Jump to content
ClusterBusters

ThatHurtsMyHead

Administrators
  • Content count

    1,993
  • Joined

  • Last visited

  • Days Won

    48

Reputation Activity

  1. Like
    ThatHurtsMyHead got a reaction from Racer1_NC in Risk / Dangers of Oxygen?   
    Exigeous,
    Oh and don't forget to stay on the O2 for 5 mins or so after the attack stops.  That normally prevents the attack from coming right back.
    Cheers,
    J
  2. Like
    ThatHurtsMyHead got a reaction from spiny in Risk / Dangers of Oxygen?   
    Exigeous,
    Correct, as Spiny mentions.  O2 toxicity is only a risk at higher pressure than sea level PPO (partial pressure of oxygen) - SCUBA Diving.  The only real risk at sea level or lower pressures is alveoli collapse in your lungs,  (Those are the sacks that transfer Oxygen to your bloodstream and extract CO2 from your blood) but that's only a risk if staying on O2 for very long periods of time.  This is due to Nitrogen washout.  Nitrogen washout in the lungs can be prevented by simply taking a breath of regular air every 20 to 30 minutes when breathing 100% O2.  That adds enough Nitrogen back to your lungs for proper function for a very long time.  
    Definitely O2 is the #1 abortive.  There's no side effects and it's much safer than ANYTHING  the doc can give you.
    Cheers,
    J
  3. Like
    ThatHurtsMyHead got a reaction from spiny in Risk / Dangers of Oxygen?   
    Exigeous,
    Correct, as Spiny mentions.  O2 toxicity is only a risk at higher pressure than sea level PPO (partial pressure of oxygen) - SCUBA Diving.  The only real risk at sea level or lower pressures is alveoli collapse in your lungs,  (Those are the sacks that transfer Oxygen to your bloodstream and extract CO2 from your blood) but that's only a risk if staying on O2 for very long periods of time.  This is due to Nitrogen washout.  Nitrogen washout in the lungs can be prevented by simply taking a breath of regular air every 20 to 30 minutes when breathing 100% O2.  That adds enough Nitrogen back to your lungs for proper function for a very long time.  
    Definitely O2 is the #1 abortive.  There's no side effects and it's much safer than ANYTHING  the doc can give you.
    Cheers,
    J
  4. Like
    ThatHurtsMyHead got a reaction from Brain on fire in 2020 Conference   
    I think Florida (Tampa st pete) would be awesome..  :).  Afternoon sail for the first 20 or so.
     
    cheers,
    j
  5. Like
    ThatHurtsMyHead got a reaction from spiny in Anyone in Florida?   
    Just messaged you my fellow Floridian.
    Cheers,
    J
  6. Like
    ThatHurtsMyHead reacted to Into Light in 2020 Conference   
    Happy to report I’ve completed registering for Chicago 2020. This time I’ll skip the pool.
  7. Like
    ThatHurtsMyHead got a reaction from Brain on fire in 2020 Conference   
    I think Florida (Tampa st pete) would be awesome..  :).  Afternoon sail for the first 20 or so.
     
    cheers,
    j
  8. Like
    ThatHurtsMyHead reacted to spiny in 2019 Conference how is/was it?   
    It was my first conference. Amazing!!!! It was a joy to meet so many members after all these years. Having the opportunity to talk to new people was terrific. It was super special to be able to talk to them in person and perhaps provide a bit of new information.  
    It was a lot of information to absorb over two days! 
    I was more than shocked to have some people come up to me and say " I know you spiny!!!!'  Yes, I finally came off my mountain! Shadowed a bit for a day, but otherwise, I had no issues with a cycle starting there or when I got home. 
    Many thanks to Bob for making this happen! And thanks for pushing me to go!  
  9. Thanks
    ThatHurtsMyHead reacted to clovis fick in No medication   
    As for Oxygen, you just need a Rx. Ask Dr. for it and a good respiratory/medical supply place and pay out of pocket, its super cheap ( mine are 7 bucks a tank, good for 4 headaches)..It is so worth it.
  10. Like
    ThatHurtsMyHead reacted to Brain on fire in No medication   
    For a very long time I was in denial & on no meds. I was chronic. Couldn't take Verapamil, prednisone & couldn't afford oxygen. Then got Sumatriptan (Imitrex) injections & found these fine folks. I was able to get oxygen & the treatment methods here got me to painfree. I only take occasional preventive doses to stay pain free now.
  11. Like
    ThatHurtsMyHead reacted to CHfather in No medication   
    I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me.  To answer the fundamental question, my daughter has been through many years of cycles with no medications at all.  She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen.  A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused.  She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine.  (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.)
    To endure CH without oxygen seems crazy to me.  If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen.   To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me.  What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  
  12. Like
    ThatHurtsMyHead reacted to spiny in No medication   
    Hi 81007 and LKD06. And welcome to you both.
    I am at a loss why pills are being prescribed for clusters? They take too long to work for most people. If you get the injections you get much faster relief and you can take less than the standard auto-injector dose by monkeying with the stupid pen. Vials are much better.
    I don't think you are making a mistake in avoiding the meds if you can LKD06. There are other options that can help you. The D3 Regimen, energy drinks, etc. Sorry, I am not up to speed on your history. 
    This community is working to solve the issue of no O2 for Medicaid or Medicare. There is a meeting in DC to bug the government to fix this horrible injustice. We call it Headache on the Hill. 
    ATB
  13. Thanks
    ThatHurtsMyHead reacted to FunTimes in No medication   
    I would highly recommend getting oxygen to abort your attacks. No rebounds or side effects 
  14. Like
    ThatHurtsMyHead reacted to Into Light in 2019 Conference how is/was it?   
    A great big thank you you to everyone whose efforts brought this year’s conference into existence, and to all the attendees, whether I met you or not. Suffering from such a rare, isolated, and isolating affliction, it was heart lifting for me to see a tribe of us all together.
    I can’t thank all those of you who were fun to meet and those who were helpful...nonetheless, it was great to finally meet IRL among many others @Psiloscribe @Freud @dmlonghorn @Batch @Dallas Denny and our fabulous enlightened First Presenter.
     (I lust after the phone case.)
    love to all
    Into Light
     
  15. Like
    ThatHurtsMyHead got a reaction from dmlonghorn in 2019 Conference how is/was it?   
    Home safe as well.  Loved seeing everyone, newcomers and old. :P)
    Love to all CH'ers!
    J
  16. Like
    ThatHurtsMyHead reacted to Dallas Denny in 2019 Conference how is/was it?   
    Home safe!!  Another phenomenal conference, we are so blessed by Bob, Eileen and and the many volunteers who tireless efforts give our tribe the opportunity to gather like this every year!! 
    It was so very cool to meet sooo many 1st timers who are relatively new comers in this community!.
    Its amazing how much this thing has grown since my first in Portland 2009!  The agenda has become so full of speakers that we need 1 more conference day so it's not quite as busy and we have more time to socialize!
    I'll post later about the highlights but for now I'm about to go lay on the bed and inspect the back of my eyelids for a couple hours!!
    DD
  17. Like
    ThatHurtsMyHead reacted to Txfire in 2019 Conference how is/was it?   
    This was my first year. 21 years I’ve felt alone in this battle. This year reached one of the lowest points and decided I needed to go. Left with a renewed hope and lots of information. Above all though,  after 21 yrs... not alone in this anymore. I can’t put into words the freedom that comes with that. Thank you to all who spent countless hours teaching me, listening to me,  and genuinely showing concern.   I’m sure to be back next year in Chicago
    Ben
     
     
  18. Like
    ThatHurtsMyHead got a reaction from Brain on fire in 2020 Conference   
    I think Florida (Tampa st pete) would be awesome..  :).  Afternoon sail for the first 20 or so.
     
    cheers,
    j
  19. Thanks
    ThatHurtsMyHead got a reaction from Brain on fire in 2019 Conference how is/was it?   
    Just got to the hotel.  Already saw a few familiar faces.   Love to all CHers. ;)
    J
  20. Thanks
    ThatHurtsMyHead got a reaction from spiny in O2 trick   
    O2 doesn't need a flame to spontaneously combust with hydrocarbons.  I know lots of people do this, so I'm not knocking it.  Just wanting people to be aware they should be very careful. 
    Example:  Say a mechanic comes in with oily hands and is getting hit.. He goes for the bag and bang... He's on fire in a second.  Hydro carbons are all around us.
    Again I know lots of people do this without issue, but just wanting there to be warnings also.
    Cheers,
    J
  21. Thanks
    ThatHurtsMyHead got a reaction from spiny in O2 trick   
    O2 doesn't need a flame to spontaneously combust with hydrocarbons.  I know lots of people do this, so I'm not knocking it.  Just wanting people to be aware they should be very careful. 
    Example:  Say a mechanic comes in with oily hands and is getting hit.. He goes for the bag and bang... He's on fire in a second.  Hydro carbons are all around us.
    Again I know lots of people do this without issue, but just wanting there to be warnings also.
    Cheers,
    J
  22. Like
    ThatHurtsMyHead reacted to spiny in Humanitarian   
    I have a Cluster Warrior Tee. 
    My only bumper sticker has been 'Odie For Presideent' with a hand drawn pic of Odie!

  23. Thanks
    ThatHurtsMyHead got a reaction from spiny in O2 trick   
    O2 doesn't need a flame to spontaneously combust with hydrocarbons.  I know lots of people do this, so I'm not knocking it.  Just wanting people to be aware they should be very careful. 
    Example:  Say a mechanic comes in with oily hands and is getting hit.. He goes for the bag and bang... He's on fire in a second.  Hydro carbons are all around us.
    Again I know lots of people do this without issue, but just wanting there to be warnings also.
    Cheers,
    J
  24. Like
    ThatHurtsMyHead reacted to Chadman in Guest users. Welcome!   
    Just signed up, not a bot... 
    Thanks to all and all the great content!
  25. Like
    ThatHurtsMyHead reacted to spiny in Guest users. Welcome!   
    Bots are the reason we try our best to keep all references to some treatments in the closed threads. And why we move them. Google grabs them all and when someone does a search for one, our page comes up because a certain word was used. It is hunting for those things. Also why replies are limited when they are on a public thread or forum. Once it hits the ether, it is gone.  
     
    They run non-stop and they are legion!!!! 
×