lloppyllama

Yesterday I went to see my POTS doctor. And he said that for me, not all of you here, but for me personally, its not good for me to be talking to other POTSies because of the way i am. He thinks that it will be best for me in the long run, if i try and not think about POTS and being sick, and just focus on recovery. He says that because of my personality and want for learning, that researching on POTS and talking about it with others, will only make me sicker. I am very intuned to whats going on with my body, and im very smart in the sence of knowing why things are going on, in fact he jokes that he will hire me when im older after college and i can work with him in finding a cure for POTS....which indeed i would love to do, since i want to be a doctor anyway. But anyhow, since im so interested in medical knowledge and all, he thinks that i will almost become content with being sick and not have a drive to get better, and just be ok with not having a life at my young age, which neither he or i want to happen to me! So i guess i have to say goodbye to all of you, I just want to thank you all for welcoming me into this wonderful family, and for all your support and knowledge, i will truely miss you all! I will try and pop in everyonce in a while to get updates one everyone and let you know how im doing. Again thank you for all your help, you have truely made dealing with this illness so much easier on me, and even though i wont be able to talk to all of you as much anymore, i will still know your here, and that is a comforting feeling that reminds me that i am not alone in this. Good luck to you all, and god bless you! ~Mary~

Hello again, My doctor didnt say anything about putting me on florinef, but he didnt say anything against it either. He is just having me on beta-blockers, which are helping some, and are less risky i guess, so if your son hasnt tried those first i would sugest it. good luck! Mary

Well im glad to hear that it turned out ok. Even though you had an upset stomach at leaste you didnt have an extreame reaction. This is a good time of year for the tomato lovers out there, however i would deffinetly not be one of them! I cant stand tomatoes, i like tomato sauce but not the actual tomatoes! LOL Hope your feeling ok now!, have a wonderful day!

I am 15, and my doctor didnt put me on florinef...yet, im going back tomorrow and if he does i will let you know. However i am on BB which has helped my HR to go down very much so!! I do still get the same amount of tachy, and am still just as tired however, i used to get migraines everyday...all day, and now i do still get them most every day, but they go away about an hour later. So though it sounds like im not much better off, i think its alot more tollerable. I would consider going on florinef if my doc thinks its the next best step since the BB isnt controlling my symptoms as much as i would like. When i get back from my appt. tomorrow i will let you know what he had to say about florinef, as i am only a year older than your son, and would probably have the same meds that are good/bad for someone our age. Good luck with your decision!

Hey Lauren, Sorry to hear about the bad news... Though its bad, its also good to know what actually might be going on. I really dont know what i would do if i were you. I agree with you that the first option doesnt really sound like the best plan, doing nothing about it for me at leaste wouldnt be very high on my list. Honestly i might do the EPS study, i dont know much about it so actual facts about the test arent influencing my opinion right now, but i would rather know for sure what is going on in my body. But if the procedure would be very painful/risky, im not sure i would go through with it. Perhaps you could just wait a while and see how things play out, if the tachy doesnt end up going away after being on high salf and fluids and your new meds, then maybe consider your options again. It might be to early in your NCS/POTS diagnosis to be already looking for other things. So i would probably wait and see if the NCS treatment helps with your symptoms, and if so all is well and i would just leave the heart stuff on the back burner, because yes you may have it but its benign so i wouldnt worry bout it. Say that the NCS treatment doesnt help your symptoms improve, i then would go into further research with the EPS study and all. Its really a tough decision to be making, but i think that maybe waiting and seeing how being on your new treatment plays out, and then re-evaluate the situation. Good luck!! ~Mary

Hopefully all goes well for you, as like you said you sure dont need anything else going on in your life right now!!! Sending good warm thoughts your way!!!

Maxine, I think that its probably ok, if this resteraunt had been putting out spoiled food i have a feeling they would have been shut down by now. Though there is the chance this was a one time thing, i would lean more toward the side of not. Alot of times our crazy health can make things smell nasty when really they are fine. I dont know if other people smelt it or not. Also you said how acidic foods dont have bacteria, or something to that degree, i think that is a good sign of leaning more toward no. Also the temperature that it is cooked is going to kill the germs too. If you eat mold/spoiled food usually it will just upset your stomach mildly, unless it is really intense food poisening, and a mild upset stomach, is hard to decifer from our usuall goofy pots, or something else. I would not worry to much about it, you said you were in the bathroom twoce already tonight, and that could be from many things, the stress of your long day, you already werent feeling well, not eating in a while, eating too much perhaps if you were really hungry, or just pots goofing up, for about the last 2 weeks evernight like clockwork at about 7 I am in the bathroom with an upset stomach, im not sure what its from, but i just chalk it up to goofy pots acting up. Try not to worry as that will just make you sick like you had said. I hope everthing turns out fine for you!!! Good luck! hope your feeling better soon!

Maxine, I have the same potato problem, i used to love potatoes and would eat them all the time, then i got sick and they dont even apeal to me, and when i do eat them i get very simptamatic.

Amy, I totally know what you mean when you say, "Part of me wants to think I can be rid of this completely, but the thinking part of my brain wants to acknowledge that this feels like for me will be a chronic condition that I need to learn to monitor." I really want to get better and rid of this illness, but i honestly feel like, for me it may never go away. And i dont know how much i can trust that "vibe" that im getting, because i mean it really could mean nothing, however for years before i got sick, i had this feeling that at some point in my life, i was going to be very sick...haha now dont go thinking im some crazy person all into phsycics and stuff, because i find that kinda out there and all, but still none the less i thought i would get sick, and i did. So hopefully both of our thoughts are wrong, and we all get better completely! Have a great day!! ~Mary

You guys can send me a PM too, and I will add you as a friend!

I have wondered about that...but is that still a problem if you are set to private??

Your chances of getting rid of POTS do depend on how you got it, age can also factor into things. As mightymouse said: "Age may be a factor, but those who have viral onset are more likely to eventually improve or recover as opposed to other types of onset. For some, recovery may take a number of years. For others, recovery is partial. For still others, the condition remains present." So depending on how you got POTS, your recovery outlook will be different, also everyone is different so you cant be totally sure about how things will work out in the long run.

That does sound like it could be a possibility. There are so many strange things that go along with POTS, it really wouldnt surprise me... Im going to see my doc on thursday, and i will ask about GERD, and also see if he thinks the strange hick-ups are being caused by the POTS. Have a good night!

Flop, Thanks for all the informations, it is very helpful. From what I already knew, and what you told me, it does sound alot like whats going on, but I dont know that it would be causing the random hick-ups, however i supose its a possibility. Again, thank you!

Thats good to hear that you are now on the track to hopefully getting rid of some of your awful symptoms! Im so happy for you. I hope that its nothing too severe and that it is an easy fix, even if it means surgery, hopefully it would be one that isnt too invasive. I hope your WI appointment goes well for you!! Good luck, and congrats, I will keep you in my prayers!

I dont know much about this condition, but do know a few things. I think some people here have it, and was wondering if i could get some info about it. In an earlier post i had said how i was having these crazy hick-ups that wouldnt go away. The ones i am talking about now are different then those, and those have since went away. But the other one im talking about is something i have had for about a year (ever since i got sick....roughly) They are just one random hick-up, and then thats it for a while. When they first started i would only get it like once a day, but now they have slowly been getting more common, and now i am getting them like every 10 minutes. It doesnt sound like a hick-up either, its almost like im gasping for breath kind of a thing. Do any of you get this? I have also had problems with my food not properly going down, and then for the rest of the day it will keep coming up, and its not the same effect as heart burn, it does have the acid that burns, but its not the same thing. I'm willing to hear any help or advice any of you have to offer, even if you dont experience this. Thanks!

Thats wonderful! Thank you so much for helping to further educate the medical community on POTS!!!!

That really great Lisa!!! Im very happy for you, its wonderful to be able to get back into the swing of things somewhat. I hope things stay good for you!!!!

Hey Linda I dont know if you care or if this is really relavent to you, but after my grandfather (who just passed away 2 weeks ago) got diabetes after having pancreatitis. You said the test show no diabetes, but since it caused that for him your sugar problems might still be from that. Good luck!

Jan, I dont know if this is what angela meant since i am not her, but the way i took her comment on larger people never get comments about their size, i dont think she was at all inquiring that larger people dont have problems with not losing weight, i think she just meant that society portrays it as mean and hurtful to make a remark to a larger person about their size, but not hurtful to say it to someone who is small. Again i dont actually know how she meant it at all, but i think she of all people is not going to go and be a hypocrite and say anything to a larger person about their weight struggles.

I think it depends on your age partially. For people like me who get it in their teens, there is a very good chance of recovery by your early twenties. Im not sure about the stats for adults, however if your doctor said that you should make a near full/full recovery the odds are pretty good in your favor that you will. You said that you have made a tremendous improvement since when you first started on your path to recovery a year and a half ago. Now you have olny used up half of your time, so to speak, so just look at how much progress you have made in the first half, you still have a whole other half to go. And even though you probably wont double your success, since you wont be having as many things to suppliment into your life to make you better since you already have done the common ones, you will still find more things that work for you in helping you feel better. Good luck! Try to not dwell on what might happen, and just work on now, and getting healthier today and tomorrow, not 2 years from now. Have a wonderful evening!

haha o dear, hmm i dont have any other tips, but i think that the more you put them on the easier it gets to be handling the material and hose.

I would say that it does. The first time i put my waiste high ones on, it was quite difficult, but i have not gotten "strategies" if you will, on how to get them on easier. Some people actually wear rubber gloves, or put powder on their legs, which also helps with the sweating problems aswell. Good luck, hope tomorrow goes smoother for you...

I know how you feel to a degree, different situation though. Right now im re-doing my bedroom so that it is easier for me, healthwise, and its been quite a task for me! I do hardly any work and am already in need of rest, its quite daunting. Its like we feel like we should be able to do so much more than we really can, and then we feel like we are waisting time when we have things to do, even though we really need our rest. Its tough always being ill!! Well good luck with your flat, and hopefully things get organized and your sister is happy with the situation again!

that would be very annoying. I have never had a problem either way, but i have friends who eat so much food and dont weigh more than maybe 100 pounds. That would be really annoying to have to deal with day to day, when you cant control it and its because of a health issue. I guess all i can say is try and not let it get to you, because they really arent trying to be mean i dont think, they just say it without thinking about how it could actually affect you. Just remember that it really doesnt matter what people think, you know the truth and what really goes on in your body and why you are like this, and just try your hardest not to let it get to you, and i know its much easier said than done, my family is really dumb about accepting that i am actually sick, and its not easy to just let their comments breeze by. Good luck with everything! ((hugs))