Jump to content
ClusterBusters

CHfather

Advanced Members
  • Content count

    5,115
  • Joined

  • Last visited

  • Days Won

    196

Reputation Activity

  1. Like
    CHfather reacted to jon019 in Risk / Dangers of Oxygen?   
    .....for me the scariest thing a doctor can say is "I dunno", and that's certainly what I'm getting now......
    au contraire mon frere.....the scariest is "we gotta stop dickin' around with this!"....actual quote to me, and it wasn't about CH. gimme a doc who knows his/her limits any day over some version of "I'm God...lissen up!". Now then, what ya wanna hear next is : 'but we're gonna figure it out".....find ona them.....
    My immediate goal is to get O2 as fast as I possibly can.  More questions will come soon I'm sure...
    ...and we await a report on the first time an O2 abort drains away the pain like water...and it will.....and you find yourself in tears of gratitude, relief, and God knows what other feelings.....cuz we have been there............
    best
    jonathan (3 decade O2 huffer.....)
    P.S. welcome to the board!
  2. Like
    CHfather reacted to Brain on fire in Risk / Dangers of Oxygen?   
    Wow! My oxygen Rx 20lpm STAT with non-rebreather mask 20mins as needed for cluster headaches. My primary care doc rocks! If says 'I don't know." I sit in room with while it gets looks up it. If not satisfied with what is found online "I'm going to makes some calls, be right back." Not once have I left that office without answers. No PAs, no nurse practioners just the nurse for vitals & I always see my doc. 1st appointment, spent 2 hours with me listening. That is the beauty of a small practice & a darned good doc!
  3. Like
    CHfather reacted to MoxieGirl in Freud   
    I just offered to help someone in the same way the Freud helped me awhile back. Made me think of him, and I hope he's doing OK and will be back soon. My heart goes out to you Freud. Hang in there, you have friends that care.
     
    xx Mox
  4. Like
    CHfather reacted to Brain on fire in Freud   
    Freud has assisted so many on a 1 to 1 basis on this forum. He is an inspiration for other's to do the same. Just as he inspired you Mox.
  5. Like
    CHfather reacted to Freuds mom in Freud   
    Sorry if I didn’t reply to all the prayers & good wishes sent to Brian. He appreciates them and is making progress. He misses everyone and should be back real soon. 
  6. Like
    CHfather reacted to JJinNJ in Freud   
    Yes BOF!  Freud...My fellow Jerseyite, Get well soon! He helped me quite a bit on an individual basis when the beast first came knocking.
  7. Thanks
    CHfather got a reaction from Brain on fire in Risk / Dangers of Oxygen?   
    It's not uncommon that a PA is more helpful than the doc.  This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035  It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better.  All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1).  A commonly used app is UpToDate. You can ask the PA to look up CH.  An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask."  There are abbreviations in there when it's formally written, but that's the content.
    You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too).
    So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania.  You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them.  As BOF says, oxygen is generally not effective against hemicranias.  There is, however, a pharma drug, Indomethacin, that is effective.  Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment.  (Indo is very hard on the gut, for most people.)
  8. Thanks
    CHfather got a reaction from Brain on fire in New sufferer with questions about O2   
    Exi', you might find some of this helpful: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  9. Thanks
    CHfather got a reaction from Newbie13 in Thank you   
    Cycles seem to end differently for everyone.  For some, there's an increase in severity/duration before a cycle ends, for others it's a more gradual tapering.  Unfortunately, it is likely that your attacks will return after the pred taper, unless your cycle has actually ended. Sometimes it does seem that the pred will end a cycle, but that seems rare (and there's no way to know in most cases whether it was ending in any event).  I would suggest starting on the D3 regimen as soon as possible. There is about an 80% likelihood that your D is too low just by normal medical standards, and a nearly 100% likelihood that it's too low to treat CH.
    Wonderful that you have such a capable and caring neuro!  
  10. Like
    CHfather reacted to spiny in Thank you   
    While sorry that you have CH, we are very glad that you found us. 
    Read and ask as many questions as you can or care to. 
    By reading the Forum, I think you have some good background info for your Neuro visit. Like Verap is the most often given daily med for CH. It lowers blood pressure. And you want the short acting, NOT extended release formula. It just works better. And you will want to keep an eye on your BP if you increase the dose. EKG's are often done with an increase in dose. Need to keep an eye on cardiac function.
    Often you will be given a Prednisone Taper Pack to bring relief while the Verapamil gets into your system. While a miracle drug in terms of pain relief for most, it cannot be taken long term due to joint damage. A short burst here and there is about all that your can body handle without risking damaged hips.
    Most other drugs are considered second tier. Not the best to use and often 'added on' by some neuros. If you are offered Imitrex, you want the injections. Some get by with nasal spray, but it does not work as fast as the injection. Pills are about worthless due to the time it takes for them to work.
    Take the O2 information with you too! Not all are up to date on how to use it and when to use it. They normally do not tell you how to use it, but for that you have us.   CHF is the O2 pro when it comes to covering the subject! 
    And read up on the D3 Regimen. It is awesome for many sufferers. Lowers pain and slows ramp up to allow a better abort if you hit your O2. It is all good for you vitamins. A blood test for a baseline of your D levels and such is stressed when you first begin the regimen. Some start the vitamins and get tested a bit later due to doctors and such. We tend to have low D levels when in cycle or even year round for some. This regimen has really helped a lot of CHers. Some go completely pain free with that alone! 
    ATB!!
     
    Your reply to CHF just popped! Sounds like you have your ducks lining up nicely!!!  
  11. Like
    CHfather reacted to Newbie13 in Thank you   
    @spiny - thank you, really appreciate this info. The more I hear/read, the more faith I have in my neuro (which is so encouraging). On Prednisone and pain is gone, beginning to taper down yesterday and noticed some shadow pain .. hoping the verap will do it's job as I decrease the pred. 
     
    Question - how do I know if a cycle is ending? Because of the sinus diagnosis, I was on Prednisone twice for a few days at a time, and pain came back with a vengeance after the last dose each time. I'm nervous that the same thing will happen with this round.
  12. Like
    CHfather reacted to Newbie13 in Thank you   
    Thank you @CHFather, oxygen was the first thing my neurologist recommended, and I've got an order in process. Thankfully she seems to be right in line with what I've seen recommended on here - she even mentioned the vitamin D3 regimine once I get my blood test results. 
  13. Like
    CHfather got a reaction from mit12 in Open letter to major chemical companies (BOL-148)   
    I am with you in any way.  I have often myself what I would pay to end my daughter's headaches safely, permanently, and 100% legally, and the answer is . . . a whole lot, whatever the effect might be on my retirement savings. 
    At the same time, I'm not sure that sending this letter individually would matter much . . . aren't there connections in the CH world, even at this small sample of it, to people who might care if they really understood?  Gosh, I'm thinking of some people I know who might be able to help.  Can this campaign be organized in some way?
    (Am I jumping the gun? Isn't Entheogen trying to move this forward, with a profit motive? www.entheogencorp.com   Are they the right ones to contact with offers to help???)
    At his blog, the Yale Medical School guy who has done a lot to try to gain attention to the busting tactics supported here, wrote this:  >>>My question to my readers is–why arenÂ’t you out picketing? Cluster headache is four times as common as muscular dystrophy, I kid you not. Cluster headache is as common as multiple sclerosis. Yet JerryÂ’s kids are out there raising $60 million a year for muscular dystrophy research. $100 million a year is poured into MS research. The comparable figure for cluster headache research isÂ… well, close to zero.
    But if you donÂ’t care about cluster headache research, why should we?<<<
    Of course, many here, including my daughter, have found relief, thank God.  But there's so much more to do.  I'm ready, willing, and kind of able.
    Jerry 
  14. Like
    CHfather reacted to Brain on fire in Freud   
    Big shout out for a fast and speedy full recovery to our beloved Freud. We miss you! Get well soon!
    xoxoxoxoxo
  15. Like
    CHfather reacted to MoxieGirl in Freud   
    Echo that. He's such a nice guy, too nice for the pain he suffers. My heart breaks for him. xx
  16. Like
    CHfather reacted to Into Light in Freud   
    yes
    what they said
  17. Like
    CHfather reacted to jon019 in You Know the Ironic Thing About Cluster Headaches?   
    WOW...exactly!!!....used to almost wish for a cycle when I had to write for work....lots of us get the euphoria....but this I've never seen before... wish it was harnessable w/o the CH.....
  18. Like
    CHfather reacted to FunTimes in New to Clusters   
    Welcome to the site!
    You will want to see a neurologist and or a headache specialist to have a few scans of your head done just to rule out anything major going on. Once you are declared a cluster head and given that id card you will have all the benefits of denied help from most of the doctors you will see. You are one of the lucky ones.. 
    on a more serious note, click on the banner on the top of this page and read as much as you can on this site. Do not be afraid of asking a million questions! Oxygen is what you will want to get your hands on to abort your cluster attacks, this is the hardest thing to get doctors to prescribe to you (comment above). Read up on the vitamin D3 and Busting. Nobody has a cure for this lovely condition but we here all work together to make things as comfortable as we can. Some including myself will down a energy drink at the first twinge of a cluster coming on and this helps hold down the intensity a little so we can get to our oxygen. 
    Keep a positive outlook and open mind and you will be just fine.. It is hard sometimes but people here are willing to listen and help get through the crappy times with you. 
  19. Like
    CHfather got a reaction from kat_92 in Success with different breathing techniques   
    If your face is small, you might require a pediatric size mask.  Or it's possible that it's the other way around, and you received pediatric masks instead of adult ones.  The ClusterO2 Kit that you will be ordering can be used as a breathing tube with no mask.  Preferences about mask/tube vary. 
  20. Like
    CHfather reacted to mit12 in Success with different breathing techniques   
    I start out at 15ml/s and huff fast and hard for a few minutes than turn down to 8ml/s and take a deep breath and hold it until the bag fills and breath out and take another deep breath until I get relief. 
  21. Like
    CHfather reacted to Pebblesthecorgi in Boost Oxygen on Shark Tank   
    There is not enough O2 either by concentration or volume to be very helpful.  I tried it a couple of times to see if it would work for me.  I respond to O2 in traditional delivery for clusters very well.  The O2 in boost was not noticeable and did not respond better than hyperventilation alone and was inferior (my individual impression) to a 5 hour energy.  Its marketed overtly for altitude issues and covertly for hangover treatment.  It might be good for one of the two.  I suspect any effect would be short lived and largely placebo.
  22. Like
    CHfather reacted to jon019 in Boost Oxygen on Shark Tank   
    ...just do the math....one hit at a typical 10-15 LPM for 10-15 min would be 16 cans (plus no mask and <100% O2)....at $15 ea that's ca $240....makes the drive down to the welding shop with a box of donuts for the boys a worthwhile trip...
     

  23. Like
    CHfather got a reaction from kat_92 in Success with different breathing techniques   
    Be sure the open holes in the front of your mask are covered when you inhale.  With your thumb or with tape.  Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2.
    I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out.  The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs.  Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2.  You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help.  As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically.  Once you can tell that the O2 is taking effect, you might dial it all down a bit.  Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks. 
  24. Like
    CHfather got a reaction from kat_92 in Success with different breathing techniques   
    Be sure the open holes in the front of your mask are covered when you inhale.  With your thumb or with tape.  Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2.
    I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out.  The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs.  Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2.  You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help.  As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically.  Once you can tell that the O2 is taking effect, you might dial it all down a bit.  Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks. 
  25. Like
    CHfather reacted to VocTeacher in Thank You   
    I want to send a Thank you to all That helped me get through 8 months of what was thought to be Cluster cycle, after my neck surgery I have been headache free, its crazy that I couldn't tell the difference from a cervical and a Cluster being I have suffered clusters for a few years Again Thanks to everyone I will be checking in and hope all I have learned will someday let me help with solid advice for somebody, Peace and God Bless
×