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CHfather

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Everything posted by CHfather

  1. CHfather

    Episodic CH sufferer - new here

    gail', the box below the most recent post should say "Reply to this topic" in it. Just click in the box and you will be replying. Click on the link at the end of this sentence to get the ClusterO2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit The Theory and Implementation board is accessed from the Home page. You will see the word "Home" at the top left of every page, just under the menu items that begin with Forums. You can only see and access the Theory and Implementation board if you are signed in as a member, because that board is only open to members. Notice also that each time you create a post, you will see at the bottom of the page something that says "Notify me of replies." Since you are posting in many places, that might be helpful for you. Your best bet is to start a new topic at either Share Your Busting Stories or Theory and Implementation (I think FunTimes mentioned how to do this) and then your primary conversations can be kept in the same "thread" and will be easier for you to find.
  2. CHfather

    5-MeO-DALT expiry date?

    I'd be a little surprised if anyone here has an answer to your DALT shelf life question. Not a lot of DALT users here. I'd suggest that you might get a quicker answer by sending a private message to dlnmerced, who is a member here but hasn't posted much lately. If you click on the envelope icon, and start typing dln in the "To" box, I think it will autofill with the rest. Alternatively, the Facebook group where DALT was most strongly popularized will probably have a fast and reliable answer for you. (It's a closed group, so if you're not a member you'll have to ask and then wait to be accepted. I think that's a fairly quick process.) The group is called "Cluster headaches (trigeminal autonomic cephalagia)" Hopefully I'm wrong and someone here can answer you.
  3. We've had some discussions here in the past few days about what size industrial O2 tanks to get. You'll probably want at least two -- the largest one you can handle for home use, and a smaller one, maybe 60 cu ft or even 40 cu ft, for portability. spiny recommends 90 cu ft for the home one and 60 for the portable one, and Dallas Denny has had his home tank much bigger than that. As I say, the bigger you can handle the better, since it'll keep you from having to lug it back to get it refilled. Same is true for the portable one, but in a lower range. Ideally, you'd want a regulator and a mask for each. You can roughly figure out how long a tank will last by converting cu ft to liters and dividing by a number, which I'll call 20 here, which would be the flow rate you'd be using (of course, industrial O2 regulators don't have flow rate settings as medical regulators do, so you'd just be guessing, but an effective flow rate (the rate that makes sure the bag is full each time you're ready to inhale) is typically between 15 and 25. YMMV, of course.) So, a 60 cu ft tank is about 1700 liters (you can get this info by typing into google [60 cu ft = liters]). Divided by 20 liters per minute, that means you'd get roughly 85 minutes of use from it. (I will note here again that I and some others have observed that O2 treatment for CH seems to become less effective as the tank pressure (the amount left in the tank) goes down; but I'm not sure that everyone would agree with that. The last third of the tank is almost useless for my daughter (she's the one who has CH).) Note also that standard industrial regulators do not have the barbed fitting that a mask is most easily attached to. You can kluge that, or you can buy a plastic adapter for a few bucks at many hardware stores or online, or you look for a regulator that comes with an adapter with the barbed fitting. A regulator you buy at an industrial supply store will probably be considerably more expensive than one you buy online, and it might not have that barbed thingie.
  4. Good for you for working on this, but I suspect this particular thing that you have posted won't work. Any chance you can post a link to the ad? I could be wrong about all this, and someone more knowledgeable will correct me. If they're medical bottles/cylinders, you still can't get them filled without a prescription. If they're welding ones, you might or might not be able to get them filled, depending on the policies of your local welding O2 supplier(s). They might be SCUBA "oxygen" tanks, which I'm pretty certain won't work at all, for a variety of reasons. I can only guess that they're empty and quite small, at that price. You'll need both a regulator and a mask. The best mask is here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit A standard non-rebreather mask, which will be around $5 at amazon, will work, but not as well. When you get to buying a regulator, we can recommend some.
  5. CHfather

    oxygen supplier issues

    rowdy', This is the only part of your question that I know anything about. If you have the regulator for larger tanks (a CGA 540 regulator), it will fit on any industrial (welding) oxygen tank, and of course your mask will still connect fine to your regulator. Smaller medical tanks use a regulator (CGA 870) that won't fit on any industrial tank. I don't know how to insert images here, so this is a link to what a CGA 540 medical oxygen regulator looks like: https://www.amazon.com/CGA-540-Style-Oxygen-Regulator/dp/B006GERK0M in contrast to the CGA 870: https://www.amazon.com/Medline-HCS8715M-Oxygen-Regulator-Connection/dp/B00KG8DNKU/ref=sr_1_fkmr0_3?s=industrial&ie=UTF8&qid=1535422718&sr=1-3-fkmr0&keywords=cga+860+oxygen+regulator
  6. 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.
  7. 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).
  8. 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.
  9. 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).
  10. 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.
  11. 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).
  12. 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.
  13. 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."
  14. 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.
  15. 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.
  16. CHfather

    Taurine! WOW!

    An e tank holds roughly 660 liters. At 15 liters per minute, you're going to get 44 minutes from it.
  17. 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.
  18. 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.
  19. 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).
  20. CHfather

    So helpful - thanks CHfather!

    Thank you. How's your son doing?
  21. 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.
  22. 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?
  23. 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.
  24. 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
  25. 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.
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