puppylove

This is so ironic because I just spoke with a POTS exercise specialist who works with Dr. Abdallah yesterday. He said that exercise is an extremley important part of recovery, but it's different for everyone. He makes people plans that will work for them. Maybe it's running three miles everyday or maybe it's flexing your muscles while sitting in bed. He said the most important part is not to do too much, that will set you back.

Thanks! I decided to get one of those little fold up chairs and carry it around with me. If I really feel bad I might try to get a wheel chair at the fair, but I'm going to try not to.

Yeah, they will be there. I'm going to try and explain to them how I know I get through it without one, but I'm not having fun.

Thanks everyone. I was talking with my family about it and they said they don't think I need one, and I shouldn't get one. I'm really surprised. I didn't think they were going to say that... Stuff like this just really makes me sad. If my own family thinks it would be dumb for me to use one, then I can't help but feel like I shouldn't use one. But I don't want to just walk around in a daze feeling sick and dizzy and survive my sixteenth birthday party. I want to have fun.

I think I posted something similar to this a while back, but I just can't make up my mind this time. This weekend my twin sister and I are having a sweet sixteen party, and we are going to the county fair with our friends. I definitely won't do most of the rides, but I like the other stuff. Anyways, whenever I do stuff like this I only enjoy myself a little because it just makes me feel so sick. The heat, endless standing and walking, lights, noise... I just tried a small amusement park with my family today, and I felt really bad. I'm sure I could use a wheel chair at the fair. I just have never used one before and I would feel so self conscious, especially in front of my friends. I guess since I would enjoy myself so much more, I should just say forget what people think... But what if I want to get up for a few minutes, people will think I'm a faker or something. Ugh, I just can't decide. What do you all think I should do?

Omg- salads are one of my worst foods! I used to have them all the time, because like you said they are so light, but now they make me so sick! I tested negative for gastroparesis, but I still think I have it to some degree. Maybe it's just blood pooling in my stomach, but sometimes I can eat something at night, feel miserable, abd still feel like I haven't digested when I get up the next morning. It is so awful. I so know what you mean about not knowing what foods will make you pay later. One day I could be fine with a certain food, and the next day it rips my stomach up.

Thanks for all your opinions. I will let you know what we choose.

I just read Snow Flower and the Secret Fan, it was so good!! I love that book too.

Both of my doctors don't really know what else to try right now, and suggested I go to Mayo. Both locations are pretty far away so it would be a big ordeal since I have three other siblings, and obviously one of parents would have to take me there. I was wondering how beneficial it has been for people who have gone, and what they do? Also, I think they said I would be there for a week if I went, how long did you stay?

I'm not really sure what this is, because I haven't really felt like this before. I was at a doctors appointment and I started getting so dizzy, but I just brushed it off. Then when I got to my car I felt really dizzy still and weak/ nauseous. My mom wanted to go to this thrift store by my doctors office, so I said I would try to come. When I got in there I was still so dizzy and nauseous with Palpatations I really thought I was going to faint, which never happens to me. So I sat on the floor and we went home. I'm still so weak, dizzy, and nauseous plus I have a fever and no appetite. I'm so worried my POTS is getting way worse and I'll stay feeling this way. Nausea is/ has been my worst symptom, and I could at least walk around my house but now I can't. It's just so confusing to have different symptoms/ new symptoms everyday.

Probably either shortness of breath or purple legs. My dad was with me when I had a really bad shortness of breath/ tachy episode and I think it really freaked him out. Also, before I knew I had POTS when I would go in the locker room after gym my legs were so purple from two hours of standing and everyone would be like "ewww what's wrong with your legs?!". I obviously didn't know so it was kind of scary.

I went to an energy healer. I'm up for anything at this point. So far (I have only had one session) I haven't noticed an improvement in my POTS symptoms. But I have noticed improvement in my happiness. The experience itself was pretty amazing- I finally felt completely relaxed for the first time in a while. And after it I just feel more joyful, not so hopeless. My mom can see glimpses of the old happy-go-lucky me. Really, I was skeptical, but it seems to be doing something. The energy healer said she thought she could help with my POTS issues (she actually knew what it was! ) and balance my energy which would make me feel better in general. I'm going to go back so we will see how it goes.

I had a few symptoms every once in a while, but still lived a normal life. Then all around the same time I had my tonsils out, my mom got breast cancer, and I had a growth spurt. So I'm really not sure what set it off, or if was all of those combined. But I was worse after the tonsillectomy.

When I asked my doctor this, he said there wasn't an exact number, but as long as I could still hold a conversation and wasn't huffing and puffing . That's just me though, it's probably different for everyone.

Did you just "jump" right out if bed before it happened? If I don't give myself at least thirty minutes after I wake up to just lay there and get up slowly I am so dizzy and off balance.

That is great! Jogging 2.5 miles is just amazing- I'm so happy for you!

Whole foods has a pretty good gluten free section. Also, if she likes icecream there is a lot of icecreams made from coconut milk that taste soooo good. And the flavored ones don't even taste like coconut.

Usually whenever I go out, especially someplace with a lot of artificial light, I feel like I'm in a dream kind of. My vision gets blurry and I just feel off balance and... weird. When it gets really bad, I don't even feel like my brain is working right and I just kind of zone out. I guess this could be from lack of oxygen to my brain? Does anyone else get this? Do you know anything that helps?

4 or 5 times I think. I usually go when I have been awake for days and or dehydrated due to stomach problems.

I get that heavy stomach feeling too. And nausea, especially after eating.

No doctor has really told me if I have hyperpots or regular... But I have high blood pressure. So does that mean I do? And would that mean salt loading isn't a good idea?

Thanks for all of your ideas. I fell asleep by 2:00 am last night which is an improvement for me.

My sleep schedule is so messed up. With nausea, adrenaline surges, other stomach problems etc. I don't fall asleep until like four in the morning. Then when I finally fall asleep I can't get up in the morning. I take a natural sleep pill with melatonin etc in it. And i have started exercising. I have just felt so stuck latley because nothing helps sleep wise or stomach wise.

What I do is really take my time waking up. I slowly let my body adjust and use a wedge pillow to slowly make my self vertical. I also immediately eat a yogurt or digestive wafer when I wake up. It seems to settle my stomach.

For the past week my stomach has just been an absolute wreck. I can't get off the couch or even sleep at night. I was attributing this to mestinon because I recently started taking it. I'm not so sure now though. I have had a stomach ulcer, last year. It supposedly healed months ago. I have just been noticing this past week blood when I use the bathroom, but no vomiting blood. I have a doctors appointment on Thursday, but I don't know if I should be seen sooner. Does POTS cause stomach ulcers?