Newly dx POTS (Dysautonomia)

[halesred1]

Hey everyone. I have recently been diagnosed with Dysautonomia (POTS).  Two years ago I started having fainting spells where I ended up in the hospital. I was originally diagnosed with Thoracic Outlet Syndrome (TOS) and Cariogenic Syncope.  I had to have surgery on the right side for TOS because there were compression and aneursyms in the thoracic outlet and subclavian artery. Post surgery my symptoms were managable for a couple of months then they came raging back and stronger than ever. I went back to my cardiologist who referred me to the Vascular surgeon and we did the right side surgery.  In all honesty, my symptoms have spiraled out of control.  I am now fainting multiple times a day, severe dizziness, confusion/brainfog, naseau, my hands and feet are cold and go numb quite often, insomnia, just general body weakness, etc. I have failed a Tilt table test, I have done orthostatic blood pressure readings and upon standing my bp drops and my heart rate accelerates.  My last reading my bp laying down was 112/60 with heart rate at 80, sitting upright 100/58 heart rate 100 and standing 88/40 heart rate 170.  I have noticed that I am having lots of tachycardia symptoms at rest. I have been placed on Midodrine and Toprol XL for the past few months but I haven't noticed any symptoms getting better; honestly I think it is getting worse. I am to the point where I am afraid to be alone for fear of passing out; I am a divorced mom of two.....is this something that will take over and control my life?  Can anyone tell me more on this, what they experience, what has helped?

I am in an area where the doctors here in Florida have literally "laughed", told me it was above their pay grade and good luck.  My health insurance will not approve (pay) for me to go to Mayo Clinic, I have been approved to see Dr. Thompson but his office isn't even taking new patients until end of February 2014.  Any other doctors in the state of Florida?

You general information and what to expect is greatly appreciated because I am lost and confused here.

Thank you.

[SLYgirl120]

The doctors gave me fludrocortison which actually works and helps my symptoms greatly.  They tried to put me on beta blockers but they made things worse because even though they would slow my heart my blood pressure would drop which is the opposite of what I needed it already drop upon standing enough to make me black out. I also had a right rib recession (they cut my first rib out do to T.O.S.) it has help but the issue remains but a lot less severe.  O return back to the heart specialist this friday for my yearly reveiw and hoping to find out something new since ive been in physical therapy and pin pointing my triggers.  

[Heiferly]

Hi. I'm sorry for the delay in response. I am recovering from a prolonged hospitalization myself and am hit/miss on here lately.

(See here:  http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/A-long-overdue-and-massive-update/show/2019178 )

I have great sympathy for where you are right now. I remember feeling at sea, not knowing what life with dysautonomia was going to be like, not having doctors to help me or answer my questions; it is not a good place to be.

Rather than write a novel here, I'm going to point you to some resources we have here that may help you start to gain footing, and then from there if you have specific questions please post them or send me a message.

Scroll to the bottom of the page and look in the right sidebar to find the Neurology Health Pages. We have a number of Dysautonomia health pages that you may find helpful.

I also encourage you to scroll to the top of the right sidebar and use the "search this community" function. Here are some searches that might pull up past conversations we've had here that may be helpful: prognosis, medical records, compression stockings, salt, Florida ...

If you have trouble finding anything, let me know. Also, if you find something in the archived conversations that you would like to comment on  please start your own thread by clicking "post a question" and discuss it there, because replies to outdated threads will often be overlooked.