CHfather

A shadow is a kind of ominous feeling in the area where you usually have pain. Sounds like you had some of that, but not so much, and it sounds like you haven't had those severe pain attacks that led you to think you might have CH. I'm sorry your doctor wasn't more helpful; I hope you got some relief from the rolfing/craniosacral treatment you had today. I'm sorry to be such a nag about this, but I think it's very important that if you have that pain again you get yourself back to the ER, which might at least speed up the time before you see a neurologist. I think that assuming that you have CH and trying to self-treat it is not the best thing you could be doing. I'm not saying you're doing that, or doing that exclusively (it's clear that you are considering other possible explanations); I'm just saying (again, and, I promise, for the last time) that it really doesn't sound to me like it's CH that you have.

What is the status of your attacks? Still having them? Having any "shadows" that seem to suggest that an attack is lurking?

You should forgive me for continuing to say this, but IF you have CH, that would be a reasonable target. (It's probably a reasonable target for anyone -- my point is that since I don't think we/you know what's up with the attacks you have experienced, I have no way of knowing whether your D level is relevant or not.) What's been happening with you lately, in terms of attacks, doctor visits, whatever?

Same test. Results get reported in different formats. The calculator here says it's 51.7 http://www.endmemo.com/medical/unitconvert/Vitamin__D.php Same here: http://www.vitamindservice.com/node/91 84 is the average level that Batch has found in his research for people who have become PF, so you could consider it a target, but you might need more (or less).

I feel like reports regarding CBD oil are all over the map -- different types, different uses (aborting vs. preventing), different levels of success. If you just type CBD into the Search bar near the top right of the page, and be sure it's set for "All Content," you'll see more than 100 posts, which you can browse through. Enough reported successes, I would say, that it's worth trying.

Mit', this is a question you might want to also post at the Facebook Cluster Headache group. More chance of reaching someone with the experience your interested in.

Attacks after using O2 do indicate that you didn't stay on it long enough after aborting an attack. 5-10 minutes after the abort is recommended. Alternatively to breaking open the 6mg injectors and getting two or three shots from them, some doctors will prescribe you vials of sumatriptan and syringes so you can measure out your own dose, and there are autoinjectors with lower mgs. There's a 4mg, I'm pretty sure, and also a 3mg, I think.

I suspect that this is a question you should ask Batch directly. First time I recall hearing of the spray, and I do read pretty much every post. Batch is great at answering PMs. Go to the envelope icon at the top right of the page, open it, and put Batch into the "To" line. Maybe there will be more discussion of this here, but if not, I'd sure appreciate it if you let us know what Batch says.

Just a note regarding masks. Both the non-rebreather and rebreather (partial rebreather) have a bag attached. The difference is that the non-rebreather blocks exhaled air from going into the bag (so you aren't rebreathing any of the air you exhaled, and are getting only pure O2), while the partial rebreather allows exhaled air into the bag. You want the non-rebreather.

Very unfortunately, many people do find that strenuous exercise triggers CH attacks. I don't recall seeing a way around that problem, but maybe someone will have a more positive note for you. Commenting on your treatments . . . Are you splitting your trex injections? Triptans seem to extend cycles, worsen attacks, and cause rebound attacks. Using less with each injection can help: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ It seems that you don't have OXYGEN. You really, really want that as an abortive that will reduce your need for the triptans. Depakote is sometimes prescribed as a preventive. The side effects can be troublesome. More commonly prescribed is verapamil.

Aside from one or two instances of extreme pain (which might or might not have been at CH-level severity), you have virtually no symptoms that would lead to a CH diagnosis. No runny, red, or puffy eye or drooping eyelid, no nasal congestion. Vertigo/dizziness are not symptoms related to a CH diagnosis, although a very small number of people with CH have them. (They are different things: vertigo is feeling like you or the room are spinning; dizziness is feeling woozy, lightheaded, etc.) Your attacks are not always at the same time of day. Advil doesn't alleviate CH pain; it has no effect on it at all. As we have discussed, virtually everyone with CH is too agitated during an attack to lay still or sit on the floor. It is highly unlikely that melatonin + vitamin D would account for the experience you just had. (Migraines, and other types of headaches, do sometimes wake people up at night. Some people with CH are not awakened during the night by attacks.) You seem to have something going on, but I can't see a sensible doctor diagnosing it as CH. I say all this because I worry that treating it as though it's CH as you are doing, with seeds, D, melatonin, energy drinks, etc., might somehow be making it worse if it's not CH. I know you're trying to get to see a doctor, but that really is your most crucial step right now.

yep. thanks, spiny.

This is a whole different kind of "right." Like I say, if it was anyone but Batch, I'd be dubious. The "regular" way that most people use seems to be pretty darn good, but Batch says his works faster and uses far less O2.

The standard non-rebreather mask has those holes. You just need to cover any open holes when you're inhaling. The "ClusterO2 Kit" mask is actually a different type of mask. You might want to look at the method recommended by Batch. As you may know, he's a true O2 expert. His method uses much less O2 than the usual method. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

Yes, CH is very horrible. If you have CH, it is manageable with the right treatments. The most effective non-pharmaceutical way to abort a CH attack is to quickly drink an "energy shot," such as 5-Hour Energy, at the first sign of an attack. You can do an energy drink (Monster, RedBull), too, but the energy shots, though smaller, typically have more of the ingredients you need (caffeine and taurine). What did they do for you at the ER? If any pain medication, even the strongest ones, was given to you and it actually helped, you probably don't have CH. Even morphine doesn't stop a CH attack. Again, for some reassurance -- there are some things that do stop attacks, just not standard or extreme pain medications. I would say that "throbbing" is a rare description. You should keep a headache diary; it will help the doctor. I can kind of see the "biting down hard on sheet metal" part. The other symptoms I mentioned above are more indicative of CH. I'd say that CH pain is more commonly described as stabbing (an ice pick to the eye), burning, intense pressure -- things more constant than throbbing. But, of course, you gotta get to a doctor as soon as you can. Preferably a headache center, or at least a neurologist. Most general practice docs, and many neurologists, don't have a clue about CH (if that's what you have). You might take a look at the "triggers" list in the ClusterBuster Files section, just in case something pops up for you there,

There's not enough information here for me to be sure you have CH. Not saying you don't, but as you suggest, it could be other things. In addition to one-sidedness and centering around the eye, other symptoms include watery/teary eyes, runny and/or congested nose, swelling around the eye, and drooping eyelid. The pain can spread to other areas of the head and neck. People usually find it impossible to be still during an attack: they pace, rock, etc. Since if you have CH you would be in the early stages, you would not yet necessarily have all the symptoms. There's a list of recommended doctors in Canada here. Pretty old, unfortunately, but maybe it'll help: https://clusterbusters.org/cluster-resources/ If you see a competent doctor and are diagnosed, s/he should prescribe oxygen. You can't get medical oxygen without a prescription. This feels like a bridge that can be crossed when you come to it. With seeds, you would not be likely to have any kind of trip at all. With shrooms, a trip is always a possibility. There are reliable vendors of seeds in Canada, including www.tranceplants.net (though they are on the other side of the country, in Montreal). The seeds are legal to buy and possess. You can read all about treating CH with shrooms and seeds in the numbered files in the ClusterBuster Files section of the board. You should also read there about the vitamin D3 regimen that helps lots of people. Sleep apnea is often associated with CH. I'm not trying to push you away (wouldn't have written so much if I was). Just saying you probably need more info before you start treating yourself for CH.

I believe that the four repetitions of my reply to freakuancy in this forum surpass the measly three repetitions previously achieved by others. Admittedly, I was using performance-enhancing substances at the time, so it's not a pure record. Somebody should look into this glitch.

Well, you could send your (former) doctor this double-blind, randomized, placebo-controlled crossover trial of 109 adults (aged 18-70 years) with cluster headache, showing the effectiveness of oxygen, as reported in the Journal of the American Medical Association, and ask how it is "anecdotal at best." http://jamanetwork.com/journals/jama/fullarticle/185035 If you would like to flood her with things, I can show you places where it is listed in the most reputable guides to treating CH as the #1 evidence-based abortive (along with subcutaneous sumatriptan). Doctors have books and/or internet resources summarizing treatment approaches for conditions. All she had to do was look in/at any one of them. There's a recommended doctor list (US and Canada) here. It's kind of old, but maybe you can find someone better. https://clusterbusters.org/forums/topic/3037-recommended-doctor-list/

Remember that it's a non-rebreather mask. There is such a thing as a rebreather mask, and it's not what you want. At 15 lpm, you'd get about 4 hours of O2 from a 125 cf tank. (125 cf = 3540 liters, divided by 15 = 236 minutes) A tank that big is very heavy and unwieldy. If you can handle it, of course it's a good idea. Being an old guy, I prefer managing two 60 cf tanks -- but Dallas Denny, who's nearly as old as me, has a great big tank, which he had to drag through five miles of mesquite thickets to get to his house (something like that). Maybe at least get a rolling stand for it. You know the rules about getting welding O2, right? DO NOT say it's for a medical use, and do not request a tank using medical designations (M tank; H tank, etc.). If you feel uncomfortable about questions they might ask (though they probably won't ask any), have a story ready, such as you're just picking it up for a friend.

This is the regulator that many people use for welding O2. There's probably a Harbor Freight store somewhere near you, or you can buy it online. https://www.harborfreight.com/catalogsearch/result/index/?dir=asc&order=EAScore%2Cf%2CEAFeatured+Weight%2Cf%2CSale+Rank%2Cf&q=oxygen+regulator You can get a basic non-rebreather mask at Amazon.com or many other online sites for a few bucks, and it might work fine. This one is better: http://www.clusterheadaches.com/ccp8/

We've heard a lot about how crazy it is to get O2 in Florida. I've sent you a PM about that. Welding is an okay way to go, for sure, but if you can get a decent medical supplier you don't have to schlep to the welding place to get tanks refilled (replaced) while you are in cycle.

At most Mexican resort destinations you can rent oxygen tanks. Ask you O2 provider what they will do for you (they should help you), and if necessary google [oxygen cancun] or something like that. Bring your own regulator and mask, of course. I have heard that the things you ask about are available OTC in Mexico. Just walk into a farmacia and look around. It's possible that Imitrex would be sold under a different brand name there. If they have it, it will likely be much cheaper. Consider stocking up! (The usual warnings about reliability of medications in less-developed countries probably apply, but Mexico does regulate pharma, and if what you get is packaged from a reliable manufacturer, you could imagine it's going to be fine.) At the worst, you could see a doctor for probably not much money and get a prescription. I'm sure steroids can be administered in shots, but you probably want to do the taper, which as you know is pills that you could carry with you. Once you get through security, pick up a couple of 5-Hour Energy shots to use on the plane. A lot of people get hit on planes, presumably because of the changes in cabib pressure. I have been surprised by how many people ask for vacation advice and for some reason find that their attacks are less bad when they are traveling than they are at home. I'm hoping you might be another of those.

Have you had your D level checked? This is the time to be sure you get it up to a reliably effective level, which on average is 84 but can be considerably higher for some (that's why 84 is the average).

You did see the word "wrongly" there, didn't you? I'm not sure what you mean by "in a preventative way." Many people find that when they are in cycle melatonin seems to reduce the severity of their attacks or even to prevent some attacks. It doesn't prevent cycles. It's referred to as a "short-term preventive." Also, people who smoke (as many people with CH do, have lower levels of melatonin than non-smokers.)

I would say that melatonin doesn't help everyone, and in fact there have been a few people here who felt it might have made their attacks worse. So very hard to tell, as you realize, about cause and effect with this damn crazy condition. Trail and learning is all we have -- you could try more melatonin, since 10mg is pretty low when in cycle; or you could try stopping it.