Quirky Symptoms Detective Work

I AM POTS

I finally had my tilt table test on 17th December and it confirmed that I do have Postural Tachycardia Syndrome (see here for how I got to this point and here for my comparison of ME and POTS). I also had rather constant tachycardia on the 24hr monitor. I need to increase my dose of Bisoprolol (beta blocker) but the doctor said it will also take time and won’t be a matter of just getting the right dose. I wasn’t given any other lifestyle advice, so of course I have looked advice up myself (this is a good resource but I’d like to know your tips on diet and supplements).

I had a complex emotional reaction to the diagnosis. Partly it was underwhelming because I was already pretty sure that I had POTS from my heart rate monitor. Also, I felt worse from the test itself and could only stand for a few seconds the days after tilt table. On the other hand I felt rather smug because I had found out that I had something unusual my GP hadn’t considered. There was also something much more satisfactory about having a positive, measurable result on a diagnostic test. I have always been dissatisfied with the diagnosis of exclusion approach to ME because it leaves you feeling that they just haven’t done the right test yet. It feels like a waste paper bin diagnosis for all the fatigued people who are actually undiagnosed. At least with POTS I can be sure that is what I have and the approach to managing it feels a bit more specific (although much more research could be done into POTS too). At the same time, although POTS is measurable I’m not certain how much it shows. It may be similar to saying I have a fever, as apparently otherwise healthy people get a POTS style reaction when they have a virus (possibly an evolutionary advantage to make standing unpleasant so that you rest until you’re better?).

Quirky Symptoms Clues

Anyway, my experience with POTS diagnosis has led me to a new approach to my health. I am on the look out for unusual, quirky symptoms which may explain what is specifically going on in my body (rather than general research into CFS, as an unwieldy mass of people). For example, headaches and fatigue may be your main symptoms but they occur in so many conditions that it is almost impossible to work out the exact problem, but heart rate increasing by 50bpm on standing gets you to a specific diagnosis.

TH2 Dominance?

One such quirk cropped up on the 20th December: I had a day without brainfog. My partner commented that it was a marked difference and I rather pessimistically commented that for at least the last 10 years I’ve only got that just before a virus. On the 21st December I got a sore throat which led to one of the worst viruses I’ve had in years (we think the mutant ‘flu which is doing the rounds). In turn this led to a secondary infection, then a reaction to antibiotics and I’m only just off a 2nd course of antibiotics. What I am interested in though is the cause of pre-virus brainfog holidays.

On Phoenix Rising (eg link) other people with ME describe the same thing and the general consensus seems to be that this is caused by TH2 Dominance. [In your immune system T Helper cells are initially neutral but become TH1 or TH2 in response to perceived need. TH2 is more of an allergic response and TH1 is anti-viral]. I’m still trying to work out the credibility of this, but apparently you can take some action to correct a bias in your body towards TH1 or TH2 without having to endure a virus (eg selfhacked).

Today I splashed out ordering a few herbal remedies that may assist this: jiaogulan/gynostemma tea, reishi mushroom capsules, and astragalus and I will also increase raw honey and ginger. The idea is that these either reduce TH2, increase Th1 and/or assist with the balance. [I’m also trying to get my gut microbiome back on track after the antibiotics and this week I’ve had kefir and more yoghurt and I’m getting sauerkraut and fermented pu-errh tea kombucha]. I will add each thing one at a time, but eventually they’ll overlap, which will be no good in working out which supplement helps, but it should give me some idea about whether this approach to Th2 will help me.

Have you looked into this TH1/TH2 balance? Do you have a different explanation?

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7 thoughts on “Quirky Symptoms Detective Work

  1. I had a very positive response to Astragalus – liquid form is more easily accessed by the body. Not heard of the TH1/2 balance but it makes sense. Healing is all about re-creating the balance in the body. It happens… just very slowly… so be consistent and patient 🙂

    Liked by 1 person

  2. Great news on your POTS confirmation! It definitely isn’t good news to have another diagnosis, but as far as getting more info about what is going on with your body- it definitely is.
    Are you on a salt regime yet? You’ll probably want to get well aquainted with a ton of salt each day along with electrolytes. I take Potassium, vit D, and citrical, since getting POTS, eat lots of olives and even drink the brine!. As well as heavily salt my food. Other POTSies even take salt tablets!
    I hope your new set of herbals shows positive results. Interesting anout the sour kraut… maybe I’ll get some instead of probiotics.
    I did want to mention that Reishi mushrooms lower BP, so in POTS, watch your heart monitor when taking it just in case.
    Welcome to the club! Not one you want to be part of, but I know how frustrating it is for your first diagnosis to allow doctors to brush all other new symptoms under the rug- when you KNOW there is much more going on.
    Keep going vertical!

    Liked by 1 person

    • Interestingly my nutritionist noticed 2 years ago that I was low on salt (not knowing there was a POTS aspect then). Having previously switched to homemade organic food we’d effectively cut out salt as I wasn’t eating any processed food. I added salt back in and E-lyte balanced electrolytes which did help (maybe significantly in the step from virtually Bedbound to housebound). Now I’ve increased again.

      I’ve just got Ella Woodward’s book but can’t work out whether there’s anything specific in her diet for Pots or if she just benefitted from a generally healthy diet? (you’ve probably heard that her change of diet helped put her pots in remission). She went vegan but for ME I’ve been advised that it’s hard to get enough protein on a vegetarian diet.

      Liked by 1 person

      • Thank you for letting me know about Ella Woodward’s book. I’m not familiar with it. I have changed my diet A LOT since my diagnosis of POTS, but since I’m bedbound due to passing out so easily, I can’t cook the meals that so many of the special diets recommend. Also, I have GP- not unlike many of us POTSies. But high fat veg options seem to work best for me personally (nut butters, hummus, tahini, etc.)
        I totally agree with what you said about going fully vegetarian though. It’s a delicate balance, and keeping weight on is tough enough.
        This finicky body is a blast isn’t it?
        I hope the new dose in beta blocker, herbals, and changes to your diet cause a positive shift in your POTS symptoms.

        Are you familiar with Dynamic Neural Retraining by any chance?

        Liked by 1 person

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