hippychic258

I was just thinking how many times I have been to the emergency room due to pots and thought I would ask everyone how many time you have been.

I have been there close to 30 times and out of those times only 3 times had any of the doctors heard of Pots.

Before I left I was able to sit to go to the bathroom and not have any symptoms now just sitting for that amount of time I get the nausea and dizzy and feel like I am floating.

I made it to the pots treatment center the first day it was not what I expected it was a small office on the 10th floor of the building and the actual name on the door was Pain management or something like that everyone there was really nice there was Dr kaprianuo and 2 other girls that worked there. They said had to sit in a recliner the best position for pots patients I told them I would try but I didn't think I could so I tried and it lasted about 2o min and I started to feel sick so they moved me to a couch ( they are not set up for bedridden patients) so we did the consult in her office so I could lay in the couch. then she wanted me to come back in an hour for a group educational session so back down we went to the car and waited an hour and went back up (my husband has to carry me I can't even sit in a wheelchair) again I had to get in the recliner 30 min major episode shaking nausea dizzy feeling like I am going to collapse moved back to the couch the Dr. tried to have me do a breathing exercise but when i am in that state I cant focus on anything so we left went back to the room and have been sick ever since (this was monday). She is a BIo Physiologist and I think she is an expert in Biofeedback not so much a pots expert at least no for my extreme case. The way it was explained I think it can help but you have to be well enough to do it and if I was feeling that good I prob wouldn't go there. As for being a Pots treatment center its not what I expected. But I am sure they have helped many people. I wish I could go again and see what else they do.

So it took us 3 days of driving to get to Texas I am 5 months bedridden so I had to Lay in the back of the SUV it was set up just like my bed. It was an 18 hour drive and I kept getting so sick and felt I should turn around and tough it out ........What a mistake we arrived on Sunday went on MOnday and have been so so so sick went to the ER last night and surprise, surprise they did not know what POts was and did blood work and of course it was normal, anyways all my old symptoms have come back I feel like this has reversed all my progress. Now that I am here I am to sick to go to the treatment center, and I have no idea how I am getting home I can't make the drive again. I thought I would leave here feeling better but actually i am going home sicker than when I left. My question is has anyone traveled in a car a long distance during a flare and did it set you back? Is there anything I can do?

Thanks

I get very very nauseated and a feeling like something is going to happen and then my heart races and I get chills, is that an adrenal surge? Sometimes I get that and my heart doesn't race.

What does abdominal pooling feel like?

I am not sure I just know that when I was able to sit it made me sick and i sat in a recliner yesterday and I got so sick rapid heart rate nausea shaking and someone said I may be pooling but I just wondered if anyone could explain what it feels like.

How do you know if you have abdominal pooling? What are the symptoms and what makes it happen, eating, position, etc? Do you always have it or does it come and go? Do you feel faint with it?

Thanks

I felt a little sick the whole time I was there, my husband put me in the recliner. I cant sit either it .

I thought I could handle being in a recliner because even though I am bedridden I can't lay flat I am always propped up in bed, but wow was I wrong I got so sick . I crashed after 30 minutes I got so sick, and it lasted for hours,,,,,,, what is the big difference?

I have extreme eye sensitivity to light, computer, tv etc...it makes me dizzy and sick. Just wondering if this will go away after my flare up goes away and any meds help it? Also how do you explain your eye sensitivity symptoms?

Thanks

Pam

I had my husband pick some up today, going to give them a try.

I hope you feel better soon!! The symptoms are very scary but hang in there!

Before my flare up I noticed my symptoms were delayed for example if I exercised in the morning I wouldn't have any symptoms while exercising they would come later hours later, now I notice the same thing if I try to stand or sit up to much it affects me later or even the next day. It makes it hard to know what to do and how much to do because of the reaction later on. Anyone else experience this?

Thanks

MIne has been constant since Feb. 3 years ago was my last flare up and was pretty good until Feb.

Abbyw What meds are you on?

Just wondering if anyone has had biofeedback or knows someone who has had biofeedback and what it helped and what it didn't.

Thanks

I get these symptoms also and check my sugar and it is fine, very frustrating.

SomethingClever: Are you able to get around walking etc.? What are all your symptoms?

Thanks for the encouragement!!!!!! Right now when I sit up I get vibrating sensations and head pressure no tachycardia, and dizziness and it will last quite a while.

So my concern is how bad can I expect my symptoms to be when i start to walk again? How hard is it going to be for my body to adjust to the upright position after 5 months? I am having anxiety about this I don't want to cause all my symptoms to come back. DOes anyone have there own experience with this?

Thanks

Since my flare up began in Feb. I have only been able to lay on my back I can't lay on either side, I keep trying but after not even a minute I get horrible dizziness and weird sensations in my legs and the longer I try to stay that way the sicker I get. Has anyone ever experienced this and what is it? Yes for 6 months I have been on my back it is horrible!!! Please I need some kind of relief soon!

OMGosh thank you so much for this post. I 100% agree with you I have told my Husband over and over I have PTSD from Pots!!!! It is exactly how you describe the most scariest feelings in the world like you are going to die and I do everything I can to avoid it so that is why I am so scared to walk I am bedridden and am just waiting for the symptoms so go so it will be safe for me to get up. It is horrible!!!!! Bring on the propanolol. My first flare 3 years ago was so bad It took me a year you get back to normal after the flare was gone.I didn't know what it was I just thought it was a nervous breakdown, as well did the doctors...surprise surprise actually they thought it was anxiety but it was way way beyond that so I thought nervous breakdown) anyways 3 years later here is a flare and it is 10 times worse than the first one and I know I will suffer the psychological effects from this for the rest of my life. I agree PTSD can be caused from a pots flare up.

Is anyone bedridden with there flare ups?

My temp doesn't change but I am constantly hot and cold, hot then cold, like hot flashes. Just another annoying symptom.

I feel this way a lot, How do you all function with these symptoms is anyone else stuck in bed like me?

I wonder if it would help all my symptoms , I have so much over sensitivity to everything lights, noise etc.... adrenaline surges, hot flashes, maybe even get me walking again I am just scared of bad reactions to meds since I feel so bad all the time I don't wan to take anything that makes me feel worse.