CHfather

'Queen', Welcome! In another post, you say >>Melatonin has been my saviour.<< Please let us know about any other ways you're treating your CH!

sontye, What spiny said, and . . . here's a link to the mask made for CH: http://www.clusterheadaches.com/ccp8/ You can also get a basic NON-REBREATHER mask for < $10 at the usual internet sites (amazon, ebay, etc.). You can buy an adapter so the tubing for a mask fits more easily onto the outlet from your welding regulator. I'm told they are sold in hardware stores: here's an example: https://www.amazon.com/Nipple-Nut-standard-D-I-S-S-concentrators-Each/dp/B000GHUNVS/ref=sr_1_1_a_it?ie=UTF8&qid=1519355238&sr=8-1&keywords=barbed+adapter+oxygen

sontye, You can find all sides to the question of how pure welding O2 is compared to medical O2, from it's purer to it's the same stuff to it's not as pure. I only know that maybe 15 - 20 percent of people with CH use welding O2, and of the people we know of directly, none has reported having an issue. My daughter (the person in my family with CH) has used it for almost ten years now.

An initial welding oxygen setup will cost you ~$250, depending on what size tank you get and what you are charged for it (prices vary a lot from place to place). You'll want to buy a mask (<$10 to about $30, depending on whether you get a standard non-breather mask or the mask that's made for CH) and a regulator (~$50), and you need a big adjustable wrench. You get the tank from any welding supply store (you can find the stores through google). We can walk you through more specifics (where to get a mask and regulator; what to say and not say when buying the tank). Let us know if you want more info. Prednisone for CH is usually prescribed as a taper, where you start with a fairly high dose (could be up to 60mg/day, but probably not that high in your case) and then take lower doses over the course of two or three weeks. That sounds to me like a lot of $ for verapamil + pred. O2 can add up.

sontye, I gotta ask a few questions. Did you stop taking verapamil because it wasn't helping, or because of side effects? (Because it often doesn't help much until you get to considerably higher levels than most doctors prescribe, but it can help a lot when the levels are right.) Are you willing to try the vitamin D3 regimen that has helped very large numbers of people with CH? Helps prevent cycles, prevent attacks, and make attacks less severe. https://clusterbusters.org/forums/topic/1308-d3-regimen/ If you're not willing to fight your insurance for O2 (federally funded insurance, such as Medicare and Medicaid won't fund it), are you able/willing to set up a system based on welding oxygen? Having O2 is such game-changer. Have you ever used injectable or nasal-spray sumatriptan? Have you looked at the materials on busting in the numbered files in the ClusterBuster Files section of this board? Not for everyone, but often makes a very big difference for shortening cycles? Here's some info about a bunch of things people do: Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. Some people take taurine pills along with caffeine pills. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks: https://www.campbells.com/v8/products/ There is a list here of the amount of caffeine in different beverages: https://www.caffeineinformer.com/the-caffeine-database “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Melatonin at bedtime. Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Not wise to take both melatonin and Benadryl at night (see Benadryl entry below). Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs. Help some people. Benadryl. Allergy-related conditions seem to flare up CH. Some people take Benadryl, 25 mg every 4 hours and 50 mg at night. As tolerated. Not at night if you are also using melatonin. Probably if you are trying Benadryl, you might skip the melatonin. Other anti-allergy medicines, such as Claritin, seem to help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water.

Hoping you'll find that O2 continues to work for you!

'nurse, have you looked into hemicrania continua (or other hemicranias)? https://en.wikipedia.org/wiki/Hemicrania_continua

Yes, some people use ginger beer.

For shadows, try ginger. If you can get some raw ginger, slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it. You can add honey, sugar, etc. Crystallized ginger and real (strong) ginger candy are also good (for shadows, anyway). Candy from Ginger People is strong. Make your own crystallized ginger candy: http://www.foodnetwork.com/recipes/alton-brown/candied-ginger-recipe-1944906 Someone once posted "Ginger and honey on toast. Yum!" Energy shots (5-Hour Energy, for example) are also sometimes good for shadows.

D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Another FB reply: "Side cutters usually work very well. You can snip away small pieces in/from any direction. Good luck!"

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.