Does this pattern sound like part of Dysautonomia symptoms?

[akj]

Would very much appreciate input if this sounds typical.

I have had Dysautonomia symptoms for many years, though only got a diagnosis 9 years ago.  I have gotten used to compression socks, abdominal binder, 3 liters of water, 2 tablespoons of salt spread out through the day, Liquid IV, small meals, monitored careful rowing, and Midodrine,all the regular stuff we are supposed to do.

My usual symptoms have always been dizziness, lightheadedness , pre syncope, sometimes syncope, lack of focus, weakness, nausea, etc.  But just tried to manage with mornings being the worst.

In the last year I have had three sessions of loss of mobility where I can no longer stand and then bouts of vomiting.  As I mentioned in a previous thread, at first I was so scared I was having a stroke I ended up in the ER.  But after 2 trips and all tests coming back normal I started just trying to get through it.

Does this sound like just another cluster of symptoms experienced by people with Dysautonomia?  My cardiologist keeps telling me Dysautonomia symptoms aren’t lethal, but it sure feels awful.  And because the usual pattern has changed I wonder if something else is going on or is this another Dysautonomia symptomatic pattern?

Thank you in advance for sharing any input or your experiences.

akj

 

 

 

[Pistol]

16 hours ago, akj said:

 And because the usual pattern has changed I wonder if something else is going on or is this another Dysautonomia symptomatic pattern?

For me dysautonomia symptoms seem to come and go, and they have changed over time in my case. But I have also learned that a flare ( a sudden worsening of symptoms ) usually has a trigger like illness, weather changes, stress etc. 

Sometimes medications stopped working or needed to be increased/changed. What helps me to determine what is going on is keeping an eye on my BP and HR in addition to adapting to my symptoms. When I cannot be upright for any length of time I stay in bed and do exercises while lying down. When brain fog or presyncope/syncope are the problem I avoid any activities that require concentration or being upright. 

But often we cannot pinpoint what causes the symptoms and we just have to get through it the best we can. 

 

[akj]

Thank you, Pistol.  My brain isn’t working and I forgot how you taught me to recreate the person’s icon in a response.  Will check back on our older posts and remind myself.

 We, my cardiologist, who has stick with me through all this, and I are definitely relooking at my medications.  BP and HR are staying pretty much in same pattern with systolic numbers dropping in 70’s on standing. But we will also review that as I have kept records .

But wanted to thank you for your thoughtful response.  Much to think about, changing symptoms, worsening symptoms, medications, and how to cope.  You give lots of support to so many. Thank you.  akj

[MaineDoug]

Hi AKJ,

What exactly do you mean when you say that you had a “loss of mobility”? 

As for your cardiologist’s comment, one of my favorite doc quotes is “POTS doesn’t end your life, but it wrecks it”! Never a truer word! 

[akj]

Yes that is a more realistic quote as to how we all feel.

 Thank you for the smile it brought.  
Hope you are having a positive day.akj