Magnesiumgirl

What usally helps your symptoms? If anything ever helps, could you doing while travling?

If your problem is the interstate making you dizzy, I would take the extra time and go the back roads...

Other than that, I really don't have any advice. I hate travel

The going half way: YOu would know best with your body, personally it wouldn't work for me. I would sleep for days. but we are all so different that it could be the absoulte best thing for you.

Hope I helped at least a little.

-M

YAY! Happy for you!!!!!!!!!!!!!!!

When I finally stopped fainting, well, that's the best feeling IN THE WORLD!!!!!!!!!!

Congrats!!!!!!!!!!!!!

Be as pushy as you need to be with doctors! you are there because you are sick, when you are sick, it is primarily your job to get help and get better. Espically when your body is going outta whack.

I didn't have any of the doctors that have been mentioned. so maybe it was just the ones I saw that are not very impressive...

In the words of mdcountrygirl; Hopefully that was said politely enough...

LOL! Casper, I always thought the same thing about the word Dyslexia! I always mix up the s with the x...

Don't worry, your post is readable; really good considering the factors you mentioned!

Hi!

I have major edema. Neither of my doctors are sure what it's from. There has been talk about it being from the infection that threw me into POTS, but we don't know for sure. I'm not on florinef or hihg salt either.

Hmm. I was once put on it, but that was before my POTS set in.

I might have to go back on it, see if I can get some imporvment.

I don't see how it could hurt someone.

Hang in there! It is so so valuble to never give up hope and never give up trying! It is normal to feel down about this! It's scary. This is so hard and when doctors don't know what to do, you feel like nothing will ever fix you.

Like I said before, hang in there! *hugs*

Hang in there! I hope everything goes well tomorrow!

You guys are so great!

I really don't know what to tell you. Have you talked ot your doctor about this? I do have social anxiety and some other anxiety issues, but not the other things you mentioned about feeling too skinny.

Wow. Sarah4 I have never heard of that before. That's not one of my problems, but I am definitly going to be googling that later today.

Your so sweet, Reen!

I just wanted to post this and let you all know after I posted something that had so many errors I noticed immedatly-even I could barley read it! We just have to keep laughing it off!

Dani: You could be talking about me! Only I don't/can't nap.

When I am stressed beyond stress i.e. finals week, a 800 mile round car trip, I sleep 20 hours a day! There is no waking me up and it can take me a couple months to finally get enough sleep! Then i'm back to the insomnia gamnes...

Thanks for the HUGE response!!!!!!!! Keep it coming, it seems that a LOT of people can benefit from these tips.

Yes, I used to take melatonin , I have other health issues that cuased insomina the POTS just made it worse, however, once my heart rate started doing bad things (I have one that swings from high to low) I stopped right away. One of the things it does is lower your heart rate (or makes your body, you get the idea: Heart rate already 50 + Melatonin = something not good is how I picture it). But if you have problems falling asleep, talk to yo0ur doctor, because it worked for me when all the tricks on the website provided by MomtoGiuliana didn't work for my body. However, I have friends who swear by those... I don't think to each his own has ever been more true

At least now I have some ideas and medications to ask my doc about

Yuck! I def. do not get as much salt as i should...

I hate the taste, so I either add it to my water or gatorade, or I eat foods that are already high in salt, like canned soup. Or Chipotle burritos

I just wanted to let you all know that I am dyslexic, so if you see something I post with repeated and/or misspelled words or letters mixed up, I'm not just being rude or lazy, I can't help it. Later if and when I see my mistake, I do my best to go back and fix it.

I just thought I should let you all know.

-M

Thanks for the quick reply, Caroline! It hasn't made you feel weird at all? That's the first one my doctor mentioned, but I asked to do some research on other meds first sinse I had seen a youtube video of a girl with pots doing stuff on ambien she swears she didn't remember. People in the comments had had similar expernces.

We were also looking at some anti-deppresents sense I do have some pretty bad anxiety issues during the day.

That is amazing!

I can't beleive it took me till now to find this post!

Alrgiht so, My insomnia has just gotten worse to the point where I am hardly sleeping at all(up till five am or LATER, and I have to get up by 8 everyday). It's gotten to the point where my doctor, who knows about and beleives the POTS, is talking about some kind of sleep aid. My quetion for you guys is; what do/can you take that doesn't make your Dysautonomia stuff worse. I need to sleep, yet I am afraid to take any thing

Also, I am completely open to any alternative/holistic/herebal remedy.

Disclamer: I understand that everyone is different and what works for one of you may or may not work for anyone else.

I just would like to have a better idea of what is and is not tolerated by others.

One day, none of us will ever be misdiagnosised. That is a horrid thing to do to somebodies pysche.

I've been there my self, not with that dx, but I do n=know how horriable it is to receive a psych dx when you, and those close to you, know you are ILL!

Hang in there everybody *hugs*

How exactly are your hands and wrist turned? I can get this during the day if I am holding something funny, but it's not a symptomf or me, just some overextended muscels. At least, I don't think it's a symptom, but I could be wrong.

Big thanks to the four of you!

It was majorly frustrateing because once when I was sick but my POTS wasn't bad yet I had about 15-20 tubes taken in one month, and my other symptoms didn't flare besides the normal, "wow, they just took alot of blood I need to eat something" kind of sick. yesterday was only four tubes and I had major hands and feet turn purple blood pooling just from sitting up in bed. If any of you are in the same kind of sitiuation right now, the salty food, gatorade, and water helped trumendsly!

Do you guys have worse symptoms after a blood draw? If so how do you deal with them? Any tips for recovering quickly?

It has taken me all day of water, salt, and gatorade to finally get out of bed. I don't remember having this problem before, but than again, I'm not as sick as I used to be.