yogini

I got my fitbit on clearance at Bed Bath and Beyond. I found it to be more of a toy and a pain to use because you have to recharge it and sync with your phone. I prefer the Polar HR monitor which I used every day for a few years when I first got POTS. The Polar is scientifically accurate, the Fitbit isn't.

Sometimes the heart rate monitor isn't accurate. When you are in doubt count your pulse with your finger. When sleeping or lying down it also isn't unusual to have a low HR. Mine has definitely gone as low as you describe during my sleep, when I wore a holter monitor. This is even when my POTS was at its very worst when my standing HR was 160. My doctor told me the low resting HR was normal and nothing to worry about. If you are worried about high or low heart rate the best thing to do is call your doctor and get a full workup from a cardiologist.

I am not sure how long it has been since you stopped your meds. As others have mentioned, dysautonomia symptoms change every day -- you have periods of good and bad. If you feel better right now, it might make sense for you to stay off medications until you start to feel sick again. Meds have side effects, which could've been part of the issue. Monitor yourself and you can change your mind at any time. Keep the doctor in the loop on your decision -- if you suddenly start to feel sick again you'll need his help. Some medications can be taken as needed - and maybe you can ask him about that option.

Interesting. Did your doctor say this symptom is from dysauotnomia? It doesn't sound typical.

What is the nature of the breathing issue you are having?

Paxil (an SSRI, like Zoloft) worked for me to improve all my symptoms, including brain fog and a whole host of other things. , It is more of a med used for treating dysautonomia, and not particularly aimed at brain fog. Often if you find the right med or treatment - which might be an SSRI, florinef or a beta blocker or something else - many symptoms will improve. There are also some drugs which dysautonmia patients take specifically to improving brain fog. I think some people take ADHD meds, for example. You might be able to find info about these by searching on the forum.

Unfortunately, the treatment for POTS is usually a complicated process that takes a lot of patience. Take it from those of us who've been there. Don't put too much pressure on any particular test or appointment or medication.

Did the doctor say you were getting an IV or blood draw? This is part of some tests, but not all. If it makes you nervous, ask if you can skip this part.

Your doctor could answer best. But vasopressin/high BP are the body's natural responses to dehydration. There isn't enough blood so the vessels squeeze harder to try to get blood to the vital organs. Fixing the dehydration may lower the BP.

White lines and spots, large or small, aren't too unusual - whether or not you have dysautonomia. I haven't heard of black lines - but maybe makes sense to ask your doctor and/or pharmacist.

My mom has (or had) MVP but not POTS. I think you can have those symptoms just from MVP.

Florinef helps to bring up your BP and you feel better with higher BP. Maybe there are other treatments that can help you do this that don't have the same effects as florine? There are other meds which raise BP and also things like compression hose to talk to your doctor about.

I would do lots of research on this and see a POTS specialist - there are names on the DINET list. It isn't a customary treatment, but your daughter's situation may be different because she had an ablation. It might be helpful to do some reading about ablations as a treatment for POTS and also the use of a pacemaker in POTS patients after ablation. There should be lots of good info on this forum, the DINET main page and also on google.

I think its sort of like having extra symptoms when your stomach is too full - blood flows there and not to your brain. Same with the bowel. I don't have gastroparesis. I try to manage these symptoms with my diet, but I certainly get stuck in a rut with this every now and then, sometimes for a few weeks. I used to take probiotics which helped, but got lazy. I think dysautonomia is the main reason why my digestive system doesn't work well, and then the poor digestion makes my POTS symptoms worse. So frustrating!

Low barometric pressure can cause low BP. Also we tend to have a hard time at higher altitudes - where pressure is lower and there is also less oxygen. So much fun having POTS - so many things that can affect us!

I think any change in pressure, whether an increase or a decrease, can trigger symptoms.

Has she talked to her doctor about trying a beta blocker? BBs generally lower HR and BP

I haven't read through the other responses, but having stool in your intestines lowers blood pressure. Sometimes when I'm constipated I don't feel well for days including headaches and other increase POTS symptoms.

Riding an excise bike or drinking alcohol has put me in bed for days when my POTS was at its worst. But I didn't have any problem (beyond the pain a normal person would have) with 2 tooth extractions. I had local anesthesia without epinephrine, and that was the key to an easy recovery for me.

A good day or good week can give us hope, but I think true progress comes in the long run. For me I had ups and downs, and over a very long period of time started to notice that my worst symptoms weren't as bad as they used to be. I could do more and recover faster.

I have seen some articles which mention sympathetic overactivity and heart failure, not heart attack. Maybe that is what you remember seeing? Just like many of us, you've had several of these incidents and made it through. You've had a workup which came back clean. These seem like good signs, but the best thing is to discuss these symptoms with your doctor ASAP to make sure.

POTS/dysautonomia is an autonomic nervous system condition. It shouldn't lead to a heart attack - and I agree with corina, I don' t know of anyone that's had one because of POTS. It's pretty common after getting diagnosed to notice irregular heart beats and chest pains. I woke up many times in the middle of the night with severe tachycardia and sweating. I went to the ER a few times because of this. It's normal to feel scared and panic with these types of symptoms at first. I know I did. But you get used to it. Getting a cardiac workup like Alex mentions will confirm and give you peace of mind.

You should always feel free to ask questions here. That's what we're all here for! If you're feeling shy about asking, the search function in the forum is also handy -- most anything you can imagine is already covered here. And there is also good info on the main DINET page. It's very, very common to have ups and downs with POTS. Some days you feel worse than others. Some days you might barely notice your symptoms or have no symptoms at all. And other days or weeks you may be stuck in bed. Sometimes there is an obvious reason for these changes -- the menstrual cycle is a common one. If you don't sleep, get the flu/sick, feel stressed or do too many activities it may trigger you. You will start to identify these causes, but sometimes it also happens with no reason.

I agree with Katy. Dysautonomia means dysregulation of heart rate and BP, so we can be higher or lower or both. I've definitely been all over the place, though usually have a higher HR and lower BP. I'd suggest asking your doctor, especially if you have a new and lasting symptom. He/she may make suggestions like adjusting medications or diet. Your number seems a bit above normal but not severe - but your doctor can explain/address it best.

I spent a lot of time worrying about and over-analyzing my HR when I first got POTS - probably for a couple of years or more. I realized later that this was wasted time/worry and that I was never in danger. The numbers you report here seem fine, so my unsolicited advice: don't worry or spend too much time on this.