am-9am since it couldn't always catch it. I've tried icepacks for the pain during the attacks but they did nothing or made it feel worse. Same with a hotpad. We did try melatonin (on it's own, google says not to mix it and benadryl) and melatonin did not at all help that night. A little more info is that in general, OTC meds don't tend to help me any and they never really have. Thank you very much though, we'll keep looking into this.

not a doctor. so take this with a grain of salt. what you describe might very well be ch. you need to consult another neurologist for a diagnosis, one that is educated on the topic of headaches/ch. over the counter painmeds won't help at all. ibuprofen etc are useless. until you get the diagnosis which opens up options of O2 and preventatives you can and should look into the vitamin d3 regimen for ch and do the loading doses and the full monty, you already used benadryl and it seemed to do something right? also get some icepacks so when you get hit you can use those. if you are able to: during an attack try to do some high intensity cardio like jumping jacks, burpees or pushups. many people report being able to abort hits get some redbulls, use them when you feel a hit coming, people report aborting with this aswell get some melatonin before bed. 6-10 mg, and see if you get better sleep, or even sleep through the night without a hit. read up in the busting protocol on this site. with proper tools you don't have to suffer like you do now and you won't have that anxiety and fear of attacks looming. i emphasize on getting diagnosed asap. good luck

So last month, July 6th at 1:50am, I woke up instantly with severe pain in my eye/eye socket, left side all of my face. (almost all symptoms going forward will be on the left side). After a couple minutes of groaning in pain, it became full on sobbing in hysterics. I've had shingles. I have migraines every 2 years on/off. And I'd rather deal with either of them again than this pain. it lasted for maybe 30mins to an hour, but we did head to the ER at around 2:30am or so. While the Dr there suggested giving my oxygen, the IV with Benadryl helped quelled the pain that was left, as the episode started dying down by the time we got there. That night, it was eye, eye socket, back of my head for pain. I avoided an episode the next night, possibly because of the meds from the ER. But for about three weeks following, I had attacks at different times. My boyfriend looked into things that could help, so we got Benadryl in pill form. I took two before sleep and took two every time I woke up during the night. The times I wake up are varied, I have no alarm, I've just always been unable to sleep a full 8hrs uninterrupted. Now this became more effective in stopping a more 'immediate' attack, as for most of those 3 weeks, I ended up dealing with 1-2 attacks a night anyway. But some times it wasn't enough, in that I took some pills but while trying to get back to sleep, dealt with an attack shortly after. At least two attacks have led to me puking for a while during the episode. So far, Benadryl before sleep or compressing the fuck out of my left temple during an attack were the only things that helped, but they 'evolved' and got worse. Eventually the pain got into teeth, my cheek bone, inside my throat and on my neck. Every time an attack happens, it starts with a small pain in my temple and while that pain persists, it goes into my eye/eye socket or vice versa and becomes full blown following that. I actually got a teething ring for something to bite to help put pressure on my teeth as well to try and subside it a little. Now that I've had no attacks since 26th, I'm not 'fine'. My temple will still randomly hurt, or my eye will. I'm also experiencing random swings of nausea and this is happening every day in varying intensity and combination. I've already lost a handful of pounds because I mostly don't want to eat due to the feeling. This has also fucked my sense of temperature. My house is always 79F, not the coldest but not not at all, and there are times where I NEED an icepack or I feel like I'm on fire. I used to be able to sleep with a fan on my face and a foot out from under the sheet and feel a-okay, but it's a toss up if that changes. I finally saw a neurologist today but he was underwhelming, rude, dismissive and uncaring of the current/lingering problems. I don't experience during the attacks: Eye drooping, eye tearing, sweating on one side or facial discoloration. And for those reasons he thinks it could be chronic migraines instead. I spoke about high-flo oxygen therapy and he was dismissive of it to the point of trying to talk me out of it, due to price (He never said what the price of oxygen was, just that it seemed like it'd be too much out of pocket) and how dangerous it is, due to the contents. He also said to try 'supplements' but he literally never said what. My boyfriend found and put me on B12, Fish Oil and Calcium Citrate with magnesium, zinc and D3. I take two B12 a day, but I can't always manage two of the latter, because if I don't eat and take them, they also make feel violently ill for a little while. I won't profess that I know everything about either cluster headaches or migraines, I don't. But I have migraines as I said, and they've only been on my right side and without eye pain. I don't have documentation because I only recently got insurance in comparison to having dealt with my migraines and when I finally get migraine meds to try from my PCP, that was the last day I had them happen for now. (They come about late August to early September) But since all of this happened, it's been really hard to do most things. Due to the attacks I have gone through, there was one night where my anxiety was so high in fear of the pain that for a while, on random spots on my body, I both experienced phantom crawling sensations and parts of my limbs just twitching. Or perhaps jerking, because they were noticeable and a problem for that night. I haven't experience either of those again however. I'm sorry if this is a mess. I've been stressed and tired for long time now due to this. If you have questions, I will answer them in case I missed anything. My timeline isn't the greatest because I didn't write it down following what happened every night, I barely got any sleep for so long.

Of course! I think we can all agree that any and all help is appreciated! If there's anything I can do or say to help even one person with clusters, I'll certainly do what I can!

...ha!...plenty funny padre! you so far ahead of me i can't see your dust...i just throw some once in a while...

Hi, I’m just wondering if there’s a support group for MM in New Zealand? I’m based in Auckland and interested in connecting.

jon019 has about a fifth as many posts as I do here -- and the combined value of his posts is at least five times mine! i would advocate for proper tanks, including a large one -- your oxygen supplier is treating you like most of its other customers (COPD, etc.), who get small tanks for outside and a concentrator for inside, but they are, i am sure, legally required to give you what you need for ch. for some people a concentrator does "work," in that an attack is stopped. perhaps because it's first times using, and because you are smaller, you will get okay results from the concentrator, particularly if you combine it with some caffeine. but for reasons jon' gave, it's highly likely that you would always get better results from the tank. if you don't outrace the O2 supply at 15lpm, the "ClusterO2 Kit" mask might not make much of a difference for you, as long as you block any leakages from the nonrebreather.

I get what you mean. When you’re dealing with health issues or just trying to build a better routine, it’s crazy how small changes can completely shift the way you feel.

...ok, speaking for myself, not the "good father", but...1) cost, they lease it to you at ridiculous price, and its an ongoing scam 2) it aint pure O2, something like maybe 85-90+%, we desperately need PURE O2 3) warm up time!? golly that's a killer...every minute you delay oxygen reduces the effectiveness hugely...if it even works at all after any delay. 3) flow rate!?...if it aint enough to keep the bag filled for next breath it's nearly useless...to get more than 10 lpm ya need TWO of them linked....sheesh, try paying/travelling with THAT! 4) speaking of travel, i went EVERYWHERE with e tanks, including a job for 30+ yrs...ya gonna have severe limits with a concentrator. m60 for home, e for travel and backup. 5) they run hot...over heating is a CH symptom, why add it to your room? 6) can ya tell how i feel? it saddens me that some clusterheads have no option thru insurance or an ignorant/greedyO2 shop. if its all ya can get...God bless, and i hope it works for you...it does for some. the likely failure sadly also convinces some WRONGLY to claim the WORST comment a clusterhead can make w/o ABSOLUTE certainty..."oxygen doesn't work for me!" saved my sanity, perhaps life...starting in 1985... ...as for verapamil...i used successfully for 7 yrs...only stopping when i dialed in the oxygen and energy drink and a form of the vit D regimen. nothing less than480 mg/dy of immediate release was effective...over the yrs it seems to be the reported sweet spot for many clusterheads. in high cycle i went to 1000+. as chF said...80 is pointless... j

Thank you for all this. Unfortunately the CH O2 kit is out of stock On the supplier — they know it’s for CH - albeit I don’t know that it means they’re experienced with supporting it - though I was given a few tanks along with the concentrators. I’ll get in touch to see how often I’m allowed to have extra(s) delivered. I had a feeling the concentrators were divisive; I’m a small person and found while testing that I didn’t out-inhale the 15L/m offered by simultaneous usage. (I’m supposed to combine both to hit the high flow target). Out of curiosity, what do you feel are the largest drawbacks of the concentrator, aside from “warm-up” time and flow rate? Won’t know until I’m hit with an attack, but my hope is concentrators sufficient. If it works, it works. Maybe it’s a little optimistic. The regulator I was given for the tanks is 15L/m. Again, I don’t think I can out- breathe that without serious hyperventilation. small correction on the verapamil — I start 80mg/day (40mg twice) and then bump to 160mg/day. thank you again for guidance!

40mg/day is a very very very low dose. So is 80. As you say, you never know, but the likelihood of this helping you seems to me to be very close to zero.

@Sub Below is an excerpt about O2 from a longer post, which you might want to look at: OXYGEN You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/. The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below. You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc. Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ (There is some research that indicates that O2 is sometimes less effective when first used, and then gets better over time (pretty quickly). That's something to keep in mind, although many people get excellent relief from the beginning.) If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale. Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap). Be sure you are getting a good seal, particularly if you have facial hair. You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2. Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. There is no documentation of people experiencing “rebound attacks” from using oxygen at proper levels. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere. Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly. One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank. A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information. Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third of a tank remaining. Something to be aware of. Some notes about dealing with oxygen suppliers (repeating some of what was said above). To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working. Some people have found that the O2 delivery people are quite willing to provide them with extra tanks.

...if ya want a direct tube to breathe through, any mask will do by just pulling tube connector off mask...cutting off if ya hafto. i couldn't do because it was uncomfortable and the pressure of the mask, CRAMMED into my face, actually helped. just be sure to plug/squeeze nose so you are getting pure O2 only...which is critical.... ...btw...if you got a typical nonrebreather be sure to tape shut those dang holes on the side...a slight lift off the chin to exhale worked best for me... j

CH.com is experiencing supply chain issues for its products. Are there alternatives for a direct mouthpiece that you or anyone could recommend? I have the standard mask that came with my units but hear it isn’t ideal for CH.

Welcom to the CH club, we are all a bit mad in here, but we have lots of knowledge, so ask questions, tell us your experiences

Poke around, read up and ask questions. You will be amazed at how many people are willing to help and share experiences. Key in on Oxygen and Vitamin D, they are the most recommended treatments to get started with.

...hola!...welcome... jonathan

Thank you everyone for the insight. I’ve read it all and am very grateful. Oxygen delivery is tomorrow, cluster equipment and all. Here in New England, my access to medical resources is fortunate at times. My neurologist confirmed I should only be on the verapamil during and while leaving the cycle. Direction is to start at 40mg and raise to 80mg if side effects aren’t bad; they didn’t mention doses beyond 80mg. I didn’t realize it reaches 1g+ for some people! Everyone is different so there’s no right answer, but I’m curious if you feel the drawbacks of verapamil are curbed at lower doses. No experience or knowledge about it yet. thanks again all!

yes, get oxygen. yes, consider busting preventively during the year. definitely start on the D3 regimen, which will be as effective preventively (for future cycles) as the verap. just a few more words on the verapamil. first, it takes some weeks to get into your system, so if you can realistically anticipate a one-to-three-week cycle, there would seem to be no point, or very little point. prednisone is sometimes used as a "bridge" to quell the pain while the verap is taking effect. there are things to be said against prednisone, and using it more than once a year is strongly discouraged, but it could be considered, i would think, for cycles so short. except, as you say, why risk poking the bear. (also, verap dosage has to start pretty low, to make sure there are no issues, and then it should be monitored as it is increased. in such a very short cycle, it is very unlikely to help, and you don't want to be on it year-round in your current situation.)

as is said here -- welcome, and we're sorry you have to be here. you might want to start here for a general overview of some treatment things: Basic non-busting information - ClusterBuster Files - ClusterBusters The great people here will help you any way they can.

Hello everyone, I’m new here and just joined this amazing community after hearing how supportive and knowledgeable it is. I’m still learning my way around the forum, but I wanted to introduce myself and say hi. I’m here to connect, share experiences, and learn more about managing cluster headaches effectively. Any tips, personal stories, or advice you can share would be greatly appreciated. Looking forward to getting to know you all and contributing where I can. Thanks,

Agreeing with both above! I was put on Verapamil at the start of my cluster journey. Wish I never started it to be honest. I have had no issues with my heart or anything like that but it did mess with the feeling in my legs when I was up at around 1040 mg a day. I have slowly tried to take myself off of the stuff and am now down to 120 one time a day. They say that that does nothing for clusters but I can tell for sure that s not true. I have cut that last dose out and was clean of all verap for about 5 days before I started getting my ass handed to me in a big way and jumped back on it. And because I love to torcher myself I have done this a few times with the same results. When I was new to the cluster game I did not know anything about them at all and like everyone else dealt with it thinking it was a toothache or something. I would get hit ere and there but nothing consistent. I started the Verapamil and an now chronic. I am not saying that is what made me chronic (my wife may say different) but it has been no lookin back since. Oxygen will be your best friend! 5hr drinks are your side hustle go to that you will tend to keep in your pocket at all times, Vitamin D helps a bunch of people and I feel does bring the pain down a few notches on that kip scale. Busting is not for everyone but definitely read up on it and not in the micro feel good about my life types, you need the cluster type who are trying to achieve a pain free life. Triptans are handy to have around for when you get stuck in a bad place and need that quick relief, and injection is the way to go for that. Just my 2 cents, I am not a doctor, this is just my experience. We are all different and you will need to tweak it as you go but the people on this site are pro's.

....OXYGEN, an opti-mask nonrebreather mask or direct tube, (other sourced demand valves the Cadillac worth investigating) from clusterheadaches.com, a regulator of 15-25 lpm (Amazon), energy drink or strong caffeine drink (5-hr energy my fav, no sugar, more caffeine/taurine than most), hit that O2 the first sign of a hit, try various breathing techniques like hyperventilation, breathe and hold, slow breathing....or a combination.... ...and please do listen to Shaun...he knows whereof he speaks....suma and other triptans should only be used as abort of last resort. the near instant relief is so enticing it can lead down a rabbit hole of hit/abort/rebound....rinse, repeat and ride the agony train... best jon