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hlt4275

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  1. I teach middle school math, and have found that my administrators are very understanding. I was in the midst of getting my education to teach when I was diagnosed with POTS, and I specifically remember my neruologist telling me that it wasn't a great idea for me because of POTS. I am pretty stubborn, and I had wanted to teach all of my life, so I was determined to give it a go. I am definitely able to make it work (at least for now). Teaching is no longer the "stand in front of the class and drone on" type of job as it used to be so I get to sit with students in small groups for most of the class period. When I need to revolve around the room and I'm having POTS problems I just scoot around in my rolly chair. My room is an old science lab so I have a great high lab table in the front of the room with a high stool when I need to give direct instruction or demonstrate the use of mathematical models. In addition, technology has allowed for the use of document cameras to demonstrate math procedures, which allows me to skip standing at a chalkboard (my students actually prefer the document camera because the teacher's body doesn't block the view from certain classroom locations). In the winter I will wear compression stockings because I find them to be rather helpful. I do come home most nights quite exhausted because standing can't be avoided altogether and the pace can be quite hectic, so I tend to go to bed much earlier than "normal" folks. I also get up much earlier to allow my body a nice "acclaimation" period (I'm sure you all know what I am talking about), but I think of it as my "me" time. I get to watch my favorite shows that were DVR'd the night before and enjoy some coffee before making my body do what it doesn't want to do. Teachers also get to bring work home with them (not all, but a good bit), so that is helpful with respect to the work/family balance when you tend to be spent just from working. I don't want to make it sound like it is all roses, sunshine, and fantastic for a POTSIE.... Unfortunately, during the school year, the hours that I put in vary from 50-80 hours per week (including work done at home), so there isn't much of a life outside of work. From the beginning of the school year through winter break the hours are the longest, and after winter break it seems to ease up a bit. The upside is that about every 3 months you get a nice break (still doing work at home, but more in the couple of hours per day range), and outside of preparing for the next year and attending professional confrerences, the summer is a wonderful time to feel "normal" because I can meet up with friends for a few hours and not have to worry about paying a horrible price later because I can go right back home and lay down if needed.
  2. Definitely fatigue for me too! I feel like I could deal with the other symptoms much better if only I had energy.
  3. I know that many of us deal with the overwhelming fatigue of POTS. I'm wondering of those who do, have you found anything that really helps? Are there any with POTS that don't experience fatigue? My doc started me on Nuvigil a couple of weeks ago to help with fatigue, and while it does provide mental alertness, and the ability to "push through" the fatigue on a mild- moderate day, it doesn't actually remove the feeling of fatigue from your body. I was happy with at least being able to push through (and I'm not talking a full day of activity, or working outside the home here), and I was hopeful that things would slowly improve. Now though, I'm just plain irritated and angry with the fatigue of POTS. Friday I spent a few hours preparing for my son's birthday celebration that occurred yesterday and although I was fatigued and tired I was hoping Saturday (his party) would be okay. I made it through, but hit that brick wall, and of course I'm paying for it today with horrible fatigue that isn't helped at all by the Nuvigil--it is keeping me awake, but that is about all. I was really hoping that I would find that with the med I could at least be moderately active without ramifications, but obviously that isn't the case. Granted it is better than I'm sure I would have fared without, but I'm starting to wonder if this is as good as it will ever get. There are so many things that I want to do in life, and so many things I want to do with and for my kids, and I am so darn angry bout it today! ****Edited to ask....Has anyone found that if they are able to get the HR/orthostatic symptoms under control that they gradually get energy back? I asked this of my Neuro, and he said that no one knows because they are still learning about POTS, but hopefully would have more/better answers soon. I figure that you guys would be good ones to ask this same question to as I am really kind of hoping that there is merit to this thought. What does everyone else do when they hit this point and see the reality of the situation? I will never stop looking for something to help, but right now I'm having a difficult time with all of this. Thanks for letting me vent! Any thoughts, wisdom, or encouragement would be VERY appreciated!
  4. I'm so happy for you Ryan! I hope this new doc can quickly find the treatment that works well for you.
  5. Hi Ryan and welcome! I'm so sorry that you are going through all of this. I too know just how hard getting a diagnosis can be. I am one of those people that took years to get a diagnosis, and just finally received the diagnosis last month, so I'm really kind of new to all of this too. Anyway...I just wanted to let you know that you aren't alone in what you are going through and we are here to support you so vent away!! I hope the new doctor can get to the bottom of this for you. Please keep us updated on how things go. (((((big hugs))))
  6. Hey there! I can totally relate to your fear! I too, increasingly have terrible reactions to meds, and was recently given Florinef. I too was really apprehensive about trying it because I don't want another setback or flare (I just started coming out of my worst yet). That being said, I knew that I would never know if it would help me if I didn't try it. I figured that if I took one and had a bad reaction I would wait and try again in about a week to verify that it was, in fact, the med that caused the reaction and not a coincidental illness or something. Well, guess what? I have no side effects from it at all! Although I can't say that it is my miracle drug I can say that mornings are much easier with it. With that being said....yes, there is a chance that you could have a reaction to it, but there is also a chance that you won't and you will never know unless you give it a go. I think you've been given good advice by the previous posters to start slow with a fraction of a pill and see how it goes and work up from there. It is definitely a personal decision, and a difficult one. Hugs to you!
  7. Thank you everyone for the warm welcome, words of wisdom, and comfort. I will definitely take everyone's advice and stop the acting madness! I owe it to myself and my family to be real, but it is nice to know that I am not the only one who has put on appearances. To answer a question that was posed, I am 35 (almost 36) years old. I should have added that to my intro. As for those who spoke of typos...yes, I completely understand! As I looked at the description of my post it was meant to say "introduction" not "introducation." LOL Sometimes my brain takes a vacation, and my fingers do their own thing. I'm looking forward to getting to know everyone! Thanks again for making me feel so welcome!
  8. Hi Everyone! I have recently been diagnosed with POTS, but have had progressing symptoms for years. I've read the board quite a bit and have found a lot of help and inspiration in everyone's posts! Thank you all! I have a couple of questions that don't really have anything to do with treatment, just looking for some comfort I guess knowing that I'm not alone....maybe just an outlet of sorts. 1) I know that many of us hear "But you don't look sick!" I'm wondering, is there anyone else out there other than me that has gone to great lengths to make the world "see" a perfect picture, only to hide your dirty little secret at home? Outwardly I appear like any other mom, wife, etc., but what I don't let people see is that I come home from an outing and lay on the couch unable to do anything else, my house is always a pigsty even though I WANT a nice clean home, I sometimes have such bad days/weeks that I don't even answer the phone because I don't have the energy to talk, but then tell people that I "have been really busy" when they inquire why I haven't returned their call when really I've been home laying down. I really feel like a fraud sometimes, but I'm terrified to have people see how things really are. 2)And this is purely more for curiosity sake.... Does anyone else have problems both gaining and losing weight? While I'm not overweight, I have, in the past tried to shed a few pounds--it just doesn't happen no matter what I do diet-wise (I have even gone a week eating very little due to nausea, and not lost an ounce). The opposite is true too though...I can eat junk/whatever and not gain an ounce. Just wondering if it is connected to having tachy, or if this is purely my own body quirk. I look forward to getting to know everyone!!!
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