CHfather

emily', Without saying that coping with CH at work is simple, because it's far from that, we should know what you're now using to abort attacks. Do you have oxygen? Injectable sumatriptan (Imitrex)? Have you tried energy shots/energy drinks? In the long run, of course, preventing cycles or making them less severe is also critical for being able to work. Can you tell us what preventives you're using?

Dan, sorry you got hit again -- glad you were able to stop it quickly. Schedule changes seem to rough on CH. This is pure speculation on my part, but you might consider upping your melatonin a little to help adjust to the schedule change. Here are three resources regarding O2: This is the double-blind, placebo-controlled trail that was published in the Journal of the American Medical Association: http://jama.ama-assn.org/content/302/22/2451.full To get the American Headache Society's guidelines for treating CH, type this (without the brackets) into Google: goadsby "treatment of cluster headache" This is an large-scale anecdotal reporting about the use of oxygen for CH: http://www.clusterheadaches.com/O2/Oxygen-survey-final.pdf Not sure what you might do with these: At the least, copy 1 and 2 and bring them with you; or, send them in advance. If your doctor has a nurse or nurse practitioner, we have found that they can be good advocates. Even with this completely persuasive information, many doctors will still resist prescribing O2. If you can tell him how to write the prescription, it might help. It should read something like this: "Oxygen therapy for cluster headache. Up to 25 min of 15L/min with non-rebreather mask." (In both cases there, the "min" is for "minutes.") He can fax it to an oxygen provider, or give it to you to shop for an O2 provider. If he won't write it for 15 lpm, but only for something less, just take that -- you can get your own regulator once you have the tanks. The discussion of how many tanks and what sizes is between you and the oxygen provider. Hopefully, you'll get that far and you can get back to us about specifics. Yes, you're right about staying on the D3. If you're in a high-pollen season right now, you could try adding a dose (standard dose) of benadryl twice a day. That seems to help. If your D3 level is not quite low, I will be very, very surprised. Keep up the fight.

A great message, Dan. Sounds to me like you are doing all the right things. And, yes, John Fletcher is a great, generous, extremely knowledgable guy -- as well as being a fabulous advocate for CH awareness. I doubt that he'll see your thanks here, unless he's been lurking, but I'm sure you have communicated that to him directly. When you say this >>I have yet to get O2 from my ridiculous family Dr...but am seeing him in 2 weeks for a prescription,<< it sounds like you're confident that he'll give you that prescription. If you're not confident, maybe you'd want to bring some O2-related materials with you, and even show him what a prescription should look like. He's probably never written one for O2. Let us know if we can help you with anything to make his decision easier, if you feel like you need it. There have been a couple of people here who have found that putting their feet in very hot water will knock back an attack. That seems more tolerable to me than the ice-cold shower, so maybe something you might try if you need it in the future. Just for my anecdotal record-keeping, do the 5-Hour Energies keep you awake when you take them in the night? I have come over the years to believe there just might be such a thing as a jinx related to discussing PF status, so I'll just wish you the best, thank you very much for posting this positive story and good information, and leave the rest unsaid.

I've never quite understood the idea that a demand valve will conserve O2 . . . but I'm not saying that I'm not missing something. In my mind, it's not like your high-flow, big-bag system is spewing O2 all over the place -- you're sucking it all down, and it's either in your lungs or waiting for you in the bag. So I feel like if you need that high flow and big bag to breathe the most effective way for you, you're going to be hitting the button on the demand valve pretty often and sucking down as much O2 as you now do. Someone who knows more than I do -- RACER, maybe, but probably someone else -- said that same thing, and it makes sense to me. However . . . on that youtube video I sometimes post about assembling and using the O2ptimask, the guy (Michael Arnold) says that even at 25 lpm, O2 is definitely leaking out of the back of the tube thingy (at about 5:40 here: ). It's probably worse with your earlier version of the mask, and I don't know whether the new version, the "ClusterO2 Kit," has better engineering to reduce that. Can't beat the demand valve for simplicity, for sure. No regulator fiddling, no bag concerns, just O2 when you want it, which is at least a small plus during an attack.

I'm glad you're getting your M tank today, Jeebs. Good Lord, why does it have to be such a nightmare! Are you keeping those E tanks they're bringing you? Problem with the demand valve system is that you can, in general, only get it by prescription. Sometimes they appear on eBay. There's nothing there now that is obviously a demand valve system -- there is this, http://www.ebay.com/itm/LSP-Resuscitator-EMT-Demand-Valve-Rhino-Regulator-Aspirator-Mask-O2-Hoses-New-/391356603889?hash=item5b1eabddf1:g:WtcAAOSwvgdW5tpt, but I can't tell exactly what it is. If you're interested, you might post the question over at FB, since I see that 8 of them have been sold and I wouldn't be surprised if at least one of the was to someone there. I would think that with your Flotec and your redneck bag, you ought to be getting plenty . . . but maybe not??? (I remember at a conference our friend Tingeling (a tiny little gal) demonstrated that she could suck down 65lpm in no time and have to wait for a normal reservoir bag to fill, so I know some people have that kind of lung capacity.) I snagged a demand valve for my daughter a while back, and she loves it mostly for the mask, which is very soft and comfortable. But if you're getting enough flow from your current system, a demand valve really isn't necessary. Anyway, I hope all of this is moot soon and your San Pedro busting works.

sierra, are you splitting trex injections (if you're still using it)? 2 mg (out of the 6mg in the autoinjector) is enough for most people. most people have the newer type of injector that's covered in the video at the bottom of this post: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ this type is a pain to get open at first, but once you learn how to do it, it's not so bad. highly recommended.

sierra's post is really helpful, I would only disagree slightly to say that some people get good results from the Zomig spray, and it might be a sensible place to start if only because the injections are so expensive and you can get so few injectors at a time. you can split the injectors so that you can get more than two injections a day . . . but really, if you have an effective oxygen system you will almost certainly not be needing so many injections

Jennifer, you really need high-flow oxygen (at least 15 lpm, often more) and a high-quality non-rebreather mask. It is very, very often prescribed wrong. If you have CH, a system like this is almost guaranteed to help you. Read more about O2 here: https://clusterbusters.org/oxygen-information/ The mask that makes a big difference is now called the Cluster O2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=cms&ns=display&ref=splash Hyperbaric oxygen can help abort an attack, but it hasn't shown any effectiveness as a preventive. An optimized "regular" O2 system is what you want. There nothing really "out of the box" about that lidocaine treatment. Lots of people try it. It's called an occipital nerver block, or ONB. I don't think it helps more than 10% of CH patients, from what I've seen. The medical standard for pharmaceutical treatment of CH is verapamil as a preventive, and oxygen and sumatriptan (Imitrex) as abortives. Sumatriptan injections are the most effective form -- it also comes as a nasal spray (often effective) and pills (rarely if ever effective). Taking imitrex pills at night is not going to help much, if at all. Zomig is the nasal spray version of the triptan. Like I said, it's much, much better than the useless pills -- highly effective for many people. Topamax can be effective as a preventive, but as you've seen, the side effects are yucky. I don't know what your verapamil dose was. Many people need a pretty high dose to be effective. There are side effects there also, which need to be monitored. You should start the vitamin D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It just might be the most effective preventive there is, not to mention that it generally has no side effects (and is actually good for you, in almost all cases). You mention "steroid shots." Usually steroids (such as prednisone) are given in pill form, as a "taper." They can buy you some pain-free time, but are rarely lastingly effective. How much melatonin are you taking at night? There are people here who go up close to 30mg before it helps them get relief. Have you tried energy shots, such as 5-Hour Energy, at the first sign of an attack? They can abort an attack, or at least significantly reduce the severity of the attack (even in the middle of the night -- they don't keep most people up). Most people who are regulars here use the "busting" method -- taking small amounts of psychedelic substances in a systematic way. Often the amount can be small enough that there are no, or very few, "trip" effects. You can read about that in the numbered files in the ClusterBuster Files section.

Daniel, Sorry I can't answer your question about the missed topiramate dose. Here's a list of recommended doctors. https://clusterbusters.org/cluster-resources/ Are you doing the D3 regimen? https://clusterbusters.org/forums/topic/1308-d3-regimen/ Have you tried an energy shot to abort? What are you going to do to get O2? If you can't get it from a doctor, will you try welding O2?

It's late here, so just a few questions/suggestions for now. Does he have oxygen? That's the #1 thing he should have. Look through the document here for an overview: https://clusterbusters.org/oxygen-information/ If he doesn't have oxygen, he's not treating his CH. What kind of sumatriptan was he using: injection, nasal spray, or pill? Big big difference in effectiveness. He should very seriously consider starting the vitamin D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Has he tried an energy shot (such as 5-Hour Energy) at the first sign of an attack? It can abort an attack or reduce the severity. Many people here have experienced great success with "busting" -- using psychedelic substances, often at non-hallucinogenic levels, to end cycles. The numbered files in the ClusterBuster Files section of the board will give you more information about the basics of busting.

I've been working some on this language recently, for a brochure. I can't be 100% definitive, but this is what I have been told so far about how the prescription should read: "Oxygen therapy for cluster headache. Up to 25 min of 15L/min with non-rebreather mask." In both cases there, the "min" is minutes. What we have heard so far is that requesting a higher-flow regulator is going to get resistance from insurance companies and/or providers. Size and number of tanks is between you and the provider. There's a recent study showing that demand valve and "O2ptimask" (now called the "Cluster O2 Kit") are more effective than a standard non-rebreather mask, but not so dramatically that it's likely to change the protocol. If you want to show it to your doc to give it a try, it';s here: http://www.docguide.com/oxygen-therapy-cluster-headache-mask-comparison-trial-single-blinded-placebo-controlled-crossover-st?tsid=5

Welcome, Ed', and sorry you have to be here. It's been rough for you, but it is going to get better. With people like spiny on your side, it has to, no way it won't. As spiny says, please tell us a little more about what you are doing now to treat/try to treat your CH. It would be best, as spiny says, for you to start a new thread, preferably in one of the more private areas, such as "Theory and Implementation." To start a new thread, click on that category from the General area, and at the top and the bottom right side of the board you will see a tab that says "Start A New Topic." To answer the question you asked elsewhere, "MM" is "magic mushrooms," or mushrooms containing psilocybin, which you mention in your first post. As you say, those can be hard to get your hands on in the short run. But there are other substances you can use for "busting" that are easier to get -- legal to buy and possess -- and there are many other things you can do, such as the vitamin D3 regimen and optimizing your oxygen system, that will also make a big difference for you. So, our new friend, let's get started making things better for you!

I'd bet that Psiloscribe can steer you right on this one, regarding Chicago-area medical O2 suppliers. He might see this, but you can PM him from here: https://clusterbusters.org/forums/user/17221-psiloscribe/. He's in Lombard, and he knows everything about everything. For welding O2, Airgas is a one possible O2 supplier. www.airgas.com and then Find A Branch. It's weird to me that they don't show which branches do medical and which do industrial . . . but I guess you can call and ask. We also have used welding O2 for many years with no issues. I you go for welding O2, don't ask for/about medical sizes (M, for example). Welding tanks are generally designated by cubic feet. I think an M tank is about 120 cu ft. Since you have to pick up the tanks and return them for "refills," that's a lot to lug around.

Hemicrania continua is a "headache" condition that often seems to be confused with CH. https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/ (HC is effectively treated with a drug called indomethacin, which doesn't help with CH.) Migraine: >>Migraines often begin in the evening or during sleep.. . . In typical cases, the pain is on one side of the head, often beginning around the eye and temple before spreading to the back of the head.<< http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do Are you able to sit or lay still when you have an attack? People with CH generally can't -- they're too agitated. People with migraine can. Some people take a lot more melatonin -- up to 25/30 mg. Have you tried an energy drink yet? For most people, even if they drink it at 2:30am to reduce or abort an attack, they don't have problems getting back to sleep. Have you tried the feet-in-hot-water thing? These are all less appropriate/effective than oxygen for CH or Imitrex for CH or migraine, but that seems to be where you're at for now. Again, I'm surprised that you had an ONB but not some other more conventional first-line things, but I'm no doctor.

The like-clockwork regularity of your attacks definitely does support your neurologist's hunch. The one-sidedness could be a bunch of things. But put that regularity together with one-sidedness and it does make it very reasonable to treat it as CH and see what happens. I don't think prednisone is usually used for migraine or other one-sided "headaches," so maybe its effectiveness will be a test. Oxygen would be the best test, I think. Are you taking melatonin at night?

You were diagnosed by a neurologist as having CH (as you say in your first post) without having any symptoms except severe pain behind your eye? Since I'm not a neurologist or any kind of doctor at all, I can't really comment on that, except to say that it seems a little odd to me. I would think a doctor would be inclined to go first to migraine or sinus headache. But I really really really don't know, and your question is a good one. You might have noticed by now that this is a pretty small community. Used to be a lot bigger, but now people are often using Facebook groups. Since you sometimes ask general questions, you will probably get more responses from a bigger group. I'm not trying to get rid of you, and in general I think the folks here can be more substantively helpful than those FB groups, but you might consider also joining a FB group. The group called "Cluster headaches" is a good one. You have to ask to join. If I try to link you to it, I just get a "Page Not Found" message, but it shouldn't be hard for you to find.

Doggone attaching-images (or documents) function is a mystery to me, and it doesn't seem like it worked for you. But what you have sounds right to me. Since Batch is the expert, and he's amazingly generous with his time, you might jump on a D3 thread over at www.clusterheadaches.com and post any questions there as you proceed. Also many others over there have developed D3-regimen expertise.

Yes, lots of people are told that about D3. As far as I know, as long as you take the full regimen as specified (and regularly check your D levels), you're not in danger. Here's what the experts say about lithium (from Goadsby, "Treatment of Cluster Headache"): >>> Lithium carbonate is mainly used in chronic CH because of its side effects, although it is sometimes employed in the episodic variety. The usual dose of lithium is 600 mg to 900 mg per day in divided doses. Lithium levels should be obtained within the first week and periodically thereafter with target serum levels of 0.4 to 0.8 mEq/L. Neurotoxic effects include tremor, lethargy, slurred speech, blurred vision, confusion, nystagmus, ataxia, extrapyramidal signs, and seizures. Concomitant use of sodium-depleting diuretics should be avoided, as they may result in high lithium levels and neurotoxicity. Long-term effects such as hypothyroidism and renal complications must be monitored in patients who use lithium for extended periods of time. Polymorphonuclear leukocytosis is a common reaction to lithium and is often mistaken for occult infection. Concomitant use with indomethacin can increase the lithium level.<<

I think verapamil is pretty affordable. It's a preventive, not an abortive, but it might be better than nothing. There are programs available at many/most pharmacies to reduce the price of sumatriptan injections and sprays. Still very expensive, but less. http://www.goodrx.com/sumatriptan?form=nasal-spray&dosage=6-unit-doses-of-20mg&quantity=&days_supply=&label_override=sumatriptan

There's no message there beyond the word "I."

You have to be logged in to see that section. If you're posting as a guest without having registered/logged in, you won't be able to get there. It's here: https://clusterbusters.org/forums/forum/6-clusterbuster-files/

bd, very very sorry you have to be here. Attacks returning after a prednisone taper is not unusual. Basically, you're just back in your cycle, so how long it will last is anyone's guess, particularly since this is your first cycle. Hopefully, not too much longer. It's a little hard to tell what you're asking. If you're asking whether it's possible that after this cycle ends you'll never have another one, I suppose it could be possible. There wouldn't be many reports about that -- Who would know? Who would report it? Who would they report it to? Some people do have long remission periods, of several years or more. That's more common nowadays, I imagine, because of treatments that have been developed by the CH community, like the vitamin D3 regimen and busting. "Chronic" CH is when you have had attacks every day for a year, with only a one-week break (or something like that). "Episodic" CH is when you have cycles that last some period of weeks or months, with periods of remission in between. You shouldn't be worrying about being chronic right now, and, realistically, you also shouldn't be hoping that you'll never have another cycle after this one ends. So you should be very active in finding things that work for you. CH is definitely not a great thing to have, but you can get to where you can manage it quite well. You should very seriously consider starting the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ You MUST get a prescription for oxygen from one of those fine Buffalo doctors: https://clusterbusters.org/oxygen-information/ This is the most important thing for you to do. You can try melatonin at night, starting at 6-9mg and working up. You should try drinking an energy drink, such as 5-Hour Energy, at the first sign of an attack. Your doctor should probably prescribe a preventive, such as verapamil, and an abortive, preferably injectable sumatriptan or at least a nasal sumatriptan spray. Not sumatriptan pills, which are pretty much useless. You should learn about busting, which has restored many a CHer's quality of life. You can read about that in the numbered files in the ClusterBuster files section of this board. And you should stick around here and learn from the good and knowledgeable people who have been around this block. You are not condemned to a life of chronic or episodic misery, if you take responsibility for your treatment.

Remember what spiny said up above about trying some form of ginger product to reduce your ongoing headache. 5-Hour Energy is sold at grocery stores and drugstores. A lot of places have it right at the counter where you check out. It's caffeine mixed with other things. Since it has quite a bit of caffeine, you don't want to take too many of them. You would only take it when you feel an attack coming on.

Zomig is often effective. I'm glad it helps you! Injections (Imitrex) are even more effective. You do have to be careful how much you use of the Zomig or the Imitrex, but you should get enough to use it once or twice a day. Insurance companies are very stingy about those drugs, and they are expensive. Please try really hard to get oxygen from your doctor on Monday, and please try the vitamin D3 regimen. Those can make a very big difference. I'm sorry to say that there is no pill you can take every day to prevent CH from coming back. But many people do take Verapamil every day, and for some people it can be a very effective preventive, at least for a time. Like any drug, it has side effects that need to be monitored, and long-term use is surely not good for you. The Vitamin D3 approach seems to be more effective as a preventive, with probably a lot less side effects (if any). It's a lot of pills to take every day, but they're pills that are good for you. The things that people have to endure with CH are horrible. Two small kids, trying to keep a job . . . we can all understand how incredibly difficult that is for you. The pain itself is bad enough. Don't blame you for taking whatever you could get to try to knock yourself out. But stick with this, stick with us. We'll help you get to a better place. Fingers crossed along with you. Do you have some 5-Hour Energy drinks on hand? They can be quite helpful to abort an attack or make it less severe.

The energy drinks do not work preventively (if that's why you had one at lunch).