puppylove

Yes, thanks for explaining. I shiver a lot when I'm cold, and I think I've only had tremors once and it was at the circus. I was trying to open one of my bottle of pills but I was having trouble because my hands were shaking. My dad was watching me and I think it really freaked him out because that has never happened before. I know it wasn't shivers because it was actually really hot in there...

Is a tremor like shivering? Do you feel cold when it happens?

I think I'm going to skip it- I'm easily affected too. Thanks for the reviews everyone. I saw We Bought A Zoo- so cute!

Has anyone read the books/ seen the movie? All my friends are going crazy over it but I havent read them or seen it yet. How graphic are they? And how sad? I kind of want to see what all the hubub is about but I hate things that are graphic...

Every night. My mom always says how can I still have insomnia when I'm on 5 tablets of melatonin but I can't sleep because of the nausea- it's not that I'm not tired. That's exactly what happens- I get jolted awake by it. Sadly, I haven't found anything that helps consistently. Sometimes taking a phnergan or having Ginger tea will help but there are at least two nights a month of being up all night. The times that I have gone to the ER has been because of this because if they don't give me something I won't be able to sleep- I went three days once. I'm so sorry you're going through it too. It's the worst. I hope you feel better tonight!!!

Thanks.

Heart rate is still kind of high but bp is back to normal. Maybe yesterday was just a fluke...

I just started midodrine about two days ago for the second time. Normally it regulates my bp and heart rate to normal levels. Today though my blood pressure has been 150 over 77 and hr in the upper 140s. Has this happened to anyone else? Should I be worried?

Me too!!!!! Everynight like three hours before I go to bed I get the chills and goose bumps. They only way to get rid of them for me is a hot bath. I was attributing it to midodrine because I know one of the side effects is chills...

You should be proud you did it! Sorry you felt so bad though. As you know I can sooo relate.

Thanks guys. It's just so hard because my family was mad at me. And no matter how much I explain to them it's not my fault they don't get it. It's like the rest of the world already doesn't understand and now the people who I used to go to with all my problems don't get me either.

There is only one guy who can get blood from me without poking me a lot. My veins are so small too- I don't know how he does it. One tip he told me that actually helps with dizziness after getting lots of blood drawn is if you force yourself to cough hard. It let's you get a lot of oxygen quickly and you don't feel as light headed.

My parents got us tickets to the circus and I was so excited because I love the circus. We were all going to go as a family which we haven't done very much at all because I never feel up to it. Today is a very bad POTS day. I wasn't going to even try to go but my family convinced me because they really wanted me there and the tickets were very expensive. I have been pushing myself so I tried. It was a nightmare. There was a two mile walk to the building and I got so nauseous. By the time we climbed the stairs to our seats I was shaking and in tears. People were looking. I sat down but there was smoke, fireworks, loud music, blinking lights. I just couldn't do it. My Dad had to take me home. So I managed to throughly embarrass myself, make my family mad at me, and miss out on one of the things I used to love all in one night. This sounds pathetic when so many of you have to go through so much more. You guys are the only ones who understand- thanks for letting me vent all the time.

Have you had an endoscopy? When I was having really bad reflux I got one and I ended up having a stomach ulcer. Also, I know a lot of potsies get tested for gastroparesis. Hope your appointment goes well!

I have been to one before and it did help a little. She actually ended up being right when she said she could tell I had an adrenal problem before any of my other doctors even mentioned anything like that. I'm sure she would have probably been able to help me more, but our insurance no longer covers it. I hope it helps you too!!

That's so awesome! Too bad I don't live near North Carolina .

Thanks guys! It's so hard to find a happy medium because at first all I did was sit at home and of course that didn't get me anywhere. Then I just thought I can't let POTS control my life so I pretended like I dont have it which isn't a good idea either... I guess it's all about learning to find a balance. I love the lions!! My sister is photographer and she got one up close of a lion yawning and it looks like he is roaring!

Hi!!! Welcome . Your symptoms deffinetly sound like dysautonomia to me! I am vitamin D deficient and I think there was a poll done that said the majority of potsies are. The doctor thing is so frustrating, I went through that too. Sorry your having such a hard time. We are here for you!

I don't know if you have a Whole Foods but there is a drink they sell there that at least takes the edge off. It is Aloe herbal Stomach Formula. It helps: nausea/ vomiting, diarrhea/ cramps, bloating and gas. It tastes TERRIBLE. But you only have to take a tiny bit. Good luck!! I know how you feel!

Do you use a wheel chair/ scooter/ seat etc. in general or when your out or just when you are doing a lot of walking? Lately I have been trying to push through feeling bad and go out more. I have never fainted, even when I walked around the zoo for six hours last week. I just feel worse and worse and worse. In lots of situations I could sit ( using the scooters at the grocery, using public wheel chairs at the zoo, sitting while everyone stands at church etc.) but I don't because I feel to guilty like I can just suck it up since I don't actually pass out. But I often feel terrible during/ after. I know I have read about scooters and things before but a lot of those were from people who faint which is obviously a safety hazard. So what is your guy's take on this?

My hands were not strapped down but if I moved them away from my sides the nurse told me not to, so I bet it can change the results.

I decided to go. I had to take a lot of breaks but I had fun. It was so nice to be with my friends again. Thanks for you advice everybody.

Tommrrow my friends and my sister are going to the zoo. They really want me to come and I really want to go because for the past six months I have basically been a hermit and I miss my friends. But the zoo is A LOT of walking. And I won't have any way to get home if I feel terrible. I don't pass out so it's not really a danger thing I'm just scared because when ever I push myself I end up thinking feeling this bad is not worth it. Any suggestions?

Oh lemons. I feel for you. I can relate to everything you said. When the people you always thought you could turn to no matter what suddenly don't understand you/ don't believe you right when you need them. We/ you/ everyone who has disautonomia (or a illness for that matter) are not a waste to society even though at times it seems like we can't do much. You are on this planet for a reason. It's not your fault. That's been one of the hardest things for me to explain to people. I know what you mean- if anyone felt the way I feel on bad days they would never tell me I was just lazy. As for the stress outlet I find doing anything artistic is helpful for me. Or playing with a pet- they always understand. I'm glad your feeling better physically that's great news! We always understand what you're going through. (((((hugs))))))

Wow! They are so cool! How big do they get and what do you feed them?