yogini

22 hours ago, whoami said:

I keep seeing this mentionned everywhere and no one has a consensus on this criteria. 

My heart rate goes up 30 bpms when i stand but goes back down to where it was (or +10). Some says its pots, others do not. I'm currently getting tested for multiple causes and its just... A bit frustrating that there isn't a clear cut line that defines whether you have pots or not. I understand that it might not be possible due to the nature of this syndrome, but its still annoying.

Users on the forum might be confused but the medical definition of POTS is agreed by doctors.  It is a sustained 30+ increase, regardless of what happens to your BP.   Everyone's heart rate goes up a little when they stand but for POTS the difference is that it stays up.  If your HR goes back down then that is does not seem to meet the definition.  You can read more here.  Dysautonomia International is another good site.

I would ask your doctor.  Bystolic is a new drug, so maybe the side effects aren't known yet.  Betas tend to stabilize blood pressure.  They can cause a mild increase but generally would not cause hypertension.  I remember your mentioning low blood volume. That would be a more likely cause of hypertension than a beta blocker.

That is very interesting. So many factors interact together it is always hard to know.  I hope that fixing the B-12 makes you feel better.

Thanks for sharing. Do you think this is new or do you think you always had this, just diagnosed now?

By "full range of tests", which tests do you mean?  It isn't a bad idea to get at least a formal tilt table test.  There are heart tests like ECG and EKG, stress test. Then there are fancy dysautonomia tests like a sweat test, catecholamines, etc.   Once you start florinef it is hard to go off it, so to the extent florinef impacts the results, it would make sense to  get the tests you need before then to see your baseline.

It is possible to diagnose dysautonomia from just a poor man's tilt.   Not everyone has access to a doctor knowledgeable about POTS or facilities which have the the sweat test, catecholamines, etc.  I don't know the numbers but I'd guess most people don't have all of these tests. And  most people - whether or not they have the fancy testing - still have to do a lot of trial and error to find the right treatment.  It sounds like you are already on the right track with the treatment and that is the most important part.

The good thing with midodrine is that you can increase your dose and if that it too much it leaves your system quickly and you can go back down to a lower dose.  Sometimes people combine midodrine and florinef but, since they both increase BP,  usually you pick one or the other and just increase your dose.  

Have you had a blood volume test or how did your doctor determine you have hypovolemia?  If you actually do have it, that could explain the high BP. The body compensates for low blood volume by increasing BP.

If your HR goes up at least 30 bpm and stays up when you stand you have POTS, regardless of what your BP does.  Some people have high BP.  

Compressions stockings increase blood pressure but do not help with hypovolemia (low blood volume).  It usually does not make sense to  wear compression stockings with high BP. (It doesn't usually)  Beta blockers are a good medication if you have high BP and high HR.  Check with your doctor

if You are having hypertension I would first look at any changes which could be causing it. For example you said you increased salt at meal time and you also mention your neurologist prescribed a medication.

You can probably figure out if you have POTS by doing a poor man’s tilt test at home.  Try it a few times and you’ll get a sense.

I am not familiar with a chest binder. Compression of my stomach/abdomen has been helpful to my POTS, though it bothers my stomach. The goal is to get more bold to the brain, so compression often helps.  But a lot of it is also trial and error. Try it and see how you feel. 

Please keep us posted on your treatment.  I wonder if treating the ferritin would make your POTS symptoms go away.

In your first post you'd indicated you weren't sure if you had POTS, but your heart rate in the dr's office implies POTS.  It's important to get full testing to rule out any other causes and because it can shape your treatment.  But even with very clear test results it can often be challenging to pinpoint things. The path to improvement often involves a lot of trial and error and many of the treatments are the same regardless of classification.   I hope you feel better soon.

If you drink water without adding salt it would tend to lower your BP.   However I would not add salt if your doctor told you not to.  

Have you had your blood volume tested?  Can you sleep in a reclined position rather than lying all the way down, to avoid hypertension?

In POTS sometimes your heart beats fast to compensate for low BP.  Beta blockers tend to lower both HR and BP.  If you had tachycardia because your BP dipped too low during sleep, taking more beta blocker could have made it worse by further lowering your BP.  

Metoprolol gave me shortness of breath, but I have tried atenolol and bystolic with no problem.  Each beta is different and sometimes you have to experiment.

8 hours ago, Bluebonnet08 said:

Thanks for all of your replies!  I had never heard of people "outgrowing" it, except in some cases where it developed in childhood.  I wish it was the case, but sadly, I feel like it is dismissive of doctors to say that.  I would like to see some research or proof of that.  I guess it would depend on the "root cause" of the POTS.  I know there are many.  Maybe in some cases the root cause can be treated and "recovery" or "remission" can be achieved.  I do think hormones play a role as well.  Maybe one day we will unravel more about this disease.  Thanks for your input. 

There is research showing recovery which you can find on google.

Dysautomia is a condition that can be traced back a few hundred years, before all the chemicals, electricity, etc. came into play.  I would be wary of this treatment.

This forum would tend to have people who are still sick, so I'm not sure it's an accurate representation of everyone with dysautonomia.  The studies show people who develop it in childhood do improve.  If you got it in your 20s that doesn't count as childhood.  I've had POTS for 14 years and became much better after 3-4 years.  I still get symptoms, am not climbing any mountains but can live a full life.  Many people get better enough to function and leave the forum.

I don't have low blood sugar but I get these symptoms too.  I am not sure the doctor will be able to shed any light as I've never seen any explanation.  

I think our pupils dilate.  Have you tried wearing sunglasses or dimming the screen?  Unfortunately I spend my day in front of the computer.  I have gotten used to the sensory overload over time.

Americans eat processed foods and tend to be overweight and have high BP and so the average person is better off reading labels and eating less salt, fat, carbs, sugar, etc. This makes all of us think to avoid salt, fat, etc altogether, but that is kinda dangerous too, esp if you are normal.

"Orthostatic" just means your symptoms get worse with a change in position.  Your BP doesn't have to drop immediately when standing, but it has to stay low after being on your feet for a few minutes.  It sounds like what you describe.  

If you are worried about having MS, or something different than the typical symptoms on this forum I would encourage you to keep searching for a better doctor and diagnosis.

  I agree melatonin helps me sleep better and since I started it, I've barely needed ambien.  So I was surprised by this study. It just reminded me of my personal general discomfort with taking natural substances, which aren't tested, studied or regulated like medications.

Unfortunately those extreme changes in weather are all over the country right now.  It's nuts and it does wreak havoc on our symptoms.

I take melatonin very often.  It's one of the few things that helps me sleep (or so I thought) and seemed like a better alternative to ambien.  I will be reading up on melatonin since seeing this article.  It has some side effects that I didn't know about.  I'm already nervous about taking supplements in general, because I don't there is enough research on them.

https://www.consumerreports.org/vitamins-supplements/does-melatonin-really-help-you-sleep/