Steph06 Posted June 5, 2009 Report Share Posted June 5, 2009 Hello everyone!! My name is Stephanie. I wanted to introduce myself and tell everyone how much I love this site. It is really helpful I was diagnosed with POTS about 10 months ago and after finding this site and reading all of your stories I am wondering if I have more than POTS. Along with the typical symptoms of POTS I get really bad tremors(seizure like) in my body (arms, legs, neck, back and hands). My left arm gets numb and my hand turns blue. Sometimes when I'm just sitting around my eyes start to blink really fast and my eyes roll to the back of my head. Also, I get these muscle spasms in my face that I can not control. Does anyone ever get symptoms like this?? The doctor just gave me a heart monitor to wear for 21day and they monitor me for 24 hours a day. I guess that is my first step to find out whats going on. Anyone else have any suggestions?? I am trying to get an appointment with Dr. Grubb but he has a 6-9month waiting list. Thanks..Stephanie Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted June 5, 2009 Report Share Posted June 5, 2009 Hi Stephanie,Welcome to the forum. I hope you will find us informative and supportive. I am sorry for what you have been through though, and I hope you can find a good doctor to work with. As I am sure you know, dysautonomia is difficult to treat and management involves a lot of trial and error. Regarding your question about the facial muscle spasms, I also have this. My problem is so severe that I can only eat pureed food because I cannot chew. My facial spasms also cause bad headaches associated with dizziness and make me very woozy. Again, welcome aboard. I look forward to seeing your posts! Take care.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 5, 2009 Report Share Posted June 5, 2009 its fairly common for people to say that they wonder if they have more than just POTS. We all seem to have our own quirky symptoms and POTS can manifest in some pretty strange ways. Body tremors and even in rare circumstances a decreased seizure threshold are possible due to the excessive sympathetic activity present in POTS. Quote Link to comment Share on other sites More sharing options...
pat57 Posted June 5, 2009 Report Share Posted June 5, 2009 to seize whether a single jerk or severe tonic clonic is due to not enough 02 to the brain. (for us- that is) The eyes rolling back are trade mark muscle relaxation for impending faint. Part of "going limp".I have NCS and I seize during TTTs or if I am late on my med. Quote Link to comment Share on other sites More sharing options...
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