Weyland

It just depends on the individual.  I was diagnosed in Dec 2016 at Mayo , so it's been about 6 months and I haven't had any improvement. I think I'm actually worse..

That is some high blood pressure . Does his heart rate increase a lot when standing or just the blood pressure ?  If I stand in place my hr shoots right up but not much BP increase....

4 hours ago, m@t said:

Mine averages 50 and sits at around 40 most of the time or down to 29 when asleep. Thats without taking propranolol..l

Heres the blurb from my holter monitor report for a lazy day...

I was still prescribed propranolol and have positive effects from it....

 

Wow that's low , anything below 50 is kinda scary.  What did your doc say about these results  ? Are you still taking propranolol with that low hr ?

I have been having this lately myself . My hr is high all day and then at night my hr goes into the low 50s . If it gets around 50 or lower I just sit up or try to eat and drink something . Usually brings it up a bit....it's strange when your heart does the opposite of what you're used to with pots.

Sorry to hear this happened to you ,sounds scary. My doctor just recently started testing me for possible pituitary abnormalities . I don't have headaches much but have had some vision disturbances. 

14 hours ago, Don said:

I'm am supposed to have a sleep study done sometime in the next couple weeks. I had one done about 5 years ago and it was negative for sleep apnea.  I tested positive for nocturnal hypoxia though.  I had a pulmonary function test done about two weeks ago and a chest CT yesterday.  PFT reiterated my asthma dx.  That's my third one.  I've had several chest x-rays.  I've been in the ER about 3-4x for difficulty breathing.  I have had a few EKG's as well.  

What did they say when you went to the ER ? Did they do anything to help your breathing? 

I agree , there is always a root cause to how we got sick . People are not born with pots . We were all normal people at one point in our lives. It disturbs me when physicians just want to treat the symptoms of pots but not try to dig further to see what caused it . 

Ive tried a couple different beta blockers but couldn't handle the side effects . Made me feel more weak and sick .

Calcium channel blockers are not usually prescribed to pots patients, they don't do much to lower heart rate . Mostly prescribed for people with arithmias and afib and to lower blood pressure.  Propranolol is a non cardiac specific beta blocker ,so it can mess with your breathing . I was on it and works great to control heart rate ,but I had breathing problems also . Cardiac specific beta blockers usually don't cause breathing issues. 

I've had IVs many times in the er . I really feel no better afterwords. I still feel like garbage. My hr still takes off as soon as I stand up. 

Are you guys getting lower hr rates after your IVs  ?

On Saturday, May 06, 2017 at 7:52 AM, SarahA33 said:

A lot of doctors are hesitant to use ivabradine because it's so new and don't have experience with it. It was approved by the fda in May 2015. It took about six months of talking back and forth with my pots dr before he agreed to start me on it. I don't have any side effects from it which is awesome, but it does interact with a ton of meds. Since its just been approved here in the US there is very little research on it,and most is on heart failure bc the pots is off label. It's been a game changing med for me, I did find some research on pots and ivabradine, hopefully they'll put out more.

Do you have pots ? Does the ivabradine help with your standing heart rate ?

I'm in AZ also ,sent you a pm.

My hr is 70-80 at rest and goes up to 150 standing . Pots is a terrible thing . I havent been able to take beta blockers either, lowers my bp too much.  I need to look into ssi also . Are you in Arizona ? Where are you being treated ?

Enjoy it while you're feeling good .... I rarely get those days

You may want to talk to your doctor's about your beta blockers ,they may lower blood pressure. Maybe a lower dose ,or you could ask about ivabradine which does not affect BP .

That's always good to get the workup done just in case . 

I know how you feel ,about a week ago I was in the ER also . Heart rate was going crazy and feeling very weak . Got an iv and my potassium was low,it's been low a few times lately not sure why. Pots is the worst....I would give anything to go back. Did they do blood work on you in the ER ?

Did your breathing get worse after starting the propranolol ? That beta blocker can definitely affect your breathing. It made me feels like I had asthma . Others on this site have experienced the same with this medication. 

I also have breathing problems with my pots....

Yes my pots symptoms get worse if I eat a big meal . My hr goes way up for about an hour. I have learned to eat smaller meals and it helps a lot. Also highly processed foods seem to affect me also ,so I try to eat more natural foods and it helps . Doing these things has also caused weight loss for me which isn't good ,I'm male. So it's been hard to take in the same amount of calories as I used to when I was healthy and eating as much as I wanted to ....

yes stairs are a problem for me as well , I hate my stairs now ....

So did you get tested for MCAS ?

I tested positive for Scleroderma in my blood work before I got pots . Saw a specialist at Mayo . They said they didn't think it's active in my body ,but I'm sure an autoimmune reaction in my body happened to cause my pots. My life has been turned upside down ever since. Feel like crap every day....

So you don't have much tachycardia problems with your pots  ?

I agree , propranolol caused me to have breathing issues as well . How is your heart rate now being off the beta blocker ?

Yes I had anxiety problems before pots, never on any medication for it . I probably have worse anxiety now with pots.  Thats when the hr really goes up . I hate it....

I have seen a few different doctors at mayo clinic in AZ ,but not dr. Goodman. They diagnosed my pots . For some of their specialist doctors you need to see one of their internist physicians first ,but if you saw Dr Goodman before then Im not sure how come you can't see him now . You can't really move up your appointments over there, so sometimes you have to wait a while to see certain doctors. Maybe search for a specialist outside of mayo so you don't have to jump through their hoops . If you need the help now ,don't wait on them. To tell you the truth ,mayo has not helped my situation that much ....But to answer your main question, I have not had problems getting follow up appointments .