A blog to share about Adrenal insufficiency, Addison's Disease, Aspergers Syndrome, Autism, Music, Inspiration, Scrapbooking and other elements viewed through the lens of my life. I'm hoping that others who are traveling this journey may find some commonality, and maybe some information and inspiration.

Friday, October 5, 2012

Dysautonomia Awareness

Since I happen to be one of the many who have dysautonomia, I thought it worth a few minutes to post this (graphic thanks to a fellow sufferer).

What on earth is dysautonomia? It's an autonomic nervous system gone awry. Which is not a good thing. Your autonomic nervous system controls all kinds of automatic functions, like heartbeat, blood pressure, sweating. As you can see in the graphic, there are a variety of maladies all under the Dysautonomia umbrella.

I don't even know for sure which variety I am. I do know that I have a dramatic drop in blood pressure when I move from lying down to sitting or sitting to standing. I become completely exhausted from short shopping trips, and I suffer from exercise intolerance, which basically means I don't recover normally from exercise - something seemingly easy and brief and sometimes leave me recovering on the couch for days. And yet exercise is important. It leaves us in a "damned if you do and damned if you don't" conundrum.

Many people who have dysautonomia faint. I'm lucky in that I've never fainted. I get "grey outs" instead of "black outs" - it effects my vision, and I know what's happening, so I compensate by sitting back down, or dropping into a crouch.

There is medication that helps the low blood pressure, at least for some people. It works fairly well for me, for which I am grateful. Sometimes when a younger person has dysautonomia, it is a temporary thing, but for many it is a condition they have to learn to live with the rest of their lives. There is no cure, and it can cause very serious consequences or only mild ones. The causes are myriad, so patients often spend a lot of time and money trying to figure it all out.

If you want to learn more, this site is a good resource: http://www.dinet.org



Tink said...

Hi Patti,

I just came across your blog because I signed up for the class of Renee Parson, IScrap. I was reading the forums were you posted a link to your blog and while browsing I came across this post.
Just wanted to let you know that I have Dysautomnia as well, I have the NCS variety, the NeuroCardioGenic Syncope. So I do faint and hate it. I have injured myself so many times because you have no idea when it will happen. For me it also happens when I turn my head, when I sit down in the car, I faint in bed while turning from on side to the other and while standing upright for too long. The last time I was out by myself is 6 years ago. I was waiting for the light to cross the street and I fainted, right before a big bus was rounding the corner. I was very lucky he drove slowly and did see me wobbling.
After that I could no longer drive or go out by myself. But not just outdoors these things happen, also indoors. I fainted in the garage and hurt my legs on a rake, in the bathroom fell with my nose hitting the porcelain toilet seat etc. Unfortunately no medication helps me, I just stay hydrated as much as possible and start my day with a glass of salt water.
The NCS is a symptom of my ME myalgic Enchephalomyelitis also connected in the USA as CFS/ME ME is the neurological component. It causes inflammation in the spinal cord and brain. Lots of people with ME/CFS have POTS or Orthostatic Intolerance. Especially the PEM, post external exercise, what you mentioned is telling for a diagnose of CFS.

I'm so glad in not the only one with this problem, unfortunately your class is finished I would have loved to connect with you. None of my ME friends is interested in what you can do with an iPad other than games and FB. I'm going to read your tutorial now and can't wait to try it out,
Wishing you a healthy, artistic and happy 2013!

Patti said...

Thanks for posting here. I'm sorry you have NCS, along with CFS/ME. That's a lot to deal with! I also start my day with salt water. I've found that if I drink it right before I exercise, I can actually walk for 30 minutes without ruining the next 2 days. This is major progress for me!

Fainting has got to be hard to deal with because you have no control where you fall. Scary stuff. Stay vigilant & take care of yourself!

I hope you enjoy Renée's class. I love scrapping on my iPad! One of my favorite layouts of the year was made for the class.

I didn't actually teach a class, I just posted a tutorials on my blog. I'm hoping Renée will do a class on Art Studio. She definitely expressed interest when I told her about what I was doing with it.

Happy New Year!