Failed tilt table test

I second your sense that B1 repletion and supplementation can be a very slow-going process, fellow explorer! After I posted yesterday about how terrific my BPs are now after complete discontinuation (under medical supervision) of my BP meds (losartan and carvedilol), and chalking this up to my B1 protocol, I remembered that I also recently started on a beet root supplement that could also be helping with BP . . and have also been taking nattokinase for a while, something that can also help with BP (and other cardiovascular issues).

At the same time, I admitted to myself that my worsening lower respiratory issues (cough, wheezing) have begun only since I got into my higher B1 doses. .

I agree that until you have a more stable set of BP readings, itś hard to assess whether your status is truly improved. . .but this comes with the rule of thumb that when we alter our metabolism (and B1 is THE quintessential metabolism-affecting nutrient, being studied very intensively for its effects on mitochondrial function), we have to be patient, but also hopeful that steady-state improvement will set in.

Todayś ¨wisdom,¨ from me, moreover, is that when my wheezing and coughing got really bad yesterday, I finally admitted to myself that it might be something about my B1 protocol that itself was to blame, and sure enough, I discovered, with just a little research, that thiamine HCl, my primary thiamine source, is associated, in some people, with respiratory effects like the ones Iḿ experiencing. I had been careful to use MOSTLY HCl all these weeks, and only recently added in TTFD and benfotiamine, but as of today, I am going to try to replace my HCl thiamine with increasing strengths of allithiamine, which is naturally-occurring TTFD.

My hope is that I AM, in fact, a good responder to B1 therapy, but that I am also someone who gets side-effects from doses of HCl in the higher range.

The other new thought I have is that IF I cannot easily tolerate my ongoing synthetic TTFD and benfotiamine and/or I also experience some adverse reaction to allithiamine even at lower doses, I am going to try to use thiamine mononitrate (the cheap, most commercially used thiamine) as my upward-dosing protocol component.

None of this tinkering, btw, is at odds with the themes of B1 therapy, because itś well known that different people react very differently to all the various sources of thiamine, and that trial and error is typically necessary before one begins to get stable and improving.

The one objective, though, that I plan not to change is my goal of including at least one source of TTFD (either synthethic TTFD or allithiamine) in my protocol, to ensure relatively easy penetration of the blood-brain barrier.

In a situation like yours, I believe that the B1 gurus like Elliot Overton would probably say that you should look into the phenomenon known as paradoxical reaction, which can happen even with low doses of B1, and try to figure out whether your ups and downs may be associated with this. Overton believes we should tough it out through paradoxical reactions (which are essentially temporary aggravations of the condition being treated) and then resume upping our B1 dose once these have passed, but I now plan to follow the policy used among Parkinsonś patients who rely on B1, which is to reduce total B1 intake for a while any time there is an aggravation of the treated symptoms. (In Parkinsonś, it is apparently possible for some patients to arrest their disease, and even reverse some manifestations of it, at relatively low doses of B1 mononitrate taken sublingually. Wow!) The Parkinsonś community approach is not consistent with the Elliot Overton approach, but I respect it, as the Parkinsonś B1 protocol was developed by a brilliant neurologist in Italy who used the protocol with success before he passed away. His work is a ringing confirmation that even relatively low doses of thiamine mononitrate, famous for not easily crossing the blood-brain barrier, CAN, in fact, cross the barrier if taken in sufficient doses.

Again, itś all about trial and error for each individual.

If you don´t already have the book about thiamine and dysautonomia written Drs. Derrick Lonsdale and Chandler Marrs, and also the pdf produced and sold by practitioner Elliot Overton describing his approach to B1 therapy, maybe consider getting these. (They are pricey, alas.) I have learned, by reading both, that my path is not going to follow any one version of the protocols these materials describe, and that I will hit my stride primarily by careful self-observation and trial and error. I suspect you can achieve this, too

Fortunately, most forms of B1 are surprisingly inexpensive. My top picks so far are ThiActive B (by EO/Elliot Overton), which combines low doses of benfotiamine and synthetic TTFD with a backdrop of other B vitamins and some minerals, sublingual thiamine mononitrate (any brand . . though only one is widely available, at 100 mg/tab), and then either of the two commercially available allithiamine products (50 mg tabs). Again, I am swearing off thiamine HCl for now, and will not use benfotiamine beyond whatś in ThiActive B for the time being (because Dr. Lonsdale did not think very highly of benfotiamine).

My daily byword, in meantime, is to be patient, and to be as objective as possible in assessing whether the various B1s I am taking at any given time are really working for me. These principles should be able to take one to the finish line, I hope.

The more you read the more confusing it gets! I’d read/ seen E.Overton’s work on podcasts etc but had come to the conclusion from other research was that Benfotiamine was the most easily absorbed. I notice my B Complex which I normally take daily but had stopped to add B1 has 110 mg Thiamin HC, another brand I sometimes swop with 25mg Thiamin Mononitrate. Whereas I test my B12, folate, ferritin and vit D every 4-6 months due to existing thyroid disease, and the former two are reasonable , I had no reason to believe my B1 was low say prior to LC. Fortunately I am patient, but now getting restless after 4 1/2 years that Drs. are just abandoning LC sufferers and come up with stupid comments ignoring the main disabilitating symptoms. Good luck with your ‘Bs’.

I had a tilt table test and increased my HR by 30 beats (right on the edge of positive diagnosis). I asked to have the test stopped because of my horrible reaction - SOB, leg weakness, blurriness, dizzy, disoriented, etc - ended up crying. Anyway, my Neurologist diagnosed POTS because of my borderline reaction and my episode. I tried Mestonin and it helped for 4 months and then, stopped working. I, then, had a chemical EMG which was borderline, too, and had the same reaction as the Tilt Table Test. This time my cardiologist diagnosed POTS, too. I'm now trying the compression stockings, 3 L of water/day and increased salt intake. Not much of a difference. So I can try Midodrine, I am in the process of weaning myself off of a med I've been on forever for Fibromyalgia. The Fibro med is contraindicated in combination with Midodrine. Continuing the journey, as I have for 4 years.

I had POTS before COVID, but it got worse after COVID. And you’re right, there is a link between viral infection and POTS. My original onset occurred after a viral infection.

I’m not trying to minimize the importance of a provider who treats POTS, but there’s actually a lot you can do aside from medication and there are many online resources. There are tons of POTS blogs and organizations who publish guidance, recommendations, even exercise protocols. I’d hate for you to just be waiting until that 2026 appointment =(.

These are a few of the well-known National and international organizations: https://www.standinguptopots.org/
https://www.potsuk.org/managingpots/
Sadly, there aren’t enough autonomic neurologists or doctors who treat POTS before COVID. Now there are definitely not enough. 2026 is a long time.

The first-line treatments for POTS are drastically increasing your fluids (which increases your blood volume), especially with electrolytes if possible. If it’s safe for you to increase sodium, that helps too. I use a supplement called Klaralyte, specially designed for people with POTS and similar conditions. Compression leggings, tights, or abdominal binders help with the blood pooling that causes the dizziness, but I haven’t been able to tolerate it.

If your fatigue isn’t so bad and you can do even a tiny bit of exercise—swimming or starting in a supine position like a recumbent bike, or Pilates-like exercises down on the floor, even if you start at a few minutes and slowly increase. Over time, the cardio prompts your body to increase blood and blood flow which helps the symptoms.

If your cardiologist or even PCP is willing to work with you, much of the information about off-label use of medications for POTS is widely available and the medications are older ones that have been used before for other conditions. They might be willing to prescribe them if you don’t get enough relief from increasing fluids and/or salt and if that can get you over the hump to be able to start PT or exercise.

Not sure if you’re willing to travel, but you could try calling the POTS Clinic at Johns Hopkins to see if their wait list is open. I had to wait about 9 months to see one of the PAs for Dr. Tae Chung, who is the clinical director of their POTS Clinic and now is very involved in research and treatment of Long COVID. He’s been treating POTS since before COVID.

I live in the Midwest and it was totally worth it for me because as you pointed out—not many physicians treat POTS. Mayo Rochester misdiagnosed me and Mayo Jacksonville Autonomic Neurology declined to see me despite test results from Northwestern Medicine in Chicago. Access to specialists is really rough.

You could also look for a PT locally who treats POTS—there are more of them (in my experience) than physicians and I got a lot more practical advice from my PT than from the physicians I immediately saw.

There is hope—just getting a diagnosis can be a huge hurdle for those of us with POTS. It’s been said from surveys the average time it takes to get a diagnosis is 5 years or more. Now that you have an idea of what could be affecting you, it can give you a path for where to look for things you can do, but I know it’s hard. You’re definitely not alone.

Thank you for the helpful info. I will look into it. I can’t take the midodrine. It makes my LC insomnia worse. I am also on 5mg Lisinopril for high bp, but am cutting that in half. I think that my pcp will be okay that and just shot her a message through the portal.
I can’t do any cardio because that will more than likely throw me into LC PEM. Fatigue has been bad and have slowly worked my way up to taking walks when possible. There are multiple medical issues that I’m dealing with even prior to Covid, but Covid has turned everything upside down and it feels like I will need to further re-evaluate medical protocols that no longer work for me.
I live in the Midwest too. I also have my application in at the long covid clinic in Alabama. 3-5 months before they can look it over. 🙃

Hey, I also have worsened pots after covid and LC. I live in Raleigh and am also in the Duke system. Maybe we can connect?

Sorry, but I don’t live in North Carolina. 😕 I’m in Indiana, but have been an out-of-state patient at Duke since 2014. I have a rare primary immune deficiency and Duke is one of only a handful of medical places in the nation that is knowledgeable about it. When needed they direct my local doctors and monitor my health. I have 2 immunologists at Duke. They are really crazy busy there!

I understand! I have sarcoidosis also and attend the clinic there. Yes, too busy. Hard to get adequate care sometimes. Best of luck to you!

That’s interesting that the midodrine exacerbated your insomnia. Thanks for sharing; it just so happens that my neurologist told me that’s one thing he feels comfortable prescribing for me, but I don’t remember insomnia being mentioned as a side effect. Everything’s different though.

My PEM has improved slightly; thankfully I seem to be someone who can do cardio in micro-doses (like your walks) as long as I’m mindful of my “rate of perceived exertion.” I met with one of the long COVID PTs at Johns Hopkins where I was lucky to establish care in their POTS Clinic (their POTS team morphed into covering Long COVID as well), and the approach they’ve been using has been exercising in mico-doses, advising patients to go by their rate of perceived exertion (on a scale of 0-10), to aim for around an RPE of 3-5, for as long as you can even if it’s a few minutes, without causing symptoms.

The problem is that it’s tricky since PEM is delayed! The strategy has helped me though.

I’m in Illinois and have done a consultation with the Long COVID clinic at Northwestern Medicine downtown location. They brought on a PA within the last year, and I waited only 3 months for an appointment. It’s been helpful, but a lot still falls on us to coordinate things and they rely a lot on things they can prescribe. It’s kind of frustrating because even though they can diagnose someone, the treatments for stuff like fatigue and PEM and brain fog are still as limited as they were when I had it before COVID!

It’s nice to know there’s someone else out there with POTS that got worse after COVID…though I’m sorry that had to happen.

That happened to me too, and I wondered if I was imagining it or had fallen behind on the self-care measures I was doing. My care team diagnosed me with long COVID as well. At first they said, “These increases in symptoms are usually transient in nature,” until of course they weren’t. Wishing you all the best.