CHfather
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Posts posted by CHfather
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Thank you for the update, Vipul.
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Tim', there is a pretty long discussion about O2 here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/.
Concentrator isn't good, because there's still room air mixed with the O2 it delivers, and the flow rate on a concentrator is too low.
This video shows you the basics. He is using the fancy mask (the O2ptimask or "ClusterO2 Kit"), but the principle is the same with a standard non-rebreather -- the bag fills and you empty it as you inhale. https://www.youtube.com/watch?v=PtFHRIQN17s&t=617s
In the ER, they probably used a standard oxygen mask, with no bag. That's much less efficient than a non-rebreather. In the first link I gave you, there are some other tips.
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Parsing further, however, "stops the cluster period" doesn't necessarily mean ends the cluster period. It could just mean stops it temporarily, which is not uncommon though maybe even that doesn't happen "often" based on the definition provided.
It just so happens that the very "world's leading CH expert" that I mentioned, Dr. Goadsby, did a double-blind etc. etc. study of the effectiveness of the recommended prednisone taper. You can read about it here. https://www.jwatch.org/na52979/2021/01/05/prednisone-transitional-treatment-episodic-cluster
Having read that, you can explain to me what the heck it means. It mentions some people "achieving attack freedom by 7 days," but not how many, and not whether anyone's cluster period was completely ended. Overall it seems (to me) that maybe most people got significant reductions in attacks but not complete freedom from attacks. Being able to read the whole thing and not just a synopsis would probably help.
And then there's this one, with a few hundred authors, that also says (I think) that pred reduced attacks but says nothing about eliminating them in the short run or fully ending the cycle. https://pubmed.ncbi.nlm.nih.gov/33245858/ Although I see here again, in this discussion of this study (https://www.reliasmedia.com/articles/147514-prednisone-vs-placebo-in-short-term-prevention-of-episodic-cluster-headaches), the unclear statement "After seven days, cluster attacks had ceased in 35% of the prednisone group." -- which of course still fails to meet the provided description of "often," and still doesn't tell us whether that cessation was temporary or cycle-ending.
But I do remember, as others might, a crabby woman who wanted to take pred while she was pregnant and asked whether it would end her cycle. She was told "might stop it temporarily but probably not end it," which was very irritating to her. She mustered the energy just a few days later to tell us we were idiots because it did end her cycle, long before she could possibly have known whether her cycle had ended or not. But I am nonetheless adding her to jon''s instance and declaring that to be often.
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This is what one of the world's leading CH experts recommends regarding steroids: "Corticosteroids in the form of prednisone. 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis." (google [goadsby management of cluster headache] to see the whole document)
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A great list from spiny!
You might find some useful info in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/.
And take a look at the info you get when you click on "New Users - Please Read Here First" in the blue banner at the top of each page.
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Note that if you do get a larger tank, you will also need a different regulator. The smaller tanks, such as Es, use one type, but the larger M and H tanks have a different type. Of course, your supplier should know this, but it would be easy to mistakenly say "I already have a regulator." As you read in that long post, many people find that a higher-flow regulator works better for them, and that's something you'd want to get on your own.
If your prescription was written in the standard way, it will call for something like up to 15 minutes of "oxygen therapy" at 15lpm. Your supplier can quickly calculate how fast you would go through a tank (15 liters per minute for 15 minutes = 225 liters, and an e tank holds about 680 liters, so that's three aborts) (you might actually get more aborts than that, but according to the prescription, that's what you would get), and that might make them more understanding about giving you something that matches the prescription they were given. Seems like it might even be a requirement that they do so. My two experiences talking with a supplier both turned out good once they understood the actual needs of a person with CH, in contrast to the e tank/cannula they are supplying to most of their patients, who are people with COPD conditions.
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At the pharmacy today, I saw a big display for Astepro, which is the first antihistamine nasal spray available without a prescription. I have no idea whether this would be preferable to a pill, for people who are taking antihistamines to supplement @xxx's anti-inflammatory regimen (the "D3 regimen"). It seems that it works faster than a pill, but speed really isn't the primary consideration for people with CH. Also, it's not Benadryl's active ingredient, diphenhydramine, and some concern has been raised about whether other anti-allergy medicines are as effective as diphenhydramine (but some people have said that Claritin worked fine for them in a CH protocol).
Just tossing this out.
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Tim, I just have to ask whether you have done oxygen with a fully optimized system -- O2 from a cylinder, not a machine (not a concentrator); a non-rebreather mask or better yet the mask designed for people with CH (called the "ClusterO2 Kit"); and a flow rate that can be increased to 25 lpm or more (the key here being that you can inhale fully each time without having to wait for the reservoir bag on the mask to refill). So many people have found that they really didn't have an optimized system, and that oxygen that hadn't worked for them without such a system, worked well when they had one).
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The general advice about O2 is to keep inhaling it even after an attack has been aborted, 5 minutes longer, or more. That can help prevent or minimize subsequent attacks.
It's a bit surprising that a sumatriptan tablet is helping you, since many people find that tablets don't work fast enough. Nasal spray or injectable are more effective. You can split the 6mg injections so you get three aborts from them, which reduces the overuse concern and of course makes those expensive injections a little more affordable.
Regarding the verapamil, that's a relatively low dose, and you should be using the immediate release kind, not the extended release kind (can't tell from your message which you are taking). The vitamin D3 regimen is a better and safer preventive than verap. You can read about that, and some other information and tips, in this file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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NY Times, "Taking the Magic Out of Magic Mushrooms" https://www.nytimes.com/2022/07/15/opinion/hallucinations-psychedelics-depression.html
A couple of themes in this story (and nothing about CH), but the one that interested me: "some scientists are working to develop molecules based on psychedelics that provide the therapeutic benefits of the drugs but without the hallucinations."
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Thank you so much for this full and clear information. I'm so happy that your headache situation is so much better now, and I hope you learn all that you need to know from your next phase of testing, without too much unpleasantness.
It seems that naratriptan is an essential part of your preventive protocol. Of course, I find that interesting because we hear so much about triptan overuse headaches.
Wishing you the best as you go forward!!!
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Thank you! Eating smaller meals and drinking more water seems to be helping her, but I will pass along this information, because everything helps.
Because we often have people here whose symptoms look like a form of hemicrania, I wonder if you would say a little more about your situation. Here are my questions, but of course you don't have to answer all (or any) of them. I really hope you are on track for something good to happen, because I know it's been very rough for you.
You mention that you have been taking the Indo for the last couple of months, and it sounds like you still are not sure whether it's PH that you have. Did you start out on a low dosage and then increase it based on your tolerance? What is your current dosage?
How has it affected your attacks?
What will tell you whether or not it's PH that you have?
As I recall, oxygen was somewhat effective for you. I don't remember about triptans. Do your doctors have a diagnostic basis for thinking it's a hemicrania, or is it just that you haven't responded well to all of the conventional CH treatments and they are trying something different?
In addition to taking the Indo with meals (which I imagine is partly a way to protect your stomach from the harshness of Indo), are you also taking something else to protect your stomach?
Have your doctors discussed any of the other things, aside from Indo, that sometimes help with hemicrania, or have you looked into them? One is boswellia serrata, and there is a discussion of others here: https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf One person has said that busting every five days kept her HC under control, and I think the vitamin D3 regimen is supposed to help (but I feel like you tried that).
Thank you for anything you choose to share!
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43 minutes ago, Titan32 said:
I'll be ordering that mask today.
I don't think there's any expedited shipping option for the ClusterO2 Kit mask. Since having the right mask is likely to make a big difference in your abort times (and your cycles have typically been pretty short), I'd urge you to consider getting a basic NRB, like the one at Amazon, ASAP. I see that Walmart lists them at its site, but I don't know whether they have them in stores.
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This is not a non-rebreather mask (NRB). NRB has a "reservoir bag" that fills with O2 until you breathe it in. Yours looks to me like a regular oxygen mask.
NRB:
You can buy an NRB at amazon for under $10. https://www.amazon.com/MEDSOURCE-Adult-Non-Rebreather-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_6?crid=9P5W6TOMN2PM&keywords=non+rebreather+oxygen+masks&qid=1657466467&sprefix=nonrebreather+oxygen+masks+%2Caps%2C90&sr=8-6 And/or presumably you can demand one from your oxygen supplier. The prescription should have specified NRB.
I don't know enough to know how to get the most from the mask you have. You need to plug the holes while inhaling. Put tape on them and remove the mask from your face when you exhale. Since the flow of O2 is constant, you're going to be losing O2 after you have deeply inhaled and held (the standard -- but not only -- breathing practice for CH). This might be a situation where at least temporarily Batch's "redneck" bag would help. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/
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I've got a lot to say to you, Titan, but I think most of it is in here, and I'm urging you to read it with some attention, even though it's long. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ One important thing you will see in there is that you can open up your Imitrex injector and get 3 shots instead of one. Here's a direct link to that info. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Are you in the US? Because here, Imitrex is very expensive and most prescriptions are very limited, and it's hard to see how you'd be using so much. Yes, the theory is that Imitrex is for attacks that are not handled by oxygen -- taking too much of a triptan (Imitrex is sumatriptan) is bad for you and can not only extend your cycle but cause severe rebound attacks (triptan overuse attacks). Given my misgivings about your doctor, I have some fear that your oxygen setup might not be correct. You should have a tank or cylinder, a regulator, and a non-rebreather mask. (Much more detail in the post I linked you to.)
I also want to note, not as a putdown but just for clarification, that there really is not such a thing as a "cluster migraine." Two different things, cluster headaches (CH) and migraines (although some medications, such as Imitrex, work for both). A small number of people have both, and for an even smaller number, a CH attack is always preceded by a migraine attack. If a doctor in the US said you have "cluster migraine," I would be very wary of that doctor. It seems more commonly used in other places, such as the UK (but it's still wrong).
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A small PS. I remember seeing a video about O2 use in which the guy was saying that the way that the Optimask/ClusterO2 Kit is built, when using high flows some O2 tends to leak from the back of the tube that the mask is attached to. As I remember it, he put his palm over that end of the tube while using it. That video is pretty old now, so it could be that that minor flaw has now been corrected.
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I'm gonna wonder whether maybe that built-in regulator might not take a DV. Verging into territory I don't know very well, it's my understanding that a DV requires a particular kind of valve on the regulator (a DISS valve). You would want to be sure you have that. Since a couple of clicks on your photo gives a very close-up view of the tank, maybe @Racer1_NC, or @xxx, or someone else can tell whether you have it.
I was composing a brief discussion of how much O2 a DV actually saves, but in your case I can see that avoiding the fumbling and the waste would be great. Is this the only kind of "industrial" O2 tank you can get in Canada, or just what you wound up with? In the US, tanks can be obtained without a regulator and then you use your own.
15 minutes ago, mitch brown said:So does anyone have info on where to buy
No idea about Canada, but generally in the US you need a prescription to get a DV. Sometimes they are sold on eBay. There seem to be some there now (type oxygen demand valve into the eBay search bar). There have been some people here who have described other ways to get them (type demand valve into the search bar at the top of any page at this site and you'll see them, and you'll also see a lot of potentially useful discussion about DVs).
As you'll see, they're not inexpensive, and so part of the question for me has been whether if just conserving O2 is the goal, what's the cost of any "wasted" O2 vs the cost of the DV (and, potentially, the cost of a reg with a DISS valve). The savings from conserved O2 might not be as much in most cases (not necessarily yours) as buying and another big tank and refilling it a few times.
Any chance that you could set the reg low enough that the bag fills slowly (but fast enough) while you're hyperventilating that you don't have to do the on/off switch? Or maybe xxx's "redneck bag" would be a reasonable solution for you in some circumstances?? https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/
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Thank you all. She is going to try smaller meals and water before/after. She's very diligent about all CH-related things except staying hydrated.
She's currently doing as much of Batch's "Fully Monty" as she can stand. Quercetin makes her very tired, so I think she would only include Benadryl out of complete desperation.
12 hours ago, mitch brown said:are her headaches more active right now than usual?
Tough to answer this, since she doesn't have much of a "usual." Some cycles are very rough, and others not so bad. Used to have summer cycles, but it's been spring and fall for many years, so this cycle in itself is a little weird. For her, cycles usually start out with attacks that occur at erratic times but then settle into a pattern. This one just started about ten days ago.
Again, thank you all.
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My daughter is getting attacks after eating, in addition to regular nighttime attacks. This never has happened to her before. She's very careful about not eating trigger foods. Any experiences or thoughts?????????
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8 hours ago, BoscoPiko said:
I did a little experiment with the sinker seeds and tried to germinate them
You mean the floater seeds, right?
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OMG. So sorry!!!!!! Know our thoughts are with you.
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Wishing you the best.
Please do report, partly because we'd love to hear that you are doing better, and partly because every report makes a big contribution to our knowledge base.
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33 minutes ago, SCiMMiA said:
I guess the only way I will find out is to try everything one by one until something hopefully gives me a relief.
My suggestions . . . .
If you can, I would start with oxygen. If it works, you have a good, side-effect-free way of stopping your bad attacks, and you also have a pretty reliable indicator that what you have is CH. (O2 will sometimes help people with migraine or HC, but usually doesn't.) Sometimes you have to give O2 a couple of tries, but you should be able to tell pretty quickly whether it's helping. You can still use your triptan if O2 doesn't work, and you can request a more effective triptan (injected or nasal) to stop attacks more quickly.
You can also start the D3 regimen, since it isn't contraindicated with other things.
If your doctor is willing to support your discovery process, you could do an Indomethacin test at the same time as O2 and D3. Since Indo is a preventive for HC (and some other "atypical" pain syndromes), it's not going to effect what you learn from using the O2 as an abortive, and its impact should be pretty quick, whereas it usually takes a while for the D3 to get to a high enough level to substantially prevent attacks. If you are going to request Indomethacin, I would suggest reading up on dosage (google Indomethacin and or HC). Some reports say that Indo works within a few days, but (as I remember it), others suggest you need to give it a couple of weeks to be sure, starting with a lower dosage and going up as tolerated. As you might have read, Indo is hard on the guts (for some people), so it is often recommended that it be taken with a med that protects the stomach, such as prevacid or nexium.
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Theoretically, the triptan shouldn't help. But there are some people with HC who do have positive results from triptans.
I don't think that multi-hour attacks are common with HC.
Allergic reaction to Quercetin (with Bromelain)
in General Board
Posted
The only two times in my adult life that I ate pineapple, I got severe tooth abscesses within the next few days (the only dental abscesses of my entire life)! Could have been coincidence, I suppose . . . I haven't tested to find out. I see there seem to be forms of quercetin without bromelian. This one, for example (unless bromelian is hidden in those "other ingredients," but typically it seems that bromelian is treated as a feature to be touted). https://www.lifeextension.com/vitamins-supplements/item02302/bio-quercetin?gclid=Cj0KCQjw_7KXBhCoARIsAPdPTfgzpt537enPe4CYw_HWjcfbXmIl_HfnTOXY3f3u674gC_KSZzB7k9YaAqI-EALw_wcB
Since bromelian helps quercetin to be absorbed, I would imagine that maybe if you take it without bromelian, you have to pay closer attention to dosage.