CHfather

Thanks for that info. Good to know! Glad you're set.

Thanks, M'12. If you rent it during your cycle and return it after, that's certainly a reasonable price, at least in the short run. I wonder if one 60 cf tank is enough. I've seen new 125 cf tanks for sale online for $300, full, and new, full 80s for $200. I don't know if one supplier, Air Gas for example, will fill tanks you have bought from someone else, though I would kind of expect so. (The 125 is, of course, a pain to have to schlep to and from for refills. The 80 is bad enough.)

I'm not a melatonin expert, and I don't want to confuse things. My daughter, who has CH, actually got some relief from Trader Joe's brand chewable melatonin, which comes in .5mg tablets. Yes, that's 1/2 mg. And she took just one or two tablets. We had been told by an expert that that brand (the brand is actually Trader Darwin) was the best for absorption. I have been told that melatonin is not well absorbed or utilized by the body. Some people let the tab dissolve under their tongue, I think And there are time-released melatonin and non-time-released. Again, I'm just remembering, and just as probably incorrectly as correctly, but I think the time-release form is considered better for CH. Overall, it's probably best to get him started with something, even if it isn't the perfect thing (if there is a perfect thing), and see what happens. Starting at 10 probably won't hurt, and you can see what the results are. Meanwhile -- I know that I and others have already said this -- keep working on that O2, whether prescription or welding.

spiny may have a better answer for this, but I'd say you can increase the melatonin dosage pretty much daily, though I don't know if you want to jump straight from 10mg to 20mg. You're looking for results, yes, but too much melatonin can really wipe him out in the morning. Just my opinion.

+++ to all spiny said. And an emphasis to: >>Getting O2 can be a hassle. Hopefully you can get that worked out with insurance. If not, using welding O2 is an option. O2 is the best abortive available.<<

No. Just to be clear about terminology, I think you're saying that your regulator has a DISS fitting to which a demand valve system can be connected. DISS stands for something like Diameter Index Safety System.

In addition to price, another reason that I prefer amazon is that you can get faster delivery, which is often important, if you're willing to pay a little more or you're an Amazon Prime member. At least in the old days, eBay suppliers generally offered only regular shipping, and they didn't seem to ship every day. I haven't checked lately.

Try to get him to do the D3. That helps some people pretty quickly, and helps most over the long run. A don't neglect trying the energy shot, if his health will handle it. He can just try a strong coffee at the onset of an attack. No idea how old your father is, or his other statuses, but it's my understanding that Medicare won't cover oxygen, Medicaid won't cover oxygen, and the VA won't. "Regular" insurance should. If the fight becomes impossible or just too difficult, you can consider doing what many have done and creating your own system using welding oxygen. You can do that quickly and easily. If you decide to go that way, just ask. As Rod says, there are easy to acquire/legal to buy and possess substances, particularly rivea corymbosa (RC) seeds, that are used by some "busters" with very good success to treat CH. Read the file on LSA here: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ And also read the core files--for example, the one about "the busting method." Again -- get back to us if you decide to proceed. Has he tried a prednisone taper? That can sometimes stop a cycle, or at least give a break. Several people here have said that they put their feet into a bathtub with water that's as hot as they can stand at the start of an attack, and it can abort an attack pretty quickly. Many people say that melatonin at night, starting at maybe 6-9 mg and working up as necessary, helps them. Some people go up into the high 20s of mgs before they get real relief.

Oxygen and triptans are abortives. They make the pain go away, but it will come back pretty much on its regular schedule. "Busting" with psychedelics ends cycles and can prevent new cycles. So, two different kinds of things--abortives and preventives. Verapamil is a pharmaceutical preventive. The vitamin D3 regimen is a very effective natural preventive. More about oxygen: https://clusterbusters.org/oxygen-information/ More about D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Both of these are strongly recommended. More about busting in the numbered files in the "ClusterBuster Files" section. Your dad should also try drinking a cold energy shot, such as 5-hour energy, at the first sign of an attack. That can be an effective abortive, or at least reduce the amount of pain. Is he using sumatriptan injections? That's the most effective abortive form of sumatriptan (as opposed to pills, which help practically no one, and nasal spray, which helps some people). If he is using injections, he should be splitting them. More about that here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

You can't get a demand valve system without a prescription. Sometimes there are some for sale on eBay, and maybe other places. You can get 25 lpm regulators at lots of places--amazon and eBay among them. You have to be careful what you buy, though, because different size tanks take different types of regulators. The smaller tanks use a CGA 870 regulator, link the one pictured here: http://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ?ie=UTF8&keywords=cga%20870%20regulator&qid=1465345545&ref_=sr_1_4&sr=8-4 Larger tanks use a CGA 540 regulator that will often look like the one pictured here: http://www.amazon.com/Medline-HCS5408M-Best-Valued-Regulators-Connector/dp/B00BLQKI86?ie=UTF8&keywords=cga%20540%20regulator&qid=1465345653&ref_=sr_1_1&sr=8-1 Of course, you can look at the regulator on your current tank to see which you would want right now. However, if what you have now is a tank that takes an 870 -- that is, a smaller tank -- it's likely that you are ultimately going to want a larger tank, unless you have several small ones. Depends, of course, on how many hits hubby gets each day and how long it takes to abort them. You use more O2 at 25 lpm, but the abort is faster. AND, if you're going to get a "25 lpm" 540 regulator -- the kind for the larger tank -- you might as well get one with unlimited lpm, which would be a welding regulator. The most commonly recommended one of those is this one: http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator However, I notice that amazon has one that looks the same for less $: this one: http://www.amazon.com/IMAGE%C2%AE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2?ie=UTF8&keywords=cga%20540%20regulator&qid=1465345653&ref_=sr_1_2&sr=8-2 Welding regs don't have clickable lpm gauges like medical regs, so you have to fuss with it a little to get it set right -- but it does provide very high lpms if they are needed. The only reason to use a higher-lpm regulator is if he has to wait for the bag on the mask to fill before breathing in. It allows for a more forceful breathing pattern while still having the O2 ready for the next breath.

Batch added Benadryl to the D3 regimen. It was temporary at one time (during high pollen seasons), but I have the sense that maybe he's now suggesting taking it every day (except for the side effects) You can check your local pollen levels at weather.com, under the "More Forecasts" tab. I could be wrong about the taking it every day thing, but maybe you might try it and see what happens. Here's what he wrote to me in an email not long ago: >>>>>25 to 50 mg/day (25 mg every 12 hours) of Benadryl (Diphenhydramine) is sufficient for most CHers. The max daily adult dose for allergic rhinitis is 150 mg/day so nothing wrong with 25 mg 3X/day. Just avoid driving as that much benadryl will make anyone very drowsy. I added the Benadryl (Diphenhydramine) in March of 2015 after I fell out of remission during an exceptionally heavy pollen fall that coated my black pickup turning it gray as if someone had dumped a bag of Portland Cement on it. We returned from travel on 7 March 2015 and the pollen fall from the Alder trees was in full bloom. It took less than six hours for allergic rhinitis to set in and 24 hours later, the CH beast started jumping ugly on me. It took a few days at 50,000 IU/day plus the rest of the anti-inflammatory regimen for me to realize increasing the vitamin D3 intake wasn't a solution. I was still getting hammered with no indication of a letup. At that point the clue bird made a low pass and my good idea light came on bright and flashing... Treat the Allergy!!! Allergic reactions trigger a flood of histamine that in turn triggers the release of inflammatory and pain inducing cytokines like substance P and CGRP (Calcitonin Gene-Related Peptide) from the hypothalamus and trigeminal ganglia... Do these locations sound familiar? They should as they're the main players in CH pathogenesis. After a little research, I selected Benadryl (Diphenhydramine). It is a first-generation antihistamine that passes through the blood brain barrier to block H1 histamine receptors on cells throughout the brain and in particular, the hypothalamus and trigeminal ganglia. Second- and third-generation (non drowsy type) antihistamines cannot do this so will not be as effective in preventing the histamine reaction. With the reaction to histamine blocked, the anti-inflammatory regimen started working as advertised so I dropped back to my usual vitamin D3 maintenance dose at 10,000 IU/day.<<<

Great! Thanks!

Thank you! This seems completely sensible to me, particularly because of the role of histamines in CH and because of what has been learned lately about the positive effects of adding a commercial anti-histamine (benadryl) to the vitamin D3 regimen. Was there a particular resource (or resources) you turned to as you adhered to this diet? A website, a book . . .? Again -- thanks very much for taking the time to share this.

I feel like it's fairly common (?). It's definitely true for my daughter. Hoping today/tonight are better for you.

I am so so so sorry to read this. It really hurts to think of you going through that nightmare. I feel like you're knowledgeable about CH treatments and I know you've read around at the board, so I feel like it's almost insulting to ask what you're doing to treat your attacks. If you want to discuss that, we can. Mostly I wanted you to know that I heard you and I wish so much that this wasn't happening to you.

This doesn't sound to me like the typical onset of CH, this kind of gradual worsening and sustained pain that you are describing. I think for most folks it's just like, wham, the whole full-blown thing hits you out of nowhere. I'm not claiming any more expertise than the thousands of posts and other materials I've read (of which maybe a hundred discussed CH onset, since I did edit a booklet of accounts from people about their CH). And the question would arise, If this isn't CH, what is it? So it could be. I suppose it could be some kind of hemicrania, but that doesn't fit very well, either. (Here's some info about hemicranias: http://www.mhni.com/headache-pain-faq/unique-neurological-conditions/chronic-paroxysmal-hemicrania) Some doctor advice: Continue keeping this kind of detailed diary. It could help with a diagnosis. Also -- Unfortunately, many neurologists don't know much about CH and other severe head-pain conditions. If you are able to get to a headache center, try to do that. Did the oxygen you got at the ER help with the pain? A "yes" would be meaningful, because O2 is effective against CH but generally not effective regarding most other conditions (migraine; hemicrania). But a "no" would not necessarily be meaningful, since O2 is often administered ineffectively, so you wouldn't know if it might have helped if it had been administered effectively. Since I don't know whether you have CH, I'm reluctant to make any suggestions -- and there aren't many short-run things to come up with, in any event. I will say that many people who have CH get some relief from beverages containing caffeine, particularly from energy shots such as 5-Hour Energy or drinks such as RedBull. People with CH can sometimes get pretty quick relief from the vitamin D3 regimen that you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ I guess I am thinking that energy beverages and the D3 regimen probably won't be harmful to you no matter what you have, and they might help, but you will have to decide about that. I hope things will clear up for you soon and this will either be some kind of one-off incident or you'll get a diagnosis and effective prescriptions and other advice. Sorry you are suffering like this. If you do get diagnosed with CH, please come back and we can help make sure you're being treated properly.

If you can make it, the CB conference in September (it's in Austin this year, but probably Chicago next year if the previous pattern holds) is a pretty amazing experience for everyone who attends. https://clusterbusters.org/forums/topic/4253-2016-clusterbusters-conference/

Aside from the trip, which so far has been pretty mild, is there something else that concerns you about dosing now? Not minimizing the trip thing; a lot of people really don't enjoy any kind. But I think we have generally recommended here that if you have any doubts about the cycle ending, it's good to administer what you hope will be the knockout blow rather than waiting.

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!