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Ups and downs

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Edited by Annie Storkey, Friday, 3 Jul 2020, 12:14

Well, I'm now 15 weeks post-covid and I still have the post-viral symptoms of Postural Orthostatic Tachycardia Syndrome (POTS). But my pulse is noticably improving, I am regularly walking two miles in the morning with a normal walking pulse. A brisk walking pulse should be around 110 and I am generally below that; if it creeps higher I stand still and it immediately goes down again which seems to me a healthy response (POTS symptoms tend towards pulse rates being stubborn at returning to normal). My standing pulse is also much better and I can go whole days with a normal pulse.

Absurdly, as my pulse has got better the lightheadedness has got worse. I am no longer having to take gasps of breath when seated as I was a few weeks ago but I definitely lightheaded more often and have 'brain fog', and more prone to morning headaches than before. Ironically, lightheadedness in POTS occurs mainly in a seated position and it is presumed to be due to pooling of blood in the lower legs at rest. The solution is to get up regularly and keep the legs moving while sitting. Good job my standing pulse has improved! I actually find it helpful to work while feeling like this as it distracts me, even if I am not as productive as usual.

I'm hoping all this is just a lag in my system as it gets used to me no longer having as much tachycardia. I'm going to increase the cardio exercise to see if this will stimulate my venous return more. I've also started on low dose rehydration tablets. When I developed POTS I increased my fluids dramatically as per the recommended regime but did not increase my salt intake alongside this as I appear to have a slightly raised blood pressure (BP) post-covid. But my GP is unconcerned about my BP and I'm wondering if my electrolytes are now out of kilter and if I would feel better with extra salt and minerals, as well as retain fluids better.

Anyway, the improvement in pulse rate seems like a positive step forward in recovery.

Annie

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When postural tachycardia really is postural

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Edited by Annie Storkey, Friday, 12 Jun 2020, 12:14

It's been over 12 weeks now since I developed Covid-19 and although I recovered from the infection in just over 2 weeks I still have the post-viral complication of presumed postural orthostatic tachycardia syndrome (POTS). I've blogged already about some of my symptoms (as a lecturer in health I'm somewhat fascinated by how the body behaves!) but today I thought I'd focus on something I've only recently noticed - the affect of posture.

I noticed several weeks ago that I occasionally got mild air hunger (large intake of breath) when sitting at my computer, and that this apparently was common in POTS. It's a very odd symptom, given the condition, as the tachycardia occurs to improve oxygenation when standing. Clearly both responses are to improve oxygenation but they are very different.

But last week when I took a break from work/study, I found myself sitting at the kitchen table hunched over my iPad and getting increasingly lightheaded and gasping for breath. It was quite distressing as it felt like my breathing was deteriorating, when until then I had only noticed it getting better. I then realised that it improved with better posture, which would explain why I had it then but not sat on the sofa with the iPad in my hand. Interesting that it's positional, I thought, and carried on with life.

Then on Tuesday I did my yoga class. Until recently my post-covid fitness levels haven't allowed me to do a whole session without tachycardia but I'm now walking several miles a day and feel much fitter. I was pleased to do a whole class of mainly standing poses and have no tachycardia. But wait, I have postural tachycardia and can get a fast pulse just from lifting my arms up -why was it okay to do standing yoga? I suspected that the strict yoga posture was the answer and reflected on my walking tachycardia. I had noticed recently that my tachycardia when out for a walk is better when I'm thinking about it but my pulse starts galloping when my mind wanders, only that day it had suddenly leapt from 104 to 135 for no apparent reason. Was it because my posture dropped?

I tried it out today and worked really hard on my posture when walking; chest out, shoulders back and down. And my pulse stayed below 110 (normal walking pulse) throughout my 2 mile walk. Now, this might be because I walk slower when concentrating on posture but I've ordered a simple back brace and will explore this further. It might be a breakthrough at managing my pulse rate.

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Getting better

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Edited by Annie Storkey, Friday, 12 Jun 2020, 11:58

Today my postural tachycardia seems much improved. It is normal both standing and pottering around the house and when I went for a walk it was within the normal bounds of light exercise (some rise is expected). What was most significant is that it dropped down to normal immediately on rest, which would seem to me to indicate a normal response to exertion. It even has slightly improved when walking upstairs, though it still doesn't like me raising my arms (getting dressed always causes tachycardia). I've also been less fatigued the last few days, despite walking further, and I managed nearly 2 miles this morning.

Obviously I know this might not last; I got covid nearly 10 weeks ago and know how symptoms vary from day to day. But these are all hopeful signs that my routine of increased fluids and increasing light exercise are helping.

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Postural Orthostatic Tachycardia Syndrome

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Edited by Annie Storkey, Friday, 12 Jun 2020, 11:58

My tachycardia is postural, my resting pulse is around 65 and it goes up to 90 when I stand up - when I first noticed it was up to 128 just walking around the house. It is exacerbated by exercise (walking upstairs can raise it to 110, going for a walk to 125, once 150), raising my arms (carrying laundry downstairs or sitting to chop vegetables raises it to 125, even brushing my teeth raises it), heat (gardening on a warm day made it 140), and eating (rise to 90 when seated). Alcohol sometimes exacerbates it, caffeine doesn’t and might well improve it.

The paramedic on my second trip to casualty did a seated and standing pulse and BP and suggested Postural Orthostatic Tachycardia Syndome. I have since researched this (I am an ex-nurse) and it fits my symptoms and circumstances, especially as a post-viral autonomic response. I have instigated suggested lifestyle changes including increased fluid intake, slow transition on rising, wearing light compression running leggings, gentle yoga and taking a daily morning walk with regular rests and water. 

I think water intake has had an enormous effect. Taking water 20 minutes before getting up in the morning has resulted in a normal pulse on rising. I can now, most days, walk around the house without tachycardia as long as I keep my fluid intake up. My morning walk pulse is gradually improving too. Arm raising is still an issue but I am aiming to increase my upper body strength with seated and supine yoga.

I have to avoid fatigue, though. If I push myself too far I can get fatigue for the next few hours or even the next day. The best solution for the tachycardia is to sit on the floor cross legged, that results in an immediate drop in pulse. If I am outside I stand with legs crossed.

Obviously I am in a better state than many people recovering from covid as I was not hospitalised and did not spend my symptomatic two weeks on bed rest so my body is not very deconditioned. I am well enough to do my usual online teaching job and carry out activities of daily living despite my tachycardia. But I thought I would share my experience of dealing with post-covid tachycardia in the hope that it might be useful for other people.

(Hopefully once I’ve beaten the tachycardia I can find a solution to my strange lung pressure issue! I can’t bear high air pressure and get air hunger, especially at rest. I’m hoping increased exercise will lead to greater lung expansion)


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Standing up

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Edited by Annie Storkey, Friday, 12 Jun 2020, 11:58

Today, for the second morning, I got up and did not have postural tachycardia. The key is to drink a glass of water 20 minutes before rising and to get up slowly, keeping the knees bent and slightly leaning forward.

I have also managed to walk around the house without getting tachycardia, there's a small rise in pulse going upstairs but within normal limits. As long as I keep my fluids up I feel I'm winning the battle. Going for walks is proving more of a challenge, I'm trying to keep the pulse below 110 (for a gentle amble) and this is fine for the first 5 minutes; I slow and drink water when it starts heading for 110. It can suddenly jump to 120 and I stop and cross my legs over, as I know if it sustains at 120 it will trigger fatigue. It is so unpredictable, it can be 120 and then drop to 85 on standing still and then stays at 95. There seems to be no rhyme or reason. I'm guessing variations of fluid levels alter it. Last night it suddenly shot to 150 while walking despite me not feeling any different. I'm hoping that, just like my standing pulse has improved, my walking pulse will also get better over time as my venous return improves.

Then it will be upper body I need to work on. I currently get a rise in pulse every time I raise my arms, even brushing my teeth gives a slight rise and getting dressed also triggers it, let alone doing the laundry or sitting to chop vegetables. But I figure upper body strength will be helped by Iyengar yoga and I need to practice getting back to standing poses to get the full benefit. At the moment at home when I get tachycardia I sit crossed legged on the floor and it returns to normal - I managed to play boules sitting down at the weekend smile

Annie

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Post-covid recovery

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Edited by Annie Storkey, Friday, 12 Jun 2020, 11:59

This morning I stood up and did not have tachycardia. I even managed to walk to the bathroom with a normal pulse. Admittedly it did increase when I brushed my teeth (and more so when I got dressed). But this is quite a development. Let me explain.

On the 17th March 2020, a couple of days before lockdown, my 15 year old developed a cough. Just a mild occasional one, not a hacking cough, but the warning signs were there and we went into isolation. He never developed more than this mild cough, though it went on for at least 6 weeks. Several of his friends also had it and apparently a parent of a fellow pupil had a positive covid diagnosis.

The next day I had a cough and sore throat so called in sick. I had mild fatigue but never developed a fever. I felt better after a few days and told my manager I would be back after a week and I duly returned to work. Later that evening I developed shortness of breath and chest tightness. This later developed into a central chest pressure where it felt I might stop breathing, exacerbated by exercise. But on day 16 I felt better. On day 17 I even phoned a student and a work colleague, with just mild shortness of breath.

On day 18 it all changed. I was overcome with extreme fatigue and shortness of breath on exertion. Over the next few days I developed anxiety and panic attacks. Then the fog lifted and I realised that what I really had was tachycardia. I had tachycardia when standing up and moving around and it seemed to be getting worse. It appeared to be autonomic, as I also developed a severe aversion to food which was clearly not gastric; I had to do breathing exercises in order to eat. Eventually I could stand it no more and went to casualty.

After a thorough check up all they could find was sinus tachycardia with a mild rise in blood pressure. The doctor suggested maybe a mild myocarditis which would improve on bed rest. As one of my bloods was slightly raised I was started on anti-coagulants and would have a lung scan to check for a clot on Monday.

The next day I felt awful, presumable due to the anti-coagulants. I spent the day in bed (where, incidentally, my pulse stayed in the 60s) but got up in the evening. I had a massive surge in pulse with chest pain and resultant panic attack and ended up in casualty again. Here an x-ray was taken and the doctor reassured me that he did not think there was anything wrong with my heart or lungs (I think he thought I was just an anxious patient, a common problem for tachycardia patients but I am also bipolar which colours perceptions). 

The lung scan was normal and the doctor in the acute admissions clinic sympathetic and interested. I’m on a waiting list for a 24 hour ECG and echocardiogram.

The paramedic earlier had told me he thought I had Postural Orthostatic Tachycardia Syndrome (POTS) and I looked it up; it fitted everything I was experiencing. The tachycardia on standing and moving around, exacerbated by lifting my arms (chopping vegetables gives me a pulse of 125!), the shortness of breath and chest pain, even the panic attacks. Over the next few weeks I recognised other symptoms such as tachycardia after eating, heat intolerance (my record tachycardia was 140 on the VE bank holiday due to gardening in the sun) and air hunger when sitting and concentrating. It is now 8 1/2 weeks since I developed my assumed covid symptoms yet I’m still recovering from the experience. The prognosis for POTS due to a post-viral Dysautonomia is generally good and I instigated rehabilitative techniques early, an advantage of being an ex-nurse who uses cognitive behavioural therapy daily to manage mental health. But I’ll discuss that in another thread.

Annie


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