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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    Speech Difficulties

    Same issue, my version. Can't think of the word at all-- tip of your tongue but ever elusive. And people's faces--liike actors whose names I do know, and I can't think of the names. I feel like I'm losing my mind. I seriously am afraid that I am.
  2. S

    Speech Difficulties

    Lately I've been noticing what you describe. I'll have a quite straightforward call to make and once I get on the phone I start to stumble over myself, leave huge gaps because I've forgotten what I mean to say, and end up apologizing for being incoherent. I've had a problem with conversation for...
  3. S

    Talking / mental fatigue

    What's PEM?
  4. S

    Talking / mental fatigue

    People don't get how much energy the brain uses. Only those of us living on the edge feel it.
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    Talking / mental fatigue

    It is a relief to have found this thread. NO ONE understands my inability to have a conversation. I tell people it is less tiring for me to walk 10 minutes (and these days that's a lot) than to talk 10 minutes. I hate to tell people--but it's true--that listening is even more tiring than...
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    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I wish I could be of help, but I've told you all I know-- or think I know-- and I don't know what else to say. I assume you've read this whole thread; you might find some clues.
  7. S

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I found that drinking tons of water, as almost everyone I consulted told me to, did nothing for the dry mouth problem. I'm not sure what did help but it's much better now. Maybe it has to do with taking potassium, because the dry mouth improved since taking potassium for some weeks. I don't know...
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    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    When I wrote about how potassium helped my heart palpitations-- reduced them, eliminated them-- I also wrote about hydration. At the time-- dehydration (terrible dry mouth not due to any meds) and scary heart palpitations were both happening together and seemed to be related, though I no longer...
  9. S

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    Hi-- I don't know what "natrium" is. Usually, in relation to potassium it's the potassium/sodium ratio that's relevant. I'm not sure, though, if the pot./sod. ratio is relevant to how the potassium has helped my heart palpitations. Potassium generally comes in 99 mg. tablets; that's standard. I...
  10. S

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    It's BioClean Hypertonic 3.5. Try that. It has instructions but my doctor adjusted that for me. So I'm a little hesitant to just say go ahead and take it. Or anyway I'd suggest trying the dosage she gave me. My body is so sensitive. Good luck. ... About potassium in the diet; if you are sick...
  11. S

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I can tell you the other supplements, but I think it's the potassium that's been helping most. One is called BioClean, I got it from my doctor, and the other is called H2Elite, which can be found online.You put 1 tsp BioClean in 1 liter of water. I can tell if that's helping. I think the H2Elite...
  12. S

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    Hi--After decades of heart pounding off and on (and sometimes off for years), I have recently gone through some months of very intense palpitations-- strong pounding, racing --it got really wild and very scary. I told my oncologist and she said dehydration can cause palpitations. That was one...
  13. S

    23andMe results - brain fog

    @seeker42 About GABA--there are neurotransmitter tests that can tell you about your serotonin levels, dopamine, etc. GABA's related. I can't remember the name of the lab, but there are home kits for it. You get the kit from the lab or your doctor, do it at home (maybe saliva sample) and send it...
  14. S

    Sensitivity to Meds & Anesthesia: Dental Question

  15. S

    LDN

    @naoise I'm on LDN. It's been maybe six months and I don't know if it's doing anything! I felt a little bump in energy right in the beginning, but not anymore. I started it because someone I sorta know said it helped her a lot, but she's not nearly as sick as I am. It turned out my doctor uses...
  16. S

    Alpha intrusion

    @Yellowblue Hi, I'm new too. I'm just saying hello-- I don't know anything about this issue, but wanted to reply anyway. Hope you get some help.
  17. S

    23andMe results - brain fog

    @seeker42 Of course I really can't say, but I do think inositol is pretty benign. It's so complicated, isn't it? I can rarely tell what causes what. But inositol would not interfere with your thyroid or with Lyme, and I don't think it would affect your heavy metal load either. I also don't...
  18. S

    Excedrin PM

    I agree; I wouldn't use Tylenol either.
  19. S

    Excedrin PM

    I tried CBD oil (from hemp) and it did nothing. Before that I tried some m.j. and the THC was way too much for me; it was like tripping; I lay there all night and couldn't move and couldn't sleep; it was so weird, and very unpleasant. CBD oil also hasn't helped my anxiety. But it's possible I...
  20. S

    zinc switched the lights back on

    @Wayne @ @ Wayne and everyone I went to the amazon page and was able to read (am still reading) the chapter (around p. 260 ff) on KPU and zinc supplementation and what I get out of this is how potentially dangerous it is to do this protocol. It will depend on how your body handles detox...
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    zinc switched the lights back on

    @aquariusgirl This is my second day on PR and you are bringing up a subject that is up for me-- the KPU thing. I have no advice-- but the KPU test is pretty easy (just a urine test, can do it at home). I've done it a couple of times and my doc wants me to do it again. After the first time, I...
  22. S

    23andMe results - brain fog

    @seeker42 Hi-- I'm just piping up to say that my doctor has wanted me to get this test and my understanding is that he is then going to send it off for interpretation elsewhere. I don't think we're meant to figure it out ourselves. I forget what he wanted me to do it for, but I haven't done it...
  23. S

    Excedrin PM

    @minkeygirl About getting another few hrs. with Trazadone---how quickly does it work?
  24. S

    Excedrin PM

    @minkeygirl I've been around this block dozens of times myself. Right now I'm using Xanax for anxiety every day and it will make me groggy so it's good for sleep. But I wanted not to be taking it all the time. So I switched back to Klonopin for getting to sleep, partly because it doesn't...
  25. S

    Excedrin PM

    @I don't see your username. Huge typo-- I meant Excedrine PM, not AM. Is there a way to edit a post? Probably, since the doc I'm quoting mentioned Tyl. & Exced. PM in the same breath, they are BOTH for initiation of sleep. I was wondering whether to bother trying it, but I won't. Thanks for the...
  26. S

    Excedrin PM

    (I just edited this because I;d typed Exc. AM instead of PM!) I was reading the CFS doctors' recommendations for sleep drugs. I'm interested in prolonging sleep, because I invariably wake up within 5 hours and then it's toss and turn and misery and some dozing, but whatever it is not 8 hours...
  27. S

    Talking wipes me out.

    @John Mac I'm skimming this thread (just joined PR today) because talking is such an issue for me and I didn't think, till now, that anyone else had this inability to talk, and listen. I mean, I knew everyone w/CFS/etc. would tire sooner than a normal person, but extreme & often immediate...