Stephanieann

I can totally relate. I was diagnosed with panic attacks as a teen. As I got older it still bothered me but was better. After the birth of my second son, Well during my pregnancy even, I had full blown POTS and now am questioning if this is what I had all along, or if it was anxiety or both. 

Resting/sitting heart rate around 85

Standing 95 to 110. 

Activity like walking/ housework about 110 to 125

And that's with a beta blocker

Has anyone had any success with a low dose SSRI to help your sleeping patterns? I seem to be on a 36 hr awake binge then sleep a day, then up 36 hours again. I feel like I have too much energy. Only good thing is I'm not freaking out/going all doomsday yet. I am on trazadone but seems to have stopped working. My Dr that handles my pots isn't much help in the sleep dept! 

I have been on propranolol for about 6 months. My blood pressure was always on the high side but a small dose doesn't change it too much for me. Its been great to keep my heart rate down and help with some on the anxiety feelings. No side effects, though I handle most meds pretty well.  I also went through a bunch of different tests when first diagnosed. Tests on my adrenals, etc, because I was having symptoms that could be related to a problem with them but nope, all OK, just POTS. Hope you feel better soon and the propranolol works for you. 

I can function decently on 6 to 7, maybe I'm used to less sleep (finally) with two young kiddos? Lol. Before my second son was born, I used to sleep a lot and it was never enough. I was always tired. Now its like the opposite. I have more energy...except when the insomnia kicks in. 

No need to apologize. Many of us have probably been there. I know I have. If you stop checking your pulse, how do you feel? If you feel something that is that concerning, maybe take a trip to the er? If anything let them know you need help. There are ppl out there to help.

I'm surprised they didn't say anything about your blood pressure! Mine wasn't happy when it was 140 over something. Have you seen any specialists? Have they caught any symptoms happening while in the office visit? It's a long hard road for diagnosis, unfortunately. I almost passed out in the hospital lobby before they took me seriously! 

On the weak pulse, mine does that from time to time. It's a nervous habit for me to constantly check it and I'll notice right when I stand up that sometimes I can hardly feel it. 

It's hard to believe the doctors and nurses when you feel like your body is failing you. I know it. And sometimes our mind is our worst enemy. Hang in there, deep breaths. Easier said than done but it does get better. I do know that much.

I get the forceful heart beats Almost every time I lie down. It was actually one of my first Pots symptoms. Yet my heart is 100% a OK they tell me but I would mention and get it checked out to be sure, but more than likely its just a pots thing. 

So I always used to picture insomnia as being wide awake staring at the walls all night, yet that's not the way I really experience it. It's more like my body will go back and forth between being drowsy, that first stage of sleep where you are unaware of everything yet aren't in a deep sleep, then being awake over and over until after about 2 am. Then I'll go into a deeper sleep for a few hours. Almost like my body won't let go all the way.  It tries but fails. Anyone else experience this?

Why do we all have such a hard time with it?. Its like I'll feel tired and get into a twilight type sleep but wake up in an hour or so and then I'm panicked and wide eyed all night long. Is it part of dysautonomia? Because its horrendous. I was always an awesome sleeper as long as I was at home in my bed. Sleep was like my getaway. To have that taken away has been very hard to handle.  I'm taking trazadone and just started a new antidepressant and I have ativan that I take after my long bouts of no sleep. Hopefully I can get it regulated. I've kinda developed a sleep phobia too, lol! Good to know I'm not alone though, even though I wouldn't wish this on anyone. 

So I can't sleep again. Not a wink last night, as hard as I tried. Going on more than 24 hrs of no sleep and my mental and physical health is sure suffering. I had this last summer, got better, now creeping back the past month. Does anyone else have insomnia this bad? I can't tell if its from pots, depression, anxiety, all three. I know autonomic dysfunction causes sleep problems, but the thought that it's from pots and that something is wrong with my brain that it won't shut off is causing crazy anxiety. Sigh. Hoping this too shall pass soon.

Yes, I experience weak legs too sometimes. It was worse when I was on gabapentin, so sometimes it could be a med side effect. Sorry you are in the hospital but glad they are helping you. Hope you feel better soon!

I have a lot of sleep issues and naps make me more symptomatic upon wakening so I try to avoid them. Everyone is different, though.  I noticed that sometimes you have to experiment and see what works for you. 

@negiduck, yes,I have had a sleep study. Nothing abnormal was found. Sometimes I wish they'd find something! Lol. @TCP, yes, exactly. It happens when I'm dreaming  too. Like I woke up from a nightmare but they are just normal dreams. 

Thank you. I think I will ask my Dr about clonodine. I am on propranolol and ya, doesn't do anything for sleep. Only thing that knocks me out are Benzos and I don't want to keep taking those.

Does anyone else ever suddenly wake up at night with a panic? My heart isn't racing but it feels like a whole load of adrenaline just gets dumped in my system and wakes me up. I am having the hardest time trying to find something to help me sleep! It's like my sleeping part of my brain is broken. 

Thank you @Katybug and @Jessica. 

I've officially had POTS for a year. Developed during my second pregnancy. Once I learned what POTS was, I think I had signs of it as a teen and then after my first pregnancy, that eventually went away. This time is the worst by far. 

@Jessica they are very disturbing. Mine calmed down a bit but are still there. Ugh. The fear of wondering if and when it will get worse is the worst!

Thanks to everybody. It does feel better to know I'm not alone in how I feel. Wishing everyone better days

So I've had an ANA test with titer and also something like ANA antibodies done. I'm not sure exactly, but if those are negative, does that mean I don't have an auto immune disorder? Or are there other tests to be done? Thanks!

Between the horrible pregnancy, er trips, mental health hospital, extreme burning and pain from neuropathy that keeps spreading and the doctors that can't find a cause. How does one find the strength to keep going? Ugh

There's been a few threads about this, but what do you think about the connection between parents being exposed to agent orange in the Vietnam war causing POTS. My mom called me yesterday and said they are looking in to seeing if my father was exposed to it, that it coudve been the cause of his major stroke he had at age 49. And then she goes on to tell me there's some research about passing down health issues to their children and that could be where my POTS came from. Of course, that wasn't what I wanted to hear. I want this to be something more treatable. But anyway, how many of us had fathers in the war? Kind of a far fetch maybe and a bit scary. 

Yes that is true!  When I was pregnant my ferritin level was 11 and my midwife said that was fine. My neurologist told me that was horrible, it should be about 50, lol. I was like oh! I guess I need to keep taking my iron pills  SO maybe my labs aren't in my normal range!