CHfather

The folks there might be able to help you. That group is not well liked here, but that has to do with "politics" more than whether people there can answer your particular question. (Leaders of CHSG tend to fight against the alternative treatments -- "busting" -- discussed here, which is not appreciated.) The group I was suggesting is just called "Cluster Headaches." The top, pinned post at that group is about 5-MEO-DALT.

Kev', I would suggest that you also post your questions at the "Cluster Headaches" Facebook group. More people will see it there. You have to request membership in the group, so it might take a little while. I tried to put a link here to the group, but the system won't let me.

Thanks, urs. I will look into it.

Thanks, Pebs.

Thank you, Andi'.

:-)

Jcf', I hope what you're doing now is going to help you. But . . . . Does "tried everything" include the vitamin D3 regimen that has helped hundreds of people (see the ClusterBuster Files section of this board)? Does it include busting (see the numbered files in that same section)? Is your oxygen system optimized -- high flow regulator, top-quality mask, best breathing strategies? If you were on verapamil, was the dosage high enough -- 960mg/day or more -- to actually work? Usually a mess of meds just creates a mess.

CH girl, it would be good for you to start a separate thread, but I'll make a few suggestions here. The vitamin D3 regimen, which is described in the ClusterBuster Files section, has helped hundreds of people, You should definitely strongly consider starting that. Also in the ClusterBuster Files section, you will see a file called "Extending Imitrex." That will show you how to use less sumatriptan with each injection. There is pretty strong evidence that sumatriptan can cause rebound attacks and possibly extend cycles, so you at least want to minimize your use of it. It's pretty common for people to also take a pharmaceutical preventive. Usually that's verapamil. Have you tried that? If you don't abort your attacks within 10-12 minutes using O2, you should probably consider upgrading your O2 system, with a higher-flow regulator and a top-quality mask. Can tell you more about that if you're interested. Busting has helped many people here manage their CH better than pharmaceuticals. You can read about busting also in the CBFiles section, in the numbered posts.

Well, since your O2 seems to be losing effectiveness, I would consider all those things. Some folks say the mask alone gives the 10-20% quicker aborts. Others have said that they get at least as good results from the "red neck" system I suggested you should look up. Higher flow rates are mostly important if you are prevented from using a fully-effective breathing method because you have to wait for the reservoir bag on the mask to refill. For some people, MM doesn't work but other substances do (LSD and LSA/seeds). The seeds are easy to get and legal to possess, and simple to process, and they generally have no psychedelic effects at all at levels needs to treat CH. The conferences are generally considered life-changing, or at least dramatically life-improving, events by people who attend. Info in the "Conferences" part of this board.

Shay, thank you for being a supporter!!!! I would suggest that you (or he!) start a thread in one of the other forums here (Share Your Busting Stories is a good one, even though you probably don't have a busting story to tell). Let us know -- as specifically as possible -- what he's doing for his CH (meds with dosages; other treatments); what seems to help and what doesn't. There are likely to be a bunch of things he can do to make his situation better. Isolation is very common, with many underlying factors, but knowing that his CH is more manageable is definitely a very good way to start changing that.

CarAB, Many/most people have found that they benefit from upgrading their O2 system (if you haven't already done this -- it seems like you're well on top of things). A regulator of at least 25 lpm and the mask made specifically for CH can make a substantial difference (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit) You might know this, too -- Many people find that quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of attack can be helpful on its own for reducing the severity of an attack or even sometimes aborting an attack, and is particularly effective if done just as getting on the O2. There's also a recently-developed breathing strategy (by one of the best thinkers about CH treatments) that is working well for many people. Unfortunately, I can't link to an internal thread here, but you can find that technique if you enter the phrase "red neck" into the search bar at the top right. Almost no one needs the full 6mg of sumatriptan from the standard autoinjector (it sounds like you might); mos6t can get an abort from 2 or 3 mg. If you want to try reduced dosage (I can see many reasons why you might, but also why you wouldn't), there's a file called "extending imitrex" over in the ClusterBuster Files section (might be low on page 1 or on page 2). Unfortunately, I think three weeks of indomethacin is a long-enough trial period.

CarAB, how often does O2 on its own work for you? Or does it only work, when it does, along with sumatriptan injections? I'm sorry that we (or at least I) can't help you with the sleep disorder things. (I'm sorry that pituitary tumor thing didn't work out, because as you say, that is a recognized cause of CH pain.) Have you considered the D3 regimen (described in the ClusterBuster Files section of this board). Has an alternative diagnosis, such as a hemicrania, been considered? Have you tried indomethacin (a strong anti-inflammatory that doesn't work on CH but does work on CH "lookalike" headaches)?

Thanks, CDog.

Has anyone taken this medication for CH? (Namenda is the brand name.) I've seen some suggestions in literature that it might help for migraine. http://journals.sagepub.com/doi/abs/10.1177/1060028014548872 My daughter can't take verapamil for her CH, so I was thinking this might help as a preventive. Thanks.

Supporter here. What spiny said. Best support I can give is to keep up here so I know what's most important, and any tricks that just might help. So you read about people who put their feet in a very hot bathtub of water to help abort attacks. A guy who used lime juice, baking soda, and water during attacks and thought it helped . . . Sleeping more upright . . . Lots of little things to try. Splitting Imitrex doses was a big one. D3 is a very big one. Benadryl. Ginger tea for shadows. Demand valve/high-flow oxygen. Energy shots. Melatonin. BUSTING. More verapamil than doctors usually prescribe. . . . I have seen, and read plenty about, how people with CH can get pretty despairing after they have tried things (usually pharmaceutical things) that they hoped would work, but didn't. Supporters can sometimes make a big difference by taking things into their own hands and having them available, because you never know what might be a major difference-maker. I had to fight the person I support in order to get oxygen for her, and I had to figure out how to get it when her idiot doctor wouldn't prescribe it (welding O2). But having it has made a huge difference. I have no real advice about taking care of yourself. Again, I find that learning here helps me feel like I can be useful. I have definitely learned to stay completely out of the way during an attack, unless I am asked for something. Hiding attacks is a common pattern among people with CH -- often they don't want to be seen in that state. So I go away and "suffer" my own sadness, knowing that what I am suffering is nothing at all by comparison.

Great of you. Glad to help Tom. Pledge made.

There's a big long discussion of sleep disorders and CH here. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4542772/ I have no idea what they're saying, but maybe you are (probably you are) smarter than I am. From the report: >>> Up to 24 % of middle-aged males exhibit sleep disordered breathing (AHI ≥ 5) [83] and the studies suggesting an increased prevalence of sleep apnea in CH are uncontrolled [17, 20, 22] except two [19, 65]. Further, in earlier studies it is not always clear whether patients were in active bout during investigation and one study investigating the same patients inside and outside of bout does not specify how many patients were investigated outside of bout and for how long the patients had been attack-free [65]. All the patients included in the present study [51] were in active bout and we did not find a significant difference between prevalence of sleep apnea in patients compared with controls. However, patients did present more severe cases and a numerically higher apnea-hypopnea index (AHI), but it is entirely conceivable that this may have been caused by the massive over-representation of smokers in the patient group. Our patients were only investigated during the active part of the disorder and the possibility that hypothalamic dysregulation produces sleep apnea during the cluster period cannot be excluded. However, it seems unlikely that the apnea event itself is the trigger of nocturnal CH attacks, as no connection between the apnea events and nocturnal attacks were identified. Further anecdotal evidence provides no indication that treatment of the apnea alleviates the headaches [51, 65]. <<< Here's what some doctor wrote about the possible connections, saying that narcolepsy doesn't seem to be related to CH. Doctors and researchers seem to often be wrong about CH, of course. http://www.mhni.com/headache-pain-faq/cluster-headaches/cluster-headache-sleep

Yes, Monday. Hope that dose helps. In the past, did you use RC seeds or HBWR? Do you mind saying how many you used?

Well, typically it's strongly believed here that dosing on day 3 is far less effective than dosing on day 5. So that's one option. But since 3 days apparently worked for you in the past, it's possible that, as has happened with quite a few folks, your CH has developed some kind of tolerance to that particular substance, at least temporarily. Rivea corymbosa seeds work well for many people, in themselves and also when the medicine that has worked stops working. They're easy to get (and legal to buy and posses, though not to ingest). You can read the file, "LSA: Seeds of the Vine" in the ClusterBuster Files section for more info and, if you're interested, get back to us with questions.

Kenneth, just to be clear. If you are in cycle, you want to bust as a preventive measure, which means taking a dose every 5 days (usually three doses will have an effect). It helps some people as an abortive to stop attacks, but not everyone. I guess you ought to know, too, that sometimes after the first and/or second dose, it's not unusual for people to experience "slapbacks" -- attacks that are worse than usual, or occur at different times than usual, or both. If that happens, it is a sign (although an unpleasant one) that the doses are working, although they can be working even if you don't have slapbacks. Oxygen is your best friend at those times. You might want to put the words "red neck" into the search bar at the top right side of the page, which will take you to a post by Batch about en effective oxygen strategy that most people are not aware of.

Thank you for this clear and thoughtful post, Jacqui. I'd urge you to strongly consider the vitamin D3 regimen described in the ClusterBuster Files section. If it helps you stay off the prednisone, that would be a good thing. I'm glad to see that you are considering busting, too. A quick story: I went to noted big-city orthopedist because I was having pain in my knee. I was about 50 years old at that time. He sent me for an x-ray, and raved about how I had the knees of a much younger man -- no arthritis. He said I needed meniscus surgery. After the surgery, I got worse and worse, and eventually an MRI revealed avascular necrosis. I don't think a conventional bone density test will reveal AVN, but in any event my sense is that it can develop pretty quickly in a previously-healthy joint. Since we know that developing AVN is a risk of steroid use, I'm just urging you to keep considering other options. Immediate relief from the terrible pain of CH can very reasonably take precedence over any future risks, but if there's a way to minimize those risks through less risky treatments, that would seem to be the right way to go. I hope that didn't sound like a judgment or a lecture. Just a suggestion to keep considering all your options, particularly, for now, the D3.

Prednisone might help. It often does. For many, attacks come back once the prednisone treatment has ended. But your cycle might be over by then. Oxygen. Most insurance will cover it if you have a prescription. Sometimes you have to fight. You can also do as many do and set up a system using welding oxygen. Yes, there is anecdotal and research evidence that triptans can lengthen cycles and worsen attacks. You can use less with each injection (assuming it's injections you're using) -- read the file "extending imitrex" in the ClusterBuster Files section. Hot shower -- some people find that it helps. Lots of variations, all derived from individual experience -- some hold an ice pack to the head while in a hot shower; some use cold showers; etc. More than one person has found the putting their feet in very hot water in a bathtub seems to help as much as the whole hot shower. Alcohol is a trigger for many or even most. There's a list of more triggers in the Files section -- you might take a look. Usually alcohol is pretty much an instantaneous trigger; with some other triggers, the effects seem sometimes to be more delayed. Verapamil is a good pharma preventive for many. The Vitamin D3 regimen has helped hundreds (also in the CB Files section). Maybe you want to consider busting -- read about that in the numbered files in the Files section. You can try drinking an energy shot such as 5=Hour Energy at the first sign of an attack. To be perfectly honest, I would say that attacks typically do get worse over time, and cycles typically get longer. However, (a) there are a lot of things you haven't learned to use yet, and they will make it much easier for you in the future; (b) there are significant developments in possible treatments, clinical trials that will be showing results in the next year or two (including a trial of the effects of psilocybin on CH); and (c) there are enterprising "citizen scientists" figuring things out -- the D3 regimen and busting come out of those efforts.

Batch will be thrilled to hear from you! He loves success stories.

Why don't you contact Batch directly? He's a great guy, always interested in getting the D3 regimen into the awareness of people with CH and physicians. Up at the top of the page, you'll see the icon of an envelope. Click on that, enter Batch in the To line, and you're rolling. He will answer you, I can pretty much promise it. If he doesn't, let me know and I'll give you some other information.

Kenneth, I can't answer your direct question. I'm going to assume that you know that that's a whole lot of prednisone, and that continuing to treat your CH in that way is exposing you to serious risk, particularly of avascular necrosis, which has caused several people with CH to require various joint replacements (hip, knee, shoulder).. Particularly since the pred is no longer stopping your cycles (that's a common experience -- helps while you're on it; attacks return when you're off; it's generally considered a "bridge" medication for CH, to reduce pain while other meds, particularly verap, kick in; it's not really a "treatment" in the way your doctor seems to be prescribing it), you should (in my opinion) be looking for other treatments. 480 mg/day of verapamil is considerably less than many people require when they are in cycle. Some only get significant relief with twice that amount. The vitamin D3 regimen, described in the ClusterBuster Files section, has helped hundreds of people. I'm strongly recommending that you try that. If you're not staying on the O2 for 5-10 minutes after an attack has ended, you should start doing that as a way of possibly heading off subsequent attacks. You can substantially reduce the amount of Imitrex you're using by following the instructions in the "extending imitrex" file, also in the ClusterBuster Files section (looks like right now it's toward the bottom of page 1). Melatonin at night, starting at about 9 mg and working up as needed, helps some people. And of course busting, which too many people come to after what they thought would work didn't work or stopped working, or the side effects became too severe or too risky. Again -- You can read about busting in the ClusterBuster Files section, the numbered files.