san90x0x0

Thanks everyone for your replies and the very helpful article. I myself do believe that pots indeed can be very disabling and I was just so frustrated and dumbfounded at what my doctor had to say. Your replies were encouraging and I am grateful to realize once again that I am not alone about feeling like many just don't understand what we go through everyday and how hard it can be. Thanks!

HI, I've recently visited an autonomic disorder doctor and was officially and finally diagnosed with pots/dysautonomia....however, the things i found to be very shocking is what the doc had to say about it. I was explaining to her how I hoped the meds she gave me will work because I'm frustrated at the fact that i feel sick all the time and how its negatively affecting my school life regarding work, etc. But her reply was you're not even that sick! its not like you have a disability or something like those people who have parkinsons or are limbless! I just sat there like what??? she insist that i do suffer from dysautonomia/pots but her reply seemed like yeah your heart rate is high and everythings messed up but you dont have it that bad enough for it to impact my life. I know there are people in worse conditions than I am out there but I still feel like pots has totally taken over my life, makes me feel like crap, and I do feel like I am disabled!!! Am I wrong to feel that way? I was wondering what others thought about this? What does disability really consists of and do you think what the doctor had to say was true?? Thanks..

Hi, I was wondering after having been diagnosed or having to have lived with POTS for quite a while, what food choices/diet do you adhere to and which ones have worked for you? My doctor thinks that the food choices im making right now does not help at all with the symptoms i have and would like for me to "eat healthier"....but Im kind of at lost as to what that means for a POTS patients like ourselves. Thanks!!!

Hi, I was wondering if any one has tried using calcium channel blockers (especially verapamil) because I have recently been prescribed to take some and I am kind of hesitant and scared to take it....did it help and work for some people and what are the side effects that others have experienced while taking it? Thanks!!!

Hi Jacquie, Yes, I've had urine tests sooo many times and it seems as if there has't been a time when they did not found wb cells in them! Lower abd. pain and pain when urinating doesn't seem that big a deal for me because I don't seem to be having them but wbcs always turn up in my urine sample. The docs though it was UTI or some infection so they have prescribed me antibiotics before but yes...it is strange. I don't know if this is related to POTS but it seems to be that now I am not the only one who have had this problem for a while...

Hi, I've been playing the piano since I was 5 and although I still enjoy playing frequently, I can't say that POTS did not affect my ability to play. There are times when I'm playing and the notes get all blurry (especially classical) because my vision is so bad. When I'm going up and down the keys, I also start to get severely nauseous and have to stop and close my eyes because of episodes of dizziness and vertigo. My body also tends to get stiff (including my fingers) and I get frustrated because I sometimes have trouble playing as fast as I try to. So, yes, it does affect me as a pianist. As for singing...its hard because I have to stop multiple times to catch my breath, but I'm not a singer so it doesn't affect me that much. I don't know what to say but just keep trying because I noticed that when I stop playing music for a while, its harder to come back and play. Good luck!

Hi, This is kind of a sore topic for me. I completely do understand where you are coming from although I think that you should give yourself much MORE credit for going through all this because trust me, you are a TROOPER! My POTS symptoms started since I was around 17 and right now I'm taking a semester off from college at age 19 because this illness has screwed me up so much..not only healthwise, but as a student! I worked my butt off at highschool and now attend a very prestigeous college but look where I am! At home and can barely even go out! When I was less sick during my first year at college, I was so excited to start my life. I worked hard and became part of the fire department, did some theatre work, wanted to take my music ability to the next level, and most of all, become an outstanding student because my goal was to become a doctor (since I was very little!). But POTS hit me...and I had to leave everything behind, started to get horrible grades, people started calling me lazy and unmotivated, it was horrible. Yeah...the school thing I could kinda handle cause i know there is more important things in life than grades, etc. but I felt that I failed as a human being! I too go on myspace and I look at my friends whose lives are continuing...they are taking all these classes and having fun in college while im sitting here missing everything watching my dream of being a doctor slowlly fading away. I want to do so much things..but it breaks my heart that it won't happen. I get sad too...especially these days..too much guilt!! But I'm going to hang in there because I just can't accept being helpless! and I hope you do too!! Because honestly, I think that there is still a lot of time to finish school, get degrees and stuff. I think it is just especially hard right now because eveyone around us at this stage is either in school getting degrees or jumpstarting a new career! Taking on this illness is much much more difficult to endure and i commend you for even being able to work hard to get a GED and thinking about doing much more! I'm still young so I don't know a lot, but I'm hoping later in life, i finally realize that I've gained somethin invaluable by suffering from POTS than those who haven't, although I don't know what that might be right now. I just want to let you know that I can understand what you are going through!

Hi luckygoat, I do get twitches occasionally also. It's much more noticeable during the evenings throughout the night but it does happen. I would be sitting down on the sofa watching tv, and i could literally see part of thigh twitch and quiver....it is soo bizarre. The twitching happens mostly on my thigh/knee area, but it also affects my face, arm, feet, hand, and even stomach! At first I was like this isn't normal...but now i just try to live with it. I defintiely think it's one of those wierd symptoms associated with POTS..but I just wanted to say that I can relate!

I'm currently a full time student (although I'm taking this semester off). I agree that making to class was one of my major problems about being in school because some days it is just really hard to get out of bed. I wasn't signed up for disability but I know that if you do, you can get extensions for papers, have people to take notes for you when you can't go to class, and even have professors see you privately so that you can catch up with what you missed in class. I personally like the class room experience and having dicussions with professors and students in addition to just learning and getting credit. However, if just finishing school and getting a degree is your goal and preference, online classes might be a better option. It is manageable at times and sometimes very very hard at times, but I feel as if if you are truly willing to go through with it, you CAN do it, no matter how long it may take you than others who don't have POTS. One advice is to take classes that absolutely interest you....because I found out that if I take a class that does not totally interest me, when I feel sick and tired, I am very easily tempted to not do my work and just go to bed. Take smaller number of classes..like one or two so you can focus on it better. However, I feel like the best way to survive through school/classes with POTS is to communiate with your professor/teacher. Keep them posted and show that even though you have to miss classes sometimes (often), if you say that you are interested, they help you out alot to help you get the credit. I wish you the best of luck!

I know that others have mentioned issues with low pulse rate lately, and I wanted some opinion on what everyone thinks about my case because I'm confused as to if I am in the process of recovering or is this just another wierd symptom I need to deal with? I have't been officially diagnosed, but I know that I had POTS because I was severly tachycardic upon standing and went through all other host of symptoms it comes with it. However, in the past couple of weeks, my heart rate has gone down considerably..like in the high 50s and low 60s, and this is pretty low for me because my resting heartrate is usually like in the 120s and 130s.......I thought I would be feeling better..I mean shouldn't I? but I feel the same....and perhaps even more weak. I know that many of you who have really low heart rate associate with having syncope and stuff...but that is not the case with me. I have never fainted and so I dont think its NCS or anything. So I like to believe that I'm in recovery but my body just don't feel right or well...that I'm not so sure it is. There have been rare times over the past two weeks when my heart rate shot up to like 140s but mostly, it has been really slow enough that my body feel really wierd. I am in the process of getting a diagnosis for POTS in the next couple of weeks but I don't know if I should go through with it because at the time of the test, if my heart rateis still acting really low....its kind of silly for me to say that I think I have POTS although until last last week...I did. I know that having dysautonmic issues...heart rate can be messed up..either fast or slow...but I don't know what to think because the defining symptom of POTS is tachycardia. So if I suddently start to have low heart rate...does that mean it has gone away? I would really appreciate some imputs on what everyone thinks. THANKS! FYI, I don't take any medications so that couldn't be the cause.

Does any experience increased secretions of saliva? Its kinds of embarassing, but it seems as if I'm drooling more than usual...is this related to dysautonomia? I would greatly appreciate your responses. Thanks!

Yes...I can relate to what you are describing. Some days, I would feel exceptionally weak and then would check my pulse, and it is considerably lower than what it should be (usually my normal standind resting hr is tachy at 100-130s) at high 60s and low 70s. When I lie down, it sometimes become bradycardic. I know for POTS, we mainly experience tachycardia and its weird when the heart rate goes low....but I'm imagining that dysautonomia does affect the heart rhythm..so it can become slow at time??? I don't take any beta-blockers either.

I am planning to go see a POTS doctor at UCLA and I had some questions I wanted to ask before I go. My current insurance does not cover that much and I can't afford to take any tests without it being absolutely necessary for the diagnosis, treatment, etc. Which tests have you guys taken and which do you think is the important ones? THANKS!!

I was wondering if anyone would be willing to share how POTS has affected their weight (gain/loss). I'm a newbie to POTS and it is disconcerting to me what I've heard so far regarding rapid gain/loss. Doesn't these gain/loss leave you at risk for more health complications? I've been experiencing, like some of you have noted, severe stomach bloating and distension after eating. Do any of you think this bloating indicates that I'm gaining weight or have anyone experienced weight loss along with symptoms of bloating, etc.? I apologize for bombarding all of you with so many questions regarding this, but I'm concerned and interested to all of your experiences regarding this. Thanks!!

Lately, I've been noticing that my fingers gets jammed into a lock position (open hand position) and it requires some effort on my part to curl the fingers back up...and everything seems ok afterwards. I just thought that this was the weirdest thing ever and I was wondering if anyone else had this experience before, and if yes, why is this happening? Is it possibly related to POTS or a different underlying cause is at work here? I'd appreciate any thoughts on this!

I definiely do find myself getting symptomatic (mainly nausea/dizziness) watching movies and playing video games, but more so with video games for me. I don't know if you all heard a game called Resident Evil......so engrossing but made me sick..so I had to take 5 minute breaks periodically to continue with the game.

Evie- As a matter of fact, my twin sister and I are indeed identical. I'm guessing my twin is quite vulnerable to POTS since I have it, but the difference between why I have it and she doesn't right now is the string of viral infections I suffered from that triggered my symptoms. But I hope she stays healthy!!

I was also a premature baby at 3lbs but although I do suffer from POTS, I have a twin sister who does not. So I'm not so sure about the correlation. Perhaps it could have left you more vulnerable to it, but I doubt that it's directly related.

I just want to thank everyone for their thoughful responses. I truly do appreciate them. They helped ALOT, believe me! Sarah

Hi, for all college students out there suffering from POTS as well as anybody else who can help me about this......is it just me, or is being able to write a paper of any sort IMPOSSIBLE! I just can't seem to sit down and do anything productive anymore these days! Is it just me or can anyone relate to this? I have these constant adrenaline surges that are just driving me nuts too...and I was wondering if anyone from their past experience know of anything I could do to make it better without the use of medications (I have yet to see a doc here who is familiar with POTS). One more thing....has anyone tried exercise of any sort and actually saw benefits from it instead of being wiped out by it? I would greatly appreciate any advice or comments! -Sarah

Hi everyone. Arounds 2 to 3 months ago, I suddenly got very ill and started to exibit symptoms of POTS and it still continues to bother me very much to this very day. I have been to my campus docs as well as others for the past couple of months, but all they tell me over and over again is that either it's because of stress or that I probably have too much anxiety. I am frustrated of people telling me that I am probably thinking too much in to my illness or that I complain too much about how sick I feel. I am a competent student who have read journals and articles on this, and I am almost 100% sure that I have POTS. I have went to see my PCP and a neurologist, but not to my suprise, they both tell me that it's anxiety and stress and won't bother with my explanation of it being POTS( they don't seem to be quite aware of what this disease truly is). I checked out the physician's list here in DINET and found UCLA autonomic center and I am thinking about trying there. I just wanted to ask if any one have ever seen a doc at UCLA or know any other centers here in California that are good with dealing with POTS? After having started getting symptoms, I have seen my goals, ambitions, and life slowly crumbling down in front me. I feel that the least I deserve is a proper diagnosis of what is wrong with me. When I am laying in bed wiped out because of all the symptoms acting out, it hurts me more and more to hear from others telling me that I am lazy and that I should get out of bed just because they have no idea what POTS is or what it does. I would truly appreciate any advice or feedback. One more question.....is it true that for every specialist we need a referral notice from a PCP? What if our PCP is not cooperative? Thanks!!!!!