CHfather

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.

Thank you!

Thanks for the thorough responses, marjs'. One more question -- Where did you get the demand valve system? Were you able to get a prescription, or did you find it online, or . . . ?

mrjs', would you mind letting us know what your experience is with the 160lpm demand valve? I have a demand valve system, and I can't get my head around the relevance of flow rate in such a system. Thank you. Hope it's great for you.

Thanks, john'. Could you maybe copy and paste this at the "Triggers" thread over in the ClusterBuster Files section? Every data point is valuable. It is not likely that MSG is the culprit here (or the only culprit), since probably not every restaurant meal is going to have that in it. I was taken, however, by your mention of canned soups (many of which are loaded with MSG) and pizza. I have had my worst MSG reactions to pizza. Some people think it's the cheese, which it can be, and also the tomatoes, but I have also learned that there are many places that put MSG in the sauce -- and toppings such as Italian sausage and pepperoni also commonly have MSG.

That isn't nearly enough verapamil for most people when they are in cycle. Often it goes as high as 960/day, or even higher. But you have to work up to that while monitoring the side effects. I don't think it typically starts working after just three days, but could be wrong about that. What about Imitrex as an alternative to all that prednisone? It's kind of "pick your poison," but I'd hate to see you needing hip or shoulder replacements in your retirement. Using the splitting-doses method with Imitrex, you can get quick aborts with a lot less sumatriptan. This is really just a question. Have you tried energy shots? You have oxygen for attacks outside of work? The D3 regimen is described in the ClusterBuster Files section of this board. It generally doesn't kick in very quickly, since most people have to significantly elevate their D levels from where they are starting. But for some people it does work relatively fast, at least to reduce severity of attacks. Your best chance of relatively quick success is to do the loading that Batch recommends.

wish i could help, but just not expert. you could try typing [truffles] into the search bar at the top of the page. i know there's been a lot of discussion here about strains and quantities. wishing you the best -- you're a good one!

If you do have hemicrania continua, there's a good chance the doc won't have a clue about it. I'd urge you to bring something with you about it. The very good news is that if it is HC, indomethacin will treat it; the not-so-good news is that indo is tough on the tummy, and you'll probably need to take another pill, along the lines of nexium, to protect yourself. All the doc needs for the "diagnosis" is to see whether the indo works or not. BTW, back to what filacibin said and your response, it's my understanding that you can still have migraine without the sensitivities you mention. However, it does seem for now at least like HC might be a good hypothesis because of the constant pain you experience. Again, though, if it's migraine, meds will help (verapamil and sumatriptans), and so will busting (see the numbered files in the ClusterBuster Files section).

Sounds enough like CH that you ought to get it treated properly. The BP medicine is probably verapamil. Low dose is kind of required at first, to make sure it doesn't affect you negatively (docs should be following up on that), but a very substantial dose is usually required to have any effect during a cycle. It's not uncommon for people to be put on a course of steroids while waiting for the verapamil to get to high enough doses to help. For many people, steroids stop the pain while they're on them but the pain comes back afterward. You should have OXYGEN -- the #1 abortive!!! And the pill (sumatriptan?) almost certainly won't help. Sumatriptan nasal spray works for a lot of people, and sumatriptan injections work for almost everyone. That's pharma stuff. (There's more, but those are the basics.) The pharmas are not without side effects, except O2. You should read the file in the ClusterBuster Files section about the vitamin D3 regimen. It's helped lots and lots of people. And give some thought at least to busting, which is covered in the numbered files in the ClusterBuster Files section. If you go to the clusterbusters.org home page (https://clusterbusters.org/) and click on the "Cluster Headache" tab at the top of the page, you'll be able to read a file about oxygen, see thorough information about treatment, and maybe locate a knowledgeable doctor. Try quickly drinking a cold energy shot, such as 5-Hour Energy, at the first sign of an attack. Get back to us -- let us know what's happening!

I guess I would suggest that amount of pain is a diagnostic criterion, but that you ought to treat it as CH (or perhaps as hemicrania continua -- see below) and see what happens. You don't describe the nature of your attacks. Do you have head pain all day every day, or do you get some number of attacks each day? If the latter, how long do they typically last? Are you able to sit or lay still during them, or do you need to pace or at least rock back and forth? Do you think the Aleve or iboprofen, or whatever you are taking now, actually helps them? What are you using now? Surely someone must have diagnosed/misdiagnosed them as migraine and given you something, such as Imitrex? If you have distinct attacks that last some number of minutes of hours, can you get oxygen to try? Oxygen is effective for a very large percentage of people with CH, but not effective for most people with most other headache conditions. Have you ever taken indomethacin? That works to treat a CH "lookalike" condition, hemicrania continua (HC), but it doesn't work (hardly ever) for CH. Also, HC pain is generally less severe than CH pain, with occasional episodes where the pain worsens. Sounds like this is a possibility for you, and it is easily diagnosed through your response to indomethacin. Here's a link to some HC information: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

Interesting that they're still using cocaine. That was the original substance used, but for quite a while it's been primarily lidocaine. Would very strongly urge your son to start now on the vitamin D3 regimen that has helped hundreds of people with CH. You can read about it in the ClusterBuster Files section of this board.

Maybe there will be an answer here to this question. I am nearly certain that there is a Portland-area group. You might try asking at the Facebook page of the group "Cluster Headaches." It's a membership group so you might have to wait a while before being accepted (I don't know what "a while" is). Your best bet might be to directly PM 1961mom, a member here who lives in the Portland area: https://clusterbusters.org/forums/user/17179-1961mom

Excellent advice from urs and amon. As they say, OXYGEN, OXYGEN, OXYGEN. I think urs meant to say "up to 1000mg/day" regarding the verapamil (or maybe he meant up to 1 gram) I assume the metoclopramide that your doctor prescribed is to protect your gut from the naproxen. Since the naproxen won't help anyway, I think you might consider dropping those two, unless the metoclopramide is for some other condition. What form is the sumatriptan in -- pill; nasal spray; injection? You could try melatonin at night, starting at about 9 mg and working up if necessary to find an effective and acceptable dosage. You could try an energy shot, such as 5-Hour Energy, at the first sign of an attack. That works for many people to reduce or even abort an attack. Several people have found that putting their feet in a bathtub with water that's as hot as they can stand will make an attack more tolerable. Busting could well be the best thing for you, as it has been for so many, but unless you can get your hands on a busting substance right away and you've been off the sumatriptan for 5 days, you need something to get you by. That something is primarily OXYGEN.

You did it.