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MRUPE

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Posts posted by MRUPE

  1. been using 02 for roughly 5 years now. I have both tanks and a concentrator. The tanks have a regulator allowing up to 15lpm. those are for work or away from home. The concentrator up to 10lpm. That’s my at home option.

    I started with a standard mask and my last cycle picked up a non rebreather mask on amazon. 

    i use the hyperventilation method and mix in deep breathing when I feel like it. 
     

    all options have been effective for me. Anecdotally, the non rebreather mask works well.  

    typical response time is anywhere from 5-20 minute using these options

    the research shows 100% 02 anywhere from 7L-12L with any mask options works. Of course there will be some individualization for what works for you. 

    hope that helps

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  2. Thanks for the information Batch. I’m happy to hear there is a potential controlled study looking into the D3 regimen. I’ll be paying attention. 
     

    As someone that follows evidence and research methods I appreciate your humility when discussing your findings/work.

    I also appreciate your comments on the “placebo effect.” The subjective experience that is “pain” is challenging measure objectively. My stance is if we can, we should attempt to control for these effects. Given the amount of non sense and charlatans out there taking advantage of people in pain, we should do our best to be transparent in what we do and don’t know. 
     

    Thanks again and I look forward to learning more from everyone here.

     

  3. hi CHfather, 

    that article and those referenced within are why I trialed melatonin last year and why I’m using this cycle. I’m trying to assess if/how it impacts my cycles. Fingers crossed...
     

    I’m not against anecdote as we all need individualized management. I don’t like the idea of adding too many variables to management, hence my questioning of vitamin D3. I may in fact implement if melatonin isn’t showing an effectiveness. Given the numerous favorable reports, I’m interested. 

     

  4. 1 hour ago, CHfather said:

    Yes, although there can be an initial loading period when the D3 amounts are much higher.  The other assorted vitamins/minerals are important.

     

    You are correct. No formal control group, placebo, etc.  The anecdotal evidence from more than a hundred users is, however, extremely compelling, and what research there is is very nicely done.  

     

    Hi CHfather, 

    Without control groups how can someone suggest the other assorted vitamins and minerals are important?  I understand there is research to suggest Vitamin D deficiency in headache conditions (migraine and cluster) but little to draw a causal link, let alone justify supplementing numerous pills? The same can be said for melatonin. Correlation to cluster headaches but little research suggesting supplementing is effective. 

    I should probably put it out there; I base my knowledge on the evidence hierarchy in research (see skeptic :) ). Unfortunately for me and this condition, that limits me in what I may or may not pursue as treatments. Needless to say, its why I'm paying close attention to the trial out of Yale and the use of psilocybin.  I hate to get my hopes up, but it looks/sounds like the only promising research for this condition.  

  5. spiny,

    I am not enrolled in the study. I have contacted the authors to learn more. They should be wrapping up the intervention period looking at clinical trials.gov. I figured they’d have some idea of preliminary results at this points. 

  6. Appreciate the welcome everyone. 

    I’ve been looking around and saw the vitamin D3   references. The resources were a bit lengthy and not made up of high quality evidence from a research methods perspective. Given the low risk I’m interested to know more. 
     

    From what I’ve read it appears to be 10,000IU/daily with an addition of other assorted vitamins/minerals. 
     
    am I correct in my interpretation?

  7. Hi all, 

    Episodic CH x 18 years. Diagnosed 10 years ago. Provided multiple prescriptions in the past (anti-depressants, convulsants, anxiety, topiramate, hypertensives) without benefit. Similar difficulties of many here: sleep triggers, ER visits, work, friend and family challenges.

    First trial of Zomig sub-lingual aborted a headache and then moved to intranasal with good effectiveness. It is my primary triptan.

    Several years ago, learned about O2 and found neurologist willing to prescribe. Was shocked at its effectiveness and reduction in use of triptans. 

    O2 has been mainstay for last several years with use of triptans at work or when O2 is unavailable. 

    Last cluster period of 2018, trialed melatonin toward the end of the cycle. Cycle returned 5 weeks ago (ugh). Have continued using O2, zomig and melatonin before bed.  

    Happy to meet a group of folks with similar difficulties and experiences. Hope to learn a thing or two here. 

    Currently awaiting completion of psilocybin trials from Yale in hopes of an option to decrease/bust cycles and increase remission times. Fingers crossed.....

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