CHfather
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Posts posted by CHfather
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Crazy. There has been (as you mention) a lot of Covid-related rationing.
You should probably look into welding O2, no? Could be that those prices haven't increased (or increased as much).
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I would guess that 40 is plenty -- but wiser folks will give you a more definitive answer. (I could see the 40 at the Allied Healthcare site but not the 160.)
Will you do us/me the favor of letting us know how your purchase goes? Do you have a DV prescription, or are you buying it without one?
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Shaun', if you type Gamma into the search box at the top of any page, you'll see some reported results. As I recall, a couple of people reported having success with it. In the US, it is very expensive, $600 or so every month. Maybe with your NHS it's not so steep. (As I recall, it was far less effective, or plain ineffective, for people with chronic CH. I have also never understood what the appeal would be except for (1) people for whom oxygen doesn't work, since the abort time in the trials was longer than what most/many people can get with an optimized O2 system; and (2) for its portability, which is not an insignificant benefit if it works and the cost isn't prohibitive.) I guess some people have been told that regular use has preventive benefits, and not just abortive. I don't remember if we found out how that worked out.
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Has anyone been able to deliberately change the times that their attacks occur during a cycle? For example, if they're coming regularly at 3:00am, if you're able to change your sleep/wake cycle (or something else), might they start coming at a different time?
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5 hours ago, Kimbers said:
So far he’s been gone 3 hours and has already given himself an injection and is driving everyone crazy…honestly, I think it’s pure anxiety because this is the first time he’s left the house to go anywhere except the drs. in almost 3 months. I keep telling him he’s got to learn how to manage and live with these headaches in the outside world because he can’t hide out forever, he’s got to go back to work at some point!
1. I don't see this mentioned as I glance through the advice you've received (it is mentioned in the long file I linked you to, but you might not have reached it). It will benefit him greatly not to take a full shot of Imitrex (if it's a 6mg injector). This shows how to split those doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/
2. I think it's fair to say that the only way for him to reduce the anxiety is to get the CH under control. And even then, there are lots of people who are very anxious during a cycle -- and even when they're not having headaches (particularly as the predicted time for a cycle to start is coming closer). They don't call CH "the Beast" for no reason: It's terrifying, ferocious, and unpredictable, and I don't think anyone ever forgets how hellish an attack can be, even when they have them more under control.
5 hours ago, Kimbers said:so he’ll start that [verapamil] on Sunday when he gets back along with the full D3 loading protocol!
First, a functional note: He should take the calcium part of the D3 regimen about 8 hours from when he takes the verapamil. Can you tell us what the verap prescription is -- dosage and whether it's extended release (ER) or immediate release?
One thing that sometimes happens is that people with CH start some kind of treatment that they are told will help them, and then it doesn't help. That not only adds to the anxiety, it can also make them resistant to trying other things because they can't stand getting their hopes up and then being disappointed. I am generalizing here -- people are people -- but with his current anxiety and resistance, these might be issues. The verap is not going to help right away, and neither is the D3 (probably not going to help right away -- you never know). Usually verap is prescribed at a low dosage to make sure it doesn't have side effects, and the dosage is slowly increased. The D3 only takes full effect when there's enough of it in the system, though I think it has been shown that some benefits can happen pretty soon. So, a caution about anyone having unrealistic expectations about a quick fix. When the D3 regimen was first introduced, there was a whole lot of scoffing about it. But over time, it has shown itself to be very, very effective for a very large percentage of those who do it right. That's the basket I think you can safely put the eggs in -- if he sticks with it. If he has issues with it, or if he wants to reach out to someone, the popularizer of the D3 regimen, Batch (whose handle here is xxx), is amazingly generous with his time. Send him a PM and he will respond. He has helped a lot of people to do some tweaks that have shifted things for them.
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37 minutes ago, DANIG said:
I of course have a prescription for o2
I think a demand valve would have to be specified in the prescription. Usually (at least in the US) doctors don't include that. If it is included in yours, then I have no idea why you are getting resistance in Israel, though I can imagine that an overseas prescription might not be honored in the US. For that eBay one, you don't need a prescription.
I should say again that I might be wrong about needing a prescription in the US (or anywhere). I am confused as heck about that. If you look under "demand valve" in the search bar at the top right of each page, you might find more information that will be helpful to you.
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29 minutes ago, DANIG said:
So please, if anyone knows of a way to get this specific demand valve, no matter the connector type
In general, a prescription is needed to get a demand valve in the US. People here have said they have found ways around that requirement, but I don't know how.
Many get them from eBay, where questions are not asked. I have no idea about possible shipping issues, but this one -- not the specific one you are asking about -- is available. Looks like it doesn't come with a hose, and maybe you have to press that blue button to release the O2. Just a thought. https://www.ebay.com/itm/192499863285?hash=item2cd1e2cef5:g:RhwAAOSwTDpcABu~
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What a great job you are doing, Kimbers!! And now, with so many members of the ClusterBusters all-star team joining you as they have (and maybe more to come!), and what seems like a very solid medical team (although I'm puzzled about why verap wasn't started at the same time as the pred), your husband is getting plenty of support. I have little bits and pieces of possible additional info, but it's all in this file, so I'll let you look through it: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
(I feel pretty sure that this is already clear to you, but just in case, the blue underlined things in Jeebs's posts are links to files, so just click on them. (I missed it the first couple of times, but then, I'm 100 years old.))
(Getting on O2 early in an attack is essential . . . and it is also true that sometimes first uses of O2 are not very effective for people with CH, but they become more effective quickly. In part, this seems to be some kind of natural phenomenon that affects some people more than others, and in part it's a matter of developing the most effective personalized breathing strategy and related practices, such as the caffeine/energy shots that have been mentioned.)
As a supporter myself, I know what hell it can be to see someone you love suffering so severely. He's blessed to have you, and as others have said, the suffering is going to be very dramatically reduced by doing the core things he is already doing or starting to do, and perhaps adding some others, such as busting.
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There once was a recommended doctor list, including Canada. It was pretty old, but I thought better than nothing. Does anyone know if it's gone now?
Needless to say, I hope you get some good, direct advice here. You might also try some of the Facebook groups devoted to CH, just to expand the possibilities. One that was founded by some former members here is called "Cluster headaches (trigeminal autonomic cephalalgia)," but there are more (I've heard some harsh things about the advice offered at some of the other ones, but you're just looking for doctor).
It's very nice that you got relief from a concentrator and 7 lpm, but a capable doctor should be prescribing O2 from tanks at at least 15 lpm, with a non-rebreather mask. Your results are almost certain to be better with a configuration like that.
Do you know about using welding oxygen? You can get it without a prescription (I think this is also true in Canada). I think I remember that some time back, someone (@Dallas Denny ??) posted something about welding O2 in Canada, but I can't find it from a somewhat superficial search.
Toward the end of this post there's a section called "Treatments without O2..." Maybe something there might help you in the short run. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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FWIW, two relatively recent posters from somewhat nearby countries have been Milelli from Germany and Siegfried from Belgium. Siegfried actually has a hemicrania, not CH, but he has done a lot of CH investigation.
7 hours ago, Dallas Denny said:I don't recall seeing any posts on the forum from Swiss clusterheads over the past 10+ years.
Denny, is the Facebook group more international?
As I remember, there is (or recently was) an LSD study in Basel. I don't remember whether it was specifically for CH, or perhaps for something else, like anxiety.
(If there was a selection here to rate this post as "almost completely unhelpful despite good intentions," it could get overwhelming support, I think.)
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My daughter got an M tank and good service from a DC-area Lincare office. I don't remember which one. It was quite a few years ago now, and we had to educate the office manager and respiratory therapist about CH (at first they had provided an e-tank and cannula), so I can't say for sure (even if I knew which office) that you would still get that kind of responsiveness.
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On the other hand . . . . this is from a 2010 study sponsored by ClusterBusters that collected data from more than 1100 people with CH. (Rozen and Fishman, "Cluster Headache in the United States of America.") The authors wrote, "The circadian periodicity of cluster headache is present but is not as common in the population as previously thought."
"Months of the year that cluster headache cycles would start.
In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin. By percentages, the months of October (26%), September (21%), April (21%), March (20%), and November (20%) were the most likely for cluster headache sufferers to start a cycle. The remainder of the months of the year were evenly distributed with 11-13% stating their headaches cycles would start during these particular months. The lowest percentage was noted for the month of June at 10%."
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1 hour ago, SpidaH said:
If I am understanding this correctly--- some ECH sufferers have taken verap, stayed on it for extended periods, even off cycle, and when attempting to go off verapamil, get hit with a new cycle, or even turn chronic?
The key word there is "some," and the key issue is causality.
Just as is the case with verapamil, more than a few people who have been here have speculated that triptans messed up their cycles or caused them to become chronic. My daughter who has CH has never used verapamil and didn't use a triptan for the first seven years she had CH. In fact, she had no meds, not even oxygen, during that time. Rode out her attacks. Her cycles nonetheless became more frequent, less predictable, and worse (though she isn't chronic).
I'm not saying that anybody is wrong about causality issues, because nobody knows, but I am saying that tens of thousands of people with CH use triptans and take verap, and they ain't all turning chronic. Whether triptans and/or verap are messing with their cycles, I don't know, but as I said above, for many people things change no matter what they do or don't do. And lots of people stop verap after their cycles without reporting significant effects. Some people take extended release verap and think it's great, others (most others, I think) find that the ER doesn't work very well for them but the immediate release does.
As intelligent humans, we're always looking for causality. Is the weather making a cycle worse or bringing one on? Stress? Eating the wrong things? Taking some other med? Probably yes for some of those things for some people and no for others. CH is a crazy monster, and all people are different.
If you get your D levels up, verap is likely to become irrelevant to you -- if you're like most people.
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If anything has been missed in all the great responses you have received from these members of the starting lineup of the CB all-star team, it might be covered in here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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Others have reported that "rationing" of O2 has been an issue (see, e.g., the seventh post in this thread and the last one -- https://clusterbusters.org/forums/topic/7969-o2-supplier-in-lasocal/?tab=comments#comment-74750).
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As Racer said, CH meds, including verapamil, can become less effective over time. Your 240/day verap is essentially the minimum dose, and IR is strongly recommended instead of ER. Yes, you got results from the 240 ER in the past, but IR at a higher level might be needed this time.
In glancing through this thread, I'm not seeing -- or I probably am missing -- mentions of the vitamin D3 regimen, which is a better, and better-for-you, preventive than verap.
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14 minutes ago, jon019 said:
a writer or somethin'...
A paraphraser.
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Thank you. Not confusing at all, I don't think, and vey helpful to me.
My understanding:
Benefits of demand valve: (1) It resolves the issue of waiting for the bag to fill (other things will do that, too, such as a reg with the necessary lpm, but DV does it brilliantly); (2) no waiting, no fiddling: It's there, it does what you need when you need it without you having to think about it or play with dials, which is a particularly big benefit for quickly addressing nighttime hits or in other circumstances (e.g., in the car); (3) it can save some O2 in some circumstances. I would add what I mentioned before -- that at least for my daughter, there are psychological advantages from having no bag and having the "ideal" delivery system, and any psychological benefit in this situation is not insignificant.
Disadvantage: Cost. Similar or equal abort times can be achieved with a reg that will cost far less, as long as that reg has sufficient lpm to be sure the bag is always full for the next inhale -- recognizing that a reg is imperfect compared to the DV when it comes to the "no waiting, no fiddling" and possible other less tangible psychological benefits.
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Racer..... You know this stuff as well as anyone. How much of an improvement would you say a demand valve is over a high-flow regulator with the "Optimask" (ClusterO2 kit)? My daughter (the person with CH in my family, for those who don't already know that) loves her demand-valve-type system (she has to push a button to get the O2, but it's there on demand), in part because it takes some of the "drama" out of the bag filling and then being emptied. Making an O2 abort as simple as possible has psychological benefits as well as possible practical ones. So I have nothing bad to say about demand valves if a person can get one/afford one. But just in practical terms, and insofar as this can be determined given all the variables, I don't think she gets faster or better aborts than she was getting with a welding reg and the Optimask. Curious about your view/experience (and others') about this.
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eBay is a frequent source. Not always there, but sometimes. We got ours there. It's a very nice thing to have, but . . . I'll be darned if I can see how demand valve conserves any significant amount of O2. We've had this discussion and I've been outvoted, but I still don't see it.
2 hours ago, BoscoPiko said:I don't like to use Amazon much but I was able to buy one on there for about $30.00 bucks that goes up to 25.
I've never seen demand valves for sale at amazon. Are you sure that's what you got? Do you have a link in your "My orders" section? I have to admit, here again, that I have always understood that medical demand valve systems could not be obtained in the US without a prescription, unless at a "black market" site like eBay. Happy to be shown to be wrong about all of this.
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2 hours ago, BoscoPiko said:
I sure do wish I could find one that actually suffered from CH themselves… That I think would really be something…
Dr. Lee Kudrow, who had CH, founded the first private headache center in the western US and in 1981 he published the first substantial research on oxygen for CH. I think he might have been the first to consider O2 as a treatment, but I'm not sure about that. He was the first to recognize medication overuse headaches. His son, David, runs that clinic now (somewhere in California, but I'm not sure where). His daughter is the actor Lisa Kudrow.
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I think your reading will clarify some things, so just briefly . . . . You should be using the M tank (with a reasonable regulator), not the concentrator. Did your provider not even supply a basic mask to use with the M tank? Your supplier should also be able to provide you with a regulator that goes to at least 15lpm. A typical sensible doctor's prescription calls for up to 15 lpm (and a typical sensible doctor's prescription also calls for a nonrebreather mask). You probably will do better by buying your own regulator, so you get a higher lpm than 15 and you pay less overall, since you are "renting" the regulator from the supplier. You can get a much smaller tank for portability. You will read about that. The smaller tank requires a different regulator than the M tank. Oxygen is always a necessity for CH, and attacks can become a bit more intractable over time, so even though your current system is working okay, you want to be sure your system is optimized.
It's hard to imagine that those Boost canisters will help you. 10 liters is about one minute of treatment.
BTW, the prednisone taper you are on is pretty long. Three weeks, with four days at 60mg, is a more standard prescription. Not a huge deal, but you don't really want to be using more pred than necessary.
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It is often suggested here to stay on the oxygen for a while (5-10 minutes) after you have stopped an attack, because that seems to help hold off subsequent attacks.
You are stopping attacks with 10lpm from a concentrator, using cannula???? You're gonna be thrilled at how much faster it can happen if you have even more correct equipment (in addition to the mask you have ordered). Is there a way that you can get cylinders/tanks from your O2 provider instead of the concentrator? Concentrator O2 has more room air in it than is ideal, and with a cylinder you can use a higher-lpm regulator. Cylinders also address your portability question, since the smaller cylinders are highly portable. There's a fairly thorough discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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22 hours ago, TripleToe said:
I suppose it could also be the situation that I'm just having a session of migraines vs true CHs. Not sure how they differ to be honest.
One simple way that they differ is that while people with migraine can generally go lay down in some helpful situation (dark, quiet room, damp cloth on forehead, etc.), people with to CH are too agitated to do that (and it doesn't help the pain). Agitation -- pacing, rocking, etc. -- is a clinical sign of CH. This is pretty generally true, even in milder versions of CH. Since you say that in some situations it your attacks can last for a while, maybe you have experience. At the most basic level, medical preventives and abortives for CH and migraine are the same, so it might not matter all that much. O2, however, is generally not effective for migraine. The D3 regimen is a preventive that helps with both.
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High Oxygen Cost $100/tank refill???
in General Board
Posted · Edited by CHfather
Some of this might be useful -- though you seem to know what you're doing and you're getting advice from the pros! https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/