CHfather

The only thing I'm wondering about in what you say here is the "pain shot" that helped you at the ER. Do you know what it was? Maybe a triptan -- most conventional pain medications, even the very strongest, such as morphine, won't help with the pain of a cluster headache attack. Or maybe your attack was ending on its own. For my money, the best straightforward guide to pharmaceutical treatment of CH is the one by Goadsby that you can see from here: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ Folks here will tell you, though, that pharma meds may be needed in some cases, but they do have substantial potential side effects that you want to minimize. Pharma meds are what the neurologist is going to give you. I have to say I'm puzzled that your doctor, the one who says he has CH, couldn't prescribe something, but maybe you have to be attentive to possible interactions with the RMSF meds. If you get another attack soon, you might try quickly drinking an energy shot such as 5-Hour Energy. Many people like them very cold. Also, you might try melatonin at night, starting with about 9mg. Yes, you are completely correct about oxygen. Go prepared to insist on oxygen and not accept no. You should consider starting on the vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ If you are prescribed injectable sumatriptan (Imitrex), which you probably should be, be sure you are aware of this very important strategy: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You might want to look into "busting," which you can read about in the ClusterBuster Files section of this board. And you probably would also benefit from reviewing the list of possible triggers that members here created: https://clusterbusters.org/forums/topic/4568-triggers/ Alcohol is the great big no-no for most people, but there are a lot of things that can set off an attack. Please stay in touch.

I'm glad you've kept at this. A headache center is your best bet. Keep a diary in which you track your pain levels and the duration of your noticeable increases in pain. Maybe also track sleep patterns and other possible factors, such as situations that might be triggering attacks (stress, climate changes, certain foods . . .). Your consistent relatively-low-grade pain might be what folks here call "shadows," but it could be something else. The more information you have, the better your chance of getting a good diagnosis. If you feel a severe attack coming on, you might try quickly drinking an energy shot, such a 5-Hour Energy. It might help. Many people prefer them cold.

Ting! Thrilled that things are generally good for you. My best to you and your daughter. Jerry

You're not alone in not wanting anyone to see you having an attack. Hiding attacks from friends and family, even from people they live with, is a very common characteristic of people with CH. I sat with my daughter night after night in the early days, when she had nothing at all to abort an attack. She chewed on coffee beans. Well, she had "oxygen," but her neurologist had prescribed a concentrator and nasal cannula, so she believed oxygen didn't work for her. She can't take verapamil because her blood pressure is already low, and she (like me) has terrible reactions to steroids, so they are out. She also reacted very badly to Imitrex at first, but she can handle it better (still not great) with the split injections. We didn't know then about energy shots, which sometimes help her. I was amazed by her bravery then, and I still am now. She really is a hero to me, and yes, my heart does break just thinking about what she goes through. No one who hasn't seen an attack can come close to understanding the horror, and even those who have seen attacks can't really understand. She was in herr early twenties when they got severe enough to see a doctor, although I believe she had them as an infant and she had had forms of them long before her twenties. Her first diagnosis was gluten allergy. Then tooth problems. Then, amazingly, trigeminal neuralgia, which neurologists continued to say. I actually diagnosed her myself, when I was watching a youtube video about surgery for trigeminal neuralgia and the doctor giving the video said something like, "First, let me tell you about some things that are not trigeminal neuralgia," and described the symptoms of CH. All this is of course a familiar story, in one form or another. She has tolerable cycles and days, and better ones, and worse ones. Oxygen works well for her on 90-plus percent of her attacks, and she has trex for breakthrough attacks. She had to stop doing the full D3 regimen because of other health issues. She's a brilliant young woman (a very successful lawyer before the CH wrecked her career), and she's not willing to be made dopey by drugs like topamax and gabapentin. This is more than you asked for, but I needed to say it all.

Thanks very much for the kind words. They mean a lot to me. I just posted this at another thread, but it seems pertinent here: My daughter has CH (I don't). Six years ago, people here helped us learn how she could manage it, after she had been misdiagnosed and mistreated for years by some "highly trained" neurologists. That's why I'm here -- out of gratitude; to keep learning as much as I can; and to try to help keep anyone I can from going through what she went through. The heroes of this board and the CH community are too numerous to mention. In my view, everyone who fights CH is a hero. Back when I came to this board, before Facebook, this was a livelier place. There were at least 20 people here, whose screen names I could still list off the top of my head, who helped me and my daughter within a matter of just a few days. It brings tears to my eyes just thinking of how much I owe, and we all owe, to them. In many ways, I'm just a conduit for what they taught me. I've been really happy lately to see some newer folks taking up the campaign here, providing great help, advice, and support. Dallas Denny, spiny, and I, among others, are getting up there in years, and so until there's a cure or at least a 100% effective treatment, there's going to be work to be done and eventually it will be done you all. Keep it up, folks, please keep it up.

My daughter has CH. Six years ago, people here helped us learn how she could manage it, after she had been misdiagnosed and mistreated for years by some "highly trained" neurologists. That's why I'm here -- out of gratitude; to keep learning as much as I can; and to try to help keep anyone I can from going through what she went through.

What a nice post, Jarhead -- thank you for it. Do you feel fairly certain that you have cluster headaches? If you do have CH, you will really want to get oxygen from your appointment, among other things (most likely a preventive such as verapamil and maybe an additional abortive (in addition to the oxygen), ideally injectable sumatriptan. Oxygen is often the tough part, even though it's listed in every physician's guide as the #1 abortive. You should probably look over the information here -- https://clusterbusters.org/oxygen-information/-- and consider printing out this journal article to bring with you: http://jamanetwork.com/journals/jama/fullarticle/185035 Neurologists don't prescribe oxygen anywhere near as often as they should. If you have CH, the D3 regimen will almost certainly help you, too. https://clusterbusters.org/forums/topic/1308-d3-regimen/ Keep us informed, please.

Well, since we're both feeling stupid, I guess it's good that it's just the two of us here. :-) Are you feeling confident that the mask you have is a non-rebreather? Regarding those vents, if you have an open one on your mask, you should tape it closed or hold a thumb over it as you inhale. Don't want any room air getting in. I guess we have established -- pending correction from someone who knows better -- that both a non-rebreather mask and a partial rebreather mask are likely to have those vents, so you can't tell them apart from that. I guess (maybe making myself stupid again, or more stupid) you could determine which you have by exhaling into it with the bag empty and the O2 turned off. Seems like some of the air you exhale would go into the bag if it's a partial rebreather, but none would get into the bag if it's a non-rebreather.

A non-rebreather definitely has the vents, if you mean the circles of small holes near the top. On a non-rebreather, at least one of them has a gasket that is supposed to keep room air out as you inhale; often one of them has no gasket. It appears to me, from some unreliable googling, that rebreather/partial rebreather masks also have the vents, but maybe they are both open, with no gasket. Again, the main difference in function, as I understand it, is that the partial rebreather lets some exhaled air into the reservoir bag, while the non-rebreather lets no exhaled air into the reservoir bag.

Well, I feel really stupid now. That is a picture of a non-rebreather mask. But I realize that while I had assumed that a partial rebreather mask looked different from a non-rebreather, they might actually look the same, with just the valve functioning differently -- keeping all exhaled air out of the bag in the case of the NRB, and letting some of the exhaled air into the bag in the case of the rebreather/partial rebreather. I can't quite figure out whether they look different, or just function differently. Hopefully someone here will be able to clarify this. Sorry that I assumed without actually knowing! Doesn't really change my main point, though, which was that the NRBs that I have seen have a hard plastic form that you couldn't suck flat against your face, as I think you were saying.

doggone it, i don't believe that your insurance will only cover an e tank, and only five e tanks a month. that sounds like a line you're being fed by the oxygen supply company. but why the heck would they want to have to keep bringing you new tanks when they could just bring you a big h or m tank in the first place? could be that they don't have regulators for the big tanks, i suppose, and don't want to bother getting you one. if you can't get better answers from them, i'd consider going out and getting yourself a big welding o2 tank. you'll also have to get a regulator for around $35, because the e-tank regs don't work on welding tanks. i have a mental picture of you sucking an o2 mask flat, but i don't think you can do that even with a cheap mask of the right type -- a non-rebreather mask. they're typically made of pretty firm plastic. does your mask look like the one in this picture? http://www.mountainside-medical.com/products/salter-labs-high-concentration-oxygen-mask-with-7-foot-tubing?gclid=CLaCkfDWkNACFZSFaQodDAwIDw if not, then i think they've given you the wrong mask, on top of everything else. morphine doesn't help ch. when i asked about seeds, i was referring to rivea corymbosa seeds. but i think louisiana is one of a few states (or maybe the only state) that has banned them. if you can get them, they're a convenient and often effective busting agent while you're growing your other supplies. more info here: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/

trigeminal nerve. the longest nerve system in the body. i think the common understanding is that somehow that nerve system is triggered by the brain -- hypothalamus in particular.

bounty, when you say the concentrator works pretty good, what does that mean in terms of the time it typically takes to stop an attack?

John, I would imagine that I'm not adding anything new to say that it has long been assumed that there is some disorder in the hypothalamus related to cycles in CH patients, because the hypothalamus -- specifically the suprachiasmatic nucleus of the hypothalamus, the "biological clock" -- responds to the environmental changes of days and seasons, such as amount of daylight. Some have described CH as a "chronobiological" condition. The "triggers" that will begin a cycle (or even bring on individual attacks) may be presently outside of the control of people with CH (although of course many have found that the D3 regimen, preventive busting, and preventive meds can somehow keep that chronobiological effect from resulting in attacks). The fact that melatonin and cortisol get out of whack when CH cycles begin is considered further evidence of a hypothalamus/pineal gland connection, since release of those chemicals is based on the biological clock. Imaging studies of people with CH show "abnormal brain connectivity" in the hypotalhamus during cycles. Practically everyone with CH has some "why?" question about that explanation -- e.g., why do I sometimes skip cycles even if I'm not doing anything preventive? -- but the evidence is still pretty strong, in my opinion.

Yep, many or even most people do. Change in pressure. If you have injectable or spray Imitrex, bring it with you. Otherwise, bring one or two energy shots.

O2 can, and probably should, work better for you than that. It could just be a matter of your breathing technique becoming better, but I'd recommend three things. 1. A higher lpm regulator, which you can buy at amazon among other places. Just be sure you get the right type -- larger tanks take a CGA 540 and smaller tanks take a CGA 870. You'll be able to tell which you need when you see the pictures. If it's 540, many people use this one -- http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator-- and there might even be a Harbor Freight store near you. 2. The mask designed for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit 3. Drink down an energy shot as you get on the O2. Some other things to remember: Don't delay starting the O2. If you have any sense that an attack is imminent, get on it. Stay on the O2 for 5-10 minutes after you've aborted an attack (you will be aborting them at some point) to help prevent recurrences. If there are open holes in your current mask, tape over them (no room air should get in). Use your hand, not the strap, to hold the mask firmly to your face. Try looking down toward your feet as you breathe. Hold the deep inhales in your lungs for a few seconds before you forcefully exhale. There are probably other things I'm not remembering. You don't say what meds you have tried, but from my perspective you have not been given a good prescription. Indomethacin helps for only a very small percentage of people with CH (and it's really hard on your insides). I have no idea why Stadol might work for you, and it's nasty stuff. Migranal is of course used for migraines. Maybe it would help CH. Look, I'm not an expert, but it seems to me like you have three non-first-line abortives there, and no real preventive. My reaction is WTF?? Does this mean you've already tried the standard CH meds, such as verapamil and sumatriptan, and somehow they didn't work (and you had the right dosages and delivery systems for them -- trex as an injection and as much as 720mg/day or more of verap)? If you haven't got yourself on the D3 regimen, do so. It's not a miracle treatment for most people, but over time it will probably help you a lot. Are you taking melatonin, at least 9mg? If you're saying you don't have MM but would like to bust, what about using seeds? They work darn well for many people, without the trip effects of MM.

zgreek, If something goes wrong at Airgas (about a 2% chance that it will), you will have learned better how to do it at the next place. I completely screwed up the first time I went to an Airgas store and the guy politely but firmly told me to leave. I had ZERO idea what I was doing; just knew I HAD to get O2. I got my composure back, drove to another Airgas store, and got what I needed.

You mean 12 lpm, I think -- 12 liters per minute. That is a pretty low flow, and you might have also had the wrong kind of mask and maybe a less-than-fully-effective breathing technique, and by the time you've made it to the ER and been seen, the attack can be too advanced for oxygen to really help. We are consistently finding that the right system leads to success for more than 90% of people. (Of course, you are imagining now that you are in the <10%. CH does that to you. But you probably aren't.) Any competent neurologist should prescribe O2 first thing. But they don't and they don't and they don't. Either they don't know about it and haven't bothered to look up CH treatments (so they are, like your doctor, essentially treating you as a migraine patient), or they see that O2 is the #1 recommended CH prescription, but they are afraid to order it because none of their other patients are using O2 and they don't feel confident, or, to be honest, they have no idea how to prescribe it -- what to write on the prescription. It is so incredibly frustrating -- and cruel -- to have these things be barriers.

Gbaby, I am so sorry you have to be here -- but very glad that you have found us! I've been here for six years and I sure get tired of saying YOU NEED OXYGEN. But YOU NEED OXYGEN. It's a fast, safe abortive that makes everything more manageable. https://clusterbusters.org/oxygen-information/ It's hard for me to imagine sumatriptan pills making attacks worse. Usually, they just don't do much of anything. So I would suggest, with some hesitation, that you ought to try the Onzetra. As you have probably seen, CH attacks are variable enough in intensity that it's pretty hard to attribute the nature of one attack to any particular thing. Start the D3 regimen again. It's track record is very strong. Be sure you take the calcium 8 hours apart from when you take verapamil. 240mg of verap is a relatively low dose. Makes perfect sense for starting out and assessing the effects (on your CH and on your heart health, which I would assume the neurologist is monitoring), but many people (most, I think, but I can't say that for certain) find that they need a higher dose for full effectiveness, sometimes considerably higher. Yeah, you really shouldn't do the prednisone again if you can avoid it. Some other thoughts: An energy shot, such as 5-Hour Energy, drunk at the first sign of an attack, can reduce the severity of the attack and even sometimes abort it. Some people like the icy cold. Strong cup of coffee might help you. Many people find that melatonin at night, starting at about 9mg, reduces nighttime attacks. You might check for triggers and be sure you don't have any of them. 24-year-olds can find themselves taking in a lot of MSG, for example. https://clusterbusters.org/forums/topic/4568-triggers/ Keep busting in mind as an option. You can read about it in the numbered files in the ClusterBuster Files section.

Yes, you're welding. No medical talk, and no medical tank terminology (welding tanks are designated by cubic feet, not terms like "M" "H" or "E" as medical tanks are). If you feel uncomfortable in case you are asked "Welding what?" you could have a story something like the one I have ready, which is that I know nothing about welding; my brother-in-law is coming into town to help my daughter and her husband, and this is what he told me to get. I haven't had to use that -- usually, they're not going to ask. You'll want a regulator also, of course, but don't buy it from the welding supply store: this one is good, and there might be a Harbor Freight store near you: http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator This will fit on any size welding tank. If you have Amazon Prime, you can get this one delivered quick: https://www.amazon.com/BETOOLL-HW9005-Welding-Regulator-Cutting/dp/B01IJI04XW/ref=sr_1_1?s=industrial&ie=UTF8&qid=1478042088&sr=1-1-spons&keywords=welding+oxygen+regulator&psc=1 For a mask, you can start with this (also Amazon Prime): https://www.amazon.com/Medsource-Adult-Non-Rebreather-Oxygen-Mask/dp/B00BBFQ64M/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1478042243&sr=1-1&keywords=non-rebreather+oxygen+mask You probably also want either a rolling stand, which is good for handling the tanks, or a stationary stand. You can get that at the welding supply place. You might want one larger tank (I think they get kind of unwieldy above 80 cu ft, and you will have to bring it back to get it refilled/replaced) and also a smaller one to have in your car.

Regarding treatments, you might want to look at this: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/ That might give you a solid starting place for asking questions. There are a few general and specific resources about treatment here: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ If we could *@#(^ing attach things here, I'd have more to give you, including a document, "20 Facts About Cluster Headaches," and another called "Living with Cluster Headaches," which has 27 personal narratives from people with CH. If you PM me with an email address, I'll send them to you. Does she/do you feel confident that she's treating her CH as effectively as possible? Does she have oxygen? Is she doing the D3 regimen? What pharmaceutical meds, if any, is she using? What non-pharma treatment, such as melatonin and energy drinks? Is she giving any consideration to "busting" -- using psychedelic substances to end CH cycles and perhaps prevent new ones?

Evan, which is it? In your post at another thread, you say "You might want to give Big Ox O2 a try. I've had success and I like the portability. www.bigoxo2.com" But here in this thread you strongly seem to be saying that you haven't tried it yet. Other people have mentioned versions of this kind of O2 system. I have said that I very seriously doubt that it's enough O2, and high enough purity, not to mention that it's obscenely expensive. So far, no one has come back to say I was wrong. So, if you are offering a sincere suggestion and it's just your phrasing that is confusing, you are appreciated for doing that. If you're trying to sell something that won't work to prey on others' suffering, you're not appreciated.

>>>But to the last question in my previous post, is it a case where your body HAS to go through this cycle?? And if you interrupt it, its gonna come back even worst? <<< The short answer to your question is no. Many people, even people with chronic CH, become pain-free for long periods of time. Often that's a result of busting, but many say that the D3 regimen has had similar good effects for them, and some find that verapamil is an effective preventive. At some point, however, until there's a cure, it is in fact likely that it will come back and be worse, because that's the way CH is. I don't know if it's officially a "progressive" condition that becomes worse over time, but that is many people's experience -- longer cycles, more painful attacks. Which is why you need to learn what works best for you -- so you're ready for that and you can manage it better, with the result that even if your cycles are potentially longer and stronger, you can treat them faster and better. I have to say that your doctor sounds very uninformed. Who the heck, as an attack begins, is going to drive or even walk to the doctor's office for oxygen? What about attacks at night? Of course you need to have it in your home!!!!!

Yes, Pebbles', I tried "contributing" at the FB group, and found the mixture of assertive opinion and actual knowledge to be something I couldn't handle. It serves a valuable purpose, though. There are least three people there who used to be substantial contributors here who have found very substantial relief with DALT, while on the other hand some here did not get relief from DALT. Other things for Tim: Yes, D3! https://clusterbusters.org/forums/topic/1308-d3-regimen/ Some people find that sleeping more upright -- in a recliner or even at a table with your head on pillows -- helps with nighttime attacks. An energy shot such as 5-Hour Energy, drunk at the first sign of an attack can reduce or even abort an attack. Many people prefer them icy cold. You might want to take more melatonin. Some people go as high as 30mg. It's quite a cocktail you're taking at night, so I suppose you have to be careful about what you add to it. Generally, 12mg/day of Imitrex is considered a "safe" dose. But it has side effects, for sure, and there is research showing that sumatriptans cause rebound headaches and extend cycles. Oxygen is your way out, as we have said. I don't think the Xanax is helping with your attacks. Many people have found that skullcap is more soothing and less harsh than Xanax. You can find it as homeopathic drops or as a tea. You might be taking the propranolol for some other condition. I don't think that beta blockers like that are as effective for CH as calcium channel blockers such as verapamil, though both treat hypertension. The darn thing about lithium is that coming off it causes rebound attacks for many people. That's one reason why it is mainly recommended for people with chronic CH. I'd really consider trying the oxygen, D3, and maybe verap before stepping up the lithium.

Pebbles wrote: >>Seeds or DALT might be a consideration but can't speak to those for a bust. Only hear about prevention.<< Seeds have been used by many people here to stop a cycle, as well as for prevention. DALT not so common here, but widely used by folks at the Facebook group for remission and prevention.