CHfather

If you only waited three days between LSD doses, that might be why the second dose had no effect. It sounds like you have lots of experience, so maybe you have found that three days between doses works for you, but I'm sure you know that the recommended break between doses is five days. You don't say what the effect on your CH was of your first LSD dose, but if you feel that you had good effects from that, the three-day break might explain why the second one wasn't effective. Just playing detective here, since who really knows, but I'd say that an effective dose of LSD is likely to work better for you than a gram of shrooms (again--you know your dosing effectiveness better than I do, so I'm just speculating based on typical situations. Summarizing my ramble: (1) If your first LSD dose worked but your second didn't, it might be because of the 3 days instead of 5, not because the LSD you have is not good. (2) Since LSD is generally considered to be as good as or better than shrooms for treating CH, it seems like you ought to go for the LSD, particularly if the one gram of shrooms that you have left is less than you would typically take to treat your CH.

I hope you have found the answers to your increased activity, jules, and will soon have it under control. Thanks for that info about Sucralose (Splenda) -- so many hidden triggers, though this does not seem from what I've just googled to be a trigger for everyone (but what is?). When you say your "normal thing" is 2-3 clusters per month, do you mean every month, or just when you're in cycle? Either way, it's not a CH pattern I'm familiar with. When you say you're "trying a relative of Imitrex," do you mind saying what that is? Zolmitriptan,maybe? Do you know why oxygen hasn't been prescribed to you (maybe the infrequency of your previous attacks and the fact that you felt you controlled them well with the sumatriptan tablets)? I'm surprised about the Effexor, which is an SNRI, if you were also doing a triptan, since, as one source says, """It is very important that patients not combine a triptan drug with an SSRI or SNRI drug. Serotonin syndrome is most likely to occur when starting or increasing the dose of a triptan or antidepressant drug. Symptoms include restlessness, hallucinations, rapid heartbeat, tremors, increased body temperature, diarrhea, nausea, and vomiting. You should seek immediate medical care if you have these symptoms."""

Scents are definitely right up there at the top of the trigger list (not for everyone, of course). I'd say they're very close behind alcohol. In my view, they're high up in the "second place" group that includes barometric pressure changes, stress, some sleeping patterns (shift work, naps), and some foods and food ingredients such as MSG. I'm probably missing some -- really just saying that scents/fumes are very common triggers.

About a third of people with CH, according to two different studies, experience shifting of sides between cycles or between attacks within cycles.

You're a most fortunate person, 'Mot. May your success continue. You're announcing this here as though it would be news -- Do you realize that the people who created this site (not me; people long before me; great and courageous people) discovered and popularized the mushroom treatment, and took a lot of risks and fought a huge amount of resistance to do that? Your girlfriend would not have found out about it to tell you if it wasn't for those folks. Your experiences are rare in many ways, from oxygen making your attacks worse to being able to end a cycle with two 1-gram doses. For the good parts of that, you can be very thankful and, as I say, you should be very thankful to the folks who helped make it happen for you. Best wishes for continued success. Your theory about how shrooms work to treat CH is probably a little off, but who needs theory when you have such a good thing going for you!

Not spectacular results (unless you were in the 60%), but encouraging, I think. >>>>>> REDWOOD CITY, CA--(Marketwired - May 19, 2016) - A peer-reviewed paper* in the International Headache Society journal Cephalagia reported that cluster headache patients treated with the Pulsante® Microstimulator achieved effective pain relief for 24 months. Over 60% of patients enrolled in a follow-up of the original Pathway CH-1 study maintained their therapeutic response for two years. A total of 5,956 attacks were evaluated across 33 chronic cluster headache patients in the open-label follow-up study. At two years, 45% of patients experienced acute effectiveness in ≥ 50% of attacks by using only the Pulsante® Microstimulator. Furthermore, 33% of patients experienced a ≥ 50% reduction in attack frequency versus baseline. A total of 61% of patients were acute and/or frequency responders in the long-term study. The Pulsante® Microstimulator is the first electroceutical device with documented long-term effectiveness for the treatment of cluster headache. The system stimulates the sphenopalatine ganglion (SPG), which plays a critical role in cluster headache pathophysiology. The device is inserted through the gum using a minimally invasive technique that leaves no visible scars. The targeted therapy provides both pain relief from acute cluster headaches and/or a reduction in cluster headache frequency, reducing cluster headache disability. * Long-term effectiveness of sphenopalatine ganglion stimulation for cluster headache: Tim P Jürgens, Mads Barloese, Arne May, Jose Miguel Láinez, Jean Schoenen, Charly Gaul, Amy M Goodman, Anthony Caparso, and Rigmor Højland Jensen, Cephalalgia, 2016. (http://www.ati-spg.com/europe/en/ati-neurostimulation-system/publications/)<<<< http://www.marketwired.com/press-release/two-year-study-results-show-pulsanter-microstimulator-provides-sustained-long-term-relief-2126573.htm

Thank you! Yes, I see from the calculator I just looked at that 70 ng/mL = 175 nmol/l. So you have a ways to go. But you have been PF for several days now! That is wonderful news!!!! Congratulations for taking control!

Because I'm not a scientist, I am going to assume that what you report as "nmol" is the same as the measure I see most often used for D levels, which is ng/mL. If it is the same, I can quote Batch (the developer and fastidious student/teacher of the D3 regimen) as saying, "A 25(OH)D serum concentration of 70 to 90 ng/mL is sufficient for the 82% who respond to this regimen." For those who don't respond, he has recommended getting up to 100-150 ng/mL. If your current 114 number is ng/mL, I'm going to say you're fine, and all you want to do is sustain that level. Having seen one person who overdid it with the D3 with substantial consequences, I'm advising caution. BUT I say that as a non-expert, only using the expert's (Batch's) opinion as a starting point. I'd advise you to communicate directly with Batch, who you can reach here: https://clusterbusters.org/forums/user/17422-batch/ To me, he's one of the handful of CH heroes, not only because of developing and advancing the D3 regimen, but also because he is virtually always highly responsive and very helpful to anyone who contacts him. He will also like having you as another positive data point in his result tabulations.

These are pills? (I can't see that Aurobindo, which is a company based in India, makes any sumatriptan meds besides pills, but my search has been far from exhaustive.) If so, it just could be because pills hardly work for CH anyway. But maybe you have had success with pills in the past -- or maybe this wasn't pills that you're taking. FWIW, here's someone else saying that Aurobindo trex is ineffective for them: https://www.reddit.com/r/migraine/comments/3i9ds9/sumatriptan_generics_do_you_notice_any_difference/

Thanks, Mercy! When you say it has been effective for you most of the time, I have two questions. (1) Do you take it when you get an attack, as an abortive, or as a daily pill? The latter, I assume, but I'm not sure from your message. (2) Are you definitively diagnosed with CH, or do you have one of the hemicranias? Thank you.

Ideally, you will empty your bag when you inhale and it will refill while you are holding the air in your lungs and then exhaling. It should refill fast enough that you don't need to wait for your next inhale. You use the flow rate adjustment on your regulator to achieve this state -- a higher flow rate if you are having to wait for the bag to fill before you can inhale, a lower flow rate if the bag is filling more quickly than you are inhaling. Since most people find, eventually, that a 15 lpm flow rate is too slow to refill the bag as needed, if you're using a flow rate much lower than 15 you might not yet be optimizing your O2 use.

Do you feel confident that you have the right O2 setup and are using it properly?

There are people in the world who have some migraine symptoms and some CH symptoms. http://www.ncbi.nlm.nih.gov/pubmed/17367596 There are studies that indicate that O2 will also sometimes help migraine: http://www.ncbi.nlm.nih.gov/pubmed/22560101 As we've discussed, HC is a reasonable diagnosis to pursue, easily tested with indomethacin.

Yes, some people get nausea (36% in one study), to the point of vomiting (17%). If you are able to find the full article of Rozen, "Cluster Headache in the United States of America" online, it will have answers to quite a few of your questions. I remember it being very hard to find the whole article and not just the abstract, and unfortunately this board doesn't allow for attachments (or I'd just attach my copy). Rozen also broke out the same data for a report on cluster headache among women. I don't think this is the most reliable study, for a number of reasons, but there were a lot of people who filled out the questionnaires.

Of course, I would try it -- indo is a pretty simple test to see if you have a hemicrania and not CH. Some CH responds to indo, too. It's hard on the guts, though, and is often taken along with something to protect the stomach lining.

ginger tea, ginger candy . . . i suppose grated ginger if you could stand it. Here's info from another source: >>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnt dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink. In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as Reeds Extra Ginger Brew, Ginger Peoples Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough. A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com)<<< Some people have found that OTC pain meds, such as Excedrin Migraine, help with shadows.

Nooooo!!! We need you here!

Ditko', hoping for good things for you to continue. Good work on splitting those doses! As Jeebs said, you're in a great position for busting with truffles, something that has helped lots of people with CH, so do look at those busting files -- and do seriously consider the D3.

Kelly, I don't think your symptoms rule out migraines. The women thing is, I think,being altered as more women are accurately diagnosed with CH, so that's not a big factor for me arguing that maybe you don't have CH. Aura is somewhat rare with CH -- studies have put it between 2% and about 20% (a big range, I know; I don't really trust the 20% figure, but 2% seems low). Stuffy nose is pretty common with migraine, and so is eye pain. An hour to an hour and a half once would have been considered pretty long duration for CH, but we've definitely seen lots and lots of attacks that long and longer. One distinctive characteristic of CH as opposed to migraine is that people having CH attacks can almost never sit or lay still. Since I'm not a doctor, I'll stop there. You can look up the list of CH symptoms using google, of course. The oxygen might be a good test, since it usually does not help people with migraines much, or at all. The sumatriptan helps both -- most CH meds are hand-me-down migraine meds, but not oxygen. I don't know about the additional tests you mention, but they sound reasonable. A couple of folks have indeed found pituitary growths that could be managed.

Kelly, you have a prescription for oxygen but no other prescriptions? Not Imitrex or Verapamil, for example? Hit the O2 as soon as you feel an attack coming on. It's not clear to me how big the gap is between your wonky vision and the attack itself, so you might have to experiment a little. (Blurred vision/aura, while not completely uncommon, are not present for many or most people with CH.) You should probably read this for some tips about breathing strategy and to be sure you are getting the right equipment: https://clusterbusters.org/oxygen-information/. You might want to call the oxygen supplier before they come, because mistakes are often made: You want oxygen in tanks, not a concentrator, and you want at least one big tank (an M tank) and at least one smaller one for portability (an E tank). You want regulators that go up to at least 15 liters per minute. I say "regulators," plural, because the big tank and the small tank use different kinds of regulators. And you must get a non-rebreather mask. This might all be new to your supplier, if they don't have other customers with CH. When they bring you the equipment, try to get them to set it up for you and give you the basics of how to use it. Tape up any open holes in the mask you get and remove the strap. Hold it to your face to breathe in, remove it to breathe out (being sure you don't get any room air in). Hold the air in your lungs for a few moments before you breathe out. Look down toward your feet as you do this breathing. Also at the beginning of an attack, try quickly drinking an energy shot, such as 5-Hour Energy. That usually speeds up the abort. The D3 protocol, as Jeebs says, will make a big long-term, and maybe short-term, difference. You can read about that over in the ClusterBuster Files section, where you can also read about busting in the numbered files, for which, as Jeebs also says, you are very well positioned since you're apparently not using any pharma meds.

I'm so sorry that happened. I wish it was surprising, but it isn't, at all. Most doctors, even neurologists, know very little about CH. Finding a doctor who knows anything, and who cares about learning, is very rare. It's even more rare to find one who will prescribe O2. Completely crazy, but that's the way it is. You have a few options. One is to go back to your long-time doctor, particularly if she is the one who diagnosed your CH, so at least you aren't starting from scratch. Maybe she will agree to be educated in order to help you. You can bring her some of the relevant medical literature: This is the double-blind, placebo-controlled trail that was published in the Journal of the American Medical Association: http://jama.ama-assn...02/22/2451.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.clusterhe...urvey-final.pdf See if you can get 1 and 2 to your doctor or someone in her office, maybe the one who asked you about O2, unless you think she is too dense or defensive. But she did ask; and you can answer. Even with this completely persuasive information, many doctors will still resist prescribing O2, in part because (although they usually won't admit it) they don't know how to write the prescription. If you can tell her 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.") She 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. With almost any doctor you find, you will still meet with ignorance and resistance. If you can get to a headache center, that's your best bet (still not guaranteed) for a good doctor (and their wait times can be pretty long). There is a list of recommended doctors by state here: https://clusterbusters.org/cluster-resources/ In general, these docs are recommended because they understand oxygen. There was one guy who called doctor's offices and walk-in clinics and asked if they had patients with cluster headaches and if they prescribed oxygen to those patients. He got yeses at a walk-in clinic and was able to get his O2 quickly. (I have a theory that walk-in clinics/urgent care places are more likely to know about CH better than doctors. Just a theory.) You can set up a system using welding oxygen, which many people do. You'd need to buy or rent some tanks, a regulator, and a mask. You can do all that pretty quick if there's a welding supply place near you, but of course insurance isn't going to cover that. In the short run, some people recommend getting your nose up against a cranked-up air-conditioning unit, or in your freezer, and breathing deeply through your nose. Not the same as O2, but people have said that it helps. I have no experience with this.

Very nice response from jon', covers the bases. I would say, just from observation, that most people like the chilled drink better . . . but there are some who prefer it room temp. Gotta find what works for you. There are people who go straightaway for the higher-caffeine shots (I can't personally see any reason to down an 8-ounce drink instead of a 2-ounce shot, but, again, some people do -- I suspect that either they think, wrongly, that the bigger drink will have more caffeine, or that they just started with RedBull or Monster and it worked for them, and they don't want to change). But I think starting with the 5-Hour Energy is the way to go. There's a list here of caffeine levels in beverages: http://www.caffeineinformer.com/the-caffeine-database

I can't specifically answer your question about the attacks being spaced out, except to say that it seems to me to be unusual but probably not unheard of. CH patterns are so variable. Similarly, regarding your earlier question about sleeping in, I think a lot of people get attacks when they alter their sleeping patterns, which would include sleeping in and particularly seems to include napping. Not universal, but very common.

The pills don't work for at least 75% of people. Maybe the nasal spray is less expensive than the injections? Most pharmacies have reduced-price coupons for the injectors and the spray (look at a place like goodrx.com), and you can split your injections to get 2 or 3 from one injector ( It's still not cheap by a long shot, but could be worth it. Please let us know what you get from your O2 supplier. You need big tanks (M tanks) and a smaller more portable one or two for work (E tanks), which you can negotiate with the supplier. Tanks of O2, NOT a "concentrator," which makes O2 out of room air. The prescriptions should be for a regulator that goes up to a flow rate of 15 lpm (liters per minute), and a non-rebreather mask. I strongly advise you to call your supplier and discuss all this with them before they deliver anything to you. If your prescription is for less than 15 lpm, you can buy a regulator separately. Most oxygen suppliers have very little experience with CH, and they just might bring you a concentrator with those things you stick in your nose (cannula), because that's what most of their customers get. Read this: https://clusterbusters.org/oxygen-information/ Two Excedrin migraine pills have as much caffeine as one 5-Hour Energy shot, and a lot more than one RedBull. It's believed that some stuff in the energy drinks helps with CH; there's nothing in the Excedrin besides the caffeine that will help. Try increasing the amount of melatonin you take at night. In the short run, you should probably also be on some kind of pharma preventive, such as verapamil, unless that is contraindicated by your heart issues. For most people here, busting has been the best strategy in the long run for long-term preventive effectiveness and no lasting side effects. Read about busting in the numbered files in the ClusterBuster Files section of the board.

Chiropractic and acupuncture probably won't help you. Might be worth trying, of course. Some people get some relief. It's not a "structural" problem. You can split your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ OXYGEN!!!! OXYGEN!!!! OXYGEN!!!! https://clusterbusters.org/oxygen-information/ The "D3 regimen": https://clusterbusters.org/forums/topic/1308-d3-regimen/ Melatonin at night, starting at maybe 6-9 mg and working up if/as needed Maybe a pharma preventive. Verapamil is usually the first choice. Busting: Look through the numbered files in the ClusterBuster Files section and ask questions