ACrolley1

Haha. I think it's really funny that you yelled "PALP!" every time you had a heart palpitation. That's a really light hearted way to get people's attention about how much POTS affects our daily lives. I love your positive attitude. (:

Hi Lizababy, My body does not react to heat well either, however my symptoms are not as severe as yours. I get extremely weak, dizzy and nauseous however I have never actually thrown up. My body also goes into a hibernation type mode where I sleep for up to 20 hours. I live in Jacksonville, FL and although I'm not on any medicine for this, I have learned how to adjust to it. I drink lots and lots of Gatorade before during and after any trip to the beach/pool/etc., I eat lots of salty foods and peppermints (If I feel I'm getting nauseous I pop one or two peppermints and my nausea will usually subside.), I bring a cooler filled with cold wash cloths and ice packs to put on the back of my neck if I feel I'm getting overheated and one of the most helpful tricks is a heat resistant umbrella. This home remedy doesn't give me complete relief... but it does help greatly! These are just a few tricks for you to try and if they don't help I hope that you can find something to give you some relief soon! (Smile) Amanda

It's a pleasure to meet you Lette, Mggirl and Brynne. (Smile)

Hi Brynne, As everyone else has said, I think purchasing a wheelchair would be a very smart decision! I have a manual wheelchair and an electric one and it has certainly given me my life back. The manual wheelchair doubles as a walker, so I will walk for about 10 minutes and then my mom will push me for the rest of the time that we are out. Like you, I hated being homebound but I also hated what would happen to me if I tried to run errands all day without any help. Now that I have my electric wheelchair, I'll even be able to go to my week long church camp this summer which I am really looking forward to! It was definately a lifestyle adjustment because up until a couple years ago, I never had to use a wheelchair. For the longest time I fought it because I wanted to be as normal as possible, but when I saw how much it helped when I did use it, I stopped fighting it. I've been using a chair for almost 2 years now, and I am still self-conscious when I go out. I'm always wondering what other people think when they see a normal looking teenage girl in a wheelchair. But, I would rather be able to get out and enjoy life in a wheelchair instead of being cooped up in my house watching life go by without me. My friends know that I have to use a wheelchair we when go out, so we always plan around that. And they always fight over who gets to push me. (Smile) Since my house is relaitvely small, I don't use it when I am home. I want to stay as mobile as possible, so I guess you could say I use walking around my house as "exercise". I know that this is going to be a tough decision for you to make, but you are a strong girl and I know you can get through it! (Smile) I will be praying for you and your family. Amanda

Thank you all for your replies... I enjoyed reading them! I guess it will have to take the right combination of meds and some serious motivation for physical therapy before I start to see any positive results. Hopefully our trip to Mayo will bring forth some new insight as to what kind of meds I will need.. I will mention the possibility of a mito issue to this new doctor as well. Thank you again for your posts! It's comforting to hear from other people who REALLY know what I am going through, not just by what I tell them. Amanda

I have been diagnosed with POTS recently and my doctor is now sending me to the Mayo Clinic in Jacksonville (which is where I live) for a second opinion regarding my case. Pretty much all of my symptoms are directly related to POTS, however the worst symptom does not seem to make much sense with my POTS diagnosis: progressive muscle weakness, which is why my doctor is sending me to Mayo to figure out what this means. I know that general weakness is a symptom of POTS, however the muscle weakness that I am feeling is not the same as the weakness that has been described in articles about POTS. For example, one night I decided to go camping in my youth pastors backyard with some friends. While everyone else was playing capture the flag and jumping on the trampoline, I just sat by the fire and watched. But what little activity I had done when we first arrived such as swinging on the swings and just walking around for a little bit, made me feel miserable. After that I could barely walk in a straight line, my legs felt like jello and it felt as if I were dragging weights on my legs. After I start feeling like this, it takes 24 hours, sometimes more, for me to get back to my "normal" state. 5 years ago, when I first got sick I could hold out for certain activites for about 45 minutes. Now, my activity time is very low key and limited to just 10 minutes because of the weakness. I am still trying my best to stay as active as I can by walking around my house and pedaling on a recumbent bike for a few minutes every day because I don't want to end up being a couch potato... Although I do have my lazy days sometimes. (Smile) The doctor said that physical therapy would make me feel worse for a little while but then it would improve and I would be able to hold out longer with the more P.T I did. I have still been lengthening the time of my P.T but it keeps getting harder instead of easier because of this weakness. What I would like to know is if anyone else has problems with this kind of debilitating weakness? Amanda

Hi Godsgal! I honestly have no idea what I would do without God in my life. He is definately the One that is able to get me through the day! (Smile) We're actually hoping to get an appointment at Mayo soon. I recently visited a doctor in Gainesville who has been talking with colleagues about my case. He contacted me this past week and said that he would really like for me to be seen at Mayo. Mayo is out of our insurance network, but we are hoping that with a letter from him stating that he feels this appointment is necessary that we will be able to get in. -A

Hi Reen! For now I am only taking Atenenol. 25 mg doses twice daily. I saw a doctor in Gainesville about 3 weeks ago and he said he was going to talk to a colleague who specializes in autonomic dysfunction to see what others meds I should start taking. He heavily emphasized the importance of increasing my water and sodium intake so I have been focusing on that a lot. My water bottle has become my new best friend! (Smile) I can get around fairly well, after about 15 minutes of walking I need to find a place to sit though. I'm hopeful that once I can get started on some meds and physical therapy I will be able to tolerate normal activities a little better. It has definitely been tough trying to adjust to beach life. The heat completely wipes me out (as I'm sure you know!) but I knew I had to figure out a way to make it work. We bought an umbrella with a special lining on the inside to help reflect heat better than a regular umbrella, I make sure to bring lots of gatorade and salty snacks, and I also bring a couple ice packs to put on the back of my neck and chest if I start getting really hot. It took awhile to figure out all the tricks... but we finally got it right! (Smile) -A

Hi, I’m Amanda. I’ve been alive for 15 years now and I have been diagnosed with POTS and what my doctor has described as a genetic form of Dysautonomia. He likes to call my case “POTS plus” because there are an array of other problems which follow my POTS diagnosis. I am currently unable to attend school, so I take all of my classes online. It works out really well so I can complete work on my own time and when my symptoms are not too much of a bother. I believe that one of the most important things you need to know about me is that I am a Christian. Having faith in God is the basis for my life. I love Jacksonville, Fl. That’s where I live. I absolutely love the beach. I’m not sure what my friends and I would do without the beach. I’ve planned my entire wedding to take place on the beach, though I have yet to even have a boyfriend. However, it is something that I have thought a great deal about, as I am sure every other girl has. (Smile) I love to read. I’ve been like this since I was a kid, before I was gigantically tall and over talkative. I’m fascinated by the human body. I spend a great deal of time researching all sorts of topics, especially those which have some sort of relation to Dysautonomia/POTS. I have always wanted to become a surgeon. I guess you could say that would be my dream job. Grey’s Anatomy is my favorite show. I hate being alone. I have a dog. Her name is Sophie and she is a yorkie-poo. I hang out with my friends a lot. Almost every weekend. I love spending time with my family. We always come up with different things we can do together that will be fun and different. I am very thankful to have so many people in my life that I love and I know they love me back! I really love listening to music. Any genre will do but my all time favorite artist is Chris Tomlin. I love to listen to his music because it’s very uplifting and it always puts me in a good mood! I write in a journal. I have found it to be a very therapeutic tool in living with D/POTS. I can write down everything I am feeling, good or bad, and when I look back at what I have written a few months later I can see how certain events have impacted my life. My friends vent to me about their problems all the time which is totally cool. Even if I have no utter clue what to say, I know that just listening makes them feel better. However, I have never returned the favor. I think it might be safe to say that I have an issue with pride. My friends have their own problems and I feel like the last thing they need is to hear mine. I like to experiment with lots of things. Especially with food. Now that I am on a high sodium diet I try and put salt in EVERYTHING. I even tried to drink salt water which wasn’t such a good idea. I’m totally open to new ideas with this. I’m a very outspoken person. Sometimes it gets me in trouble, but I learn from my mistakes. I’m pretty stoked that you read this whole thing. I commend you for that. I’m sure there is a list of other things you could have been doing instead of reading this. So thank you. Reply to this thread or send me a message. I love to talk. (Smile) -A