CHfather

Jeff', Glad you got the oxygen, and that it's helping! Just to be clear for anyone else reading this, if you go to a welding supply store and ask for medical oxygen, or ask for tanks using medical-oxygen terminology (an "M" tank, on an "E" tank, for example), they are going to send you away. If you go to a welding supply store and purchase oxygen for "welding," there is zero reason for them to turn you away or to ask any questions about why you want it. Also -- I am 99% certain that your doctor is misguided. Some extreme pulmonary conditions might be contraindicated, but beyond that, the general literature shows no contraindications for sensible oxygen use. Since I am not a doctor -- but I am very accustomed to doctors spouting nonsense about CH treatments, particularly oxygen -- I suppose no one should take my word for this -- but no one should be deterred from pursuing oxygen, either. Sorry if I sound cranky. Doctors, who should be the gateway to oxygen, are instead the primary obstacle to getting it, and that just burns me up.

The ER won't help him. If they know what they're doing -- which is unlikely -- they'll give him O2 ot a sumatriptan injection. Otherwise, they are just likely to shoot him up with opioids or other crap that won't help. Yes, he has to take everything on the D3 regimen. What does that mean, "We are going to try some blood pressure pills"? Verapamil, a blood pressure med, is a first-line preventive for CH. Of course, he has to do it daily, under a doctor's supervision. I don't know whether other types of BP meds -- verapamil is a calcium channel blocker -- will work. But verap is not an abortive, it's a preventive, and its effectiveness has nothing to do with his BP going up when he has an attack. I'm kind of mystified. Maybe we've discussed this, but does he have no pharmaceutical meds for his CH? No imitrex, no verapamil . . . lots of other things that might have been prescribed. If not, why in the heck not? And please please please get him the O2!!!!

Can't answer your actual questions, but some things that might help: Batch, the developer of the D3 regimen, has found that during times when pollen counts are high, the D3 will stop working. He says to take 2-3 doses of Benadryl per day, at the standard dosage. Says it got him back to pain-free. Are you splitting your trex doses? Still works, less side effects: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Are you trying caffeine -- energy shot, energy drink, or even strong coffee -- at the first sign of an attack?

You might want to consider printing out this major journal article about oxygen and bringing it with you. http://jama.ama-assn.org/content/302/22/2451.full I can't answer your $ question about O2, but insurance should cover most of the cost of your oxygen, unless you're on Medicare or Medicaid, which do not cover oxygen. I think maybe the VA system also refuses to cover it -- and sometimes people have to fight with their insurance companies to get reimbursement for O2, even if it is covered.

Stay on the O2 for a while after the attack has been aborted, to help prevent later attacks. What's "a while"? You could say 5-10 minutes. We used to say as long as it took to abort the attack. So, you get the idea -- some period that's not brief.

Find a welding supply store near you (use google). Go in and ask for a 60 cubic foot oxygen cylinder. (That's fairly small, but it will get him started and treat several attacks. The larger sizes are hard to lug around, but you could go up to 80 cubic feet or more, or get two 60s, or just start with the one 60 and see how it works out. What you get depends in part on how much of a hassle it is for you to get to a welding supply store for refills.) Do not mention that you want it for medical use. You want it for welding. If you're uncomfortable doing this yourself, maybe you have a more knowledgeable friend who would accompany you, or you can make up a story of some sort, in case they ask, that explains that you are getting this for someone else, you don't know anything about welding, so you're just buying what he told you to get. It's actually pretty unlikely that you'll be asked any questions unless they just feel like chatting with you -- you're just another customer to them and their job is to sell you what you want. At some places, you can buy or rent. I would suggest that buying is more straightforward. There's paperwork associated with renting. It won't be inexpensive to buy -- several hundred dollars, at least. If things don't work out for some reason at the first place you go to (though there's no reason they shouldn't), go to another place. You're not a criminal; you're saving your father's life. I've been told that Tractor Supply, which is a national chain, has tanks. Maybe check the store locator there: http://www.tractorsupply.com/?cm_sp=Header_Nav-_-Links-_-Logo NOTE THAT you want a cylinder/tank that is full. Some places also sell them empty. Ones I've bought at welding supply stores have always been full. You can just ask, after you've bought it, "Do I need to fill this or is already filled?" You will also want (but not completely need) a cart with wheels for the cylinders, or at least a stand to hold them. If getting this makes you uncomfortable, you can skip it for now. I'm going to make this next part simple -- there are other ways to do it. At amazon.com, buy this regulator -- https://www.amazon.com/IMAGE%C2%AE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_4?s=hi&ie=UTF8&qid=1466033168&sr=1-4&keywords=welding+regulator-- and this mask -- https://www.amazon.com/Medsource-Adult-Non-Rebreather-Oxygen-Mask/dp/B00BBFQ64M/ref=sr_1_3_s_it?s=hpc&ie=UTF8&qid=1466033238&sr=1-3&keywords=nonrebreather+mask. Use whatever quick delivery options there are that will get these to you at the same time as you get the O2 tank(s). Both of these items are eligible for Prime fast shipping, if you are a Prime member.

[Wrote this before your post above. Some is still relevant.] Niles, I can't really answer many of your questions. 4-5 hours is an unusually long CH attack -- but I can't say it's unheard of. SEE BELOW. Yes, there are people who have some symptoms of CH and some of migraine, or who have both. The lingering dull pain is pretty common (referred to often as "shadows"). Usually it's the amount of caffeine in an energy drink or shot that makes some more or less effective. 5-Hour Energy has more caffeine than RedBull, and the shots are easier to get down. There are many Monster drinks -- some are loaded with caffeine, such as Monster Hitman Sniper, which has 240mg of caffeine in contrast to something like 100mg in a 5-Hour. You could take a look and see how many calories your Monster has. BUT MAINLY, you need other tools. Oxygen, sumatriptan, verapamil, BUSTING, D3 . . . . I don't think you'd have 4 or 5 hour attacks if you had a better arsenal, pharmaceutical and non-pharmaceutical. Read around, particularly in the ClusterBuster Files section of this board.

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.