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Failed tilt table test

Posted by 2roses @2roses, Jul 30 1:08pm

Had Covid in Dec. of 21 and then again in August of 22. Multiple symptoms and illness left its wake. Received a diagnosis of long Covid from my immunologist at Duke in NC in June of this year. They also put in a referral for me within the Duke system with a cardiologist who specializes in POTS and long Covid. The earliest they could get me in with her is March of 2026, so I contacted my local cardiologist to see if he could do the tilt table test. He did.
Bad Dizzy spells started in April and pcp has me on Meclizine which helps.
Did the tilt table test today and failed. I’m starting a new Rx for it. My local cardiologist said that there is no one in our area qualified to give a POTS diagnosis, so keep the far reaching appointment at Duke.
From what I have read, there is a suspected correlation between having Covid and then developing POTS.
Anyone else experiencing something like POTS since having Covid?

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lorivwebb | @lorivwebb | Aug 15 7:32pm
In reply to @emo "It’s nice to know there’s someone else out there with POTS that got worse after COVID…though..." + (show)
@emo

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.

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Yes, same with me 2+ years in still way worse baseline in pots and LC diagnosis. It’s been tough. There’s a lot of us in the long covid fb groups. A lot.

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2roses | @2roses | Aug 17 10:20am
In reply to @emo "That’s interesting that the midodrine exacerbated your insomnia. Thanks for sharing; it just so happens that..." + (show)
@emo

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!

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The bad insomnia came from getting Covid. The midodrine took my bp top number from 105-106 up to 131-140. Stopped the midodrine. I halved my 5 mg dose of Lisinopril and it brought my bp down to the 120’s.
The insomnia may be greatly influenced by Mast Cell Activation syndrome. I have a telehealth visit at a successful LC clinic in October. After speaking with a couple of the staff, they feel like I most likely have Mast Cell Activation Syndrome which causes all kinds of reactions in the body. The possible triggers are mind blowing. I can no longer tolerate antibiotics, NSAIDs, some of my Rx meds and most all of my supplements. They make me very sick and give me anaphylactic-like reactions.
The clinic said that they are seeing much Mast Cell Activation Syndrome with their LC patients.

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beachbum | @arichards3 | Aug 18 8:16am

I also failed my first Tilt Table test administered locally in 2022. At the time I was following local LC guidance to deal with my symptoms. In September 2023 I had my second Tilt Table at Mayo Rochester and passed. Medical professionals there and locally said that was a sign of my Autonomic Nervous System repairing itself. I don’t have POTS and haven’t had an indication of it. POTS from what I’ve read has definite symptoms. One of my local medical professionals has POTS and she agreed I didn’t. I wouldn’t quickly jump to a POTS diagnosis unless you’ve compared/contrasted your symptoms to POTS reading.

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2roses | @2roses | Aug 18 6:48pm
In reply to @arichards3 "I also failed my first Tilt Table test administered locally in 2022. At the time I..." + (show)
@arichards3

I also failed my first Tilt Table test administered locally in 2022. At the time I was following local LC guidance to deal with my symptoms. In September 2023 I had my second Tilt Table at Mayo Rochester and passed. Medical professionals there and locally said that was a sign of my Autonomic Nervous System repairing itself. I don’t have POTS and haven’t had an indication of it. POTS from what I’ve read has definite symptoms. One of my local medical professionals has POTS and she agreed I didn’t. I wouldn’t quickly jump to a POTS diagnosis unless you’ve compared/contrasted your symptoms to POTS reading.

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Good to hear that you passed your second tilt table test. Haven’t really called myself as having POTS. Just claimed to have failed the tilt table test. There’s no cardiologist in the area qualified to make that determination and Duke can’t get me in with their POTS cardiologist until March of 2026. I am starting telehealth with a long covid clinic in October. From what they have heard so far, I have the symptoms of Mast Cell Activation syndrome. They have been seeing that with LC.

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