lloppyllama

Hi heather,

It is very possible to outgrow pots, i myself am hoping to! (but i hope i get rid of the symptoms, unlike you have, or so it sounds) But yes that is a very possible possibility since you got it when you were a teenager.

Welcome!! and good luck!

hugs,

Mary

I used to feel really bad during my period and around it, but now that i have started midodrine, it is the 2 weeks before my period that i feel the worst...during my period it is worse than it used to be, but it my symptoms get extra bad and intense the 2 weeks before. So i guess that would be hormones, plus my periods are very light usually so im not losing too much blood, which is good since we all need more!

wow, that totally stinks!

Just a few months ago i was told by my doc and my mother that i needed to leave the forums and stop thinking about being sick. So i tried it (having a feeling it wasnt going to work, but still did put full effort into trying and doing it) and it ended up making me rather depressed every day, crying in my room because i felt so alone, and felt like my life was so sucky (my mom doesnt know about that part though) this then resulted in my not thinking about "being sick" and then not taking care of myself, so i would try and do "normal" teenage things, thinkin im "healthy" and then get the blow in the face that im not, and i would get really depressed and get even sicker.

I finally went to my mom and told her, and she let me come back to the forums, and think about being sick, and i have since been dealing with it much better!

Its been hard staring school again, and being constantly reminded of the fact that im not normal and cant do fun things everyone else can, but im deaing as best i can...

So basically, i do understand how your feeling...i hope things get better for you soon!!

Mary

I actually can shake my eyes back and forth really quickly, however i have to make them do it, so i dont think that is the same thing, and it doesnt look the same as that guy's, its qutie a bit quicker.

awesome, i will be on the lookout for that Gatorade!

Hahaha, thats great, perhaps he was a potsy after all!

Hello, Welcome, sorry you have reason to be here, but none the less were glad you found us!

Its hard having to be sick all the time, and deal with others not understanding the stuggles you go through on a daily basis. Some days it will be harder than others to deal with people who "just dont get it" but hopefully in time you can figure out how to deal with it, as I'm sure you will

You have gotten some excellent advise from the others here so i really dont think i have anything to add, but again welcome!

Have a wonderful day!

Mary

Hello,

Mornings arent fun for me either, but i actually use the alarm from my Ipod, and it doesnt keep going, it just goes off once and then stops. I like that because with a regular alarm, I get scared and the adrenaline messes me up. I do have to take a BB and then go back to bed for a while before it kicks in, just like you. So i just set the alarm again so that i make sure i dont fall back asleep.

I dont know if the alarm you use is like the one i have or not, but if its not it might be worth looking into as it has been a big help for me

When i had mine to check for like tumors or cysts and such, it was clear and normal!

Hello!

I have some good news and bad news i suppose you could say. After starting my new plan of "not thinking about being sick" that my mom and doc wanted, i really feel as though it made me worse. In the sence of my mind isnt in the right place for getting better as im trying to not think about being sick and then not treating myself properly. I also was feeling rather depressed quite alot of the time, i think that has to do with me "not thinking about being sick" and then ending up reasizing i actually am sick and cant do the things normal people my age can, and then being sad and angry and upset about it.

I talked with my mom about this, and how i think that it is a good idea for me to come back to the forum. Not maybe as regularly as i did before, but still be alloud to use it when i need it or want to help people with questions. It was pretty hard for me to convince her of this, as she is very set in her ways, but only because she is worried about me and wants me healthy. But also its hard for me to have a read "argument" or discussion with someone who actually has a "clear" mind, as its sooo hard for me to come up with what im trying to say, or even think sometimes. But i told her that, and told her that im probably not going to have a good argument for my side of the story as its really hard for me to think, but we tried it her way, and it didnt work. I have given her no reason not to trust my judgement, and told her that i know myself well enough to be able to know that yes this might be bad for some people who are sick as it can put their mind in the wrong place, but i dont think that is a issue with me.

So finally she decided to give it a go, Im really hoping that i can start to feel better about this, and start treating myself better and getting in all the fluids and salt that i need.

So Im very happy to be back and see how all of you are doing!

Mary

Hi

I am not on any of the same meds as you are, adn i get goose bumps alot, mostly it will just be on one half of my body at a time. But its not when im actually cold, usually its when i touch something, but it does happen other times.

Thanks,

I feel that a huge part of making me feel better, and almost useful, when i feel so sick i cant even do stuff, is helping other people, and giving advice. I have always loved to help others, but now more than ever i have a much greater empathy for people, and some days i feel like im not even making a difference or doing anything in my life anymore, and so being able to come and give advice makes me feel better and feel like i do have place in this world, even when i am sick.

Hey Emily,

Its not just the doc, its my mom, she is really against it too, along with the rest of my family, and as much as i want to, i know that its not a good idea to go againts what she says i can and cannot do, so i guess i wont be posting for a while. Maybe, and hopefully she will figure out eventually that it really is only posative, and that its not making me sicker.

Lthomas,

I know what you mean, however my doctors do believe i am sick, they just think that i will get better easier if im not dwelling on it, now i dont agree with them entirely on this matter, as i think these forums help and are great for a wonderful support system. But i do agree with them in the sence of, yes we are in pain all the time however its not the kind of pain taht is caused my something actually being wrong i.e. my leg isnt broken, it just is hurting because my body is goofy from the pots. So for this pain we just have to push through it and try and stay as active as posible.

They tell me that i am deconditioned too, which im not so sure about, i think my lungs and that kind of thing are, but i am still VERY strong, as i used to be a gymnast, track runner, and dancer. So i have a very strong body still, and am stronger than all my friends who are still active. So i think its a relative comparision, like to how i used to be, not to others, so you cant compare yourself to other people's, just your own. They gave me the impression that i was not very pain tolerent, when i KNOW that isnt the case as i am quite pain tollerable.

I dont really know what to say, as i think you guys are right, and my mom and the docs are wrong in saying that this is actually bad for my health, but they dont realize that im not overly obsorbed in pots and being sick, i just enjoy learning about it, as medicine is what im interested in. However, i have to do what my mom says, so i guess that means no more forums for me, for a while at leaste, when it doesnt change anything and i dont get better from not getting help and support from you all, maybe i can convince them to let me come back on a more regular basis.

Take care everyone,

Mary

I know what you mean, and for the most part i think you all are right. It really cant be my own desision since, im only 15 and my mom thinks the same as the doctor, she did before he even mentioned it. So as much as i think its wrong, i have told my mom and voiced my oppinion on how i feel and she still thinks otherwise, and i guess it all boils down to the fact that im still just a kid and i have to do what they say. But as good as my doctor and parent intensions may be, we all who deal with this know that really it does help to have these people.

I do see what he means when he says he wants me to forget about it, but how can i when im always in pain, or always haveing to take meds....which he ordered! Not that im against them they help a great deal, but its like how does HE think i will forget it when im popping pills every two hours...

I dont know and this all only happened yesterday, so i havent fully gotten my thoughts rapped around it all, but im hopeing i can find a happy medium.

Also he thinks that i should have a good social life, which is a good idea, however i have never been very social, i have always been the kid who maybe goes out with friends once a week, and im very into learning and thats what i enjoy, so when i get bored and my leg hurts i try and figure out why, but to mom and doc thats bad and then they think im overly obsessing, when really i dont care about the fact that MY leg hurts i just find it intersting, i dont care if its my leg or theirs i still find it interesting, i just know when my leg hurts.

It also may be that i am a very un-ordinary teenager, or human to be frank, and im quite difficult to "figure out", so i think when they all think, o this is bad she is way too into all of this, im really not. there is a saying about how the mother knows best, and the docs always ask her stuff and say well she is your daughter so you know her the best, um no. i dont feel like my mother, or any other person, except for one friend of mine, actually has me "figured out". So i dont feel that the doctors get to know ME, because well no one has yet really, and so what my mom says isnt really what goes on with me necisaraly.

The other hard thing is, i do trust this doc alot, because he is someone who i think actually can read me better than others, perhaps because we are in fact alot alike, but i dont know since he actually can see who i am somewhat, i will trust his judgement more than others.

Ok im done babbling on.....clearly im having trouble sleeping as right now everyone else in my fam. is sleeping....fun old POTS! haha

Well i hope i can figure something out, so that i dont have to stop messaging here, but if not, its great to have you guys on my side, and even when im not here, i still know you all are here for me if i really need you, and i want to say thank you for that, it means a great deal to me.

Flop,

What you said pretty much sums up my plan, even though my doc said its not good to think about everyday....i think that is actually imposible, however i can not think about it as much, and not let it define who i am, which is perhaps the road i am heading towards.

I will still check in to see how everyone is doing, and maybe when my doctor thinks it "safe" i will post a little more....or hopefully this wont happen, but...if im not better by the time im in college, then restart again, because I know what limits need to be put on things, and how far is too far, honestly i havent reached that yet, but my doc and parents are worried and so for them i will cut back drastically as i do not want to be in a fight with them as that WILL make me sicker. But as i was saying if im still sick in college i could then start posting again more frequently, as i really think that its a big help in feeling better and NOT thinking about being sick, but these people just cant see that...

Thanks for all the support you have given me, I will try and keep in touch,

Mary

Thanks guys,

I think your right, this deffinetly doesnt need to be a black and white situation. When i have a question that i think you guys would have good answers for, i can post it and get the information needed to help me get better, and still not be thinking about being sick all the time. Thanks for all the warm wishes!

((hugs))

Mary

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.