Akgirl

That's great, but wow I am struggling to be able to excersize without laying on my back with my feet elevated right now at PT because otherwise I faint. And I have been at it for several months twice a week!! Not all of us just bounce back!!!

Yikes!! Hang in there

Right on two thumbs up!!!

That's kinda where I am now!! I am at about 2 minutes before I start to faint. Currently I haven't even made it off my back. I am just working with my PT with Thera bands on resistance on my legs. Yeesh!! It's just so hard when everything I google and read and everyone else seems to be able to exersize for 20 minutes minutes at a go!!!!! IN MY DREAMS Sorry about the rant I am just a tad bit jealous.

Maia, just wanted to let you no if you have any questions on the details of the surgery and recovery etc. I will happily answer anything if it will help!!

Okay, so I have bad news for you I am a 31 year old female I also have floating kidneys and pots. And I had the surgery which is called nephropexy. They actually sewed my kidney to my muscle running along my spine. And after one week it flopped loose and they had to redo it and tied it to my bottom rib!!! I had this surgery done about 12 yrs ago and have HORRIBLE pots today!!!! I wish I could tell you it was a Miracle cure. Perhaps for you it will be for you? I will keep my fingers crossed. But all it did for me was take my pain mostly away. It's funny when you describe lifting your kidney, this was exactly what I did!! My floating kidney was confimed with a ivp and a standing ultrasound. I was not diagnosed with pots at that time although I suspect I had it. Just not to the degree that I have it now. My second surgery was awful and I ended up almost bleeding to death and now have permanent nerve damage. The recovery was very very long. So please don't rush into anything!! I promise you my pots is NOT gone I am pretty much housebound and can't stand for more than 2 min without fainting and seizing. I am on as much meds as my nuero can give me and see a PT twice a week. This is all with my kidney put back in its proper place..... So please proceed with caution

I have been going to pt and the minute I start getting fatigued I begin to faint and get really spacey and brain foggy. I have been sick with this flare up for about 8 months now so I really need to get my muscles back!! It's so frustrating because its feels nearly impossible. I was wondering if anyone else has had any experiences like this? So far I can only stay in one position because if I turn from side to side or go up a d down it makes things much worse!

Yaaah for you!!

Totally does thanks everyone!!

Sounds like you need to take a shower eat a healthy meal and go for a walk outside and get away from reality for a bit!!! Sometimes when I hyper focas on all the negative things in my life it feels pretty hopeless. But this is a viewpoint and we have the ability to change it!!! Sometimes it helps to make a list and for every bad thing you have to also list 2 good things. Good luck and don't forget to smile

Seattle Chris, did they say why?? It's so hard for me to wrap my head around this. Everything I read online says that yoga breathing helps with venous flow??

What excactly did they help with? Was it just the tachy or was it the sick and dizzy and nasea too? The reason I am asking because I am having a hard time doing any exersize at all during the week of my period. So my thought was that perhaps this would alleviate my day to day symptoms, not just the tachy.

I really don't no the answers you need, but just wanted to say that it sounds like you have had a rough go!! And I am so sorry for your loss! Hang in there girl

I am so happy for you

Sorry guys I don't no why this posted twice . I don't how to erase it, so please disregard!!

I am considering asking my nuero to try iv infusion on the week of my period. I get so much worse when I am menstruating, and I have read some pretty positive things about saline. Please let me no your personal experiences. How often, how soon do you feel results ect.

I am considering asking my nuero to try iv infusion on the week of my period. I get so much worse when I am menstruating, and I have read some pretty positive things about saline. Please let me no your personal experiences. How often, how soon do you feel results ect.

I am the same, probiotics works best!! Also the obvious, try to stay off sugar and starchy foods that turn to sugar. My doc told me when i eat sugar I am feeding a army! lol

I hooked up to my pulse reader and did various types of breathing and yawning and I instantly go into tacky when I deep breath of any kind?? I feel the effects after the second breath so I don't think it's hyperventilation. I also followed the steps for yoga breathing and had the same results. Grrr I am so sick of pots, it feels like this sickness is never ending.....

Oh ya that makes sense! I do have seizers when fainting but the nuero said they are not true seizers they are actually convulsive syncope. He explained that I am fainting from the pots and the convulsions or seizers are how my body reacts? I had a 3 day hospital veeg and they had me hyperventile to look for abnormal brain activity (I had none) and during thst test i dont think they checked my vitals at that time. Thanks so much

I cannot do deep breathing, or diaphragm breathing. When I do I instantly get faint, my vision gets staticky and I get very spacey. I also feel like this when yawning. Has anyone else experienced this?? Last week in my physical therapy session they asked me to begin belly breathing and I immediately begin feeling unwell, I then fainted and went into convulsions. I am convinced it was from the breathing not tachycardia. Any thoughts??

If it makes you feel any better my nuero never checked my memory. He was more focused on coordination, reflexes, and pupil dilation and tracking. Good luck!!!

My main doc is also a neuro. He is the one that has diagnosed me and also treated me. I am currently on florinef and atenolol, I also salt load and have to wear 40-50 hz stockings. And he recently prescribed aqua pt twice a week.

Any more updates? I love reading about your experience. I am considering going to mayo, and wondering if it is worth the cost? I have a good neuro that's treating me now but I still am not feeling good at all.

I hope it works for you ill keep my fingers crossed