POTS help please

[Lianac89]

Hi! I’m 28 years old and was diagnosed with POTS recently but no by a tilt table test. My heart rate sitting is 60s and then goes up to 120s-150s when standing. They started me on fludrocortisone and said drink water and eat lots of salt. I drink tons of water. So when I shower my heart rate goes 120s even on the medicine. I was also experiencing neck and chest muscle weakness. At first the drs were thinking maybe I have an underlying neuro issue causin this, but all my neuro stuff is coming back negative. I’m noticing now that my symptoms like neck and chest weakness are worse when my heart rate elevates. I am just looking for advice. At this time I’m waiting to go see an EP at USC because that’s where my insurance will send me. I live in Las Vegas and was told there’s no specialist here. I’ve been out of work over a month and it’s been tough. I really want to figure things out and get back to work. Anyone have an information? Experience? Advice? Anything while I wait for a specialist would be helpful. 

[haugr]

How much fluids and salt are you consuming now and how much you were consuming prior to being diagnosed? How is your blood pressure? Are there any other symptoms?

[Lianac89]

I’ve always drank plenty of water. Now I drink about 4-7 liters of water and I add salt to everything. Sometimes I drink a big jug of Gatorade. I don’t know how to measure my salt intake. My blood pressure before was always low 100s/60s and last one was 128/80. When I first noticed it I was in the shower, I could felt my heart beating hard and fast and I felt lightheaded. I have never passed out but I have also never pushed it. Now it’s seems like my symptoms are weakness in the neck area, shortness of breath. I get very tired. 

[yogini]

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.  

[Lily]

My doctor recommended 8-10 grams of salt.  Your recommendation may be different, but for tracking salt intake you'll have to measure.  Check your salt container to be sure, but 1/4 teaspoon should be a little over 1 gram.  If you eat a typical American diet you may get 3 grams or so from processed food. 

Gatorade does not contain enough salt for us POTSies, but Pedialyte is better.  My favorite recipe for a Pedialyte-like drink: mix 1 tsp salt, 2 tsp low sodium salt, and enough juice for about 80 grams of carbs, and enough water to make 1 gallon.

You might also try elevating the head of your bed by a few inches.  This supposedly helps the body retain water overnight.

Exercise is also a very common prescription.  Cardio against resistance, building up to 30 minutes 3x per week is what I was told.  Stronger leg muscles help veins constrict, and consistent cardio exercise causes blood volume to increase eventually.

[haugr]

That's actually a pretty low amount of salt if you have a POTS diagnosis.  Each person requires a diferent amount, but like Lily said, 4-8+ additional grams isn't uncommon.  If you do end up increasing your salt intake more, just keep a close eye on your blood pressure. And I'll just add here the obligatory comment about consulting your physician first.

[Lianac89]

Ok I will start measuring my salt, I’m sure to not enough. I was told I will need to get a tilt table test when I see the specialist. I’ve read on this and am kinda nervous. Did any of you require medication to be given? Or pass out? I haven’t passed out and I’m worried about it. I get tunnel vision and really short of breath and weak when my heart rate goes up but then I sit down. My cardiologist here said he doesn’t want to keep on me fludrocortisone for a long time and wants to switch to midodrine at some time. 

[Guest KiminOrlando]

I passed out at my TTT. It was fine. To be honest, I felt vindicated. I had always sat down before passing out too. The docs tried to convince me that I wouldn't really pass out if I kept standing - it was just anxiety. Nope. I really pass out. I sit down because I know that and I'm not dumb enough to keep standing up.

I'm annoyed that they put you on meds BEFORE the TTT, so it will skew your numbers and make you look better than you really are. It won't diagnose you. It merely will **** how the meds are working. My personal pet peeve, but it is just my opinion. If I'm ever king of the world, I will stop this practice... nobody hold your breath.

I have been on fludrocortisone for 7 years, maybe 10. I lost count. What is your doctor's concern about long term use? Just curious.

[Lianac89]

I was worried about that too. They said log term will cause adrenal insufficiency and my body wont produce cortisol on its own. I’ve been on it for 4-5 weeks now and was told I’d be switched to midodrine. I think it’s the medicine here in Las Vegas. It’s so behind. In the hospital when I get a bolus of saline it helps the most. But wears off within hours. I wake up with daily headaches now. Yesterday I got tunnel vision at the market and sat down before I felt like I was gonna pass out.

[yogini]

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.

[Guest KiminOrlando]

13 hours ago, Lianac89 said:

They said log term will cause adrenal insufficiency and my body wont produce cortisol on its own.

I'm no doctor, and maybe I misunderstood, but I was told fludrocortisone isn't a corticosteroid, so it wouldn't suppress it. If it really does suppress cortisol long term, that is interesting. I will try to remember to ask this question again when I go back in January.