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CHfather

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Everything posted by CHfather

  1. CHfather

    Episodic CH sufferer - new here

    No problem and no real disagreement, spiny. But people getting welding O2 for the first time don't really have a chance to see how heavy/unwieldy it is for them before they buy tanks, so I think it might be a good idea to go on the lighter side at first. They can always be swapped for a bigger tank next time. I also think a lot depends on how you're going to store and transport them. If they're practically always on a cart, weight is only an issue when putting them into a vehicle and taking them out when getting new ones. I would not much like to get a 90 out of the trunk of a car by myself. "We" (since it's my daughter who has CH, as you know but maybe not everyone reading this knows) now have a pretty good collection of 60s and 40s that do the job.
  2. CHfather

    Episodic CH sufferer - new here

    I like this video, where the instruction begins around 6 minutes in. He uses only the breathing tube from the O2ptimask (now called the "ClusterO2 kit"). https://www.youtube.com/watch?v=eX76JrEvNxE Here's another one, using the mask, where the instruction begins at about 8 minutes 15 seconds in. https://www.youtube.com/watch?v=HrcB-ysGt1s&t=8s Once you have the basics, it's quite straightforward and you'll develop your own best technique. There's plenty of talk about mushrooms here, but it's at the boards that are not open to visitors, such as Share Your Busting Stories and Theory and Implementation. Plus there's a lot of written information in the ClusterBuster Files section, in the numbered files. PM is "private message" (or "personal message," I guess). If you click on someone's name at the top left of his/her post, you can "message" that person separately from posting at the board. (There are other ways to message people, but that's the simplest.) What pharma drugs have you tried? I feel like I remember a post from you where you said you thought verapamil was helping. If injectable sumatriptan (Imitrex) didn't help, I'd start wondering whether it's CH that you have (there are some CH "lookalikes" that don't always respond to triptans, but CH almost always does).
  3. Chuck, it sounds like CH pain, for sure, and the timing is CH-like. I don't think we've seen anyone here say that they have discovered a link between marijuana smoking and CH (and there are more than a few here who use it), but CH experiences are so different that it can't be dismissed. CBD oil, interesting, has been an effective abortive or preventive for many people. In the short run, if you're still getting attacks you could try quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Often that reduces the severity of an attack or at least reduces its severity. Read as much as you can in these pages for other ideas. And of course try to get to a headache center, where you're most likely to find a doctor who can give you a good diagnosis and possibly good prescriptions. Most general practice doctors and even most general neurologists are bad at diagnosing and treating CH. Consider the D3 regimen, which probably will help. Read about it in the ClusterBuster Files section, and look through some of the other files there, too.
  4. CHfather

    Episodic CH sufferer - new here

    Gail, I just posted the following elsewhere here at this board. We have been encouraged to make the disclaimer that using welding O2 is not medically recommended. It's amazing to me that you could abort with a can of Boost. That's great news. >>>Welding O2. The ideal mask is this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You can get a standard non-rebreather mask from amazon. You can also get a regulator there. Recommending a specific regulator used to be simpler, because Harbor Freight had a perfect one that was inexpensive. You want one that has an adapter for a barbed fitting that will hold your mask hose most easily and effectively. CGA 540 is the type that fits all welding O2 tanks. This one at amazon looks like it would work: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1?ie=UTF8&qid=1535222274&sr=8-1&keywords=cga+540+regulator And this one: https://www.amazon.com/Yaetek-Regulator-Cutting-0-200PSI-0-4000PSI/dp/B073P1C18S/ref=sr_1_11?ie=UTF8&qid=1535222716&sr=8-11&keywords=cga+540+regulator I just can't say for sure. A welding supply place will sell you a regulator, but they're typically expensive and don't have the barbed fitting (you can buy an adapter with that fitting at many hardware stores for a few bucks). You probably know your way around a welding business a little! You just buy a tank, or a couple of tanks, and do not mention that they're for medical use. 60 cu ft seems like a pretty good size, particularly if you get a couple of them. The bigger the better, of course, but since you have to bring them in to be "refilled" (replaced, actually, usually) you might not want to be wrangling anything much bigger than a couple of 60s. Maybe you'd also want a 40 cu ft for greater portability (car, etc.). You probably also want a cart, too.<<<< More to you, Gail. If you don't feel comfortable with the buying process because you don't know what questions you might be asked, it seems to a lot of people make up some cover story in case they're asked, like their nephew is coming to town and going to do some welding and asked you to pick up these tanks for him. You don't know nothin' beyond that. I believe you have said that you are nearly as old as me, maybe even a year or two older, so just a warning that it could be that tanks more than 40 cu ft will be kind of heavy to schlepp around. A 40 cu ft tank is about 1100 liters, so at 20 lpm that would be about 55 minutes' worth, and about 75 minutes at 15lpm. You might not need a flow rate that high if the Boost helped you, or you might not need much to abort, but obviously you're not going to get more than at most maybe 6 or 7 aborts/tank, and possibly fewer (particularly since my anecdotal experience, and that of some others, is that for some reason the O2 becomes less effective as more O2 has been used).
  5. CHfather

    Episodic CH sufferer - new here

    Zembrace is 3mg. You can split a 6mg autoinjector and probably get by with 2mg, but the hassle might not be worth it. I think Zembrace is "off label" for CH, and is technically only for migraines, but it's definitely plenty to do the job for people with CH.
  6. CHfather

    Episodic CH sufferer - new here

    'Leah, [Started this before Jon's post . . . Nothing to add, really, but a couple of thoughts.] For some people, the nasal spray is fully effective, so it makes sense to have tried it first. (And in fact there is some evidence that it is less likely to cause rebounds than the injections (I confess to not being a 100% believer that judiciously used injections cause rebounds, but it's probably safer to accept that they do and try to avoid them). At this point, can you contact your doc to say the nasal isn't working and ask for injections? (If you get that, note that you can take apart the autoinjector and self-administer much smaller doses, which will make the effects much more tolerable and save $): https://clusterbusters.org/forums/topic/2446-extending-imitrex/). You can use welding O2 to set up an O2 system if you need to. At least 15% of people with CH do it that way (my guess).
  7. CHfather

    Taurine! WOW!

    I have wondered whether the "oxygen suddenly stops working" occasions happened because tanks were too low. I might have even posted that at one point -- but it started working again with full(er) tanks. I think it's extremely rare for O2 not to work under other circumstances.
  8. CHfather

    Taurine! WOW!

    Well, that's about 80 minutes, so if you were running at 25 lpm it does work out to 2000 liters. But if less than 25 lpm, something's not right. A US "H" tank has more than 7000 liters. Not particularly important -- what you have is what you have -- except for planning purposes. Maybe you saw what I wrote above, that at least for some people, when a tank gets relatively low, the effectiveness of O2 seems to decrease. There's a fellow who has developed what I understand to be a pretty sophisticated tracking app. He posted about it here a couple of times, and he has a fairly active Facebook group called "Cluster headache -- patient driven research." That's why this group was formed. Your best bet is to post about that on a closed board, such as "Share Your Busting Stories."
  9. CHfather

    Taurine! WOW!

    Yeah, M-60 has almost exactly two and half times as much O2. Something my daughter has found (she uses welding O2) is that O2 loses its effectiveness when her tanks are about 2/3 empty. Someone else here said that was also true for them. IF that's true for E tanks, then the actual usable O2 is even less than what I said above.
  10. CHfather

    Imitrex Injections discontinued in Canada?

    I don't see any indication from the internet that that is true. There were trex shortages in Canada earlier this year.
  11. CHfather

    Taurine! WOW!

    An e tank holds roughly 660 liters. At 15 liters per minute, you're going to get 44 minutes from it.
  12. CHfather

    Neuro recommended Clusterbusters

    Regarding the O2, I would recommend that you contact the oxygen supplier in advance and make sure that they understand that he has CH and has specific needs. Specifically -- tanks of oxygen, not a concentrator. I say tanks, plural. At least one very big one (an M or H tank) and one smaller, more potable one (an E tank) for the car or work or whatever. These tanks require different regulators, so you'll need regulators for both. The regulators should go up to at least 15 liters per minute; if you can get 25lpm, go for it. And a NON-REBREATHER mask. Preferably, a mask for each tank. They're cheap. A lot of oxygen suppliers never deal with a CH patient and have no real idea what is needed (some of it might be specified in the prescription the doctor wrote, but most won't be), so you have to check and maybe insist, so they deliver the right things the first time. You should seriously consider ordering the mask that is made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit It will help him abort attacks faster. If the people who deliver it are more than just delivery people, have them set it up and show him the basics of using it. Racer is one of the real O2 experts here (he teaches sessions about using O2 at the ClusterBusters conferences), so he or others might have something to add.
  13. CHfather

    So helpful - thanks CHfather!

    Well, we know that his D level is still very low, so indeed you do have to give it time. The oxygen and trex he was prescribed today will almost surely make such fierce attacks very, very unlikely in the future, and getting his D level up will benefit him in future cycles (if he has them) or in this cycle if it continues for very long. Soon his worst suffering will be a thing of the past. I'm not saying that anyone with CH can or should ever consider himself/herself "lucky," but he got a quick diagnosis, a good doctor, and other good advice, and hope of a treatment (Aimovig) that might eliminate his attacks, all of which is true of only a very small percentage of people with CH (the average time just to get a correct diagnosis is 3-5 years). No consolation when he is suffering and you are suffering, too, but a very good thing.
  14. CHfather

    Think I've Finally Figured It Out...Maybe?

    While no one can say anything definitive given the many forms that CH takes, I haven't heard or read about long (up to five hours) attacks with that fluctuating quality. But I haven't seen or read everything -- far from it. In a sense, your best bet in my opinion (aside from a specialized headache clinic) is to get on CH meds, particularly oxygen, and see if they help. Another approach is to try indomethacin, a medication that usually doesn't help CH but does treat some other conditions like CH. You could do both, oxygen and indomethacin. Easy for me to say, but hard to do without a supportive doctor. You don't know anyone who's an EMT or something who can make an oxygen tank and non-rebreather mask available to you? Or maybe you know someone who welds (or you could set up a welding-O2-based system, which would cost you about 100 dollars for a test).
  15. CHfather

    So helpful - thanks CHfather!

    Thank you. How's your son doing?
  16. CHfather

    Taurine! WOW!

    I don't know about the amount of taurine in various products, but I will say that one small 5-Hour Energy has twice as much caffeine as an 8 ounce Red Bull (and many 8-ounce Monster drinks). Just for quick drinkability, many prefer the smaller "energy shots" to the full-size "energy drinks," and you don't have to drink nearly as much to get a lot of caffeine.
  17. CHfather

    Taurine! WOW!

    Welcome, Oli'. Let us know how the O2 goes. What caffeine/taurine combination did you use? An energy shot? Energy drink? Something else?
  18. CHfather

    Think I've Finally Figured It Out...Maybe?

    Hmmm, your overall headache pattern isn't CH-like -- two or three a month. Usually CH attacks are an every-day thing. For people with episodic CH, that usually happens over some time period, maybe 6-8 weeks, starting at regular times of the year, with one or more attacks pretty much every day. This is a very big generalization, but they are called "cluster headaches" because for people who are episodic they "cluster" during certain time periods. And the cigarette smell isn't something I've ever heard of. All that plus the duration of some of your attacks and the up-and-down nature of the pain during an attack make me wonder. Any chance of getting to a headache clinic? I see there are some places that at least call themselves that in Spokane, and surely there are some in Seattle.
  19. CHfather

    Think I've Finally Figured It Out...Maybe?

    Bonds, it does sound a lot like CH. Very sorry for all you're enduring. The only aspect I would say is not classic CH is the multi-hour attacks of fluctuating intensity -- but maybe some others experience that. Not everyone with CH vomits, but many do. Does your eye get red, teary, or droopy? Runny or congested nose? Those are other standard symptoms. Do you have periods of time (weeks or months) when you have attacks, and then periods when you have no attacks? It's possible that you have a CH "lookalike" condition such as hemicrania continua -- but the regular nighttime appearance of your attacks suggests CH to me. If you have CH, topiramate is not the first best medication. Are you able to go back to your doctor with more information and a request for different meds (verapamil, oxygen, and a nasal or injectable triptan would be the typical first-line pharma approaches). In the meantime, some things to try: Quickly drinking a cold energy shot (such as 5-Hour Energy) at the first sign of an attack; standing with your feet in very hot water during an attack; drinking ice water through a straw onto the roof of your mouth at the beginning of an attack (trying to create "brain freeze"); inhaling cold air from an air conditioner. None of these are perfect or completely reliable, but some sometimes help. Also, you could start the D3 regimen. Read about it in the ClusterBuster Files section of this board and also here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
  20. CHfather

    Episodic to chronic

    'mandy, Yes, that is the mask. Verapamil at fairly low doses (less than 360mg/day) doesn't seem to block the effects of busting, or at least not to block them fully. I think we just don't know about the effects of doses higher than that. Getting back on D3 will almost certainly help him, as Racer said. Gotta take the whole regimen, as I'm sure you know. There might be an effective pharmaceutical treatment available soon. Erenumab (sold as Aimovig) has shown itself to be quite effective against migraine, and studies have shown that it should also work against CH. It's available now for migraine. The long-term effects haven't really been studied at all. For now, it seems like D3 is a better alternative.
  21. CHfather

    Episodic to chronic

    'mandy, I'm sorry for your husband's situation, and I know it's very rough on you, too. Let's start with O2. I take it he's not using it at all right now, because he can't get tanks affordably. Not sure exactly what that means, but many people find that welding oxygen is easy to obtain and less expensive over the long run than medical O2. Can tell you more about that if you want. You say he has the correct mask: Do you mean the "Optimask" or "ClusterO2 Kit" that is made specifically for CH, or do you mean he has a standard non-rebreather mask? I'm going to say that 90-plus percent of people who use oxygen in the most effective way get excellent aborts -- flow rate of at least 25lpm; special mask; tanks (not a concentrator); effective breathing technique; and quickly drinking an energy shot at the start of the attack. If he wasn't doing it all that way, he should try again. We can walk you through it. (I'm going to guess that it might be hard to get him to try O2 again -- It's a perfectly reasonable but sometimes frustrating thing about people with CH: they just don't want to get their hopes up again and then be disappointed.) I can't comment on that effect of the Trex injection, but do you/he know that the injections can be split so each one is a smaller dose? Most autoinjectors deliver 6mg; but virtually no one needs more than 2mg, or 3mg max, to stop an attack. A lot less expensive, too. Here's a file. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Note also that many people are getting sumatriptan in vials with syringes so they can administer their own doses. His doctor was almost certainly wrong about his D level being too high. Strongly urge you to directly contact Batch (who developed the D3 regimen, and who will be happy to help you -- do not hesitate to reach out to him). Send him a message from here: https://clusterbusters.org/forums/profile/17422-batch/ Shrooms have to be taken every five days, usually at least three times and generally more for people with chronic CH. Triptans block the effectiveness of shrooms, so he can't use the Trex while busting with MM.
  22. There is a tendency among people with CH to feel that an attack is probably coming on but to hope it isn't, and to wait and see. Many have learned to drink that caffeine as soon as they have the first sense of an oncoming attack. Might result in sometimes drinking it when it's not needed, but will also give a quicker abort if it is. For many people, the first sign isn't even pain, it's just a "something's wrong" feeling that they have learned to associate with CH. Please do post your other questions at "Share …."
  23. It's not likely that the verapamil is working. Usually it's a couple of weeks before there's enough in your system to have an effect. Possible, just not likely. More likely that your cycle is ending. I wouldn't go so far as to call your doctor a quack. He prescribed the right basic stuff -- verap and a triptan -- and even that is a lot more unusual than it ought to be. Not prescribing O2 first does push him toward some unfavorable category, though. The effects of triptans on subsequent attacks and cycle length has been studied with different results. Sometimes using MM produces what are called "slapbacks" -- bad or more frequent attacks after doses. It's almost certainly not going to re-start a cycle that's ended, but you might not want to expose yourself to slapbacks unnecessarily. Just my two cents.
  24. It really is crazy-making. I think for Jon as for me that's not just an expression -- I have this momentary combination of rage, frustration, and bewilderment that feels literally crazy. And the thought that this son of a bitch has "many CH patients" that he's torturing for no fing reason at all . . . Crazy, crazy, crazy, crazy. Beyond that, Javan, first of all good on you for taking assertive responsibility for your treatment! You can almost certainly split your Imitrex injections if you decide to get them. They typically come in an auto-injector that shoots 6mg into you, but most people need only 2mg or at most 3mg. Here's a file about breaking open the injector so you can manage your own injections, but there might be newer types of injectors now that are harder to break open. Check youtube. Here's the file: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I'd take a hundred-dollar bet that the doctor isn't going to "research" MM at all, or if he does, the results of his "research" will be negative. In any event, he can't advise you about MM, and I think he's not even allowed to know you're using it. Meanwhile Yale Medical School is doing a clinical study of the effectiveness of psilocybin on CH.
  25. CHfather

    Aimovig, new CGRP inhibitor

    Thank you, thank you, thank you.
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