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Posts posted by CHfather

  1. 6 hours ago, gegibsonjr said:

    I've been prescribed prednisone for other issues and unfortunately it hasn't had any affect on the attacks.

    I would only mention that misprescribing related to CH is very common -- verapamil usually too low to be very helpful; Imitrex much more than people need while triptan pills are almost always too little . . . .   Your prednisone prescription (which I understand wasn't actually for CH) might not have been enough for CH.  Some people do get relief from a standard pred "dosepak," but the recommendation from CH experts is more like 21 days with four days at the highest level (typically 60 mg).  

    • Like 2
  2. 1 hour ago, gegibsonjr said:

    stopped taking triptans several years ago as they became very ineffective, i would definitely try them again if i had them now.

    If you can't just call your doctor's office and ask for a quick Imitrex prescription . . . my daughter (the person with CH in my family) has had success going to a walk-in clinic and getting an Imitrex prescription. She is fortunate in that she has a letter from her doctor saying she has CH, so she didn't have to worry about the diagnosis being accepted.

    If you do get Imitrex, remember this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    • Like 3
  3. In this document, under the heading Treatments without O2 or other meds, some possible abortive strategies are listed: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/    I'd say that brain freeze and some variation of standing/sitting in very hot water seem to be the most recommended.

    Be absolutely sure that there's O2 for you when you come out of the surgery.  I see Jeebs has just mentioned the surgery experts.  Some anesthetics will fire up CH in a big way.  I think these are mostly local ones, particularly epinephrine.  The experts will know about that, too.

    17 minutes ago, Bejeeber said:

    @jon019 was referred to as a bum for a sec there in a term of endearment American sense, not the UK meaning)

    I am old enough that the term "Beloved Bums" has a very evocative significance for me. For Shaun brearly, it probably has a very different meaning.

    Bums: An Oral History of the Brooklyn Dodgers (Dover Baseball): Golenbock,  Peter, Dickson, Paul: 9780486477350: Amazon.com: Books


    • Like 4
  4. Batch's recommendation in the past has been to take the calcium channel blocker as far apart (in time) from the calcium supplement as possible.  He seems to have stopped saying that at some point, but I think the recommendation still holds.  @xxx


  5. 5 hours ago, Nishant Kumar said:

    Any pointers who can I talk to?

    There is a fellow, I think in Belgium or Holland, who developed an app for tracking a lot of data related to CH attacks, medications, etc.  The name of it is on the tip of my brain, but it's not coming through to me.  Trying to find it at the app store, I see there is an app called ClusterUck that might be similar.  These folks might have a lot of data.  There have also been some major studies of people with CH, most recently one from Larry Schor and others and before that, one by Todd Rozen, that have gathered and processed a whole lot of data; and there is the current one that you can see here: https://clusterbusters.org/forums/topic/13151-cluster-headache-medication-psychedelic-use-survey-2023/.  

    • Like 2
  6. On 7/28/2023 at 10:50 AM, Frenchie said:

     I have basically been shutting the tank off and on and finding a rhythm so that when I need that next hit the bag is full but I'm not wasting O2 into the room.


    On 7/29/2023 at 6:21 AM, spiny said:

    That is a great solution to conserve O2. 

    Yes.  You might also find that you can identify a flow rate that produces the same result -- bag full when you're ready to inhale, but not before -- without the turning off and on.  

    • Like 3
  7. What you can do is affected by what your doctor actually wrote.  It would be rare for a doctor to specifically prescribe an "oxygenator" (also referred to as a concentrator); it's more likely that the prescription just said something about O2 therapy, and your oxygen supply company sent you a concentrator, which is what they send to their typical customers (people with COPD).  In any event, first step might be to assume that the doc's prescription was general, and call the oxygen supply company to discuss your CH situation (I have had to do this twice, with two different oxygen companies in two different locations).  Of course, if the doc actually prescribed a concentrator, you have to get it corrected there.  If either the O2 company or the doc is the source of this problem,  and won't reconsider, there is literature you can show them about the proper prescription. 

    Did you get a nonrebreather mask, or just those things that go in your nose (cannula)? 

    Some people when first using O2 get relief from concentrator/10lpm (with nonrebreather mask).  If you are actually unable to get tanks and a non-rebreather mask, though, you'll probably want to do some DYI and set up a system using welding oxygen.

    • Like 3
  8. I would say that a deep inhale/full exhale/inhale again every two seconds (26 times/minute, as you say) is not ideal.  The reason for a high flow rate is if your regulator can't keep up with a preferable breathing strategy, but it feels here as though your regulator is dictating your strategy.  While people develop strategies that are customized to what works for them, I would say (as it says above) that the most basic, or maybe "standard," approach is to start with a full exhale (with crunch), then a deep inhale, then hold for a couple of seconds, then a very full exhale, and repeat.  This is going to take roughly ten seconds.  If this technique works for you, you might be able to use a lower regulator setting for that pace and the bag will be full when you're ready.  I think this video -- https://www.youtube.com/watch?v=PtFHRIQN17s&t=5s -- is quite good.  You can start at around 7:30 in the video to see the breathing technique. 

    I'm imagining that you have to "go lay down" after five minutes because you are practically hyperventilating, but taking a break while using oxygen doesn't seem like an effective strategy.

    Let us know how things go.

    • Like 5
    • Thanks 1
  9. You'll do it, Denny.  Another hell for you to pass through and come out stronger on the other side. I know you will.   (I've been there with that neck stuff, so I know hell is not an exaggeration.) 

    I just escorted my brother, 87 years old, on a return trip to the West Virginia town where he taught at a college for 49 years. (He lives in Cambodia full-time now.)  More than a hundred people came to some events put together in his honor. Some drove from pretty far away, and a few flew in.  Those same kinds of gatherings would greet you if CH people lived in the same place.  Like him, you have meant so much to so many, across a whole lot of years, always giving, always supporting, making connections.  Looking forward to cheering your recovery.

    • Like 4
  10. For some people, side-switching might indicate a change in the cycle.  For others, it's just another thing that happens.  It's not common, but not super-rare.

    What jon said -- you want oxygen for stopping your attacks. The more you use the injectable sumatriptan, the worse things are likely to get -- more, longer attacks, longer cycles ....  And prednisone should be limited to once a year (a taper of two or three weeks).  And the amitriptyline is, indeed, probably useless.

    Get oxygen (Read about that and other things here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/)

    For now, split the injections when you use them: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    Start the vitamin D regimen, which has helped many hundreds, if not thousands, of people with CH: https://clusterbusters.org/forums/topic/1308-d3-regimen/

    Consider busting: Read about it at the end of this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  -- or by cliclking on "New Users -- Please read here first" at the top of any page (in the blue banner).




    • Like 4
  11. I'm not aware of research.  It's well-known of course that caffeine helps, and many people think that the taurine in energy beverages, either alone or in some connection to the caffeine, also helps.  If you're going to be relying in part or in full on caffeine, try to stay away from it at times when you're not using it for attacks.  As with so many other things, it seems you can build a tolerance to caffeine that reduces its effectiveness.  Depending on which Monster drink you used, you might well find that it has less caffeine than the much smaller, quicker-to-get-down energy shots, such as 5-Hour Energy.  A "standard" Monster has about 80ish mg of caffeine, whereas the standard 5-Hour Energy has more than 200mg, and the extra strength 5-Hour has close to 250mg.

    28 minutes ago, mikeh2017 said:

    Oxygen doesn't seem to be working for me

    Assuming that O2 has worked for you but isn't now -- some/many people find that if the pressure in the oxygen tank is low (maybe 1/3 full, or less full), O2 doesn't work as well.


    • Like 2
  12. A sight that is both joyful and sad at the same time.   Good going!

    Does she have the little open holes in her mask (if it's a standard non-rebreather) covered so no outside air gets in when she's inhaling?  I'm sure you also know that if 15lpm isn't enough (so that she doesn't have to wait for the bag to re-fill before she inhales), you can get a welding reg for $30-$40 at amazon.

    Do you have a cart for moving that thing around?

  13. 3 hours ago, Royster said:

     Also I've started the D3 regime that batch(fighter pilot) discovered,  such a clever man. But going to hold back for now until this cycle isn't so bad, because I believe its the same as vit m & vit L in that you can't take preventative or abortive.

    I'm pretty sure all preventives/abortives are okay with the D3 regimen.  Take verapmil as far apart as possible from the calcium (because verapamil is a calcium channel blocker).

    Be sure to cover those open holes in your mask.

    WOW!  I'd love to know what that giant thing is on top of your tank!  I get that it's a "regulator," but there has to be more than that going on.   Maybe @Racer1_NC knows.

    I wonder whether there might be some of the green masks (the ClusterO2 Kit) available at the conference?  That would be a good opportunity for them, and if they shipped a bunch or someone brought a bunch, maybe they could be less expensive??  Maybe you might contact the conference organizers and ask/suggest??

    Another thing popularized by Batch, as an abortive, is to give yourself "brain freeze" by getting something very cold to the roof of your mouth, such as an ice cube.  Since you have that bucket there already, maybe give it a try??

    • Like 1
  14. 7 hours ago, Royster said:

    I've heard or read somewhere that I need to hyperventilate or something???? Can anyone tell me what this is please 

    A description of hyperventilation from an O2 expert (the ex fighter pilot you mention in another post, who is indeed a hero in this battle) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

    In essence, it's fast, deep inhales and exhales (each inhale/exhale taking three seconds).  The recommended process in the file is 10 3-second inhale/exhales (30 seconds total) of room air, with a forceful "crunch" of the abdominal muscles at each exhale.  The author of the file writes, "The exhale part of this procedure is important.  Exhale rapidly until it feels like your lungs are empty...  They're not.  At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion."  After the 30 seconds of hyperventilation with room air, take a deep inhale of O2.  Hold the O2 for 30 seconds, exhale forcibly, and do another 30-second cycle of 10 inhales/exhales.  You should read the file so you fully recognize what's going on there.

    Are you able to post a photo of your mask?  It has a bag that fills up with O2 before you inhale?  It has two circles of holes, one or both of which have a white or green gasket on the inside of the mask, but the other is just open holes?  (One thing you can do that might help a little is to cover those open holes with tape or with your thumb, because they let room air mix with the O2 you are inhaling.)  Your O2 is in a canister/tank/cylinder?

    So glad you're going to the conference!  Wish it was sooner. 

    Have you tried any other strategies to manage the pain of your attacks?  Can't even imagine having it on both sides.  Some people find that standing in very hot water helps, with some variations from there (for example, some walk out into a cold room and the back into the tub, some get more immersed than just standing, some simultaneously put an ice pack on the head).   

    • Like 3
  15. Good idea!  If you click on your name or the R alongside any of your posts, it will take you to your member page.  At the upper right there, click on Account Settings.  The first thing you will see is Display Name, with a "Change" button to the right of it.  Once you have made the change, it will change your previous posts as well as any new ones.

  16. This must have already been mentioned here, but I don't remember it.

    "As it turns out, animals and fungi share a common ancestor and branched away from plants sometime around 1.1 billion years ago. Only later did animals and fungi separate on the genealogical tree of life, making fungi more closely related to humans than plants."  https://www.scienceabc.com/nature/how-are-mushrooms-more-similar-to-humans-than-plants.html

    For the scientifically literate: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48023/#:~:text=This congruence among multiple lines,constitute an independent evolutionary lineage.

    • Like 2
  17. Sounds very good:  https://ki.se/en/research/centre-for-cluster-headache

    "The Centre for Cluster Headache includes all research at Karolinska Institutet regarding cluster headaches and offers a well-integrated collaboration between research and clinical operations. The main goal of our research is to understand the molecular and genetic mechanisms behind cluster headache, as well as to identify new targets for diagnosis and treatment."

    • Like 2
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