Living with PoTS and dysautonomia

I was writing a review of a book on this topic, yesterday, when it occurred to me that some of what I had to say about it should really be shared on this website. Of course, I’ve talked about PoTS and other forms of dysautonomia before as something I deal with myself, but I’ve never really sat down and addressed what its like to live with these conditions, and here lies the crux of the matter. Perhaps more than any other aspect of chronic illness I have ever had to deal with, including chronic unrelenting pain, dysautonomia has the ability to throw your entire life into disarray, permeating every single aspect of your life in ways that can be as invisible to the casual bystander as they are devastating.

“Many times people with chronic illnesses fall into depressive periods. Some consider taking their life for they live in terrible pain (joint pain, stomach aches, migraines, and dizziness). It is difficult going through the day. Hope is also often in short supply. They feel that the pain will be unrelenting”. This is the harsh reality confronted by Jodi Epstein Rhum in her book “Together We Stand: Riding the Waves of Dysautonomia”, a reality where precious little is yet understood about the condition (here’s hoping that is about to change as long-haul covid brings dysautonomia more clearly into focus as a far wider population report having it than previously) and so it is left to useful handbooks like her’s, and anything else those of us living with the condition can share, to spread the better news.

What dysautonomia does to a person’s life

What’s the big deal? Well, so many people still haven’t even heard of PoTS or dysautonomia, its near-impossible to describe in a way that they might relate to, then its likely that at least many if not all of the people that surround the individual with it (from teachers/colleagues to friends and even family members) will disbelieve the condition or think it is being grossly exaggerated, plus doctors will often scratch their heads and have nothing to offer, as has happened to me. I sought a consultation just a few months ago and was greeting with an attitude that only thinly disguised the doctor’s belief that I was a hypochondriac with far too much time on my hands and still precious little sign of the referal she promised me under duress (I live in the UK and this is fairly typical when it comes to “unseen” illnesses). You quickly lose the confidence or stamina to go back for more help when this is the attitude you meet.

If you have it, your life will likely have become much smaller, more cautious, much more prone to “crashes” from minor episodes of overdoing it (which look nothing like other people’s idea of strenuous behaviour!) and you will spend much of it in a state of subliminal if not overt mourning for the life you once had. You will recall times when you confidently took your car out on the road. I hardly drive anymore, though I used to love it, and consign myself to very short journeys close to home, as a result of which I just declined the opportunity to take part in an exhibition. This is something I used to do every year at this time but I know, after much soul-searching, that I have been too unwell, and unpredictable, lately to take part so close to other demands in my family life (also because I would struggle to “muck -in” at the event, which relies on volunteers). You may harken back to times when you enjoyed going on long hikes with your family or predictably committing to take part in celebrations and gatherings without risk you will have to bail out at the last minute. I have a big family wedding coming up in London over the summer and this presents many problems to someone with dysautonomia, from the likelihood of many triggers (from tiredness to allergies) to the need to factor in places I can swoon into when lying-down time is needed. This means we are booked into the costly wedding venue itself for two nights, rather than somewhere far more affordable, because I will really need that room at close quarters to tumble back into at regular intervals throughout the event (and I will be ducking out of some of the more impromptu gatherings). I also have my daughter’s graduation ceremony in the same month, during the likely hottest part of the year, involving lots of crowds, standing and sitting on hard pews, weather extremes always being a challenge for dysautonomic chaos. These are events I should be wholeheartedly looking forwards to but which, in my life, present far more challenge and reason to be wary than most people could even grasp.

Many (many) symptoms – and how its like the effect of space travel!

I won’t go into all the symptoms in detail here: if you or someone you care about is living with PoTs or other form of dysautomia, you will likely have familiarised yourself with most if not all of them by now. Suffice it is to say they cover a very broad range indeed (hence how barmy we can sound to other people!) from dizziness and syncope to all kinds of gastrointestinal issues and random waves of nausea, to temperature dysregulation (think hot flush to freezing in one quick move!), to proprioception challenges and clumsiness like walking drunk, to severe migraines, neuralgia and vision issues, to arrhythmia and heart palpitations, to allergies and mast cell disorder, to anaemia, anxiety and swinging blood pressure (both high and low, often in the same person, as per me), to blood pooling in the lower limbs, to functional bladder and bowel issues such as constipation (from downwards pressure on standing as well as from those gastro issues I already mentioned), to brain fog, to chronic dehydration and exercise intolerance (even “sitting upright” intolerance on some days!) , to burning feet and burning tongue, to numb or bloated fingers and feet, to insomnia and sleep depravation, to panic attacks, to joint pain and nerve constriction, to much worsened hormone issues, to fibromyalgia and such chronic fatigue you can’t think straight or get out of a chair when it suddenly hits you. When you think about it, the autonomic system regulates pretty much everything that goes on in the body…so when it becomes disregulated or chaotic, anything is possible, like someone spinning all the dials and switching on and off all the ligth switches for “fun”!

As Rhum points out in her book “long lasting symptoms and some of the pathophysiological features characterizing POTS are similar to those observed in healthy humans shortly after return from space or following prolonged bed rest. The latter are clinical models of both gravitational and physical deconditioning. For instance, an increased orthostatic tachycardia with reduced orthostatic stability, fatigue and lightheadedness have been described in healthy subjects following bed rest confinement….However, in these syndromes a chronic sympathetic over-activity may contribute to sustain the contraction of the vascular space” (Rhum – “Together we Stand: Riding the Wave of Dysautonomia”).

So, what can you do about this?

Remain friends with gravity

Here’s one thing you need to be aware of with these conditions: deconditioning makes them much worse. Your challenge is, you must keep together your core strength and general fitness in order to ride them and, hopefully, through them. This can seem like the very thing that it’s impossible to do when you have something like PoTS because it is, after all, an orthostatic intolerance disorder, therefore its symptoms tend to intensify when standing or sitting and lessen when lying down. However, remember what I just said, without your core strength and regularly working on rebuilding that gravity tolerance, your symptoms are most likely to go only one way.

Instigate some sort of regular movement practice, be it gentle yoga, pilates, qigong (which has been powerfully helpful for me!), gentle walking or even just setting a timer and making sure you sit up, change position and preferably walk around your house, perhaps doing some gentle chores every half hour or so. In short, doing whatever it takes to move the body at regular intervals, and to be on your feet for a while every day, lies at the crux of any improvements you are hoping to make. Without body tone and also if the body gets far too used to lying down or leaning back all the time, rather than resisting gravity in an upright position, the autonomic system will likely spin into even more chaos…just like those astronauts…so you really have to do this for yourself in order to win through and learn to live with this better, with far brighter outcomes for the future. Its the most important motivation you could garner and will make a big difference pretty quickly, rather than all that bed rest or lying on the sofa.

I was testament to this myself this year, following some of the worst episodes of dysautonomia I’ve ever had in December. The colder months are such a difficult time for me as the drop of the barometer, iciness or damp weather plus reduced daylight causes me much increased fibromyalgia and hypermobility pain and chronic fatigue, thus my ability to go for decent walks goes down the pan, my body stiffens and becomes even more limited in its movements, my sleep suffers and the effect is that my health often cascades downwards, which is clearly what had happened by the end of last year.

Yet, with the help of a supplement regime I’ve talked about here before, I found some new energy in January and instigated a daily qigong practice which, being 30 minutes long, committed me to something more structured than the rather amorphous little yoga routine I had been doing for years before that (which, on “bad” days I would reduce down to five minutes spent on the mat or skip altogether). Because I came to really enjoy these sessions, which I pick daily from a library offered as part of a subscription to Stephen Washington’s Core Qigong course, meaning I can select a session that is more seated on days when I struggle to be on my feet due to blood pooling (staring down at dark purple feet during nmy practice is a semi-regular experience for me!), I found myself sticking to it every day, week after week. Pretty soon, I noticed some real improvements to my core strength and ability to stay upright for longer periods. It was quite amazing to notice the real difference this half-hourly effort was making to me, especially at this colder time of year and I came out of the sessions feeling so much better, the effects of which began to spin out into other aspects of my life and generally more activity. Dare I say it, I began to feel almost “normal”.

Then (!) I got injured as a result of my hypermobility, which collided with a foolish attempt to lift something really heavy that I should have asked my husband to carry and then, before that recovered, over-reaching for something instead of getting up to fetch it and falling hard onto my own clenched fist. The combined effect was that I badly hurt my intercostal muscles and surrounding soft tissues to the left side of my chest and was in such a lot of pain for three weeks it was hard to believe I had done this to myself. The result was I could no longer do my yoga at all, except a couple of twists lying prostrate on my back, my qigong practice really suffered because of the arm lifting so I skipped it for the first week and did a much reduced practice for the following two. Then my daily “dance” sessions (movement to music, a practice I had to cut back during my winter flare but which I had been so delighted to be able to vigorously reintroduce for a couple of weeks now) had to go again and I wasn’t even able to go for my daily walks a lot of the time because the arm swing and being upright was noticeably setting me back everytime (recovery with EDS isn’t like recovery with “normal” muscles and soft tissues and often requires a complete pause). Added to this, we had a short holiday booked and though I was still pretty unwell when it came around, I rallied my resources and made myself go. Though we mostly enjoyed it, I came back extremely fatigued and then crashed…monumentally…back into the worst kind of PoTs symptoms I’d had for a while, with many of the symptoms as listed above. I am only just coming out of it now and its reminded me of this (another mantra to learn, along with the “don’t let your body become deconditioned” proviso)…

Tiredness and stress are really not your friends!

Stress and fatigue are probably the biggest risk factors for dysautonmic conditions. Wherever those dysautonomic symptoms happen to stem from in that individual, which could be from a post-viral illness (such as long-haul covid) or even because the person is predisposed to PoTs because of something genetic such as hypermobobility, the net result of stress and tiredness is that they can trigger episodes of dysautonomia out of nowhere because of all the additional strain they put on the autonomic system and, also, they make those episodes much, much more worse and likey prolongued. In short, you owe it to yourself to construct a lifestyle that is as free of these things as you can possibly manage. Work with other family members, delegate, ask for help, avoid the news, say “no” to things you can side-step, factor in long breaks and places you can rest wherever you go. In other words, do what it takes to unfriend stress and fatigue from your life!

Know your triggers

The other most important thing is to know your triggers. PoTs can be fluctuating and entirely unpredictable, you may be sailing along feeling very much like your “old” self, eager to join in with things, then suddenly it all caves in again and you don’t quite know what happened, so being aware of likely triggers is crucial. These can be a wide variety of things, such as environmental factors (for instance manmade triggers such as EMFs, certain foods and chemical smells, or natural ones such as barometric variables when the weather, air pressure and temperature changes), even sensory triggers such as bright lights, strong smells or crowds, and of course variations from sitting down a lot to suddenly having to be on your feet, but get to know your own patterns, jot them down and plan around them. Also notice what works to make you feel better, such as salty water/snacks and electrolyte drinks, compression garments, slow breathing and inpromptu meditation or hands-on techniques you can learn such as tapping or Havening (which I find hugely helpful in the midst of an episode – using this simple, portable and discrete technique has “saved me” more than once!) Also consider anything you need to carry around with you, wherever you go, to make you feel calmer, safer, more familiar and reassured when you are out…because having these episodes away from home can be the most disarming thing. Recruit a trusted person you spend a lot of time with, such as a spouse, to be your aid; teach them how to recognise the signs when you are starting to struggle and tactfu along with timely ways they can step in with suggestions or assistance when your brain has already spiralled into so much fog you can’t even think for yourself anymore!

Related conditions

Is there a link with other conditions? I have already alluded to a post-viral factor and I truly believe, from all my observations, that this is a potential factor in how autonomic disorder comes about in a body, in many cases. When a person has been through a virus, fighting that virus off mightily from the inside and then, in some cases, when they were depleted beforehand or don’t take enough measures to recover properly afterwards, dysautonomia can be the temporary or longer outcome, it seems.

Rhum also points out “There is an overlap between the clinical manifestations of POTS and those observed in the Chronic Fatigue Syndrome (CFS) and Inappropriate Sinus Tachycardia (IST)” (Together We Stand: Riding the Wave of Dysautonomia). I’ve lived with chronic fatigue syndrome for 17 years now, so did my dysautonomia start then? Well, I can certainly see the connection and how it has run like a parallel train track through all the years of overlapping chronic conditions since then (also the resultant deconditioning from CFS, leading to a much more sedentary life, is a likely factor) but what I now observe is this…

Truly, I think I have had a version of dysautonomia all my life and maybe its linked to my trait of high sensitivity (being an HSP) given this can tune you in much more minutely to the kind of environmental variables that involve, or potentially overwhelm, the autonomic nervous system. Also to my neurodiversity (in old parlance I would be called Asperger’s and I also have ADHD), certainly to my Ehlers Danlos Syndrome, which is a well known overlap with PoTs (about which there is a plethora of information on the internet). Back then in my younger life, I only knew that I was “hypermobile” in my joints and finding out about EDS came much later, during the many challenges and hormone disarray of menopause. In common with that is that, what I now recognise as PoTs symptoms were most certainly there when I hit the hormone splurge of puberty, during which time I had several bizarre episodes and a gamut of hard-to-explain symptoms I mostly kept to myself but which certainly perturbed me, including wipe-out exhaustion that would send me into an unnatural swoon and state of brain fog at the end of most school days; worse if the weather was unsettled or extreme or if other stresses coincided. The difficulties of navigating this alongside my studies and supposedly burgeoning social life were considerable (made worse by being in the dark about them) so I want to mention that the challenges of childhood, adolescence and school, plus parenting kids with dysautonomia, are well covered in Rhum’s book.

These symptoms very detrimentally affected my ability to take part in sports (which I had previously coped with and even enjoyed until then) and initiated a series of bizarre physical quirks, from inexplicable stomach and bladder ails to circulation issues that were at their worse when changing school and during exam pressures. They were there again during the considerable work and other pressures I experienced after graduating and throughout the severe stress of my mid 30s, which is when they came to the crescendo I now look back on as my health crash, during which time I experienced a cacophony of odd symptoms that would slot neatly under the chapter headings in Rhum’s handbook to dysautonomia. Agreeably, those symptoms only became stark once I had been through menopause, which is when I began using the terms “PoTs” and “dysautonomia” (there was, also, very little reference to them prior to about five years ago) but, I see now, they have been a lifelong companion, showing themselves mostly when stress, tiredness and triggers have been most overt.

Chronic fatigue syndrome had been around in my life for years by that point, the descriptors of which include “1. Disabling fatigue (loss of physical and social function) 2. Four or more of the following symptoms: post exertional exacerbation of fatigue, sore throat, tender lymph nodes, muscle pain, multijoint pain, headache, concentration impairment and sleep disturbances. Impaired orthostatic tolerance and anxiety disorders. 3. Symptoms lasting for at least 6 months” (Rhum). I’d had these symptoms for years and appropriately labelled them CFS but didn’t see how they could also be dysautonomia until regular waves of nausea, near syncope on standing and wide ranging blood pressure readings, amongst other things, began happening and changed my angle of looking at things.

This realisation gives me optimism that, once life is on more of an even keel, these symptoms do back off (as long as I keep my body conditioned and moving, my relationship with gravity strong…no spaceship sickness around here). If I have lived with them there in the background all my life, I can do so again, and do so well, creating a wonderful life in spite of PoTs!

Reclaiming quality of life

Rhum’s book is all about optimism, the kind that comes from finding out what all those doctors managed to miss and doing something about it, for yourself. Yes, there are medical routes you can take and she talks about those too but I would say, from experience, that the most effective things you can do with dysautonomia are those you take charge of for yourself. Get to know yourself, intimately; jot it all down daily and don’t cringe at the fact you have to make such a study of yourself when others seem to take life for granted (journalling comes with so many other benefits, meaning increased self-awareness is just one of them). Get yourself into healthy routines, keep yourself upright and moving (but don’t overdo it!), plan and restructure your life so it works, tell people about it but don’t apologise, cut yourself some slack, delegate and ask for assistance, learn that all important word “no” when people ask too much of you and use it without apology or explanation, then do what you have to do, for yourself, with or without their help or approval.

The risk of having PoTS or some other dysautonomia is that you get into the habit of saying “no” to a whole lot of things, assuming you just can’t do them anymore. As a result, your life becomes so narrow and cut off, remarkably quickly, which really doesn’t help matters. Instead, modify your plans somewhat and you will find you still can go on those family outings, on the three-day Airbnb break, to the wedding or out for the drive; you just have to think ahead a little and have a few more resources around you, the most valuable of those being yourself and all you have managed to find out about this bewildering condition (besides, dysautonomia will put you in a great deal of awe when it comes to appreciating the complexities of the human body…you will never, ever, take it for granted again). Then, when you get back from those fun times you said “yes” to, for goodness sake have the good grace to accept the extra few days of recovery it will take to get over it and do that with a smile, aptly proud of yourself that, above all, you said “yes” to life itself…on your own terms.

To find out more about dysautonomia, the book I recommended throughout is

“Together We Stand: Riding the Wave of Dysautonomia” – Jodi Epstein Rhum, Edited for Medical Content by Svetlana Blitshteyn, MD

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice, nor do I profess to have medical knowlege or training. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your supplements, your habits or anything else.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s