Sunday, 26 October 2014

Dysautonomia Awareness - Postural Orthostatic Tachycardia Syndrome

Image: Global Genes via Google Images

I felt this post was fitting for the month of October as it is
Dysautonomia Awareness Month.

For those of you who may not know what Dysautonomia is, it's an abnormality of the function of the autonomic nervous system. To break this down even more, the autonomic nervous system is the part of the human body that is meant to take care and be responsible for control of the bodily functions we are not conscious of completing ourselves. A bit like when a plane goes into auto pilot and knows exactly what to do. Necessary things need to be completed by our  nervous systems every minute of the day in order for us to survive. For example our heartbeat rhythm, breathing, digestive and gut processes are all seemingly completed without much thought from us as individuals. My own battle with this condition lies in a condition called Postural Orthostatic Tachycardia Syndrome or "POTS" for its shorter term.

So here is my own story of my life with this condition in the hope of raising some awareness. If you are reading this and have Ehlers Danlos Syndrome or Fibromyalgia then there is a strong chance you may also have PoTS as an overlapping illness, if you don't have either then I hope I can give you an overview of the condition.

Another condition that is known for being an Invisible Illness (why am I so prone to those?!).  I don't think I usually use my PoTS diagnosis by name because I generally talk about my health as a whole. Which includes first and foremost my Ehlers Danlos Syndrome diagnosis which has since developed into many overlapping illnesses, such as PoTS, Gastroparesis, Mast Cell and more (which are listed in the header bar above). However, since my diagnosis and gaining more of an understanding of my condition, I felt I needed to do a post highlighting just this condition alone. Lately, my own issues with this syndrome on its own have been extremely intense and frequent (despite my dosage of medication) that I feel extremely lucky to have a final diagnosis. It made me realise how many others may be searching for their own diagnosis and could find this information somewhat useful.  Luckily it just so happened to coincide with awareness month.

A quick overview of POTS;

In some cases, it can definitely a debilitating chronic condition. It has involvements of the heart rate and blood pressure reaching and falling to abnormal levels ( changes within seconds from lows of 30 to highs of 150 or more)  palpitations, fainting, dizzy spells, migraines, low levels of enough blood pumping to the heart and brain, chest pains, blackouts, body temperatures, fatigue, sweats, shakes, trembling, blood pooling, slow and fast heart rhythms, anxiety type symptoms, loss of hearing, and more. Fun fact, PoTS can sometimes be misdiagnosed as an Anxiety Disorder until persistent matching symptoms prove a true diagnosis.  Although there are some medications that may help ease the symptoms of PoTS it can sometimes be a trial and error period , that's if they have any affect at all. Some cases of PoTS can be mild whilst others can be life altering, very scary to live with and effect everyday life. Episodes can be frequent and without warning on a daily basis.

How POTS is tested/ diagnosed;

Usually a table tilt test for confirmation of the condition. Regular ECG's and echocardiograms for any underlying heart problems. Being under an understanding doctors care, usually a specialist is also necessary. 

How POTS can affect your life;

Although its a daily condition to deal with, no two days are the same with how bad it may be. I can tell when a really bad episode is about to happen and through fear try my best attempts to position my body in a place I feel most calm and comfortable. I truly despise the process, thought of and feeling of collapsing. It's never a calm situation, not only is it an incredibly frightening for the person having the episode because of loss of bodily function control, it can also be incredibly frightening for those around to witness. I lose any ounce of colour I may have had, go cold but clammy, feel sick, light headed and incredibly limp. The weakness of my body means I lose functions in many ways whilst also becoming a dead weight to move, starting with the loss of my hearing and vision, ability to talk and this is usually when I have the feeling that  my body is beginning to shut down. This is usually followed by hours of shaking, with body tremors and a complete lack of communication on my behalf. I am quite fortunate that currently at the time of writing this post, I don't fully pass out daily, but the lead up to the passing out point happens for me multiple times a day and is difficult to deal with when you know its looming and may happen at any given moment. It's enough to make you petrified for making any plans or having independence.

A bad POTS turn or episode can make you feel incredibly vulnerable, from its physical aspects (trembling, shaking, sweating, loss of hearing, speech difficulties, shortness of breath) to what its doing to you internally (blood pooling, weakness, sickness, fainting). It worries me that I will have a bad experience with the condition when I am out without being around someone who knows how to fully deal with the condition and it often leaves me frightened to be alone for long periods of time. I'm even too scared to drive my car on my own in fear of having an episode. PoTs alone can leave you in a wheelchair. A combination of my Ehlers Danlos Syndrome symptoms mixed with my PoTS symptoms is the reason that I must use my wheelchair.

As I have an overlapping of illnesses its hard to differentiate them at times at times. I never know if its EDS causing the problem or POTS and sometimes on a really unlucky pain day, it can be both!  POTS mixed with Ehlers Danlos Syndrome it is not a very pleasant combination. If you faint (POTS) it will probably also incur you to dislocate or sublux a joint (EDS) depending on where or how you may fall or land. With something like POTS the body becomes weak from the blood pooling in the legs or stomach and not making it way up to the heart and brain. Showering and bathing in different water to room temperatures often become a problem in a PoTS patients.

Weight loss is also something I have found in this condition. Although my EDS, gastroparesis and slow gut dysmotility issues don't really allow me to eat more than a child's meal per day my weight loss comes in frequent amounts from a POTS episode. My body can often feel like it is shaking or having body tremors for hours on end. It feels like every ounce of energy and fluid drains out of me through sweat and exhaustion. Sure enough when I weigh myself the next day I have at most lost 4 pounds just from one episode. Intense to say the least!

On a really bad POTs day I can not often even leave the bed because the fainting episodes are extremely close together, not only is this frightening but its also exhausting for no apparent reason, I can only think that the body and heart are working overtime in order to regulate correctly! Forget even being able to function like a normal human being. Plans may often need to be changed at the last minute, resting should be a priority.

Quick fixes for a bad POTS episode;

SALT!!! - Salt has become my best friend its come to the point where I actually carry around packets or a miniature condiment in my handbag.
Increasing your water intake - 3 litres to be precise but again those with gut dysmotility may find this difficult to drink large amounts like myself. This is because it remains in the gut for a prolonged amount of time. I must say since I found out this tip I now drink religiously from a bottle so I know just how much I am attempting to intake.
Raising your legs on pillows - getting the blood flow up from your feet to your heart and head, be sure to have enough pillows supporting your legs so that the blood doesn't just pool in the stomach therefore making you sick. A small pillow under your bum can also help avoid the blood pooling in the stomach.
Lay flat for as long as possible - rest is essential after a bad PoTS episode. Not only is it dangerous for you to be standing upright, your heart rate and blood pressure levels must try to re regulate themselves.
Full length support stockings - Not the best fashion statement but helpful for the blood vessels and pooling in your legs.
Avoiding long periods of standing - Sit down and raise your legs if you can, get the blood pumping back up to the heart.

Do you have POTS? What helps you cope with this condition? How does it affect your everyday life?
Thank you for reading this post, I hope I have managed some contribution towards awareness.


  1. Wow this post basically describes a lot of the issues that I have I am so thankful for your blog and that you share with and educate the people reading this.

  2. I have just come across your blog and am very intrigued.
    A dr did tell me years ago (after repeated visits over a number of years) that I had hypermobilty joints and an 'awareness' of my own body the sounds it makes etc. I dismissed him as a wacko and thought I'll just carry on.
    I've always suffered clicking joints in my toes and knees the most from a young age always told il outgrow it. It has got to all my joints click now. I've had my shoulder get stuck twice, once I went to Drs and was just told to rest it so didn't go back 2nd time. I understand now this is slight dis location?
    I suffer badly in my hips since having children. I feel my hip 'slide out' and back in and it leaves me in pain. Once I struggled to walk for a week and was told by dr it was sciatica. Recently I have sharp pains and pins and needles in my hands and feet. I'm always dropping things. I feel quite often like I have to 'think' how to breath as I don't feel I'm breathing properly. I feel so tired and have headaches a lot. It's the constant aching in my joints that I've lived with all my life that I'm so used to but why should I? And I feel it's getting so worse. I have dizzy spells and feel like I'm going to black out which I've only ever done once about 3 years ago and was told I had anxiety issues. Yeah issues about why my body's doing what it does!! I've always joked to family I'll be in a wheelchair (no offence!) but reading your blog it could well happen!
    I don't know how to get a dr to take me seriously?
    In my file will we all my visits. How do I get them to link it all up? Any help much appreciated.

  3. In this test the patient is asked to first, draw a picture of a clock and then they are asked to draw the hands on the clock to illustrate a specific time fatigue intense