All The Dysautonomia Linkspam
Jun. 2nd, 2013 08:23 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
untonugganIn case they are useful to some, here are some dysautonomia links. Dysautonomia is a thing I may have that causes dizziness and falling down and circulatory problems, as well as things like headaches, brain fog, peripheral neuropathy...and may be linked to things like fibromyalgia, CFS, etc.
I have another post about it that is more personal under an access lock, please PM if you would like to be granted access. I am making this post public as it seems it could be useful to the general dreamwidth community.
Note that I have not looked through all of these links in detail so I cannot vouch for their accuracy. Also note that some of them are very DOOM GLOOM EVERYTHING WILL BE TERRIBLE FOREVER while others are all EVERYTHING WILL BE WONDERFUL EVENTUALLY, so I don't know. Something in the middle probably? But don't take the doom and gloom to heart, is my advice.
Life With Ehlers-Danlos Syndrome - blog by someone who also has POTS (Postural Orthostatic Tachycardia Syndrome) and other invisible illnesses, note the POTS tag on the sidebar
- Yahoo group with teleconferences for a host of related syndromes, including Chronic Fatigue, Fibromyalgia, and Chronic Lyme as well as Orthostatic Intolerance and POTS
National Dysautonomia Research Foundation - Info about how the autonomic nervous system works for the layperson; also has a list of specialists
NIH Dysautonomia Page - doom and gloom but has links to potential research trials and other sources
Disautonomia Information Net - Patient-run information site and forum
Dysautonomia Youth Network of America - more sunshine and roses than the others; does have good info even if you are no longer a "youth"
I have another post about it that is more personal under an access lock, please PM if you would like to be granted access. I am making this post public as it seems it could be useful to the general dreamwidth community.
Note that I have not looked through all of these links in detail so I cannot vouch for their accuracy. Also note that some of them are very DOOM GLOOM EVERYTHING WILL BE TERRIBLE FOREVER while others are all EVERYTHING WILL BE WONDERFUL EVENTUALLY, so I don't know. Something in the middle probably? But don't take the doom and gloom to heart, is my advice.
Life With Ehlers-Danlos Syndrome - blog by someone who also has POTS (Postural Orthostatic Tachycardia Syndrome) and other invisible illnesses, note the POTS tag on the sidebar
- Yahoo group with teleconferences for a host of related syndromes, including Chronic Fatigue, Fibromyalgia, and Chronic Lyme as well as Orthostatic Intolerance and POTS
National Dysautonomia Research Foundation - Info about how the autonomic nervous system works for the layperson; also has a list of specialists
NIH Dysautonomia Page - doom and gloom but has links to potential research trials and other sources
Disautonomia Information Net - Patient-run information site and forum
Dysautonomia Youth Network of America - more sunshine and roses than the others; does have good info even if you are no longer a "youth"
no subject
Date: 2013-07-10 04:51 pm (UTC)I have used a "pelvic lock" leg-crossing maneuver to abort several faints -- no drugs, I'm in control, really helped with the fear of fainting. It's detailed in Circulation, a peer-reviewed journal sponsored by the American Heart Association. I couldn't follow the descriptions there (oxygen deprivation to brain?) so I printed it out and brought it to my PT, who coached me on technique.