October is dysautonomia awareness month. Raising awareness of this chronic condition is close to my heart (hah, heart!) as I suffer with so many issues because of it, yet it is relatively unheard of unless your'e in specialist medical circles. I had no idea what this was three years ago, educating myself has been key in dealing with my symptoms, helping my GP understand and learn more and supporting others who may have some form of dysautonomia in their life. So...
What is Dysautonomia?
It's a little waffly but the basics are there. This past month, my personal symptoms have been rapid uncontrollable heartbeat, palpitations, high rise in BP, low fall in BP, passing out, muscle burn, unable to lift my arms above my head, swollen feet, pins and needles, twitching, visual distortion and excessive sweating. This has been a good month in the fact that these symptoms were clustered mainly around a few weekends rather than every day (which is what it was, before I was put on cardiac medication).
Before the birth of my youngest son, I had dysautonomia symptoms but on a much lighter scale. I was diagnosed in my early twenties with Generalised Anxiety Disorder which my GP said explained my strange symptoms. On the surface of things, it kind of did! I was going through a rough emotional time, it seemed to make sense even though I didn't particularly 'feel' like I had a problem with anxiety - but that can be part of anxiety and depression too.
It wasn't until my youngest son came into the world that my body decided to start playing real havoc with me. Symptoms shot up in relation to the 'anxiety disorder', I found myself feeling like passing out numerous times a day, sweating was excessive, shakiness and twitching, my heart rate was really high a lot of the time and kept shooting up or dropping just like before but much more severe. I developed other stuff too (post partum thyroid disease) and I was in a LOT of pain. My joints had always been bad, extra bendy, clicky, getting 'stuck out', breaking easily but it felt like I was falling apart.
After a lot of tests, a LOT of waiting and seeing some brilliant specialists, I was diagnosed with Ehlers Danlos Syndrome (a connective tissue disorder) and Postural Orthostatic Tachycardia Syndrome with sinus tachycardia. These tend to go hand in hand with each other, which is why I'm mentioning both.
Due to the EDS, my internal organs and veins are stretchy - my specialist says to imagine chewing gum and elastic bands. Most people are made up of elastic bands which stretch but pretty much go back to their original shape and tone. People with EDS are built of chewing gum, it starts off ok, a little stretchy, but the more it's used, the more pulled and stretched it becomes, a real struggle to get it to go back to it's original form. My veins balloon and let too much blood in the wrong places. My autonomic system freaks and tries to push blood back to where it's supposed to be (or to the area being used) but forgets other bits of my body need to function too - these are the things that lead me to have dreadful muscle burn, twitching, weakness, blood pooling and passing out. Even something as simple as eating a large or spicy meal makes your autonomic system send more blood to your stomach to help digestion, yet in my case it sends too much in the 'freak out' and makes my whole body go haywire, sweating, palpitating and fainting.
There are an awful lot of sides to this complex disorder which I can't go into, I can only write from my perspective. With cardiac medication which lowers my pulse but stabilises my blood pressure, I am able to lead a relatively safe life - paying attention to my bad days and triggers. Some are not as fortunate and cannot even stand without passing out. People not as fortunate as myself to have it caught by a specialist and treated can go years and years without treatment, while slowly damaging their heart and vital bodily functions which can lead to severe long-lasting damage and death. As I mentioned before, dysautonomia often goes hand in hand with other chronic and serious conditions such as Vascular EDS which is the most severe form of Ehlers Danlos Syndrome, rupture of arteries and organs of people with V-EDS is unpredictable and life threatening.
If you feel you suffer from any symptoms which could relate to dysautonomia at all, I urge you to read up, educate yourself and visit the GP with your findings if you are worried. A good GP will look at your symptoms, what you have researched yourself and never deny you a referral to somewhere if you feel you want to see someone. My GP had no knowledge of EDS and little understanding of dysautonmia before my diagnosis at hospital (just like me!) so we researched together and worked as a team with referrals and treatments. She has been a star.
Here are a couple of links if you'd like to research yourself or read more about what dysautonomia is and it's associated syndromes etc Thank you for reading and helping me raise awareness! <3
What is dysautonomia?
What is POTS?
What is EDS
What is ME/CFS?
Who is Julie?
30 something, mother of two gorgeous boys, lover of one gorgeous husband, perpetually living in a dream world full of wine, chocolate and artsy crafty things.