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About Gracefulprincess

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    Advanced Member
  • Birthday 11/03/1978

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  • 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 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.
  8. Hi Jennifer... I haven't been on the forum for awhile so I just saw this post. Back in late July/early August I was having the same type of pain in what I thought was my rib cage (the left side). I have had it before on and off..the best way to describe it was like the pain you get if you have a side cramp from walking or exercising but 100 times worse, and I didn't do anything that I knew of for it to happen. But anyway instead of it being on and off it was becoming more constant and more painful and I couldn't take it anymore so I gave in and went to urgent care. I had xrays and that Dr said
  9. I have hair loss too and the thing with me, is that my hair is already short and thin to begin with. I was born with a genetic disorder that causes my hair to grow super slow and wont let it grow past a certian length before it will start breaking off. The longest my hair has been is shoulder length. But recently my hair has been thinning even more, because i've been losing alot of weight due to one of my medicines. I've lost 30 pound during the last few months. I'm now down to 114, and when my weight loss started i was almost 140 (its the highest i've ever been, but it's still a normal weigh
  10. I was just under review but mine didn't have that many pages. And didn't ask many questions. They mostly wanted me to send them dates of all my dr appts and mediciations. I remember i had some questions about some of the stuff, and called them and they were nice and explained what they needed. That was in march, and i still got my disability payment for this month, so i'm assuming everything is okay.
  11. along with having neurocardiogenic syncope and Pots, i also have other severe neurological issues that effect my muscles,and my legs. So if i'm having a day where i've been feeling weak, and i have to go out to a store i used the electric carts they have. If it's just a in and out of the store situation, i just try to be quick. Ive been using a cane for 2 years because of the neuro issues, and it took a long time for me to get used to that. You dont expect to see a 33 yr old using a cane or one of those carts...so i do get some looks. but usually everyone who works at the store has always bee
  12. I get chest pain pretty often. A cardiologist dx me with coronary artery spasms, and he said the spasms cause the chest pain. So he prescribed Nitroglycerin (the type that dissolves under your tongue), and put me on a high dose of a calcium channel blocker. This was back in 2006 or so, and the combination seems to be helping. It doesn't completely prevent the chest pain....like i said i still get it alot and have to take the nitro at times. And because of the side effects from the nitro i try to wait it out, if the pain doesn't seem to be going away then i will take it. I only take it when i
  13. Seems like i have similar issues like you described. My body seems to not be as sensitive to pain meds. I recently had the Reveal Loop Recorder removed, and they usually use something to numb the area, then give you what they call "happy juice" (can't remember what the actual med is called) during the surgery. Well the "happy juice" never works on me...it doesn't relax me at all and i was wide awake and talking during the procedure. They even doubled the dose for me. But the meds didn't kick in till afterwards...then i could barely keep my eyes open and was very loopy. As far pain meds are c
  14. Just wondering if anyone on here has seen Dr Klein at UNC Chapel hill? If so what was your experience like? How long did you have to wait to get an appointment?
  15. to reply to your original question about being put on a calcium channel blocker.....I've been on one for years...probably like 4 or so. I can't remember exactly but my original cardiologist put me on Cardizem 24hr, when i told him i was i having alot of severe chest pain. And he said i was having coronary artery spasms. I can't remember what dose he started me on, but i'm sure it was low, but eventually it ended up being increased to 300mg once at night. Then i started seeing another cardioloigst (a partner of his), and he didn't like me being on such a high dose...so he tried to lower it. He
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