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About Gracefulprincess

  • Rank
    Advanced Member
  • Birthday 11/03/1978

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  • Gender
  • Location
    Charlotte, Nc
  • Interests
    Jesus, worship, piano, writing songs, writing, sleeping, playing dutch blitz, hanging out with friends

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  1. Does anyone on here have issues with dropping oxygen levels? My levels have been dropping for awhile now and my cardiologist wants me to see a pulmonologist because she thinks I might need supplemental oxygen. If anyone has gone through this, what did the pulmonologist say? Did you have to go through any tests? I found a doctor to go to that my local cardiologist recommended. I'm just waiting for medical records to be sent over so i can get scheduled. Thanks in advance for any advice!
  2. Hey there! It's been a long time since I've posted anything here. October is Dysautonomia awareness month, so is anyone doing anything creative this year? I usually share facts and other info about Dysautonomia on my facebook, but I would love to hear what some of you are doing. It might give me some more ideas.
  3. I just have a question for everyone... has anyone been to the Duke Pots Clinic or been seen at Wake Forest? I'm asking because my dr told me yesterday that if this new medicine we're trying for a week doesn't work, he will have to refer me to one of these places. So if you have been there, what was your experience like? How are the doctors and staff? Thanks in advance for your help! Becca
  4. It's been forever since I've posted anything on here, but I'm leaving for Israel in a week and I'm looking for any tips or advice. It's a touring trip so I'm going to be doing A LOT of walking and the trip is 10 days (that's including the traveling part). I already know that this trip will push me beyond my physical limits. I'm going to be calling the airline ahead of time so I will have help at the airport and going through security. I have Neurocardiogenic Syncope, POTS, and along with Cerebral Palsy. So I will have my rolling walker with me to help get me through the airports. I'm going
  5. welcome to the group! I started getting sick in July 2003, I was working retail then. It took about a year to be diagnosed with Neurocardiogenic Syncope and then Pots... and I was still trying to work then but it was getting harder and harder. And then my employer was trying to find ways to fire me because of being sick. Finally in 2005 my health was going downhill and I ended up being admitted to the hospital and was told that I could no longer work and had to go on disability. I ended up being fired before I went on disability. I was in my late 20's. I wish I could work at home but I h
  6. Here's my experience with going through the process of disability, I was diagnosed with both Neurocardiogenic Syncope and POTS. I was referred to a cardiologist by a neurologist I was seeing for other health conditions. And once I saw the cardiologist, we went through all the testing to find out what was going on which took awhile. And then started different medicines to see what would help me. After about a year, the medicines weren't helping and I was in bad shape and had to be admitted to the hospital for a few days. And there, the doctor told me two things, one I couldn't drive anymore b
  7. I have lost many dear friends along the way, and it does hurt but a lot of them didn't understand what was going on with me or had busy lives with their families and or careers. You find out who you true friends are when you're dealing with chronic illnesses. I've been blessed to have a few close friends stay with me and I know that they've got my back. And when some friends leaves, sometimes God bring new friends into your life. The friendships I have I cherish and are priceless to me.
  8. trudi..I will send you a friend request. My name is Rebecca schwinabart. I found a dysautonomia support page on fb that is posting daily prompts and pics for this month that you can use for posts. And Vepa I would love to help you if you want, so feel free to message me and let me know more about it. Thanks
  9. Hey Everyone.... in case you don't know October is Dysautonomia awareness month! I usually like to post different facts and information about dysautonomia on my Facebook every day or at least several times a week. I've been doing this for the last few years and I'm looking for new stuff to post. I don't want to keep posting the same things each year. So does anyone else do anything different? Or does anyone have a story or article they would like to share with me, that I could share? One year a friend on Instragram did a photo challenge for the month and she had a theme for each day and you co
  10. I heard back from my cardiologist yesterday and he wants me to go back to the 5mg of Norvasc because of how low my blood pressure has been since we increased it. For now that's all I can do and just pray that the chest pain will give me a break for awhile. I wouldn't mind getting a second opinion from another cardiologist, but where I live it's so hard to find one that knows about Pots and understands it, at least some. And to find a dr who takes it seriously is so hard too. I don't want to go through that kind of stress right now. I see my regular doctor in October and I'll talk to him ab
  11. Hello everyone! It's been a long time since I've been on the forum. I was wondering if anyone here is on Norvasc? Awhile ago my cardiologist put me on a small dose of it to keep my blood pressure stable and to also help with the chest pain I get. I was originally put on 5mg once a day and was doing okay with it. But this year the chest pain has gotten way out of control. The pain has been so bad that I end up curling up in a ball crying just waiting for it to go away and it usually takes about 30 mins or so for it to start to calm down. My dr ran more cardiac tests which came back normal. So
  12. I haven't been on the forum in awhile so I'm catching up on my reading. My neurologist put me on Clonzepam (.5mg twice a day) awhile ago. It's probably been a good 7 years or more. But I don't take it for my Pots, I'm on it for seizures and the tremors/ shakiness I get. And it does help the tremors from turning into a full blown seizure.
  13. Wish it was closer to me and would of known about it sooner. I live in Shelby nc that's a couple hours away. I hope you have a great time!
  14. Hey everyone, as some of you know October is dysautonomia awareness month. So I'm looking for some ideas to get awareness out there. Last year I posted facts about dysautonomia everyday on my Facebook and will probably do the same this year, but if you come across any articles or have some creative ideas let me know. Thanks!
  15. I had one put in back in 2008 and left it in till 2011. It's a minor surgery and done under local anesthesia ( they don't put you to sleep). The thing to remember is that it just records your heart rate and doesn't treat anything. It's helpful if you're having heart rate issues and will give your doctor a better picture of what is going on hopefully. Once it's in, you usually go in for them to download the info that it collected once a month.
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