Dysautonomia: How POTS Changed My Life

The day I was diagnosed with Ehlers-Danlos Syndrome, I was also diagnosed with POTS – Postural Orthostatic Tachycardia Syndrome. I had no idea what EDS was and then there was POTS suddenly added to the mix! So how did the diagnosis of POTS change my life? And how do I manage it now? 

After 18 months of struggling to walk and breathe properly I was diagnosed with Hypermobile Ehlers-Danlos Syndrome but I was also diagnosed with an autonomic dysfunction, called POTS. Frankly after 18 months of misdiagnosis, feeling lost, helpless, legs not functioning well and taking incorrect medication, I was now presented with the name of not one, but two medical conditions I had never heard of, yet they were troubling me.

Here’s a video version of this blog post just in case you’d rather watch, otherwise, you can just scroll down to read on:

I have already spoken about my diagnosis of EDS, how I manage it, my diet and it’s connection with other conditions in depth in this blog, so I’ll link some topics here, but I haven’t spoken about the impact of POTS. I thought it was time I did that.

Relevant Read:

• My Journey: Being Diagnosed with Ehlers-Danlos Syndrome
• My Experience: Treatments to Manage Ehlers-Danlos Syndrome
• Are Ehlers-Danlos Syndrome & Fibromyalgia Connected?
• My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome

What is Postural Orthostatic Tachycardia Syndrome (POTS)?

POTS is a form of ‘Dysautonomia’… whatt?!?! Okay so best I backup a bit.

Dysautonomia is a disorder of the autonomic nervous system (ANS).

The autonomic nervous system controls functions that we don’t need to think to control – it just happens, such as our body temperature, heart rate, blood pressure, our ability to sweat, our bladder control, intestines, pupils and many more such things.

Now more specifically, POTS, as so nicely explained and defined by HopkinsMedicine.org as:

“Postural: related to the position of your body
Orthostatic: related to standing upright
Tachycardia: increased heart-rate
Syndrome: a group of symptoms”

Those with POTS go through various symptoms and usually no two patients are the same.

Symptoms include (these are just some of the symptoms):

– Dizziness / Fainting- High Blood Pressure / Low Blood Pressure
– Fatigue
– Nausea
– Headaches
– Palpitations
– Brain Fog
– Shakiness
– Diarrhea / Constipation
– Vertigo
– Weakness

…and many more.

POTS tends to affect blood circulation around the body, which should automatically be regulated as well as our sympathetic nervous system that controls our flight or fight response.

Without complicating this explanation further, I’ll attempt to explain this simply.

POTS symptoms are usually experienced because of an increase in heart-rate which is activated from a lower amount of blood circulation and blood pooling below the heart. For some even certain elevated hormones can also activate the increase as again explained by HopkinsMedicine.org:

“Elevated levels of certain hormones such as epinephrine (also known as adrenaline since it is released by the adrenal glands) and norepinephrine (mainly released by nerves).”

There are also three different types of POTS, which are Neuropathic, Hyperadrenergic and Low Blood Volume POTS.

You can read more about these three types on the Cleaveland clinic website here because I really want to share what’s changed about my life with POTS and what all I do to manage it.

 

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dizzzzyyyyyyyy – weeeeeeeeee – fall – floor. . Time taken to fall: 0.5seconds. Warning signs: none. . Nope, not kidding. That’s seriously what happens when you have POTS (postural orthostatic tachycardia syndrome) – Your blood pressure drops and you can either feel faint, dizzy and at other times it all happens so quickly that you fall. . Many around me have seen me fall and watch me recover from a new injury every week. Okay, anyways, why am I speaking about this today? POTS is a form of Dysautonomia (an autonomic dysfunction that many with Ehlers-Danlos Syndrome / Hypermobility Spectrum Disorder face)… and October is Dysautonomia Awareness Month. . So, whenever I see such an optical illusion type image, it reminds me of dizziness, which is why I thought it was apt to share if I’m to explain a bit about Dysautonomia. . . . . . . #bandra #streetart #DysautonomiaAwarenessMonth #POTS #dysautonomia #ehlersdanlodsyndrome #hypermobilityspectrumdisorder #EDS #invisibleillness #seebombaymyway #bevisuallyinspired #streetphotography #murals #thevisualyatra #mumbai_uncensored #mumbai_ig #footprintsnoboundaries #_soimumbai #everydayindia #opticalillusion #graffiti #greatwallsofindia #exploreyourcity #urbanwalls #streetartofficial #streetleaks #capturestreets #streetartglobe #lonelyplanet #GNTGiveItAShot

A post shared by Shruti Chopra (@footprintsnoboundaries) on Oct 20, 2018 at 8:18am PDT

How Does POTS Affect Me?

Early signs of POTS for me was a drop in blood pressure as I moved from a position of lying down, then sitting and eventually standing.

If I get up too fast or turn too suddenly then I get dizzy which has caused me to fall to the floor many many times!

Suspecting POTS, my doctor took my blood pressure lying down, sitting and then standing which showed an obvious drop in blood pressure each time.

To add to this I was showing regular signs of blood pooling in my feet along with piezogneic papules. And of course, having a form of dysautonomia is very common in those who have Ehlers-Danlos syndrome.

Also over time, I have realised that in all these years of dealing with fluctuating body temperature and really odd or random sweating that POTS could be the culprit (that’s if it’s not another form of dysautonomia). This fluctuating body temperature has meant that I have had fever every day since October 2015 – and that’s a crazy amount of days which adds to my fatigue.

How do I Manage My POTS?

Initially I didn’t know what hit me. Like I said earlier, I didn’t know what Ehlers-Danlos syndrome was and I was diagnosed with POTS the same day too, which is why it took me a while to understand both the conditions.

But eventually along with my doctor’s advice and some trial and error – I managed to figure out the following ways to help me reduce the troubles POTS gives me.

And here’s how I manage – (please remember to consult your doctor before following any of the ways I’ve mentioned because I’m not a doctor and you must always take personalised professional help.)

1. Increase in Fluid In-Take

This helps the body to remain hydrated and reduces the possibility of dizziness from a lack of water.

2. Increase in Salt In-Take

This allows the maintenance of blood pressure because mine tends to drop. There are days when I can tell that the blood pressure is increasing, so those days I don’t increase my salt in-take. It can be tough to strike a balance but over time you begin to understand your body and the signs it gives you.

3. Not Moving, Getting Up or Turning too Fast.

I am more mindful of my movements especially when I wake up in the morning after lying down for so many hours. First I sit-up in bed for a few minutes, then get my legs hanging at the side of the bed and then I stand. This whole process can take anywhere from 20 to 40 minutes since I also have a lot of pain in my legs from having EDS so it takes quite a while for my body to adjust.

4. Having Smaller Meals & Eating Slower

I try to have smaller but regular meals to help maintain my salt and sugar levels.

Also, I have to chew slowly so that I don’t tire myself. I’ve had to change my diet to take sure that I’m not having gluten (which I struggle to chew) or refined foods that trouble my POTS symptoms more.

But in all honesty, the real motivation behind changing my diet has been the fact that I have endometriosis and Ehlers-Danlos syndrome and luckily it’s worked out well with my POTS too.

You can read about my diet here:

• My Diet for Endometriosis & Ehlers-Danlos Syndrome

5. Keeping Legs Elevated

When I sleep at night I keep my legs elevated to reduce chances of blood pooling and any fluid retention in the legs. Poor circulation tends to keep my hands and feet cold so elevation helps to reduce the coldness of my feet.

6. Breathing Exercise – Anulom Vilom

In Yoga there is a Pranayama (practice of breath control) called Anulom Vilom (also known as alternate nostril breathing). This helps to improve my headaches, circulation of air, helps regulate my blood pressure, reduces anxiety, calms the mind, improves metabolism and in general helps to improve overall body balance.

I do this for 15 minutes every day.

7. Walking Sticks for Balance

My walking sticks help to give me instant balance whenever I get a dizzy episode while being out and about.

 

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A post shared by Shruti Chopra (@footprintsnoboundaries) on Sep 5, 2019 at 1:42am PDT

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As I come to the end of this post, I just want to say that over the years, Postural Orthostatic Tachycardia syndrome has changed most things about my life, what I eat, how much I eat, how I chew so that I don’t tire myself, how I move whether it’s standing up or even how quickly I turn in bed!

I’ve found that I have to be so mindful with everything, but thankfully my seven ways to manage, as explained above have improved my quality of life but if I move away from doing any of these seven things then I definitely invite trouble for myself.

Do you have POTS or any other form of Dysautonomia? How do you manage it? I’d love to hear from you so please leave your comment in the comments section below.

Thank you for reading 🙂

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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.