CHfather

Regarding the O2, I would recommend that you contact the oxygen supplier in advance and make sure that they understand that he has CH and has specific needs. Specifically -- tanks of oxygen, not a concentrator. I say tanks, plural. At least one very big one (an M or H tank) and one smaller, more potable one (an E tank) for the car or work or whatever. These tanks require different regulators, so you'll need regulators for both. The regulators should go up to at least 15 liters per minute; if you can get 25lpm, go for it. And a NON-REBREATHER mask. Preferably, a mask for each tank. They're cheap. A lot of oxygen suppliers never deal with a CH patient and have no real idea what is needed (some of it might be specified in the prescription the doctor wrote, but most won't be), so you have to check and maybe insist, so they deliver the right things the first time. You should seriously consider ordering the mask that is made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit It will help him abort attacks faster. If the people who deliver it are more than just delivery people, have them set it up and show him the basics of using it. Racer is one of the real O2 experts here (he teaches sessions about using O2 at the ClusterBusters conferences), so he or others might have something to add.

Well, we know that his D level is still very low, so indeed you do have to give it time. The oxygen and trex he was prescribed today will almost surely make such fierce attacks very, very unlikely in the future, and getting his D level up will benefit him in future cycles (if he has them) or in this cycle if it continues for very long. Soon his worst suffering will be a thing of the past. I'm not saying that anyone with CH can or should ever consider himself/herself "lucky," but he got a quick diagnosis, a good doctor, and other good advice, and hope of a treatment (Aimovig) that might eliminate his attacks, all of which is true of only a very small percentage of people with CH (the average time just to get a correct diagnosis is 3-5 years). No consolation when he is suffering and you are suffering, too, but a very good thing.

While no one can say anything definitive given the many forms that CH takes, I haven't heard or read about long (up to five hours) attacks with that fluctuating quality. But I haven't seen or read everything -- far from it. In a sense, your best bet in my opinion (aside from a specialized headache clinic) is to get on CH meds, particularly oxygen, and see if they help. Another approach is to try indomethacin, a medication that usually doesn't help CH but does treat some other conditions like CH. You could do both, oxygen and indomethacin. Easy for me to say, but hard to do without a supportive doctor. You don't know anyone who's an EMT or something who can make an oxygen tank and non-rebreather mask available to you? Or maybe you know someone who welds (or you could set up a welding-O2-based system, which would cost you about 100 dollars for a test).

Thank you. How's your son doing?

I don't know about the amount of taurine in various products, but I will say that one small 5-Hour Energy has twice as much caffeine as an 8 ounce Red Bull (and many 8-ounce Monster drinks). Just for quick drinkability, many prefer the smaller "energy shots" to the full-size "energy drinks," and you don't have to drink nearly as much to get a lot of caffeine.

Welcome, Oli'. Let us know how the O2 goes. What caffeine/taurine combination did you use? An energy shot? Energy drink? Something else?

Hmmm, your overall headache pattern isn't CH-like -- two or three a month. Usually CH attacks are an every-day thing. For people with episodic CH, that usually happens over some time period, maybe 6-8 weeks, starting at regular times of the year, with one or more attacks pretty much every day. This is a very big generalization, but they are called "cluster headaches" because for people who are episodic they "cluster" during certain time periods. And the cigarette smell isn't something I've ever heard of. All that plus the duration of some of your attacks and the up-and-down nature of the pain during an attack make me wonder. Any chance of getting to a headache clinic? I see there are some places that at least call themselves that in Spokane, and surely there are some in Seattle.

Bonds, it does sound a lot like CH. Very sorry for all you're enduring. The only aspect I would say is not classic CH is the multi-hour attacks of fluctuating intensity -- but maybe some others experience that. Not everyone with CH vomits, but many do. Does your eye get red, teary, or droopy? Runny or congested nose? Those are other standard symptoms. Do you have periods of time (weeks or months) when you have attacks, and then periods when you have no attacks? It's possible that you have a CH "lookalike" condition such as hemicrania continua -- but the regular nighttime appearance of your attacks suggests CH to me. If you have CH, topiramate is not the first best medication. Are you able to go back to your doctor with more information and a request for different meds (verapamil, oxygen, and a nasal or injectable triptan would be the typical first-line pharma approaches). In the meantime, some things to try: Quickly drinking a cold energy shot (such as 5-Hour Energy) at the first sign of an attack; standing with your feet in very hot water during an attack; drinking ice water through a straw onto the roof of your mouth at the beginning of an attack (trying to create "brain freeze"); inhaling cold air from an air conditioner. None of these are perfect or completely reliable, but some sometimes help. Also, you could start the D3 regimen. Read about it in the ClusterBuster Files section of this board and also here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

'mandy, Yes, that is the mask. Verapamil at fairly low doses (less than 360mg/day) doesn't seem to block the effects of busting, or at least not to block them fully. I think we just don't know about the effects of doses higher than that. Getting back on D3 will almost certainly help him, as Racer said. Gotta take the whole regimen, as I'm sure you know. There might be an effective pharmaceutical treatment available soon. Erenumab (sold as Aimovig) has shown itself to be quite effective against migraine, and studies have shown that it should also work against CH. It's available now for migraine. The long-term effects haven't really been studied at all. For now, it seems like D3 is a better alternative.

'mandy, I'm sorry for your husband's situation, and I know it's very rough on you, too. Let's start with O2. I take it he's not using it at all right now, because he can't get tanks affordably. Not sure exactly what that means, but many people find that welding oxygen is easy to obtain and less expensive over the long run than medical O2. Can tell you more about that if you want. You say he has the correct mask: Do you mean the "Optimask" or "ClusterO2 Kit" that is made specifically for CH, or do you mean he has a standard non-rebreather mask? I'm going to say that 90-plus percent of people who use oxygen in the most effective way get excellent aborts -- flow rate of at least 25lpm; special mask; tanks (not a concentrator); effective breathing technique; and quickly drinking an energy shot at the start of the attack. If he wasn't doing it all that way, he should try again. We can walk you through it. (I'm going to guess that it might be hard to get him to try O2 again -- It's a perfectly reasonable but sometimes frustrating thing about people with CH: they just don't want to get their hopes up again and then be disappointed.) I can't comment on that effect of the Trex injection, but do you/he know that the injections can be split so each one is a smaller dose? Most autoinjectors deliver 6mg; but virtually no one needs more than 2mg, or 3mg max, to stop an attack. A lot less expensive, too. Here's a file. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Note also that many people are getting sumatriptan in vials with syringes so they can administer their own doses. His doctor was almost certainly wrong about his D level being too high. Strongly urge you to directly contact Batch (who developed the D3 regimen, and who will be happy to help you -- do not hesitate to reach out to him). Send him a message from here: https://clusterbusters.org/forums/profile/17422-batch/ Shrooms have to be taken every five days, usually at least three times and generally more for people with chronic CH. Triptans block the effectiveness of shrooms, so he can't use the Trex while busting with MM.

There is a tendency among people with CH to feel that an attack is probably coming on but to hope it isn't, and to wait and see. Many have learned to drink that caffeine as soon as they have the first sense of an oncoming attack. Might result in sometimes drinking it when it's not needed, but will also give a quicker abort if it is. For many people, the first sign isn't even pain, it's just a "something's wrong" feeling that they have learned to associate with CH. Please do post your other questions at "Share …."

It's not likely that the verapamil is working. Usually it's a couple of weeks before there's enough in your system to have an effect. Possible, just not likely. More likely that your cycle is ending. I wouldn't go so far as to call your doctor a quack. He prescribed the right basic stuff -- verap and a triptan -- and even that is a lot more unusual than it ought to be. Not prescribing O2 first does push him toward some unfavorable category, though. The effects of triptans on subsequent attacks and cycle length has been studied with different results. Sometimes using MM produces what are called "slapbacks" -- bad or more frequent attacks after doses. It's almost certainly not going to re-start a cycle that's ended, but you might not want to expose yourself to slapbacks unnecessarily. Just my two cents.

It really is crazy-making. I think for Jon as for me that's not just an expression -- I have this momentary combination of rage, frustration, and bewilderment that feels literally crazy. And the thought that this son of a bitch has "many CH patients" that he's torturing for no fing reason at all . . . Crazy, crazy, crazy, crazy. Beyond that, Javan, first of all good on you for taking assertive responsibility for your treatment! You can almost certainly split your Imitrex injections if you decide to get them. They typically come in an auto-injector that shoots 6mg into you, but most people need only 2mg or at most 3mg. Here's a file about breaking open the injector so you can manage your own injections, but there might be newer types of injectors now that are harder to break open. Check youtube. Here's the file: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I'd take a hundred-dollar bet that the doctor isn't going to "research" MM at all, or if he does, the results of his "research" will be negative. In any event, he can't advise you about MM, and I think he's not even allowed to know you're using it. Meanwhile Yale Medical School is doing a clinical study of the effectiveness of psilocybin on CH.

Thank you, thank you, thank you.

Thank you so much for letting us know, Lenny'. Hoping for the best for you, and looking forward to learning anything about the Aimovig. I hope maybe the dex taper will stop your cycle again. Did your doctor tell you anything about the likely effects of Aimovig -- Is it supposed to stop a cycle pretty quickly, or mainly be a longer-term preventive? Will you be going back regularly for injections, even if you're out of cycle? Is it as expensive as has been reported in some places (~$7,000/year, as I recall)? I'm really praying that Aimovig's going to do what it's been said to do.

Javan, People do find, as you did, that very vigorous exercise can stop an attack or reduce its severity. More than one person here has said that sex, with another person or solo, aborts an attack for them (others find that unimaginable). But, as you say, it won't prevent an attack. Some people have found that vigorous exercise triggers an attack. As people here keep saying, it's different for everyone. I don't have CH; just my daughter does. People here probably helped save her life; I'm just trying to repay a little. If you have access to tanks and regulators, that would be fabulous. Maybe your doc friends can even get you a basic mask. The type you want is called a NON-REBREATHER mask. You can also order one from amazon or elsewhere online, for about $5. There's a better one, made for people with CH, here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit It has a tube that you can use without the mask. If your medical friends are really good to you, maybe they can fix you up with a demand valve system (in which O2 flows instantly when you want it but not otherwise -- no reservoir bag to fill and empty as on other masks).

I guess I should confess the personal source of my frustration, beyond what we have heard from scores of people here and at the FB group. My daughter didn't get good advice about her CH when she was just about Javan's age. Her supposedly top-notch big-city neurologist finally prescribed O2 after years of feeding my daughter crap drugs, having first misdiagnosed her CH for years as trigeminal neuralgia. But that neurologist prescribed a concentrator and cannula, which of course had no effect. And we hadn't yet discovered the great people at this forum. So I sat with my daughter on nights as she suffered through multi-hour attacks with nothing to treat them, believing that oxygen didn't work for her. After I found ClusterBusters, I tried to get welding O2 for her and failed miserably and foolishly. I finally contacted her medical O2 supplier and demanded cylinders and a mask. It was hard to convince them that that was what she needed, but finally I did. My daughter didn't believe it would help her, and was very resistant to the things I was doing to make all this happen -- even angry at me for insisting. And I will never forget the moment when she did try it and the pain melted away. Jon' has talked about tears of happiness; for my daughter it was giggles; it was me who was crying from happiness. To be honest, oxygen mostly still works very well for her but sometimes it doesn't, but God only knows where she (or I) would have been without it.

Javan, how many people have to tell you that if you have CH, oxygen will save your life? I have no idea what you're talking about, and it's really frustrating me. You inhale O2 at the first sign of an attack and something like 10-15 minutes later, most of the time, you can go on with your day. Triptans will f you up in the long run. Steroids will double f you up in the long run. Caffeine is not going to be effective in the long run, and you can't live a lifestyle of drinking caffeine all day. It will f you up (and, no matter what you think, it doesn't help, if it is CH that you have). ONLY oxygen will abort your attacks without eventually fing you up in some way. You're not "hooked up to an oxygen tank all day" -- you use it when you have an attack. You can make a nice portable backpack and take some with you pretty much anywhere. If you have psychological issues about using O2, I'd recommend seeing a shrink. You don't even have to use a mask if that bothers you; you can breathe through a tube so your face isn't covered. You CANNOT get by without O2 in the long run without a huge amount of completely unnecessary suffering. They aren't called suicide headaches for nothing. You can't smoke while using O2. Your dog hair and other messes and smoking pot aren't going to have any effect on your O2. And, to repeat what I said yesterday, Zomig, the triptan, is an abortive, as is Imitrex, which is the injectable triptan. They're not preventives. They are very powerful stuff that you would only subject your body to because you want to end an attack. You can't take them all day, or take them as though they were preventives, because you'd be killing yourself, and you'd also be making each subsequent headache worse and each cycle longer. There is a reason things are done as they are. I admire your truthfulness and your inquisitive spirit and your complete determination to remain as "normal" as possible. CH sucks, big time. Improperly treated, it has destroyed many, many lives. Your passions for life will see you through, and there are very promising treatments on the horizon, so that you almost certainly won't have to go through what people before you have endured. The founder of this site started taking psychedelics because for him, it was try that completely untested idea or commit suicide. Most people here who take MM or other psychedelics hate the experience. But they do it because it's the best thing they've found, with the fewest side effects -- for prevention. But they all, or virtually all, have O2 for abortion. I'm not recommending that you take psychedelics; I'm trying to help you see what CH can become if you don't deal with it sensibly. Now the D3 regimen is working pretty big wonders for hundreds of people and, as I say, it's possible that a very effective preventive, Aimovig, might be very helpful. Don't just read about the D3 regimen, do it. The guy who created it is an amazing person who will help you in any way he can, and he's there for you pretty much 24/7. And get the damn O2.

Javan, responses to a few of your questions/comments. Topamax is not a triptan. Overall, there are two approaches to dealing with CH -- prevention and aborting. Verapamil, for example, is a preventive. It won't stop an immediate attack; it's meant to reduce or eliminate attacks over the longer run. D3 is a preventive regimen. Abortives are meant to stop an individual attack, or at least reduce its severity. Your caffeine is an abortive, but it won't prevent attacks (no matter what you think). Oxygen is an abortive; triptans are abortives. The zolmig Jon' mentioned is a triptan--zolmitriptan. Imitrex is a triptan--sumatriptan. The word "busting" is used here to refer to a specific preventive method, which is taking psychedelic substances. Read about busting in the numbered files in the Files section. You only use oxygen to stop an attack; it's not a preventive. You only use it when you're having an attack. People have developed neat ways to take small cylinders with them in backpacks. It always makes sense to me to try indomethacin for anything that seems like it might be a hemicrania (your notes from your doctor friend). This rarely happens; again, I don't know why doctors don't look for the simplest explanation first. Generally, indomethacin only treats hemicranias, not CH, so it's helpful for diagnosis.

Javan, it is possible but not likely that you'll be attack free for some number of years after this episode ends. It's possible that your cycle will only last six weeks, but there is no "normal" or "typical." You really need to not assume that you won't get hit again in six months or a year, or even that this cycle won't go on another six weeks, and be ready. The effectiveness of simple caffeine typically lessens over the years for people with CH. I strongly recommend that you read about the D3 regimen and start it. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 As spiny says, do what you can to get oxygen -- the best abortive there is, with no side effects. A doctor can -- but, for crazy reasons, often won't -- give you a prescription. Without insurance, your best route might be welding oxygen, for which you don't need a prescription. Your mushroom experiment wasn't unusual. People can get attacks while taking them. Most people use them to stop a cycle or try to prevent cycles through "maintenance dosing." 5 days apart. Some people are finding CBD oil to be very effective. There's a search bar at the top right of each page. Type in CBD to find that content. Most recently, SwiftLaw posted that it has helped him tremendously. Read in the ClusterBuster Files section. Look at the Triggers document there. Keep asking.

D3 regimen as a preventive, and energy shots (such as 5-Hour Energy) as an abortive, as Denny says. Upgrade his O2 system: 25lpm regulator and best mask http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit (Just a side note that for some reason when O2 level is low in the tank, it doesn't seem to work as well.) The blood pressure med is probably verapamil. Most people need more than docs prescribe -- as much as 960mg/day. And it should be the NON extended release form. If sumatriptan nasal spray isn't working, he should get the injectable kind. Taking Benadryl 4x/day (25mg, 25, 25, and 50mg at night) helps some people. Check the list of Triggers in the ClusterBuster files section.

Oh, Denny. I'm so sorry to read this. You'll be missed here, but many of us won't stop thinking of you every time we come here, and sending you and your wife our very best wishes.

Many people with CH set up oxygen systems using welding oxygen, and it works fine for them, with no apparent complications. They rent or buy tanks from a welding supply company, and buy a mask and regulator online. Batch is usually (always?) right about things, which might make it worth the investment for you to test this with a small tank of O2. Total cost for the test would probably be around $100. Some CH people have found that EMT folks or firefighters might let them use their O2 in a pinch, so I suppose that might be a significantly less expensive way to try it, but one or two tests might not be enough to tell you definitively whether it helps you or not.

Lily', I'd do the D3 regimen for sure -- and, to partly answer your original question, several migraineurs have reported here (usually people with both CH and migraines) that busting was very helpful for them. MoxieGirl has written a lot about that over the years. I don't know how to easily find what she has said. I entered [moxiegirl migraine] into the search bar at the top right, but got a bigger mixture of posts than I had expected. But you can find things using the search bar if you're persistent enough, or maybe go to her member page -- https://clusterbusters.org/forums/profile/19896-moxiegirl/ -- and look through her posts. I know that Moxie started by doing "standard" dosing with psilo and seeds, and I'm pretty sure that worked, but then she modified her approach later. Sorry I can't be more helpful. You could PM her from her member page, too. Has anyone suggested that new migraine preventive, erenumab (brand name Aimovig), as something you could benefit from?

Thank you, Joy'. Rozen is a serious CH researcher. Seems like a strange hypothesis to me, but he knows more than I do. I don't even know what the first principle means -- "the need of double lifetime tobacco exposure" -- but I guess I might understand it if I read the whole document. Appreciate your posting this.