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