CHfather

James, I asked at the Cluster Headaches FB group. Two replies so far. One was "I usually take a pair of pliers and chip away at the plastic around the window. Just don’t accidentally push down on the plunger or needle end." The other reply was a question -- "Who makes it?" If you let me know, I'll relay the info over there and let you know. (Of course, you can join that group yourself, but sometimes it takes a few days to be accepted, so I just figured I'd ask now.)

I'd say that usually the misdiagnosis goes the other way: CH is diagnosed as any of a number of other things (sinus problems, migraine of course, tension headaches, tooth problems). But a class of headaches called hemicranias is very similar to CH. You should look that up. The good thing about hemicranias is that they're preventable with an anti-inflammatory drug called indomethacin; the bad thing is that indomethacin can be very hard on the digestive system.

Naturally, you should have an MRI. Everyone with CH-like symptoms gets, or should get, an MRI. If you're not going to have an MRI, then you might as well treat it as CH and see what happens. I didn't want to say this in response to your first post for fear of scaring you, but for many people with CH, the first attacks and cycles can be more mild than what they experience later. So you need to learn about managing it. Sumatriptan tablets almost never help CH, because the attacks ramp up too fast for the tablets to take effect. If your attacks are predictable, you could try taking a tablet or two a couple of hours before you expect it, but you really want to try the nasal spray. 80 mg/day of verapamil is a very, very low dose, also not likely to have much effect. Maybe your doctor is proceeding cautiously, and will steadily increase that dose. It also takes a while for verapamil to get into your system, which is why some doctors give a steroid (prednisone) taper to reduce the pain while the verap has a chance to take effect. For your next attacks, try some of the things I listed, probably starting with the energy shot.

Bilal, how much verapamil; what form of sumatriptan (pill, inhaler, injector)? Oxygen is the best way to abort attacks. It is the #1 medically recommended abortive, but many doctors don't prescribe it. You need to push for that. An optimized system stops most attacks for most people in ~10 minutes, give or take a few. Many people believe that sumatriptan makes attacks worse and cluster periods longer. It sucks to have CH, but you are lucky to have had it diagnosed so quickly. The average time to a diagnosis is close to five years, and people undergo a lot of misery during those years. As a long-term preventive, you should seriously consider the vitamin D3 regimen, which is described in the ClusterBuster Files section of this board. There's quite a bit over in those files that you should become familiar with, include "busting," which is described in the numbered files, and also recognizing possible triggers, which you can read about in one of the files. You should probably also read "Bob's Big Guide" over there. This is a good discussion of pharmaceutical strategies: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf There are some promising clinical trials going on right now of things that might help. Here's a list of possible abortive/preventive strategies from another post: Energy shots (5-Hour Energy) at first sign of attack (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue) Stay hydrated -- lots and lots of water. You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help.

I don't know what's new in terms of causation. Nothing that has made a difference in pharmaceutical treatments. (Some promising clinical trials, including one at Yale of psilocybin.) New in terms of "citizen science" treatment -- the D3 regimen (see ClusterBuster Files section of this board) has been very positive; maybe it's new that you can split your trex injections from an autoinjector (also in CB Files section, on page 2 I think, title is "Extending Imitrex"); and Batch strongly believes that allergies affect CH, so he recommends Benadryl 3x/day at 25mg and nighttime at 50mg. Razor posted the other day about B1 being very helpful to him, but that's the first I've heard of that. When you say the mushroom tea made your cluster worse -- if that was for one or two days after a dose, it could have been "slapbacks," which typically are a sign that dosing is working. I don't know how well that was understood last time you were here. I have to say that in my 8 years of reading posts here, I've never seen anyone report that M dosing made attacks worse over the long run. Slapbacks car be very rough, but they tend to lead to ultimately good results (or no good results, but no worse ones). Not challenging what you're saying, just wondering.

mark', I take it you don't have oxygen. You should have it. Aborts without rebounds.

Chris', regarding your question #2, I know it was strongly recommended at least in the early days of ClusterBusters that people not use mushrooms when taking lithium. Here's a quote from the 2010 CB "bible" created by TommyD: "Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches." I've been here since right around that time, and I don't believe we've seen anyone report anything about taking M while on lithium.

Here are a few things you can try to deal with your attacks without oxygen and meds, and before the D3 regimen kicks in. Energy shots (5-Hour Energy) at first sign of attack can be very effective for stopping an attack or making it less severe (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue) Stay hydrated -- lots and lots of water. You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help. When you have an attack, inhale cold air from an air conditioning unit (or outside, if it's cold). Read the list of triggers in the ClusterBuster Files section--for example, a lot of young folks take in a lot of MSG, and it causes attacks for some people.

You are obviously a very self-aware and empathetic person. One of the things that interested me as I helped put together the "Living with CH" booklet was how many people with CH go to great lengths to hide it from others. There was a woman here a while back who hid it from her husband and kids for many, many years. Mostly because they don't want others to worry about them (or bother them) when there's nothing they can do, partly because they feel embarrassed by how they act during an attack (it is of course wrong to feel that way, but some people do), and partly out of some feeling of guilt, as you say. Actually, MattBE said that, but I can't figure now out how to delete or change it. This is perfectly put by MattBE, and I really want to urge you to be your own CH expert, and not rely on doctors. It's not all that complicated. There are a limited number of medical treatments, which you can read the basics about here: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf OXYGEN is by far the most important, and many/most doctors fail to prescribe it. You might have to advocate for yourself. (The best doctors are the ones at headache clinics -- even most neurologists are not very good with CH.) Beyond prescription medications, the D3 regimen that I suggested to you before can make a huge difference, but you have to get started on it. Please get back to us as you go through this process. There is a lot of good advice here. Are you having CH attacks now (are you in a cluster cycle)??

Dylan', I'm pretty sure that practically everyone with CH has the same issue. At the most basic level, no one who does not have CH can understand the pain. You could suggest they watch one or two of the many youtube videos of people having CH attacks, or refer them to Wikipedia, which says this about the pain: "The pain of CH attack is remarkably greater than in other headache conditions, including severe migraine. The pain is typically described as burning, stabbing, boring or squeezing, and may be located near or behind the eye.[13] As a result of the pain, those with cluster headaches may experience suicidal thoughts during an attack (giving the alternative name "suicide headache" or "suicidal headache").[14][15] It is reported as one of the most painful conditions.[16]" Like you say, what you really want is just some support without people judging or criticizing you. There are a couple of documents created by ClusterBusters, one shorter one called "20 Facts About Cluster Headaches" and one that's longer, called "Living with Cluster Headaches," which contains about 25 stories from people with CH. The crazy thing is that we can't attach or post documents here. If you PM me, I could maybe figure out how to send you a copy. (They're also posted in the Files section of the Facebook group called "Cluster Headaches," along with some other things that people have found helpful for explaining their situation to others. You have to wade through a lot of stuff to find them there.) What are you doing for your CH? Do you have oxygen? Are you doing the vitamin D3 regimen (see the ClusterBuster Files section of this board for more about that)? Taking any meds?

Yeah, that's truly nuts, for sure, as jon' says. Aside from the fact that you can take a tank with you, does he think you never get attacks at home??

(Answering for my daughter.) 1. Gives a damn is the baseline. Knows what s/he is doing, or is willing to find out. 2. Nothing to offer that I hadn't already tried. Didn't want/need any prescriptions.

Very glad this has worked for you. Lithium is usually prescribed as a last resort because of the side effects and because quitting it tends to cause severe rebound headaches. Usually, doctors will first try a preventive such as verapamil, and perhaps a supplemental abortive to oxygen in some form of triptan. If you're fine with the lithium and your oxygen is maximized, you don't need this info, but the vitamin D3 regimen is a very effective preventive without lithium side effects. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Here's info about the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 A very large percentage of folks with CH use this as a preventive -- generally good for you, no significant side effects except in a handful of cases (where those side effects might or might not actually be related to the regimen). Don't be easily deterred about oxygen. It aborts attacks as fast or faster than your nasal triptan -- and no side effects. Find out, and fight if necessary. You can also set up your own O2 system using welding oxygen, which many people with CH do. One question will be whether your attacks return after (or as) you wind down the pred. As your doctor said, usually it's a bridge to give the verapamil time to take hold. Sometimes it ends the cycle, but not always. It seems a little odd to me to stay on the verap for six months, but you say he's knowledgeable. (There are people whose verap dosage during a cycle goes up to 960 mg/day or more.) Many people think that the non-extended release verap works better.

I agree. It should be easy enough to track abuse, without penalizing use by those who need them.

Sorry, Tom! Click here for an answer to your specific question, and also some suggestions you might consider if this continues: https://clusterbusters.org/forums/topic/5377-cluster-and-old-age/

SORRY! Some thoughts: Energy shots (5-Hour Energy) at first sign of attack (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue) Stay hydrated -- lots and lots of water. You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help. Wish I could think of more. When O2 in tanks gets low, it seems to lose its effectiveness. Hopefully this problem might be solved (if it is a problem) with your new tank. At some point, you might be better off inhaling cold air from an air conditioner (or vigorously exercising outside if it's cold where you are). You want to start the D3 regimen as soon as possible, but it isn't going to help you in the next couple of days. (See the ClusterBuster Files section for info.) Triptan tablets are next to useless, but of course the other stuff is ridiculously expensive. You can get three injections from one autoinjector, though, so that makes it a little more tolerable (info about how to do that is also in the ClusterBuster Files section, in the post "Extending Imitrex," which is on the second or third page. Check the list of triggers (also in the CB Files section) to be sure that not doing anything that makes it worse (MSG, chocolate, aged cheeses, etc.)

Elliott, one place where people have been quite confrontational with you is here, where you posted about parasites almost a year ago. I appreciate your coming back with an update, and I don't doubt that your only motivation is to share what you have experienced. To avoid a repeat of what became considerable "confrontation" the last time you posted, I'll just link to that thread, with virtually the same title as this one: https://clusterbusters.org/forums/topic/4894-i-think-i-may-have-found-the-cure/#comment-51265

Are you taking something with the indomethacin to protect your insides (Nexium or something along those lines)? That's standard practice -- but it doesn't always solve the problem.

You should be taking the calcium part of the D3 regimen 8 hours apart from the verapamil (verap is a calcium channel blocker). Batch recommends 25mg of Benadryl every 4 hours, and 50 mg at night. He has concluded that pollen/allergies often make CH worse. Split your trex injections. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Consider upping your verapamil (960mg/day is sometimes needed). You don't have oxygen???

I agree there seems to be a typo, but I gotta admit, I don't see the point of the exercise. I've never seen a person report here on their score in the 8 years I've been here, and I'm sure a doctor would not be interested in or familiar with this tracking method. I mean, pretty much a person has CH or doesn't, and treatment is not going to vary depending on a score like this. I guess you could use it to give yourself a better picture of when your attacks or worse or not as bad, and maybe you could correlate that with something you're doing or taking or not doing or not taking. This seems like a decent way to maybe summarize that info, but I'm going to suspect that for some people a long attack at a lower pain level is worse than a shorter attack at a higher pain level. A guy developed an app for tracking CH pain/duration etc. that he posted about here. I think he has posted more recently than this one, but maybe you'll have to PM him to find out more.

Thank you for this, Charles. You don't say when your reckless youth of recreational drug use took place, but I guess you know the founding story of this site, the guy who realized that he hadn't had CH attacks while he was regularly using something -- psilo or acid, I don't recall -- and figured out that whatever he was taking was an effective treatment for CH. My only suggestion is that you stay on the D3 regimen continually instead of restarting it in November, because you want to get your D level up to a stable high level, which is easier to do over time. You can get your D level checked (standard blood panel) to make sure it doesn't get higher than you want it to be, but it's highly unlikely that with 10,000IU/day that is going to happen.

Sorry, sorry, sorry. If there's anything that could be called good news, I guess it's maybe that important things been learned in the last years about treating CH. Most notably, the D3 regimen, which you can read about here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708. Advances in use of oxygen: high-flow regulators, the mask made specifically for people with CH, and some alternative breathing strategies. If you're not familiar with busting (I know this site didn't exist 12 years ago), that might be something you want to consider (see the numbered files in the ClusterBuster Files section of the board). Not much new in the pharma world, really, except recognition that higher doses of verapamil and prednisone work better than the doses that typically used to be prescribed. Splitting Imitrex injections might be a relatively new thing; I don't know. Energy drinks to abort? Ice water to abort by creating "brain freeze"? Melatonin at night? Trying to think of whatever I can. It still sucks, for sure.

I think we've said that this concerning. I have no explanation. Does the O2 help?

Barcode, I can't answer any of your questions. I can suggest that we sometimes see that when a treatment is effective, attacks start occurring at different times. We can hope that's what's happening here. I can tell you that you want a prescription for oxygen, which is the best abortive with the least side effects (none). You really want to be prepared to insist on that with the neuro, because even most neuros don't have the sense to prescribe it, even though it's right there in all their books and online resources as the #1 abortive. Take a look at this document. https://clusterbusters.org/oxygen-information/ It's now kind of outdated in some ways, but the references are things you might want to bring with you (particularly the JAMA report). I can suggest that you try a 5-Hour Energy as soon as you get an attack. It will often at least lessen the severity, and sometimes abort it. For shadows, ginger works well for many people. Strong, real ginger, as a tea or a string candy. Many people say strong enough that it stings when you drink it/eat it. Verapamil dosage can need to go pretty high, as much as 960 mg/day or more, before it's effective. Most docs won't prescribe this high of a dose, because they don't know it's needed. It has to be monitored. You should read about "busting" in the numbered files in the ClusterBuster Files section.