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Posts posted by CHfather

  1. 1 hour ago, Paula said:

    We live in Hallandale and I am trying to get oxygen but not sure where I should start

    You have a prescription for medical O2 and you're looking for a supplier?  I ask because often a doctor who writes a prescription will have a preferred O2 supplier.

    Or are you without a prescription and looking for welding O2?

  2. This has been discussed in other threads.  I don't think there's a definitive answer, but I think for most people the vaccine wasn't a major trigger.  Since there are several threads, you can see them by typing the word vaccine into the search bar at the top right of the page.  Not sure you'll learn much, except that reactions vary.

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  3. CrystalAnn', you don't say if you are splitting your Imitrex injections.  If not, https://clusterbusters.org/forums/topic/2446-extending-imitrex/


    Since it's allergy season in many places, and allergies seem clearly to induce CH, I would consider Benadryl, 25mg four times a day, or Quercetin, maybe 1-3 grams/day.  https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582

    I don't know anything for certain about this, but maybe it's worth trying: https://clusterbusters.org/forums/topic/5829-does-nasal-decongestant-spray-work-for-you/?tab=comments#comment-73323

    Not sure what the welding O2 issue is, but here's a general file about it: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

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  4. Energy beverages (the 8 oz or larger drinks and the smaller "shots") work because they have a lot of caffeine in them.  Some people credit other ingredients, such as taurine.  I'm not persuaded about that.  So straight strong coffee might work, as it does for some people.  A 5-Hour Energy shot is very potent (about twice as much caffeine as a Red Bull, for example), and you can swill it down fast. Some people say the colder the better. Surprisingly, I'm going to say that 85-90 percent of people can get back to sleep quickly after taking it during the night.

    A non-rebreather mask is fine.  Read the file I linked you to for advice about how to maximize its effectiveness.  The other link I provided is to a different kind of mask made just for people with CH.  Many people say it speeds up their aborts.  (It's not technically a non-rebreather mask.)

    Just to be sure -- you are getting your O2 in cylinders/tanks, not from a concentrator, which is a machine that makes O2 from room air?  Cylinders are much better than a concentrator.  (Again, there's some advice in that linked-to file about being sure your O2 supplier gives you what you need--for example, at least one very big tank and one smaller one for portability.)

    240 mg verapamil might somewhat reduce attacks for some people. It is still a low dose (as is discussed in that file I linked you to).

    I would say that to the extent that Zomig was making things worse for you, it was from overuse headaches, which are not really the same thing as rebound headaches.  If you don't overuse it, it's probably not going to affect your attack rate or the severity of subsequent attacks.  I am not a doctor, and there is lots of speculation about the possible "rebound" effects of triptans, but I think I am right about this.  Again -- with a proper oxygen setup properly used (along with caffeine), and with effective preventives (I think most people here would prefer the D3 regimen over verapamil), you wouldn't be turning to the triptans nearly as much (if at all).

    Cambia is an NSAID.  If it worked for you, that's great.  NSAIDs typically don't work for CH, and I haven't seen any evidence that Cambia does, but maybe I missed it. Cambia is prescribed for migraine.  It's relatively slow-acting, which is okay for migraines since they typically last much longer than a CH attack.  

    My point about Zomig is that you said your doctor had prescribed it "as a preventative measure."  I was just making the point that it doesn't prevent attacks (the way verapamil is supposed to, or the way the D3 regimen does), it only stops an attack that has started. So yes, you take it at the beginning of an attack.  That doesn't mean that if you don't take it in the first couple of minutes it won't help you, so I'm not sure where the specific distinction would be between "the beginning" and "during."  More effective at the beginning, but not completely ineffective during (depending, as you have said, on how far ramped-up "during" turns out to be).


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  5. Welcome, its'.  As we say, sorry you have to be here.

    First things first.

    6 hours ago, itsfatboy said:

    Last year I was prescribed Oxygen but had limited success. This time around I was prescribed a higher flow rate with a non-rebreather mask,

    hoping that makes a difference.  

    It will make a difference.  Sounds like you had a useless system the last time.  What is the current flow rate?  It's rare for a doctor to prescribe more than 15 lpm, but most people find that flows higher than 15 lpm make for better aborts.  Throw down some coffee or an energy shot as you start of the O2, use a good breathing technique, and your life is gonna start changing.  Consider getting the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

    One way in which O2 is going to change things for you is that you won't need a triptan like Zomig nearly as often, because the O2 will stop the attack.  Only an idiot would prescribe Cambia for CH and think it was sufficient.  Only an idiot would take you off Zomig instead of cautioning you to use it less often.  (Zomig is not a preventive. It doesn't prevent attacks. It stops (aborts) attacks that have begun.)  Verapamil is a preventive, but 120 mg/day is useless.  (Could be that they intended to increase it over time, but 120 mg/day is still a low starting place.)

    The ice cube to the roof of the mouth (or sucking ice water through a straw to the roof of the mouth) is something that has been recommended here.  Glad it helps you.  Drinking down an energy shot usually works better and easier, and O2 and a sensible abortive are also going to stop the pain, so very few people have to resort to the ice cube method.

    We're not giant fans of triptans or verapamil here, but they can have their place.  The three things I would suggest you do are (1) Get your O2 going ASAP; (2) Start the Vitamin D3 regimen ASAP; (3) Read this file, which has info about (1) and (2) and maybe some other stuff that might be useful to you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    And (4) Keep asking questions, and (5) Consider busting, at least as something to have in your back pocket for the future. (Busting discussed at the end of the file I just linked you to.)



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  6. I know there are many people here who have been using oxygen for a very long time, who still find that it works fine for them.  As you said, there are people who find that once in a while O2 doesn't work for them (I think that is usually because the O2 level in the tank is too low).  I do know of a couple of older people who have been using O2 for many, many years who have found that other abortives sometimes work more effectively for them, but I don't think they have posted about that here, and I can't say whether they've developed a tolerance for O2 or whether there are other factors involved.  I suspect that maybe you are, as you say, "torturing yourself unnecessarily."

  7. You might already have seen this as you've been reading.  It gives you a sense of the treatment landscape, including basics of busting at the very end:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly.  Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time.  The D3 regimen is a good preventive, but probably won't help you right away.  Busting works for a lot of people.  Strategies like energy shots/drinks can help you now.

    11 hours ago, Bejeeber said:

    Many blame things like imitrex use for worsening their cycles. I don't particularly doubt them, but my CH went ahead and started continually worsening before imitrex was even available in the US.

    Same was true for my daughter, who used no pharma of any kind for the first ten years she had CH.  

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  8. 10 hours ago, glo said:

    I convinced my husband to take the full regime for 2 weeks and when he didn't respond, he gave it all up.  I'm realizing now that I should have done the loading dose (btw...I can't get him to the doc to take labs so we are guessing which I know is not ideal).  

    If I try to get him to take them again, what is the bare minimum of the co-factors along with the higher dose of D3 or is the entire regime necessary.

    Even with the loading, two weeks might very well not be long enough for him to get a significant response. Could be, but not very likely.

  9. marcianin, what did the doctor prescribe to you?

    It might be valuable for you to read this post, which will give you an idea of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    I would suggest starting a new topic in the "Theory and Implementation" section, with the heading "Newly Diagnosed" or something like that.  That's how you'll get the most advice and have it in one place.

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  10. 49 minutes ago, Leo Sticinski said:

    With regards to using the oxygen you may want to bite the bullet and buy an oxygen machine. I would check online for one. It's been worth it to me.

    Leo, do you mean a concentrator (makes O2 out of room air)?  For many people, those are not really fully effective, for two main reasons: the O2 they make is less than 100 pure (there's still some room air in it); and the regulator doesn't go high enough to support fully effective breathing.  I'm glad it works for you, but as I say, they're not really right for everyone. (And I suppose we should consider what "works for you" means--with a fully optimized system, many/most people can abort an attack in ten minutes or even considerably less. If you're getting that result, it's great.  If not, a cylinder-based system might show better results.)

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  11. 9 hours ago, xxx said:

    The accepted naming convention for epidemics and pandemics, that’s been around for over 130 years, names these epidemics and pandemics for their country of origin.  If you’re so extremely offended, are you rewriting history to do away with and renaming the "Russian Flu" Epidemic of 1889,  the 1918-19 “Spanish Flu” Pandemic, the 1957-58 "Asian Flu" Pandemic, the 1968 “Hong Kong Flu” Pandemic, the 1964 “German Measles” Epidemic and the 2015-2016 “Zika Virus” Epidemic.  The “Zika Virus” Epidemic was named by the WHO, as it originated in the Zika forest of Uganda.  Are you doing this because these epidemic and pandemic names are racist and may offend someone? 

    This is not in fact today's "accepted naming convention."  It's what people once did (often inaccurately--the "Spanish Flu," for example, didn't originate in Spain, and "German measles" didn't originate in Germany) or still choose to do.  Today's "accepted naming convention," pursuant to WHO guidelines issued in 2015, is to avoid using place names. This convention is widely accepted. For example, when the US under Trump's leadership tried to refer to the current coronavirus with a Chinese reference in an official G7 communication, the other G7 countries refused to go along.  At least some of your history here is wrong or misleading: "German measles" (rubella) was first identified in the early 1800s and it was so named because it was identified by a German scientist, not because it originated in Germany.  The Zika virus was named in 1948 (not by the WHO) indeed because it was identified in the Zika region, but not necessarily because that was where it originated.  No one really knows where the "Russian flu" originated, only that the first identified outbreak was in a city in the Russian empire.  Whatever the accuracy or inaccuracy of your historical assertions here, it is not a medical or epidemiological protocol today to use place names. When you call it the "Wuhan virus," you are not following contemporary naming protocol, as much as you might be following a historical practice.  Things change. (And it is not "rewriting history" to use different terms for the epidemics you refer to, such as the "1918-1920 influenza pandemic.") 

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  12. There are sites, such as www.goodrx.com, that provide coupons for drugs.  I feel like some people found that the prices for Imitrex using those coupons were actually lower than what they were paying with insurance.  

  13. Just typing Orlando into the search bar at the top right side of any page brings up a whole lot of discussion about getting O2 in that area.  I don't know whether there is real possibility in any of those threads.

    The Boost canisters aren't going to help in any substantial/affordable way. Is there a reason you're not pursuing welding O2?  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/  

  14. Not sure where you are with the fitting.   I haven't checked broadly on this, but they seem to be a standard item carried by hardware outlets.  That version's usually plastic, and might cost a couple of bucks.  It looks like this (ones I have seen have also been grey or greenish-blue).  https://www.shopnebulizer.com/p-salter-labs-nipple-nut-plastic-hose-barb-fitting.html?gclid=Cj0KCQiAs5eCBhCBARIsAEhk4r7tJ_qJlVbD-LYAVblIQDDS1UQmdfwxpfpdHXiWOyF99pUai8qpIFQaAuFpEALw_wcB

    If I was going in to ask, I think I'd ask for a barb fitting for an oxygen regulator.  Or, a thingie you attach to an oxygen regulator so you can attach a tube to it. You could bring your reg and a piece of the hose tube to test it.

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  15. On 2/22/2021 at 6:26 PM, Kluster said:

    has anyone seemingly ever stopped their cycles permanently?

    As I always say when a question like this comes up, this isn't the best place to get a good answer to that question, because people who have permanently stopped their cycles are not the users here.  There are some good answers in the previous replies about the possibility of pretty-much permanent relief if a preventive busting cycle is maintained, and there might be lots of examples among people who came here and didn't come back of even better successes.  There are similar stories of seemingly potentially permanent results from the D3 regimen.  And, considering all the hype among informed people about the new CGRP medications (Emgality, etc.), it seems impossible to me that there aren't some people who are preventing cycles with that approach.

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  16. You didn't whether the indomethacin is working.  If it is, are you confident that you're taking the right dose (could be reduced if it's a higher dose than necessary)?  Are you taking it along with something to protect your gut?

    There are some treatments aside from indomethacin that sometimes help, but not as reliably. I believe that Batch (xxx) has suggested that the Vitamin D regimen can help with some hemicrania conditions. The literature suggests Celebrex, along with many treatments that are used for CH -- verapamil, Topamax, lithium, gabapentin.  There's at least one study in which vagus nerve stimulation helped -- that's what the Gammacore device does. 

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