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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. R

    Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study

    I do see that there are things that can go wrong with an inversion table. I just googled it and found things like increased blood pressure, more pressure to the eyes, can worsen vertigo, and more. I may hold off on doing this for now.
  2. R

    Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study

    Actually, for this study I believe the patient was positioned in a negative tilt. That is, their head would not be close to their shoelaces, but rather their head would be in the opposite direction. And I believe their neck would not be strained, but it would be straight, as seen in the images...
  3. R

    Is an Inversion Table helpful for POTS people (blood flow to head) ?

    I just posted a new thread on a new study that just came out. the thread is called: Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study
  4. R

    Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study

    Head-down tilt reduces the heart rate in postural tachycardia syndrome in acute setting: a pilot study By Peter Novak, dysautonomia specialist at Brigham and Women's Hospital. https://pubmed.ncbi.nlm.nih.gov/37919442/ Has anyone tried this "head down tilt", maybe on an inversion table? I...
  5. R

    Has anyone tried EECP (Enhanced External Counter Pulsation)

    Hi all, I’ve been using a leg compression device at home for a 1.5 weeks now with very good results. The leg compression device looks a lot like what is used in EECP — but unlike EECP the leg compression device I have is not synced to have the inflation and deflation synced with your heart’s...
  6. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Here is an update, which I also put in my last post, as an edit at the bottom: UPDATE from Oct 14, 2022: I made it back to my baseline about 2 weeks after getting worse from my 10th SGB. I think I got worse because I we did too strong a solution (we used Bupivacaine 0.50% solution for the last...
  7. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    That is way over priced, in my opinion. I was paying $500 per SGB with Dr. Littlejohn in Portland, Maine.
  8. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Hello good people. I'm so thrilled to to hear via various channels that some Long Covid and ME/CFS folks are getting a good response from their SGB treatments. I'm here to give my update after 10 SGB for ME/CFS. Unfortunately, it is not so wonderful. BACKGROUND: I have had ME/CFS for decades...
  9. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    So very sorry for the long delay. I will update in my next post. But in short, I'm no longer hopeful about SGB for me.
  10. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Thank you, @Jyoti. Time will tell. These are still early days for me. And I have sometimes gotten a good response from a new treatment only to have it all disappear after a few months. So please take my enthusiasm with caution. Is anyone here on Phoenix Rising considering Stellate Ganglion...
  11. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    THIS IS HOW I HAVE APPROACHED STELLATE GANGLION BLOCK MDs REGARDING DOING SGB ON AN ME/CFS PATIENT. SBG is done mostly via pain management clinics, interventional pain MDs and by anesthesiologists. A private MD can set their own rate, but if done at a hospital, it may be much more expensive and...
  12. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Here is a mish mash of info I have collected recently about SGB. Sorry it is such a mess. But there may be helpful info here. Articles, studies, posts, groups, videos (I may have posted some twice by mistake): Published paper on SGB and Long Covid: Stellate ganglion block reduces symptoms of...
  13. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Medicare: Some Stella centers (that do SGB's regularly) and MDs who perform SGBs may not take Medicare. But some will. I have heard that Medicare covers SGB for Raynauds, CRPS, hot flashes, and hyperhidrosis. And maybe some neuropathies, I think. So hopefully Stella centers can be flexible in...
  14. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Thank you, @Hoosierfans for this excellent update. So here is mine: I have had 4 shots over 3 weeks, so far, and though there were ups and downs, mostly I'd say that it a thumbs up. These 4 shots have given me increased energy, increased stamina and increased activity tolerance. It is still...
  15. R

    Shingles Vaccine Yes or No Part Deux

    Thank you all for your comments. I am considering the shingles vax. If anyone has any new info, please share. I can feel tingling and some pain in my forehead and think it is shingles. I wonder if I can get the vax when I can already feel tingling and pain...? thoughts welcome!
  16. R

    Shingles Vaccine (Shingles vax)

    Has anyone tried the shingles vax (shingles vaccine) and have anything to report about it?
  17. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Hi @mitoMAN -- it really is early days. but I will report more soon, i hope. no major improvements yet, or at least not like what you saw with the above Long Covid patient's report. The first block (right side) felt like it was turning "off" my always "on" body. but turning it off in a good...
  18. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Hi all, I'm just starting to do SGB for my long time ME/CFS. I've had two blocks (a right side and left side) so far. It is going okay. The right side block was very calming and lasted a few days, and the left side block was not calming. So what was it? I'm not completely sure if the left side...
  19. R

    Is anyone going to try the Stellate Ganglion Block procedure?

    Very exciting to hear you will do the procedure, @Hoosierfans
  20. R

    New Diagnosis and New Docs: Autoimmune Encephalitis, SFN and a Neuroimmunologist

    Hi @Hoosierfans: This *is* exciting! This is something I'm looking into too. I do not want to hijack this thread, so may I ask more about this in a private message? I just tried to send one. I am not sure if I succeeded.
  21. R

    Cumin (Cuminum cyminum): Possible PEM Blocker

    Very interesting, @seamyb that it only lasts a few hours for you. i'm still experimenting, but i wonder if this is the case with me too. time will tell. @Sushi, yes, you are right. this was right under our noses the whole time. hopefully it really is something and not nothing, as so many other...
  22. R

    Cumin (Cuminum cyminum): Possible PEM Blocker

    Could you put the cumin in capsules and take it that way, thereby avoiding the taste?
  23. R

    Cumin (Cuminum cyminum): Possible PEM Blocker

    I should have added something more to my original "I'm Trying Cumin Report" which I posted yesterday. I should say that I am likely in a perpetual state of low grade PEM, as I am always pushing myself past my limits.
  24. R

    Cumin (Cuminum cyminum): Possible PEM Blocker

    Me too! When I'm feeling a bit better, I suddenly start to clean. So both singing (I am NOT a singer) and cleaning are signs that I have more energy.
  25. R

    Cumin (Cuminum cyminum): Possible PEM Blocker

    Well, I have a cumin update too. I started last week on 1/8 teaspoon and over about 5 days built up to 1-2 teaspoons per day. Within 2 days of starting even that low dose, my mood got better and my energy level got better and better. I actually think what happened is that my energy level...
  26. R

    OMF Kynurenine trial

    I had the opportunity to meet Paolo in person and he is a lovely human being.
  27. R

    did anyone get sick from BCAAs?

    Hi @Learner1 Can I ask a question about this line you wrote: "Spoken by someone whose labs showed falling into Phair's trap by taking a little 5-HTP, and out of it by 2 years of hyperbaric oxygen." Are you saying the hyperbaric oxygen hurt you, or helped get you out of Phair's trap? Best, Rrrr
  28. R

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    hi dear PR admin/moderator: might we be able to change the title on this thread to include CCI, since that is widely discussed on this thread and would be easier to find if it were included in the title?
  29. R

    Anyone tried: Stephen Buhner's "LB Core"??

    Has anyone tried Stephen Buhner's LB Core, either the capsules or the tincture? It is for lyme, which I have seen sometimes on test results with Igenex and not other times. But Igenex apparently has a more advanced test now, so I did it and it said I have lyme. My doctor suggested LB Core. Has...
  30. R

    Has anyone tried medical grade marijuana for their ME/CFS symptoms?

    there are lots of anecdotal stories of medical marijuana (mm?) helping with pain and inflammation. i do not have any specific sources except what is on this website for this mm consultant. https://www.ezrahelps.com/ he gives weekly free talks via facebook, and has a lot of videos on his...