The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Has anyone else ever been on Oxygen?

Discussion in 'General Treatment' started by Misfit Toy, Sep 2, 2015.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I am being put on oxygen due to a migraine that won't go away, plus many times I am wiped out and feel I can't get air. Was wondering if anyone has been on oxygen.

    I also found out yesterday, that I have very low levels of zinc. Still waiting on Pyrrole tests.
     
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  2. Valentijn

    Valentijn WE ARE KINA

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    I don't have personal experience with oxygen, but some people here and elsewhere say they do much better with it. I don't think I've heard of anyone having problems with it, though I think there's a theoretical possibility of becoming too accustomed to the extra oxygen.
     
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  3. Misfit Toy

    Misfit Toy Senior Member

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    I'll take it! Anything that helps and I'm out of breath anyway.
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    If you go to Dr. Jamie Deckhoff-Jones's blog, you can read her experience with prescribing oxygen to ME/CFS patients. That link takes you to just one of her entries on oxygen, but if you search her blog you will find many others. In short, she found it very helpful.
     
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  5. alex3619

    alex3619 Senior Member

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    My understanding is that oxygen has been tried. Like many treatments there are some big responders, some small responders, and some non-responders.
     
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  6. Misfit Toy

    Misfit Toy Senior Member

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    Sushi, thank you....reading now.
     
  7. Valentijn

    Valentijn WE ARE KINA

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    Do you know if there's been any research studies?
     
  8. SickOfSickness

    SickOfSickness Senior Member

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  9. alex3619

    alex3619 Senior Member

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    I am not sure there are any large formal studies. I think most of it is doctors trying it. However some of us may have misdiagnosed chronic carbon monoxide poisoning. Oxygen definitely helps that.
     
  10. slysaint

    slysaint Senior Member

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    I had oxygen tanks on prescription for about 3 years. I found it very good if I felt a migraine starting or my lungs felt like they were filling with concrete.
    When I moved to the coast I decided to try and get in the fresh air as much as possible and stopped getting the oxygen tanks. I will confess that there have been times when i wish I still had it. But overall I am managing without.
    After 9 years, i still get migraines but not as severe and the breathing problems are very infrequent.
    Just a side note; the tanks are big and bulky(mine were on a trolley thing) , there was no way I could get it up and down stairs, so it lived in the lounge. You could say it was a bit of a conversation piece! It certainly seemed to make visitors take my condition more seriously
     
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  11. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    You can also get oxygen concentraters that take in air from the room and concentrate the oxygen. They are somewhat noisy. You are attached to it by a long tube, so you can move around.
     
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  12. Abha

    Abha Abha

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    Hi Misfit Toy et all,
    I have been taking HBOT(oxygen treatment) since June...20 intensive treatments(close together) then once weekly.In my case so far, I haven't felt any significant improvement.However, I have spoken to others that it has definitely helped.One lady with MS has been doing it for over 20 years.It has really helped her and she can walk without a stick.Other MS patients who have been using it for some years say it has also benefited them too_One lady with palsy told me it helped her immediately.Another chap who has ME/CFS told me that it helps him.He takes the treatment twice a week(?).Another MS patient told me to persevere with it as it helps over time.Many with sports injuries/motor bike injuries too have found that it aids their recovery time for breaks/sprains etc..A lady with COPD has been using it for seven years and she told me that she didn't have to buy the oxygen tanks(suggested by her GP) as the HBOT helps her.Now she takes the treatment once weekly.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    I was lucky enough to be "given" an oxygen tank that my client's mother used. It's great and quiet, not too loud. The problem I am having with it at this time is the plastic smell of the cannula. It's new and it wreaks. I just started using this today.
     
  14. SickOfSickness

    SickOfSickness Senior Member

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    Is the oxygen helping you? How much do you use it? I'm glad you are still trying things, even when it's a drag sometimes to keep trying.
     
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  15. Misfit Toy

    Misfit Toy Senior Member

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    @SickOfSickness -I don't think so. I am not using it all day long because it's heavy to carry. It's not hurting but I wanted it for migraines and I would say it's not touching them. I have had a migraine for a month now.
     
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  16. SickOfSickness

    SickOfSickness Senior Member

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    Sorry it's not helping your migraine :(

    That's crazy. Why did the migraine start, if you know?
     
  17. Misfit Toy

    Misfit Toy Senior Member

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    @SickOfSickness -who knows...my period kicked it off and it's hung around. Ugh. I need to possibly have a shot of Botox.
     
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  18. jsfm

    jsfm

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    I have used O2 previously for chronic daily migraines....unfortunately it never helped me. However, it is a common practice for people with Cluster Migraines. I for sure think the O2 may be beneficial since you are short of breath (SOB). Did you say that you take imitrex for your migraines?
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    @jsfm -I do take imitrex but the pill or sumatriptan works better. Fioricet is the # 1 migraine kicker, but I don't want to overdo it. Topamax if thinks get really bad....TBH, I am refraining from a lot of the meds right now. I am still using the O2 but today I was able to really get out and do and didn't use it.

    How are you? How is the acyclovir?
     
  20. L'engle

    L'engle moogle

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    @Misfit Toy I tried it out for a few months several years ago. I also found the plastic tubing had a toxic feel that seemed really unhealthy. I took to just sitting by the air outlet and cupping my hands around it. I think the oxygen fried my mp3 player, lol. Also sitting in that position 2 hours a day or so wasn't really feasible. I felt like it gave me a benefit at first but then started to feel funny. I suspect it was over-saturating the air to my brain with oxygen, while not overall improving blood flow into my head, which felt like a strain. Sort of like sending overloaded trucks somewhere to make up for a truck shortage.

    I didn't try it for a migraine though. I imagine it could be quite helpful for a specific problem!
     
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