puppylove

Sorry to hear that. I can so relate! Hope tomorrow is better!

Thank you so much everyone. It always makes me feel better to talk to people who understand . I have a couple good friends, but they really don't get it of course, and I'm always the one asking if they want to hang out. I think I'm definitely going to try and find people in my area with POTS- thanks for that idea! The Gastrocrom still helps a little with nausea but my dizziness has been bad. I'm in the process of getting compression stockings so hopefully they will help with that. I hate bananas- that sounds fun! I have been entering art completions where you send in your entry and I really love art so I will look into that. Brynne- wow I could have written your post lol! I'm in homebound too and I feel exactly like that. Thanks again guys.

I'm really really lonely and I just miss my old life so much. I really don't go out ever anymore and it's making me stir crazy, but I just feel too sick. I miss my friends and interacting with people my age, right now I just see my homebound teachers. I so wish I could go back to school, but it just seems impossible right now. Everyday I think how much I want to be out making a difference in the world and living life to the fullest, so it's just so frustrating to end each day knowing all I did was sit on the couch and write two paragraphs for homework. I have been trying to push through and went to the grocery a few weeks ago which was a horrible experience. I used to be able to walk around and feel sick in stores but lately I physically can't even walk around. I think I slowly need to build up to going out again, I'm just not sure how? I'm going to try and hang out with my friends over spring break I just always have to cancel... Ughhhh. Thanks for listening guys .

Me too! It's the worst feeling... I got an ulcer from it too two years ago. For some reason though the nexium and stuff makes no difference for me.

I'm sorry to hear that too- sounds like a horrible day . Hope you feel better soon!

Aww this is cute! I love it!

WORSE. Exercise makes me feel horrible but I try to do it anyways.

I don't eat for that day I just drink as much as I can. Other than that I sit / lay on the couch...

Yep! I actually think it's the other way around for me though. If I have a vivid dream (especially a nightmare) it takes a looooong time for my heart rate to go back down and it makes me feel sicker. Probably the adrenaline?

Thanks everyone! It's still about the same not debilitating but not perfect, and i'm slowly increasing the dose. All my other symptoms are still there :/. I don't know if its only supposed to help with nausea? I tested negative for mast cell so that's good I guess.

Aww that's really cute .

YES! There is probably one day a week I won't eat anything. Eating small amounts when you can definitely helps.

On my very worst POTS days my eyes flutter when I try to stand. I don't really know if they roll though.

Definitely! It's helped me so much.

Nights are usually the worst for me. Although mornings are bad when I don't sleep at night. I have rediculous insomnia but once I fall asleep I'm ok.

Two of my cousins have POTS. CFS also runs in my family.

I started Gastrocrom last week and so far (knock on wood) I'm noticing a difference! Not a huge difference, but still. Before I constantly had that omg if I move I'm going to be sick right now feeling and now it's just a feeling of mild nausea/ queasiness. I'm so excited, no medication I have tried has done anything besides make me worse in the past.

I felt really sick on the plane and in the airport, but a couple hours after I landed I was ok again (or at least as "ok" as I was before the plane ride lol). I hope you go and have fun!

I was just prescribed Gastrocrom, has anyone else tried it? Did you have side effects? I'm a little nervous to take it because I have been reacting badly to medications lately... Thanks!

Together We Stand: Riding the Waves of Dysautonomia is a great book. It's packed full of info, a lot of it is for teens and kids with POTS.

I try to do homework/ schoolwork. I have to take a lot of breaks. Also, some small chores. I like to do my hair and makeup on good days because it just puts me in a better mood . I do art and walk my dogs when I'm feeling up to it. I totally know how you're feeling. I don't accomplish a lot most days and it's very depressing when I really want to get out there and make a difference in the world.

I went to the ER yesterday because I hadn't slept/ eaten much at all for three days due to extreme nausea. Surprisingly, they didn't treat me like I was nuts! (Yay!) And they gave me three bags of fluids without even asking! (Double Yay!). They also gave me a "GI cocktail" of may lox and lidocaine, which helped a tiny amount. They gave me phenergan in the IV. I have had the pill form of phenergan orally and I was fine in the past. I had a horrible adverse reaction to it in the IV. I started shaking and my eyes were fluttering and I was blacking out even though they elecated my feet above my head. My heart rate was in the 170's. There I stayed for the next eight hours until it wore off. They prescribed me a new nausea medication and I'm going to Children's Hospital of Philadelphia as soon as I can.

Okay, I understand now. Thanks

I found out recently that a cousin I have never met, who is also a kid, has POTS. And another one of my cousins has been really sick lately with similar symptoms to mine, and they are looking in to POTS. Chronic fatigue and fainting also runs in my family. If my POTS is genetic would that mean it is Mast Cell Disease? Or is most dysautonomia genetic? I could see how someone might pass down mast cells, but can you pass down POTS? Sorry if this doesn't make much sense, it's really late . Thanks!

I'm sorry I don't have any answers, but I wanted to let you know you are not alone. I wish I could help. Don't let that doctor bother you or make you feel worse. I have been switching doctors a lot and you just have to tell yourself he is wrong and let it slide off. I really hope you feel better soon.