yogini

Does a port require you to have surgery?  Most doctors would try to resist this at all costs (unless there was no option) because of the risks of infection.  There are some treatments that will better help your body retain fluids (like laking salt pills or trying florinef).  Have you looked into them?

Most people here on this forum have POTS and/or NCS.  FD is also a form of dsyautonomia but there are other organizations and doctors that would have more information than on this site. You might want to google and reach out to them.  You could have more than one medical condition (not unusual for people with dysautonomia) and a doctor can best help you sort it out.

Dysautonomia causes all kinds of strange symptoms.  It is hard to find mediations to read these individual symptoms but if you find treatments the dysautonomia itself, the symptoms often improve.  WhenI first got sick I kept track of my HR and BP and when my worst/strange symptoms occurred, it often matched up with my HR and BP being off.

Many POTS patients benefit from birth control pills since symptoms in women are worst with the menstrual cycle. 

Empirically a lot of people feel better by taking medication to regulate their HR even though the HR might be compensating for lack of blood flow to the brain. The mechanism of POTS is very complicated.  Not telling you to follow any particular path, but I also wouldn't rule out any path or dismiss any symptom, especially if you are seeking improvement.

Is your HR high when you feel worse/dizziest? Does it go above normal when you exercise?

 Interesting that your doctor chose midodrine (increases BP) and not a beta blocker if your chief symptom is tachycardia and your BP is normal.  

Though more women have POTS, I am not aware that gender plays a role in the type of symptoms a POTS patient might have.  I also think there are other patients that are able to run and be athletic like you - though rare - I'm not sure it's true that everyone has exercise intolerance.

When you have a virus POTS symptoms tend to be worse, for sure.  If you are taking the stairs, the numbers don't sound too troublesome for a POTS patient even without a virus, unless your doctor told you to worry.

What medications or treatments are you on?  Are your HR and/or BP normal when sitting/standing/exercising?

Fludrocortisone can also cause a jittery feeling as a side effect .  Why did you try to reduce your florinef? There are withdrawal symptoms from trying to reduce this drug.  If you felt bad when trying to reduce it, it might not be that your body needs it. It might be the withdrawal.

Google tilt table test in india.  Many results come up.   You many want to try to connect with a place that offers the test.  

In my personal experience, it is a mistake to mention POTS or any diagnosis to a doctor.  They get this a lot from patients - most of the patients are wrong - so they will never take you seriously - especially if they hadn't met you before and if you are mentioning a condition they had never heard of, and even moreso if they are famous and well known.  The only place it makes sense to mention POTS is to a doctor that Mention your symptoms, like tachycardia and it is more likely that you will get treatment.

I would definitely mention this to your doctor.  Many of us have related problems with the neck and treating that (if it's possible) could help with your symptoms.

I would not worry so much about the color of your urine.  Everyone doesn't drink overnight so we all wind up a little dehydrated.  Make sure you are getting enough salt and electrolytes to help you retain water.  Yo might want to measure how much you are drinking. If you have like 3L per day, that should be more than enough.

I think many of us get tired of drinking water and we are also busy. It is easy to forget.

Sports drinks like gatorade can be better than water.  (I personally don't like gatorade because of the sugar, but there are other options too)

If your kidneys are functioning properly your body should wash out the extra salt.  I would not be worried about having too much unless your doctor tells you otherwise.  Also you can build up slowly so the you reach the right level without driving your BP too high.  I definitely wouldn't start by adding 8 grams at once.  

I found on my worst days, I had a cup of organic broth twice a day.  One cup has 750mg sodium, which is equal to the amount of sodium in 2g of salt.  (Remember, sodium and salt are two different things).  So I got about 4g extra salt or 1500g sodium on top of whatever was in my food at my worst. This is the most I have ever needed.  Usually one cup of this broth is more than enough for me and I don't need it every day, just a few times a week.

Be sure to follow your sodium with lots of water.  It won't work without the water.

Angina isn't typically a symptom of dysautonomia

I would not guess about whether you have hyper POTS or not.  But if your HR shoots up and stays up when you continue to stand for prolonged periods, this means you likely have POTS.  I would ask your doctor for a TTT or switch doctors to someone who knows more about dysautonomia.  Most cardiologists don't know enough

i would try to get a POTS doctor who knows how to treat all of your symptoms together. I think you will find that many of them are related, even down to the stress.  And there are medications which help with both dysautonomia and stress, like beta blockers and SSRIs.  An experienced doctor can help you piece together all the pieces of the puzzle and help you to feel a lot better.

I think you will have symptoms even when on medication, there is unfortunately no way around it.  IF your weakness is tied to your heart rate, there is a good chance it is just a POTS symptom.  Your doctor can advise you best.

I would not worry about an HR of 120 while standing, or in the shower, unless your doctor told you that is dangerous. For most of us, that would be very normal, even on meds. Even for healthy people, everyone's HR actually increases in the shower - hot water dilates your blood vessels and lowers BP and the heart has to beat faster to compensate for it. 

If your meds help you then you can start to exercise and maybe you will feel better over time.  

Also you could ask your doctor whether it makes sense to try a second medication on top of florinef.  For example a beta blocker can help regulate your heart rate.  

Have you had a tilt table test?  That is the best way to figure out if you have dysautonomia.  Or you can measure at home if you tend to have a sustained increase in HR or decrease in BP upon standing.   For many POTS patients all tests come back normal other than the tilt table test.  You can try to get an appointment with one of the POTS doctors listed on the site.  

Unfortunately there is no miracle drug for POTS.  Finding the right medication often takes a lot of trial and error, and it is very specific to the person.  If you already found one medication that is helping you, you are way ahead of the game.  

There may be a few different reasons why you did not see immediate improvement.  It could be the wrong medication for you, the wrong dose, or the med might have an adjustment period. You may want to read through old posts here about this topic, but also check in with your doctor.

I would encourage you to call your pharmacist or, better yet, your doctor.

There is a large overlap in treatments for regular vs hyper POTS.  If you tend to have high BP because you have hyper POTS, the doc might avoid the BP boosting treatments. But then again this isn't always true - as you can see both people in this thread wear compression stockings even though they are hyper. It is really based on the person, so the best thing is to work with your doctor.  You will often have to try several treatments before finding the right combo.

I would find an electrophysiologist if you can’t find a POTS doctor. Don’t mention cannabis and bring him some articles. Or maybe try emailing the Argentinian doctor to see if he can recommend someone in Brazil

Dysautonomia does not require an immediate change, but rather a sustained change. If your HR Is high or BP low after 10 minutes or 30 minutes of standing, that would signal POTS.  I would recommend going to a POTS specialist to get tested. 

The POTS treatments would only help if you have dysautonomia, and it sounds like you are unsure about that.  You may want to ask your kidney doctor whether the HR and BP issues could be caused entirely by the kidney condition, which is a possibility.  You could also see a POTS doctor to get tested, since you would need someone to figure out your meds anyway.  

In dysautonomia we have dystregulation of HR and BP, but generally our adrenals function normally.  If you think you may have adrenal insufficiency or diabetes insipidus (which have symptoms similar to POTS and sometimes get confused with POTS) probably a good idea to see your doctor.