puppylove

Hiya! I can so relate to the insomnia thing. It's one of my worst issues right now, and I haven't found anything that helps yet either. I also jerk awake as I'm dozing off and I think it has to do with adrenalin.

It's been one year today since I have been diagnosed with POTS. I'm still not any better, but I don't think I'm worse either. I have definitely made progress doctor wise and learned a lot... I just hope I get actual results soon. :/

I used to be fine in math but now I can barely do any mental math at all. It's really embarrassing especially when my homebound teacher is sitting right there staring at me. :/ I guess it could be from lack of blood to the brain? Has anyone else noticed this?

For me it's a lose lose. If I don't eat (I've gone weeks without eating) I mainly get jittery. If I don't eat longer than a day my symptoms get worse, dizzy, fatigue, foggy. The other lose is if I do eat, no matter what, I get extreme nausea, my reflux kicks in, stomach cramps. I also have to time what I eat. I can't leave my house 2 hours after I eat anything because of the motion sickness. I don't like to eat in the mornings but I love my coffee so i'll have a cup. Which leads to eating a piece of toast to help with the caffeine jitters. But then I won't eat until dinner time and it's something super small.

. Me too! Eating makes me feel awful, but if I don't eat for a while it makes me feel bad too. I'm on this weird schedule where I won't eat for a day and then if I feel better after that I will eat too much which makes me feel bad... Ugh vicious cycle.

Thanks everyone. My new cardiologist is very nice and wants to help me find the cause, so I still have hope. Hippychic- thanks for showing that to me.

My pets make me feel so much better. We have four dogs ( we are foster failures ) a cat, a conure, and fish. The macaw is so gorgeous! Animals are so good at telling when you're not feeling well.

My gastro doctor called today and said "there is nothing more that he can do". Two blood results have come back that there is an infection somewhere in my body and nausea/ other GI problems are still my worst symptoms. He thinks my other doctors should take care of it. I guess I might get a new one or just stick with my cardio/ endocrinologist for now. Just a little disheartening when they say stuff like that.

One of my doctors said "pleasant young female". I think they are just trying to describe their impression of you for other doctors.

I have my first appointment with one in two weeks. I'm hoping it will help me to find out the cause of my POTS, and hopefully then they will know how to treat me more efficiently. Good luck- I hope your appointment goes well!

I tried to get an appointment with him earlier this year, but when we called we couldn't reach his office. I'm guessing it was because they had just built that place? I think that there is information on the clinic on the site Stop Pots VA.

I hate night time. I get the worst adrenaline surges that make me feel scared for no reason. Plus, nausea and acid reflux are worse when I lay down.

I love smart water! I don't think there is a significant amount of salt or electrolytes in it because on the bottle it says electrolytes added "for taste". It really does taste good though.

It so depends on the day. One day I might have trouble getting off the couch and the next day I can walk my dogs around the block. I can never make plans because of this...:/

I'm grateful that POTS is not deadly. And I'm grateful for Smartwater. And for my dogs. And for recumbent bikes. And for doctors and nurses who really care.

I have been to one and I think it helped. I didn't notice a huge change in symptoms but it did make me feel more relaxed and less depressed. Sadly, my insurance stopped covering it.

You're Welcome. I'm slightly lactose intolerant, but I think that's it... I really haven't found anything yet that consistently helps. Sometimes phenergan will take the edge off and other times not. Also Ginger or aloe Vera will help sometimes too. It's really hit or miss though.

I think I have been three or four times. I go when I'm up for over two days straight with nausea. They give me this drink it's maalox mixed with a numbing agent and it numbs my whole GI tract so I don't feel anything. Then I usually just get sent home and sleep for hours. Besides that drink they really don't help much...

Hi! Yes to question 2! GI symptoms are my worst symptoms and they appeared first. I have tried chiropractic therapy and energy healing and I did notice a slight difference after the first couple of sessions but sadly my insurance doesn't cover it either. Welcome to the forum!

When I was younger I had frequent urination and was tested for diabetes and urinary tract infections all the time but nothing ever showed up. I guess that could have been an early sign of it. Also like two years before my symptoms really kicked into gear my legs would randomly turn purple and of course no doctor knew why. Now I know it was definetly blood pooling.

Thanks so much! I'm going to try that.

I'm so sorry. I don't really know what to say, but I wanted to let you know you're not alone. I have felt like that too. It's just so hard. I just remind myself that I'm here for reason and there has to be a reason that I'm going through this "experience", even if I never find out what it is. I want to fulfill my purpose here even if POTS has to come along for the ride. Don't give up, you are strong enough.

About five nights a week I get so afraid feeling at nighttime. I think it's from adrenaline building throughout the day. I think I posted a thread similar to this a while back about also getting a feeling of dread. Anyways, my question is is this the kind of thing that breathing exercises would help, or since it's like andrenaline thing that wouldn't help? Also what can you do for adrenaline? Thanks!

I have been having more/ new symptoms like really bad swelling and water retention so my new cardiologist thinks there is something going on besides POTS and we have to figure it out. I have been getting even more tests done, especially bloodwork. I never used to look at the results myself but people on here said I should get a copy for myself and I have. Three times so far the different doctors have called and said my tests were normal and when we got copies they showed abnormal things. One of them showed high monocytes, one showed my kidney was in the wrong spot, and a third one showed something wrong with my thyroid which we are looking into currently. I don't get why they don't tell me this stuff? Even if it is pretty insignificant it could still be a clue to finding out what's wrong with me. Has this happened to anyone else?

Definetly nausea for me. If I could get that to go away I could probably go back to school...

I'm 16 and every cardiologist I have been to says that they are confident I will grow out of it by the time I'm in my 20s because that's what happens with most teens who get POTS. I really hope I will and that you're son will too.