yogini

  The numbers that you report and the swings seem pretty normal, except for the times when your HR goes over 100 in your sleep.  I don't blame you for not going to the ER.  Maybe you got dehydrated after the cold so make sure to load up on water.  I hope you are able to get answers soon.

Was there a change in altitude?  Higher altitudes are harder for POTS.  I would check your blood pressure, heart rate and see a doctor for treatment.   If you have low blood pressure, drink lots of water and have salt. And don't worry, POTS does not damage the heart.

When I first got sick I always took showers at night, because then I was tired.  It helped me fall asleep.

I had to sit down in the shower when I first got POTS.  I just sat on the bottom of the tub.  Many people buy a shower chair.  Hot water also makes things worse

I would definitely see a doctor to be sure.  Hope you feel better soon.

Studies on the effects of salt on normal, healthy patients would not apply to POTS patients.  It's generally recommended to take salt with florinef - florinef causes the body to retain sodium.  If you don't take enough sodium the florinef might not have any effect.  But ask your doctor or pharmacist.

For a healthy person, if your kidneys are functioning normally your body would get rid of the extra salt.

I think a normal blood/urine work up would test whether your adrenal glands were working correctly.  It's pretty common to get this kind of testing when you have dysautonomia.

Load up on water and salt. I drink broth followed by water. That fixes it quickly

Did you mention to your doctor?  On both sides, maybe it has something to do with your lungs?

Yes and it helped me, but only a little. Not as much as I expected 

A blood pressure of 90/60 to 120/80 is generally considered normal.  The numbers you report seem to be in the normal range.  It does sound like you have tachycardia, though.  As bombshell noted, with POTS you get an increase with a change in posture.  If that's not the case I'd look into  inappropriate sinus tachycardia (IST). 

And Steven is right about combining a beta blocker with something to keep up your BP. If it is on the low side of normal, that might help.

The heart is slightly to the left, not in the center.  There are probably many issues that could cause this symptom.  Burning in the center seems like acid reflux to me, but if you are having a new symptom like this it's important to discuss with your doctor right away.  Hope you feel better soon. 

  For most of us we feel much better lying down - but there are exceptions.  Some peoples' blood pressure drops too low, for example. Maybe measure your HR and BP when these episodes happen.

On 3/8/2018 at 7:55 AM, RecipeForDisaster said:

I'm really sure it's low, partly because of my response to IV fluids. I haven't had it checked... I am going to ask but I bet no doctor wants to order the testing. It's a few hours away at Yale.

 

I tell doctors that the best way to describe my overall feeling is that all of my blood is the floor and I've had too much caffeine (heart pounding wise). 

I have normal blood volume but when I was very sick I got IV fluids and responded well.  Many patients with dysautonomia benefit from expanded blood volume even if our blood volume is normal - because our blood vessels don't constrict properly to deliver blood to the brain.  

But if you can't explain your symptoms and they don't seem like typical dysautonomia it is worth checking blood volume because that is actually a different medical condition that dysautomia and there might be other treatments or causes.

Dysautonomia doesn't affect heart rhythm, only heart rate.  Most everyone has a normal EKG and ECG.

Your issue seems that your baseline BP is low, but you aren't really orthstatic. There are some BP raising drugs like florinef which don't cause vasoconstriction and aren't stimulants (though they have other side effects).  Even just salt and water at the recommended levels might help bring up your BP if you do it consistently.

This happened to me a couple of times when I first got POTS and now it's totally gone away.  I do try to go to the bathroom every hour or two - way before I have to - and that helps a lot.

I think you'll find the best information online.  The books written on this topic might be out of date.  This is a good website, and so is Dysautonomia International.  It is so important for patients to be informed and you're doing a smart thing by reading up.  It is much easier to think through this condition when you understand what's going on with your body and the different treatments.

Thanks.  I'm not running any marathons or climbing any mountains.  I probably never will.  But I live a somewhat normal life and I think many/most people with dysautonomia get there with time.  I hope you feel better soon.

I have tried biofeedback in a few forms and I found that it helped me mildly.   I wouldn't travel for it.   There are even machines you can buy at home.  I tried Resperate and I liked it.  You might want to do some google searches the Dallas center. It is considered controversial in the POTS community.

It is a steroid which is hard on the body. I can understand why your doctor would want to try something else, especially if she is young.  I have heard that before.  You may want to do some google research on florinef and maybe schedule an appointment with your doctor to talk through.

2 hours ago, RecipeForDisaster said:

For me, I don't know if my BP dropped enough. I just got labeled dysautonomia. 

 

My BP is low all the time, it does vary with activity and position (and does not increase when I stand as it should) but I don't even have a good BP lying down. It's too low to allow me to stand and walk without blacking out, so I am orthostatic but I believe it's mostly because I am just too hypotensive to do those things. That's why I wonder what is really wrong with me. 

Have you had your blood volume checked?

If you do not have POTS but your blood pressure drops on the TTT , there is a formal diagnosis - Neurally Mediated Hypotension, or Orthostatic Hypotension.  Most of the treatments are the same as for POTS and doctors that know about POTS should take it seriously and know how to treat it.

Many, many people here have successfully weaned of florinef.  I think I did 1/8 pill every 2 weeks.  I did not feel it going super slowly.

Some discomfort, sensations and pain are not unusual. However severe chest pain like a heart attack is not normal symptom of POTS. Most of us get a full work up including EKG, ECG, chest X-ray and stress test. For most of us these come back normal and our doctors tell then us our chest sensations are nothing to worry about. You should definitely get a work up and confirmation from your dr.