CHfather

Have you considered the "ClusterO2 Kit," formerly known as the O2ptimask? A lot of people say that this mask makes a considerable difference. http://www.clusterheadaches.com/ccp8/ Also, just wondering (looking for anything that might help) -- Have you have your vitamin D level checked? I think Batch has found that even many people doing 10,000 IU/day still aren't getting their levels up to where they need to be. He did publish an updated version of the regimen within the last year (since you started it) -- maybe worth taking a look? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

In addition to the great advice you have already received from fabulous folks, I urge you to check out the ClusterBusters Oxygen Page, under the black and white MENU tab on the left side of the page. Lots and lots of people have found the effectiveness of oxygen fading over time, and have brought it back to full (or even better) effectiveness with some or all of the strategies mentioned there: higher-flow regulator, better mask, and different breathing strategies. (Look at the "Addendum," starting on page 22.) The energy drink that THMH mentioned will also probably help (you can use an energy shot, too, such as 5-Hour Energy or 6-Hour Power, and for some people even a strong cup of coffee helps). Have you tried the vitamin D3 regimen? Worth a shot, I believe. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Victor, I think you will find that most US universities (which is where I am imagining you will be studying for a degree) will offer insurance to students. I know that in some places international students are required to buy the insurance that the school itself provides. So, you might not have a choice about whether to get a plan that covers oxygen or not--you might just have to take what they give you. But you should ask whoever you are in contact with at the university -- the director of admissions, I would think -- how you can find out details about medical plans. No, a doctor will have to prescribe it. I don't remember what our oxygen tanks cost. But some people have commented on this subject in the past, so maybe they'll see this. I remember that it didn't seem like too much, considering that it is, unfortunately, likely to be a long-term purchase. Once you have bought the tank or tanks, you pay something each time you refill them. You would also have to buy a regulator (about $40) and a mask (between $5 and $30, depending on quality). You can also rent tanks, but since you say you might be here for a long time, buying might be more economical.

This is good advice from all. If you do get seeds, I'd suggest you start with rivea corymbosa, which you can get from www.azarius.net and also from http://allsalvia.co.uk/salvia-shop/entheogens/rivea-corymbosa-virgin-seeds. I also do not know whether they can be imported into France. If you decide to order some, please check with us first. I sounds like you have a good doctor. The three prescriptions you received in 2005 were the right basic things -- isoptin (verapamil in the US), oxygen, and imitrex. If your oxygen is not working as well as it once did, you can get better results from your system. Read the ClusterBusters Oxygen Page under the black-and-white MENU tab on the left side of the page, and of course let us know if there are things you don't understand. As J has said, getting into lithium and steroids is a territory where you are beginning to risk more serious long-term effects, and you need careful monitoring. You should probably start the vitamin D3 strategy that has helped a lot of people. Read about it here, and ask any questions that you have: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804. Have you tried drinking an energy shot (in the US, this would be something like 5-Hour Energy) or energy drink (RedBull or Monster brands in the US) at the first sign of an attack? This helps many people. Even a strong cup of coffee can sometimes make a difference. If you are going to try seeds or mushrooms or LSD, you will have to stop taking the imiject, the steroids, and the lithium. That is why it is very important that your oxygen works efficiently and you also have other things, like energy drinks to help abort attacks and the D3 method to at least reduce how often you get attacks, and how severe they are.

Energy drinks, O2, and ginger tea can help with the shadows. Here's the D3 link: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 There's a listing doctors in Canada who have been recommended by people with CH here: https://clusterbusters.org/cluster-resources/. It's getting old now, but still you might be able to find a better doc (at least for the oxygen) when you get to your new location.

Echo, I'm glad that things are better for you! I so much hope that they stay that way! Do try the D3 (and don't forget indomethacin as a possibility). I can't comment much on your relationship with your doctor. There are some things that seem pretty awful (such as missing the bad interaction between verapamil and lithium, and taking so long to renew your prescriptions); there are some that seem bad (like talking so much about MS); and there are some things that I don't think most people, in the US at least, would expect from their doctor (regular responses to emails, phone consults, etc.). I was surprised when I did a little looking into this that there is no such thing as financial compensation for malpractice in the Netherlands, even when a doctor's error has caused death or severe injury. The only reason for reporting a bad doctor is either to have that doctor "punished" or "corrected" in some way, or maybe to improve the overall medical system. Here is a pretty recent study about the results of complaints about doctors in the Netherlands. It doesn't suggest that the things you would describe would result in any significant action against your doctor. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3252193/ Here is some information about how to file a complaint, from a guide for expats http://www.access-nl.org/media/13949/health_care_guide_completed.pdf >>Medical complaints systems exist for all branches of the profession, including hospitals and general practitioners. The Dutch, in general, have traditionally not made as much use of formal complaints systems as in some other countries. Some expats may feel that the Dutch medical profession is still rather closed regarding both individual and general criticism, compared with their own experience, so persistence may be required. Financial compensation for medical mistakes is not a feature of Dutch culture. Each hospital and doctor will be able to inform you of the relevant procedure. www.zorgbelang-zuid-holland.nl/index.php?p=48 (only in Dutch), or telephone 0900 243 70 70 (€0.10 per minute)<<

Amazing, isn't it, that oxygen? It's so enraging that it's taken 23 years for you to get it. While you're out of O2, you might try an energy shot or energy drink at the first sign of an attack. That can abort an attack, or significantly reduce it. Also, many people chug one before they get on the O2. Try staying on the O2 for a few minutes (5-10) after you've aborted an attack. That often seems to prevent some future attacks. You'll need a bigger O2 tank, too. Multiple tanks. Some big M tanks for home and some smaller E tanks for work/car. Sounds like you got an E. More advice about O2 can be found in the ClusterBusters Oxygen Page, at the black and white MENU tab on the left side of the page. Here's the basic info about busting: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Other numbered files in the ClusterBuster Files section of this board will tell you more.  We can tell you how to get seeds -- getting other stuff, if you want it, would be pretty much up to you. You would have to stop the Frova (I'm kind of surprised that a triptan pill helps you; most people aren't helped by them, only by injections) and probably the Topamax, too, since they interfere with busting. (If you're getting 5-6 attacks a day, I guess we have to wonder how much those drugs actually do help you.) Just scratching the surface here -- ask any further questions you have!

brett, I don't think you can expect much from one mild dose (as I understand it, you'll be doing your second dose tomorrow). Generally, the positive signs that it's working are what you might expect -- lessened frequency and severity of attacks. Usually that requires two or three doses, sometimes more. Paradoxically, sometimes the best indicator that something good is going on is that things get worse, or at least different, for a few days. These are called "slapbacks" -- attacks that occur at different times from your normal ones and/or are more severe than your normal ones. Not everyone gets slapbacks, sometimes they just get that nice fading away and ending of the cycle, but when slapbacks do occur, it's considered a definite sign that things are changing in a way that will turn out to be good, even though at the moment it isn't. Hopefully, you'll soon start getting the good results without the slapbacks.

That's right . . . you told us that . . . I'm sorry I forgot. Still, given that you have concerns about taking the RC, I think I would recommend not having that drink, so you know clearly what the effects of the RC are (if there are any).

I think maybe one or two people have said they had some trouble sleeping. I was just talking to a person who was saying how much she loves taking her seeds because she gets such a good sleep that night -- I think this is a much more common reaction, and I hope it will be true for you. It would be very surprising if you got stomach upset or nausea, particularly with 35 seeds. I think maybe Moxie said that she got some (??). It almost certainly won't be much. (I wish we could avoid all the "almost"-type qualifiers, but mileage does vary with these things.) So you shouldn't expect it, but it could happen, possibly. A drink???? An alcoholic drink???? Even if it's not a trigger for you, I don't think we'd recommend that. Best wishes for smooth sailing.

overit, Tell us specifics of what you're planning to do (how many, how prepared, etc.) Or, if you follow Moxie Girl's excellent guidance here -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289 -- you'll do fine. I would only say these small things regarding her excellent post: (1) Anything less than 30 seeds is a very cautious first dose. You might want to be cautious, but I wouldn't go below 25, and I would recommend more like 35, which still feels "cautious" to me, based on results posted here over many years. (2) Some people think that fluoridated tap water, which is common in the US, can block the effectiveness of the extraction. So you might want to use non-fizzy bottled water.  (3) The squeeze of lemon is a good idea for masking the taste, but not important for extraction. If you hate the taste, chase it down with some cranberry juice or other juice. Of all possible immediate effects from a reasonable dose, drowsiness is at the top of the list, way, way ahead of anything else.

Great news! The E tank is too small -- only good for a handful of aborts -- but, hey, maybe that won't be an issue for a good long while. Most people just want to forget about CH once a cycle is over, but you'd be quite wise, I think to start the D3 regimen and consider preventive busting.

Tony Only mentions Acetium in another thread, which I didn't want to potentially hijack with this message. A clinical trial of Acetium for CH is apparently underway, as Tony said there. http://globenewswire.com/news-release/2014/04/29/631156/0/en/Biohit-Oyj-starts-two-clinical-trials-with-Acetium-capsule-for-prevention-of-migraine-type-headache.html Biohit Oyj Stock Exchange Release April 29, 2014 at 4:30 pm local time (EEST) Biohit Oyj initiates two clinical trials for prevention of migraine-type headache attacks, testing the efficacy of Acetium® capsule in novel clinical indications. The purpose of the trial is to assess the effect of Acetium® capsule in prevention of headache attacks  among patients suffering from migraine or cluster/Horton headache. Both studies will be conducted as multi-center clinical trials in collaboration with Terveystalo Oy and Aava Medical Center altogether in six cities in Finland. The study hypothesis is based on the fact that acetaldehyde liberates histamine from the mast cells which are ubiquitous in all human tissues. Histamine in turn is a well-known trigger of the acute attacks of vascular-type headaches (migraine, cluster). By preventing the local effects of acetaldehyde with Acetium® capsules, it might be possible to prevent the headache attacks in these two categories of patients. Both studies will be conducted as placebo-controlled, double-blind clinical trials, where half of the subjects will receive the active compound and the other half will receive a placebo.   Acetium® capsule in prevention of headache attacks among patients with cluster headache:   altogether, 100 subjects with clinically diagnosed cluster headache will be enrolled in the study.<< There's also a "discussion" of Acetium over at CH.com, characterized in part by the fierce skepticism that seems to greet any new idea there. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1381768499/23 It seems that Acetium can be purchased throughout Europe, but not in the US. Maybe I'm reading that wrong.

Hopefully not, agreed. But we've seen so many people put off busting and then regret that they didn't hit it early. My suggestion -- Take a good-sized bunch of the ones you have now, while you're waiting for the fresh ones you order today to arrive. Worst that can happen is that the old ones have no effect; best is that you get a head start, just in case. Or, if they weren't shadows, maybe you get in a good preventive bust.

Most important, how was today for you?  A lot of people use a tube for breathing, by choice; it can be okay. Here's a video of a guy using a tube: . Start at about 5:30 on the video. (He's using a fancier tube, but you might get some ideas from him, and, as I say, the basic tube can be okay.) I'm trying to figure out how to know what size your tank is. Maybe you can get a sense from this photo. What you would typically want is the big one on the left (an M tank). It's about 3 feet high and about 8 inches across. The one that's third from the left is often what people get. It's an E tank, and it's about 2 feet high and maybe 4 inches across. (Actually, in the long run, you'd want to have at least one of each -- the M tank for home and E for car/work/travel.) But, like I've said, here's hoping that this cycle is winding down and your next one will be . . . never.

I don't know (have I mentioned that I'm not a doctor?). Propranolol is a beta blocker; verapamil is a calcium channel blocker. So I guess it's a matter of what "family" we're talking about. In the Merck Manual for Physicians, it says about propranolol (in the section about CH), "used only for migraine." http://www.merckmanuals.com/professional/neurologic_disorders/headache/cluster_headache.html I'm not trusting this doctor of yours at all now. But maybe that'll all be irrelevant . . . maybe your cycle is ending . . . Then you should get some busting advice for prevention and future treatment, as well as getting started on a serious D3 regimen. The energy drinks help some people with shadows, and some people find that ginger tea helps. When you say you got your O2, I'm assuming you got a prescription, not the actual tanks, regulator, and mask yet(?). Let us know when you have the physical stuff, so we can make sure it's right. (I suppose if your cycle is ending and your typical pattern has been every few years, maybe you don't want to get the O2 right now if you have to pay anything for it.)

This is Batch's advice (from the file Tony linked to) about D3 and verapamil: >>In order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 to 12 hours. Discus this regimen with your PCP, neurologist, or cardiologist in order to work out an optimum dosing schedule.<< As Tony said, "Batch," the person who developed and refined the D3 protocol, is extremely generous with his time. Not only would you not be bothering him if you contacted him with any questions you have, he will actually appreciate your contact. He is very committed to helping everyone with CH.

You're getting above my pay grade here. It's almost 100% certain that the sumatriptan will not help you if you take it when an attack is underway--just takes too long to get into your system. But whether the propanolol and amitriptilyne are part of the difference you're experiencing, I really can't say. The questions are obvious -- should you drop some meds and risk the good results you're getting in order to maybe not be taking so many meds (especially when the meds are not front-line CH meds), or just stick with what you're doing, since it's helping? It's easy for me to say that I'd bet the RedBull alone would give you the same results . . . but I can't swear to that -- and energy shots, like practically everything else, sooner or later lose their effectiveness, so if the other things are helping, you'd want to keep using them, and I think they're the kinds of meds you have to build up in your system before they're fully effective. I suppose you could just try the RedBull and nothing else as an abortive (no indo, no suma), and the "only" cost might be a longer and more severe attack. Sorry, this is the best I can do . . . just thoughts. Get oxygen and verapamil (and I suppose Imitrex as a backup) and these questions all go away (for me, at least).

Echo, I'm so sorry to read this. Is indomethacin one of the drugs you have tried? I ask because while it doesn't work with CH, it does work with two conditions that are very much like CH, and which include the symptoms you have described. We have seen people here who were misdiagnosed as having CH when they actually had one of these other conditions, which are very rare. Also, these conditions are not helped by oxygen, while CH usually is (and they're also not helped by shrooms, so you might as well rule them out as part of the process of deciding about trying shrooms). One is chronic paroxysmal hemicrania. You can read more about that here: http://en.wikipedia.org/wiki/Chronic_paroxysmal_hemicrania. The other (which seems less likely to me) is hemicrania continua, which you can read about here: http://en.wikipedia.org/wiki/Hemicrania_continua. I ask about the indomethacin because it's a kind of diagnostic test of whether you might have those conditions, so you could just try it and see whether it helps. Others will answer you about the shrooms. I have opinions, but I'm not an expert. With much hope that things improve for you.

Not exactly sure what you're asking, but it sounds like these attacks are shorter than the ones you've been having lately (you don't say anything about their severity). Are you just taking the indo and the RedBull, or are you also doing some or all of the others? So I suppose, why mess with success? You gotta be somewhat careful with the indo plus the caffeine -- indo itself is pretty hard on the insides (docs often prescribe it along with something that will protect the stomach) -- so if you feel pain, be careful. (This, again, is my non-doctor advice, of course.) If you had oxygen, you'd probably be aborting those attacks in 10-15 minutes max, and I'd be very confident telling you to drop the indo. My advice about that is to call your doc tomorrow and insist.

CPH: chronic paroxysmal hemicrania HC: hemicrania continua. I thought you said you were going to have a CT scan. I was just saying that I thought MRI was more common. It's good to rule things out -- every once in a very great while, the scan finds something that is more manageable than CH, or requires different management than CH. There's a search engine at the top left of the page that will allow you to search things (such as propranolol and amitriptyline) and see what others have said about them. I don't think either of them have shown much success for CH. It's hard for me to tell you not to take the meds you've been given, since that's what you have. I think both of those things have shown more success for migraines than for CH. It seems like you've generally been given a bunch of migraine meds (I think indomethacin works okay for migraines at high dosages). Sometimes with people who are just starting to treat their CH with meds, things work that don't work later, or for very long.

If you have CH, indomethacin will not help (in fact, whether indomethacin helps or not is an indicator of whether a person has CH or another type of headache condition, CPH or HC, that can seem like CH; it helps for those conditions but not for CH -- and from your symptoms, you definitely don't seem to have CPH or HC). So there's not much point taking the indo, or mixing it with the energy shots. An extra-strength 5-hour energy shot has about twice as much caffeine as a cup of coffee (that's a true "cup" of coffee -- 8 oz), so that might be the source of the tingliness. There's no reason that taking an energy shot should lead to a bigger attack later. It's undoubtedly a good idea to cut back on any heavy drinking. Usually what's referred to here as a "trigger" is something that brings on an attack immediately. There are many triggers, different ones for different people, but alcohol is the most common one. I might be wrong, but I think a CT scan is rare related to CH: I think MRI is more common. Also, CH indicators can't be seen on any brain scan; the scan is used to be sure that something else isn't causing the headaches/attacks.

You can't call your doc's office and ask about O2 and maybe injectable imitrex? Many people find that a nurse or even an office assistant can be more helpful (more responsive) than the doctor (though of course they can't prescribe for you). You could fax or attach to an email the major O2 study: http://jama.jamanetwork.com/article.aspx?articleid=185035 Some people say that breathing in cold air from an air conditioner helps with their attacks (this isn't an "oxygen" treatment--it's really the effects of the cold air). Try the energy drinks/shots; I think they're your best bet among what you have for some potential relief. As the CB O2 file says, you can set up your own O2 system using welding in oxygen, in just a couple of days (however long it takes to get a non-rebreather mask). Vigorous exercise at the first sign of an attack helps some people -- really vigorous: running or vigorous calisthenics. Some people find that the licorice root method works well, quickly. Be sure to check the contraindications. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Same is true for the "vitamin D3" regimen: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 And I agree with what THMH says about seeing a headache-specialist neurologist, both for general CH purposes and also because some aspects of your pattern do seem generally un-CHlike (while other aspects, such as the previous clocklike timing, and the amount of pain you're experiencing, do sound like CH).

newfie, Like most doctors, yours seems to have no idea what he's doing when it comes to CH. I am not a doctor, so I'm just speaking from observation and general knowledge here. Others will correct me where I am wrong. The most effective prescription abortives are oxygen (see the Oxygen Page under the black-and-white MENU tab on the left side of this page for more information) and injected sumatriptan (imitrex). Sumatriptan pills take too long to work. Oxygen is by far the best because it has no side effects (you can set up an oxygen system without a prescription, as you'll read in that file I referred you to). Indomethacin might help, but probably won't -- and it's really hard on your stomach. Almost everyone with CH has at one time or another used caffeine to abort, or try to abort, a cluster attack. For many people, energy drinks work best. If you have CH, there's no reason for you to stop caffeine because of it, and stopping won't help end your cycle. Propranolol is mostly effective for migraines. The blood-pressure drug that works best to help prevent CH attacks is verapamil. The amitriptyline (Elavil) helps some people, but it's not a first-line treatment. So you're taking a whole mess of pharma stuff that might help, while not taking the pharma stuff that's most likely to help. Then there's busting, which is ingesting hallucinogenic substances (in some cases, at non-hallucinogenic levels) to stop CH cycles and possibly prevent future ones. Many people here would tell you that if psychedelics were legal, they would be the first thing medicine would prescribe -- highly effective, no substantive or long-term side effects. Read about busting starting here -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then in other numbered files in the "ClusterBuster Files" section of this board. Particularly, read the file about Warnings, and the file about "Playing Well with Others." No one has any idea why CH does what it does. Virtually everyone here has a story that is in some way similar to yours, about cycles morphing. Many people will tell you that the pharma drugs seemed to make cycles worse for them. But let's hope that this cycle is still relatively short, and is running its course now. If it was me, I would try an energy drink or energy shot at the first sign of an attack -- something high in caffeine and high in taurine -- or at least a very strong cup of coffee. I would see whether you can get an oxygen prescription quickly. I don't know what I would take of what your doctor has prescribed; I guess you can see what works for you. I might try to get him to give you injectable Imitrex and verapamil. (Prednisone often helps, taken on a tapered basis.) I guess some people here would tell you that you should try busting right now, because you don't know how long your cycle will last. But time goes by for most people as they obtain busting supplies and, again, I'm hoping that your cycle will end soon. You have to be off of some meds, including sumatriptan, for about five days before you can bust. Healthy nonsmoking vegetarians get CH, and unhealthy meat-eating heavy smokers get CH. Non-drinkers get CH and alcoholics get CH. Your lifestyle probably has very little to do with your having CH or with the nature of your cycles. There are other long-term, non-pharmaceutical, preventive strategies you can try, such as the vitamin D3 protocol and preventive busting). Will tell you more about that in a subsequent message.

Worth trying that mamajuana beverage, which worked with a couple of near-chronic folks (and not with others)? I might be wrong about how ketamine is now being administered. I do remember that it worked as a cycle-ender in some subjects when used as an IV "infusion." >>IV ketamine abolished the ongoing cluster headache episodes in all 4 cases treated.<< "IV Ketamine in the Clinic To Treat Cluster Headache." Maybe no one's doing that anymore (or never did, beyond that experiment).