ahimsa
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These are useful tips.As far as orthodox mecidal tratments here s what my doc said actually now mixed in with my own suggstions sorry
drugs were florinef - didn't work for me
then midrodine - you do 48 hour halter nonitor test firs tand my BP was just too hight ot have it; it is a vasoconstictor
then I tried licorice root caps 2 per day and these do seem to help
exercise boosts blood volume if you can do it
avoid walking - that is the worst thing to do
high salt diet and salt drinks ( we add potassium )
avoid standing when hot
wear light comprssion clothing esp round abdomen - ie does not need to squeeze too tight
avoid getting hot
avoid heat to abdo - eg laptop computers on your tummy - not good at all dilates large abdominal blood vessels
don t go thirsty
avoid queues and supermarkets ... lots of slow walking
imho - lie down whenever possible - this seem to help me and I only stand up when I need to and keep your feet up if you have to sit up
looking at stem cell tranplants and genetic typihg as the way forward
...
But most of these, minus the stem cell therapy, sound like the same suggestions that I have seen for years on how to deal with symptoms from Orthostatic Intolerance. For example, most of these have been posted on the forum section for OI.
And here's an excerpt from the Johns Hopkins patient handout on Orthostatic Intolerance:
[note - I copied only the highlights, see the full document for details]
When do NMH and POTS lead to symptoms?
Symptoms of NMH and POTS usually are triggered in the following settings:
* with quiet upright posture (such as standing in line, standing in a shower, or even sitting at a desk for long periods),
* after being in a warm environment (such as in hot summer weather, a hot crowded room, a hot shower or bath),
* immediately after exercise,
* after emotionally stressful events (seeing blood or gory scenes, being scared or anxious).
* in some people, after eating, when blood flow shifts to the intestines during digestion.
* if fluid and salt intake are inadequate
It sounds like you are framing your suggestions as treatment for EDS vs. treatments for OI. I understood Sushi's post about things that were specific to EDS (e.g., not overstretching) and your comments about maybe EDS affecting the gut or causing IBS.How are NMH and POTS treated?
Treatment of these conditions is often quite challenging. Because patients have a different mix of underlying contributors to their orthostatic intolerance, therapy has to be tailored to the individual, and usually requires persistence and a willingness to try multiple methods. The approach we use has been based on the available evidence from formal studies and from our experiences treating large numbers of individuals. We use a stepped approach. Step 1 focuses on non-pharmacologic treatments, Step 2 involves use of a single medication, and Step 3 involves rational and judicious use of more than one medication.
Step 1: Non-pharmacological treatments:
a. Avoid prolonged sitting, quiet standing, warm environments, and vasodilating medications.
b. Use postural maneuvers and pressure garments.
c. Treat contributing medical conditions.
d. Increase salt and fluid intake.
e. Physical therapy and exercise
Steps 2 and 3:
(medications that help are listed here)
But I don't understand why you are listing known treatments for OI as treatments specifically aimed at EDS. What am I missing?