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SusieQ

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About SusieQ

  • Rank
    Newbie
  • Birthday 06/05/1971

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Profile Information

  • Location
    Richmond, VA
  • Interests
    2 little boys - 4 and 2<br />watching sports- POTS limits me from much activity

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  1. Hi guys- Thank you all for your responses. Its all been very confusing- the neurologist I saw in the hospital was less than helpful and didn't want to hear anything about the POTS. It was as if that would add more to the situation than he wanted to deal with. We are seeing my GP tomorrow so he can refer me for a second opinion. Whether its related to the POTS or a ministroke, whatever it is ... we just want to know so we know how to proceed. POTS can certainly make life very complicated! I will say that since I have been getting so much rest and haven't been on the go like I normally am, I haven't had those bad feeling POTS days which has been a very good thing. It has made me realize how hard I am on my body with my normal day to day lifestyle and that I definitely am not getting enough rest. Something I will definitely work on from now on. Anyway, thank you all for your thoughts and concerns. Your advice has given me alot to think about and ask the doctors about. I will keep you all posted! Hugs to all... Susie
  2. Morning everyone... I was in the hospital most of last week b/c they think i may have suffered a mild stroke. Have any of you ever had a stroke or stroke like symptoms? I was simply playing with my kids one night and the whole left side of my body went numb. I was without feeling for a couple days- my arm has recovered but i am still struggling with my leg. We have been in contact with my dr.'s at NIH and they don't know of any correlation between POTS and stroke. Just thought I'd check with all of you to see. Thanks alot!! Susie
  3. I just had to have my beta blocker increased to 3x / day so i'm now taking it morning, afternoon and night. I used to be such a night owl and now I'm exhausted by 6pm! How do you get by with just one dose a day??? That's great that you can do that!
  4. Hi guys... Okay, my question of the day is do you all work? Full time? Part time? From home? Office? I've never had anyone that i knew who suffered from POTS, etc. so i'm full of questions as to how others handle things. I currently work full time in an office. As of yesterday, my dr. has increased my propanlol to 3x / day but yet i passed out 2 hours after taking the second dose yesterday afternoon. We are thinking i'm exerting too much to try and work a full day, every day and are wondering if i should cut back- especially during the summer months when i have more problems. any thoughts or suggestions are greatly appreciated! Have a great day!! Susie
  5. Hi - I'm wondering how you all handle driving? My major issue with POTS is that I pass out all the time which is obviously a danger if I'm driving. Do you all drive? Thanks for any info... Susie
  6. Like the rest of you, we looked into all 3 of those as well. Johns Hopkins was also highly recommended to us by many doctors- unfortunately we hit an insurance wall there. We got our peace of mind at the National Institute of Health in Bethesda, MD. While it is a major research hospital and the doctors aren't really "treating doctors" I was able to have testing done that showed exactly what was happening in every part of my body when i was having a POTS spell. When i went there, it was specifically to participate in a "propanalol study" however we found through the study that it did work for me, proven through passing a tilt table with flying colors. Dr. David Goldstein was my dr. there, assisted by Dr. El-Dadah- both of whom are wonderful. I can't go see him for check ups or regular visits but we do stay in contact with them via email when things get bad for suggestions. The problem we run into at home is that no doctor wants to treat me. There is so little known about POTS that my cardiologist sends me to a neurologist who sends me to an electro-physiologist- nobody wants to take responsibility!! POTS is very frustrating!!!
  7. I'm new to this forum but am glad to have found it. It's somewhat comforting to know there are others out there who have POTS and know what a struggle it is to live a normal life. I have been dealing with POTS for exactly 2 years now- the cause of mine seems to be post partum, after the birth of my second son. My husband researched and researched, i was in and out of hospitals and on every drug imaginable for 9 months until he got me into the National Institute of Health. I went to NIH for a 3 week propanalol study and found that the propanalol was the best medication for me. It helps most of the time, until the weater gets warm and then i start passing out again- the summers are definitely the worst times for me. Having 2 little boys, ages 4 and 2 and working full time make for hectic days and i struggle to get through them sometimes. There are days when you just can't get out of bed... i know you all know what that is like and i'm glad to know that you all get it. I can try to explain to people how i feel but no one can quite understand the way one feels when dealing with POTS. I just wanted to say Hello and introduce myself... my log in is SusieQ and i look forward to being part of this forum. It is great to have somewhere to go and talk! Thanks for reading my story...
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