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So I tested positive for Covid the weekend after New Year.  I thought it might be useful to explain what it was like to have POTS and Covid.

FIrst, to start off with it is very hard to tell that you have Covid!  For the first 10 days, I had no cough or loss of smell or taste and although I did have a temperature it was only at night and no different to my usual dysautonomia night sweats which I generally get a few times a month, more often if I'm in a flare.  As no-one else in the family was ill apart from my 85 year old grandmother who a few days earlier complained of being very tired, for the first few days I assumed I was just in a flare and Granny had done too much getting ready for Christmas.  It was only when my parents and brother also started to feel off colour that we started thinking it might be something else but that was a few days later!  My Granny had had to go to hospital outpatients for a biopsy on a suspected skin cancer and although she took every precaution we can only assume she picked it up there and passed it on to the rest of us as she hadn't left the house since September and like me, had had contact with no-one else apart from immediate family. 

Next, my Covid symptoms were no worse than anyone else's.  After about 5 days of just feeling tired and having a temperature at night, I then developed extremely bad nausea (I vomited up everything I ate for 5 days and was sick after breakfast and lunch for a further 5), diarrhoea, awful headaches verging on migraines, dizziness, dry mouth and eyes, really stuffy, painful sinuses, a terrible pressure in my head, insomnia, sore throat and ears and extreme fatigue but so did my Dad who is mid-60s with no underlying health issues.  My Mum and brother were less severely affected but they still were pretty poorly.  My grandmother was worse as after a week of feeling tired she developed pneumonia but she was prescribed a strong oral antibiotic and although very ill she was not hospitalised.  Apart from Granny none of us had any real breathing issues - I was a little short of breath some evenings but I was very bradycardic so it was hard to tell if it was down to that or Covid.  I should point out that my POTS is secondary to hEDS rather than post-viral so that may have an impact on how my immune system dealt with it.  3 weeks later and most of my Covid symptoms have gone - I still have a cough, a mild sore throat and very little appetite but with all the adrenaline in my system that's not really surprising. 

I had some trouble with Track and Trace deciding when my self-isolation should end - the person I spoke to said she had never met anyone who routinely ran a temperature before!  Normally the rules are that you should self-isolate for 10 days from first symptoms and stay self-isolating if you still had a temperature at the end of 10 days until you have not had a temperature for 72 hours.  I still had a temperature at night well into week 3 but whether it was a covid temperature or a dysautonomia temperature I have no idea.  As I'm mainly housebound anyway, it was only if I needed a doctor or to go to hospital that it really mattered.  I was told to speak to my GP and we agreed that 14 days from first symptoms was probably long enough to make sure I was no longer infectious but I should tell any medical practitioner who was treating me so they could take additional precautions just in case. 

Covid has triggered a really bad flare - when the diarrhoea and vomiting hit so did the POTS flare, not helped by the fact it was very hard to remain hydrated.  Three weeks on and the POTS flare is still continuing - I am tremoring all the time, and having horrible Tourette- like jerks due to the high amount of adrenaline flooding my system. My BP which is normally 100/80 standing has dropped to 80/65, my HR which is normally 140ish is more like 160ish and I'm having adrenaline surges all day and night. For the first few days when I just felt tired, my bradycardia was much improved - at bedtime my HR was around 60 rather than low 40s but once the POTS flare hit the bradycardia came back full force.

Advice for others?  Suspect Covid if you feel different from normal, although good luck getting a test in the UK - I wasn't able to travel for a test and home tests are in extremely high demand. However bad you feel, try to get out of bed for at least part of the day, even if you are just collapsing on the couch.  I tried to get up mid morning, went back to bed for the afternoon and then got up early evening as I was very worried about becoming deconditioned.  I also did some basic stretches and physio exercises most days even if it was just for 5 minutes at a time.  Drink if you can't eat - we lived on soup for several days and I depended heavily on rehydration sachets.  

I'm happy to answer any questions anyone has but the moral of the story is I got through it so keep calm if you do test positive.

 

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@cmep37 I am so sorry you have to go through that! Thank you for sharing your experience - it confirms what I was told: simply having POTS does not put at risk for worse symptoms form COVID but we will most likely experience an epxected bad flare from being ill. 

What you are doing to make it through the flare is exactly what we are supposed to do, and I am glad you emphasized on doing both rest and getting up regularly to prevent deconditioning. Since we feel so miserable when in a flare getting up is a challenge - but a necessary one. 

Wishing you a speedy recovery and best wishes!!!!! Hang in there. 

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Thank you - I am extremely grateful that none of my family needed to go to hospital and am convinced that the Vitamin D supplements my Granny has taken since the start of the pandemic helped her.  My Dad's friend died of it last week (there are loads of cases in our area - we don't think we infected anyone thankfully) he was in his early 70s and still working fulltime with no major health issues.   His wife who also tested positive has COPD, yet she had barely any symptoms.

I keep telling myself that this flare will pass - my blood pressure around 8pm last night though was 65/42 - a new low for me, I did not feel well!  15 minutes later and it was 100/85 - don't you love autonomic chaos?!

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I am so sorry that you went through this and are now dealing with a severe flare. How frightening for all of you. I sincerely hope that you recover from the flare as quickly as possible. My sincere thanks for telling us about your experience. 

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