Weyland

Pink1975 , I have pots and recently been having asthma type breathing problems lately . Did you get diagnosed with asthma after you had pots ? What kind of doctor diagnosed your asthma ? What kind of meds did they give you for it ? Thanks

Are you taking any beta blockers or cardiac meds for your tachycardia ? I haven't found one that my body likes so far. ...

When I was diagnosed with pots at mayo clinic ,my heart echo results said left ventricular remodeling.  Then I had a second heart echo at a different hospital and didn't say anything about remodeling.  So who knows ,guess I will get a third opinion someday lol . My advice would be to get a second opinion to make sure you have these abnormalities. Age and heredity also factor in ..

Some beta blockers can cause breathing problems . I've had side effects from beta blockers where it felt like I had asthma and I have never has asthma in my life . I have also started having breathing problems lately and I'm not on any meds currently.  Not sure if it's from pots or deconditioning or what . I know how you feel ....

I have not recovered yet , I'm still trying to find what I can do to try to fix my body. But don't give up your fight , if you recovered before you can do it again . I hope we all can . How did you recover the first time ?

Yes I get these sort of weird beats with my heart also . I think it's pretty common with pots. If these are scaring you and causing you to lose sleep ,just go get an evaluation from a cardiologist to help set your mind as ease... Something about pots makes up more hyper aware of our hearts. Before I got sick I used to never even think about my heart or be able to feel it like now....Pots is a strange thing...

12 minutes ago, DizzyGirls said:

My daughter had her tryptase levels checked as well as plasma histamine levels.  Also, a 24 hours urine collection checking for histamine levels.  Her hematologist was the one who prescribed these tests and keeps track of her mast cell issues.

What sort of symptoms was your daughter having that led her to testing by the hematologist ?

Has anyone had testing for a mast cell disorder ? What kinds of tests are involved ? What type of physician did the testing ? I'm fairly confident I have more than just pots going on in my body ,and I'm interested in getting tested for this....thanks

Marcus99,, I was diagnosed with pots in December . It has caused me to be way less active and not able to work . So yes is the answer to your question . I believe my pots has worsened because of not being active enough and not exercising.  I just dont feel well most of the day. Been trying different meds but none of them have really worked for me . So exercise is the next plan for me ..

Wow that's great to hear . I am in the same boat ,my hr is about 80 seated and 150 standing .it drives me crazy . I haven't started exercises yet because I feel like garbage all the time . I will most definitely will start soon . How long have you had your POTS ? 

Wow ,great food prices over there . Here in the usa that many sandwiches would cost a lot .

I would just do a basic blood panel to see how your kidneys and liver are working on your current diet. But if you feel good ,probably not much to worry about . Is your exercise program helping with your POTS symptoms  ?

You really eat 30 sandwiches a day ? That must be expensive . Why are you eating so much ,are you into bodybuilding?  

I would say do whatever makes you feel the best . If your worried about eating such low fat diet ,just get regular blood work done. You don't need a doctors order anymore to get your own basic blood work done .

  I was diagnosed in Oct with pots ,and life has gone down hill ever since.. I'm very deconditioned now and have muscle loss . Every time I get up and around my hr goes up to like 150. It's hard to do anything . I've become short of breath because of pots . Does anyone else have this ?  Anyways I've tried a few beta blockers ,but my body doesn't tolerate them well . My cardiologist is at Mayo and he treats pots patients . He says I really need to start exercising, and I know I do . But with being short of breath and the high hr it's hard . I'm ordering a recumbent bike to start things . The main question is ,are any of you having luck exercising ? and has it helped your pots symptoms ? 

I have a bar stool in my kitchen ,only way to go if you have pots and want to cook .. I cook waaay less after getting pots . It sucks....

I had high hopes for ivabradine . Did not work well for me . I felt more short of breath than I normally do ,and my heart didn't feel right. I've also tried propranolol ,and atenolol. Had bad side effects with both . The seach continues for me ..If you feel good on the propranolol ,just stay on it .  The grass isn't always greener lol

I have a fitbit 2 ,and found the hr monitor way off the mark. It couldn't keep up with my pots . I use my finger pulse ox seems to be pretty accurate. If you really want accurate buy one of the Bluetooth chest straps.