After Months Of A Racing Heart And Burning Feet, A COVID Long-Hauler Gets A Diagnosis (NPR, May 2021)

SNT Gatchaman

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A 54 yo nurse from San Diego describes how her previously fit-and-healthy life has been impacted by POTS, following COVID-19.

The long time to diagnosis is discussed, along with helpful treatments (Ivabradine), as well as lifestyle modifications. In particular:
  • fluid loading
  • extra salt
  • small frequent meals - low in carbohydrates
It is surprising (to me) how poorly recognised POTS is, despite it being so common in the ME/CFS experience. Obviously it has been minimised over many years (a familiar refrain). This is clearly changing - and now accelerating following COVID.

I suspect there will have to be development of sub-specialist cardiologist (/neurologist) led teams, to deal with the many cases now and on the horizon.

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After Months Of A Racing Heart And Burning Feet, A COVID Long-Hauler Gets A Diagnosis
 
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I suspect there will have to be development of sub-specialist cardiologist (/neurologist) led teams, to deal with the many cases now and on the horizon.
I do hope so! My experience with care providers around dysautonomia is that everyone keeps passing the buck because it's unclear which specialty 'owns' the condition.

Primare care physician: "I'm going to be honest with you, I don't know much about dysautonomia. I'll give you a referral to neurology."
Neurologist: "Dysautonomia is something a cardiologist deals with. I don't really know much about it."
Cardiologist: "Doctors keep sending me people with these symptoms, but I can't really do anything about them. This is something you should see a neurologist for."

And it is truly astonishing how little they know.
 

SNT Gatchaman

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Possibly, the best way forward would be a tertiary-level Multi-Disciplinary Team approach, with multiple specialists with an interest: driving diagnosis, patient stratification, therapy and research.

(ME/CFS writ large requires this at a further order of magnitude --edit/ once the science is more fully established).
 
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Revel

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I suspect there will have to be development of sub-specialist cardiologist
I look forward with interest how this manifests within the NHS.

I saw 4 cardiologists over the years. None of them had a clue regarding POTS. They all misdiagnosed me with "anxiety". The last one was particularly patronising, stating that I should "go home, take up a hobby and stop obsessing" about my health.

Finally diagnosed after I persuaded my GP to refer me to a stroke specialist, the only doctor in the county who had the remotest understanding of dysautonomia (he subsequently proved to be of little use, treatment-wise, but at least I received the correct diagnosis).
 

Gingergrrl

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Every time there is a story re: “Long COVID” on the news here, they say... “We’ll be right back after the commercial break to discuss a brand new, never been seen before, mystery illness among Long COVID sufferers...”

And every time I say to myself, “it’s going to be POTS”... and lo and behold, every time, I am correct! 🤦🏻‍♀️😵
 

bertiedog

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I can tick virtually every box regarding the symptoms of Adrenergic POTS and sometimes wonder if this is what I have had all along and that in fact I don't have ME/CFS, I really don't know.

What has really made me wonder is the fact POTS often starts up 2 -3 weeks AFTER a virus or infection and this is exactly what happened with me. I had 2 weeks of flu and couldn't recover in 1979 and when I thought I was getting over it the vertigo/migraines started and with these I had horrendous heart racing which I couldn't control. The anxiety attacks were very distressing along with the symptoms and I remember being bed bound on many occasions.. These symptoms plagued my life ever after only improving in 2001 when I saw a private doctor who turned out to be a trained Endo who diagnosed me with adrenal insufficiency and Hypothyroidism.

I started a low dose steroid and Armour and ever since then I have never had true vertigo to the extent I used to get it thank God. I still do get bouts of dizziness when my cortisol goes low but it is nothing like I used to get and now I know why its happening and can sort it out within 20 minutes.

I did wonder if these very frequent bouts of vertigo with weakness wore my adrenals away but I think I did have a fault there anyway after a very large loss of blood immediately after childbirth in 1975 leaving me with a mild Sheehan's Syndrome though it wasn't formally diagnosed.

What also improved was my bp once on the steroid etc, it used to frequently be about 85/50 and I would see a sort of greying to my vision which was scary. That never happens now. The only help I ever got from the NHS around 1990 was low dose Propananol and this always helped me to feel better and still does but I think the GP at the time only gave it to me thinking I was suffering from an anxiety state (to be honest I used to think that was all I had but couldn't understand why these "attacks" kept coming.

Needless to say I have never suffered with anxiety since my hormone treatment unless I run low on cortisol which sometimes happens at night and I don't clue up as to what is happening.

Finally my Fitbit shows that the average number of steps I have been doing is around 10,200 this past week and I don't see how I can have ME and do this amount of steps. I still suffer daily with debilitating symptoms and inability to be upright for more than 4 hours maximum often far less especially after eating, but my oxygen concentration and lying horizontally will help me to feel better within an hour or so but probably I really should be resting for longer before I start moving around again.

Hope I haven't derailed the thread, if so perhaps I should start a new one?

Pam
 

Gingergrrl

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I can tick virtually every box regarding the symptoms of Adrenergic POTS and sometimes wonder if this is what I have had all along and that in fact I don't have ME/CFS, I really don't know.
It is an interesting question and I went through the same thing myself in 2016 when my doctor and I realized that ME/CFS was not my diagnosis after all. Can you remind me if you have been tested for the various autoantibodies that correlate with Autoimmune POTS (through Cell Trend Lab in Germany)?

What has really made me wonder is the fact POTS often starts up 2 -3 weeks AFTER a virus or infection and this is exactly what happened with me.
It is exactly what happened in my case as well (in Jan 2013).

I started a low dose steroid and Armour
I also take low dose steroid, Cortef (hydrocortisone) and Armour (as you already know ;)). I also take several other meds & supplements daily.

What also improved was my bp once on the steroid etc, it used to frequently be about 85/50
My BP was 80/50 for 3-4 years and what turned this around (permanently) in my case was IVIG.

The only help I ever got from the NHS around 1990 was low dose Propananol
In my case, I take low dose Atenolol which is very similar except it is a cardio-selective beta blocker.

Finally my Fitbit shows that the average number of steps I have been doing is around 10,200 this past week and I don't see how I can have ME and do this amount of steps.
Do you mean that you are currently walking an average of 10,200 steps every DAY?! If so, that means you are walking over 5 miles per day which is incredible and far surpasses what I am able to do. I would be able to do this on an isolated day (if I literally HAD to :yuck:) but then I would need to completely rest the next 1-2 days to recover.

I am currently able to walk 1-2 miles per day (again if I HAD to :xeyes:!) but the ideal pace for me which improves my functioning without causing negative consequences is for me to walk 1-2 miles three times per week (so I always have a day to rest in between my walks). I am thrilled with my current ability to walk after 4 years of using a wheelchair and am not complaining whatsoever! But I am in awe that you are walking 5 miles per day if I am understanding you correctly (which I might not be)?!

Hope I haven't derailed the thread, if so perhaps I should start a new one?
I don't think you have derailed the thread and think it is all relevant to those suffering from Long COVID & POTS. But if you do start another thread on this topic, please tag me :hug:. My situation was very similar to yours and I think the main differences are that you had vertigo & migraines (which I never had) and I had severe progressive muscle weakness plus MCAS/allergic reactions. But we both had post-viral development of POTS and the adrenal insufficiency & thyroid issues. Now I do wonder if ME/CFS is your diagnosis (and of course I do not know).
 

bertiedog

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t is an interesting question and I went through the same thing myself in 2016 when my doctor and I realized that ME/CFS was not my diagnosis after all. Can you remind me if you have been tested for the various autoantibodies that correlate with Autoimmune POTS (through Cell Trend Lab in Germany)?
Hi @Gingergrrl No I haven't been tested at all. At the Dysautonomia Conference last weekend I listened to a few of the expert speakers and one of them was of the opinion that he couldn't recommend the Cell Trend test because in research he had done, healthy individuals also came up with many of the antibodies tested. He therefore felt that more research was needed but couldn't recommend this test at present.

That is not to say that he didn't believe antibodies were raised with POTS he just wasn't convinced that particular test was good enough at present.

In August Dysautonomia International are going to be putting up all the talks on their website which you might be interested in . It really is a great annual Conference that appears to be free though they do ask for a donation which I have been more than happy to give.

My BP was 80/50 for 3-4 years and what turned this around (permanently) in my case was IVIG.
Several of the speakers mentioned IVIG being helpful for many of their patients btw.

Do you mean that you are currently walking an average of 10,200 steps every DAY
Well I did last week and my Fitbit called it 4.1 miles daily on average but I did develop very bad leg muscles by the beginning of this week so have done less this week but still up to nearly 9000 daily. Today though its under 8000 cos I have got a bit of a respiratory virus.

I don't think for a minute I am actually walking that distance, I think the Fitbit that I have got indicates I am doing steps when I am just moving my arms so really it isn't anything like that amount I am sure. What it does do is to show that I am fairly active but it does give a false picture. This week has been really difficult because it turned very hot all week and so I suffered badly by Tuesday and needed half a Fludrocortisone which made a huge difference. My heart rate was up all the time and I couldn't stop sweating plus my leg muscles wouldn't stop hurting. The Fludro sorted most of it out and I haven't needed anymore.

To be honest I find the dosing of Fludrocortisone really difficult. Most of the time I don't need any but once summer comes things get more difficult. I cannot take it regularly because it pushes my bp up too much, at least in the morning after taking it but it did settle down in the afternoon.

I am currently able to walk 1-2 miles per day (again if I HAD to :xeyes:!) but the ideal pace for me which improves my functioning without causing negative consequences is for me to walk 1-2 miles three times per week (so I always have a day to rest in between my walks). I am thrilled with my current ability to walk after 4 years of using a wheelchair and am not complaining whatsoever! But I am in awe that you are walking 5 miles per day if I am understanding you correctly (which I might not be)?!
I think your situation is very different from mine in that you had to use a wheelchair from what I remember for a couple of years and so you couldn't exercise at all. Although I had periods of being bed bound when first sick in 1980 that gradually improved and my strength came back even though the vertigo attacks/migraines didn't disappear so I didn't have very long periods of not having short daily walks and that has continued but obviously there are many days when I cannot walk Snoopy, yesterday was one of them.

My legs were poor anyway in the morning but I really needed to go and pick up an order from a fairly local shop which meant parking a short distance away and walking there. It was also quite hot and basically it was only will power that got me back to the car but my nervous system was screaming at me to get in the cool and lie down. I just couldn't recover enough to take Snoopy out later in the day like I normally would so just had to rest. Thankfully apart from having an early morning mild migraine (which I am sure is connected) my legs recovered but it is also cooler thankfully.

After reading many of the posts on the POTS UK Facebook group I realise I am extremely fortunate to have had some treatment because many on there aren't getting any help at all from their GPs, in fact they seem to be gaslighted. It seems to be an appalling situation and not unlike the way ME patients are treated in the UK.

Pam
 

Woof!

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cnn.com has a new opinion column piece today, written by one of their reporters with long Covid - Morgan Stephens. Of course, it makes it sound like the symptoms have never been seen before - sigh. If I knew how to reach her, I'd recommend she visit PR.
 

hapl808

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cnn.com has a new opinion column piece today, written by one of their reporters with long Covid - Morgan Stephens. Of course, it makes it sound like the symptoms have never been seen before - sigh. If I knew how to reach her, I'd recommend she visit PR.
I have to say I have trouble not despising all these people when they ignore the not insignificant number of us that have been seeing GPs, ID specialists, rheumatologists, acupuncturists, TCM practitioners, naturopaths, and any other person we could think of for years or decades describing these EXACT symptoms in excruciating details with logs of symptoms and tests. And been ignored, or the butt of jokes, or labeled as anxious or hypochondriac.

Now if they find relief they will write breathless opinion pieces about how they solved the scourge of Long Covid.

The whole thing is offensive and exhausting.
 

Gingergrrl

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@bertiedog I am going to reply to your post #13 by PM because I started to reply and realized that it was completely taking this thread off-track from the original topic of Long COVID & POTS! I'll copy & paste it to our existing PM and answer everything you mentioned there (re: Cell Trend testing, IVIG, number of steps walked per day, etc) :hug:
 

Timaca

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cnn.com has a new opinion column piece today, written by one of their reporters with long Covid - Morgan Stephens. Of course, it makes it sound like the symptoms have never been seen before - sigh. If I knew how to reach her, I'd recommend she visit PR.
Hi~ I contacted Morgan Stephens through her website. https://www.morganstephens.org/contact.html I wanted to let her know about this article: https://www.healthrising.org/blog/2021/07/21/patterson-cracked-long-covid/ Maybe you can also contact her and let her know about PR! :)