So tell me about POTS.

[KidsHappen]

As many of you know I have been having many serious health problems for about the last 18 months. Most issues I have been resolved or have improved as much as they are going to but I am still having problems with a really fast pulse, some chest pain and breathlessness anytime I do so much as stand up. I had a 28 day heart monitor to check for A-fib but have not got the results yet. In the meantime two of my dds independently have suggested POTS. I read up on it and a great deal of my symptoms match especially the dramatic rise in pulse upon standing or when overheated. Provided I don't have A-fib I believe that this is something my doctor will probably consider so tell me what you know.

[Ann.without.an.e]

Have you had iron checked?

[Ann.without.an.e]

I say this because dd had the same symptoms and a lot of people suggested POTS. She was sent to several doctors and even a cardiologist before someone here. I think @Pawz4mesuggested anemia. Why in the world no one checked something so simple I have no idea. She was almost transfusion level before it was caught. She didn’t have enough red blood volume to pump properly. Just taking a brisk walk would elevate her heart rate and make her chest hurt and she couldn’t breathe. Sometimes I would have her use my Apple Watch and she would lie down and it would drop but it would shoot up when she stood up. 

Edited June 23, 2022 by Ann.without.an.e

[KidsHappen]

43 minutes ago, Ann.without.an.e said:

Have you had iron checked?

Yeah, I lost about half my blood volume a few months ago and had to have a transfusion. They fixed that problem and now my blood counts are really good but I am still having problems with my pulse, weakness, fatigue and breathlessness. Like I said they are checking for A-fib but my pulse is not constantly high just whenever I stand up, exert myself or get overheated. 

[Ann.without.an.e]

7 hours ago, KidsHappen said:

Yeah, I lost about half my blood volume a few months ago and had to have a transfusion. They fixed that problem and now my blood counts are really good but I am still having problems with my pulse, weakness, fatigue and breathlessness. Like I said they are checking for A-fib but my pulse is not constantly high just whenever I stand up, exert myself or get overheated. 

I’m so sorry about the blood loss. Have you had your stores checked? If your iron stores are low then you can still have symptoms even if hemoglobin is ok. Also you may need hemoglobin rechecked if you haven’t in a while. DD was corrected, stopped taken iron, crashed again. Rinse repeat a few times and she realized she just can’t fully stop taking iron. For some reason or another her levels tank anytime she tries to stop.
 

for anyone who may read this thread that is anemic or realizes they are, I cannot express how much this supplement turned DD’s life around without causing stomach problems. Prescribed iron is so hard on the stomach and it doesn’t absorb well. Her dr was shocked at how fast her levels corrected with this. 

 NaturesPlus Hema-Plex Iron - 30 Slow-Release Tablets - 85 mg Elemental Iron - Healthy Red Blood Cells - with Vitamin C & Bioflavonoids - Non-GMO, Vegan, Gluten Free - 30 Servings https://a.co/d/ch9KFxB

 

I’m hopeful someone can answer your POTS questions too. I don’t know much about it. 

[Carrie12345]

My impression from previous posts and dd’s experience is that POTS really runs a wide range of severity.  Her dx probably only happened, or at least when it did, because she needed medical clearance to go back to volunteer work after nearly passing out for no explicable reason, and her ped sent her to a pediatric cardiologist.  She had an echocardiogram (fine) and then they did the tilt test (less fine.)

She gets the crazy pulse rise when she stands too quick and gets woozy, and she does seem to be tired more than the average person. That’s tricky for me to decipher as she’s just about to be 19, and my teens are always tired and have weird sleep patterns. She doesn’t *usually have shortness of breath, but it happens once in a while. Hopping into hot showers after hard work is a big no-no that she sometimes forgets. 😳

She is not on any real treatment, because most days are fine for her. She is supposed to pay attention to her diet, hydration, regular (basic) physical activity, and increase salt if she’s experiencing more symptoms than usual. Again, she’s nearly 19, so she doesn’t always do that.

[historically accurate]

My DD's case is pretty severe. She faints daily when she is having a flare; when it is controlled, she still faints at least a couple of times a month. She was in a wheelchair for about 6 months because of constant dizziness. She is extremely heat sensitive, so summer sucks. 

1st order of defense is: hydration (about 1/2 mixed with Drip Drop or Liquid IV). Second is compression. Third is extra salt. We have not discovered a diet that helps. Exercise: She is trying the rowing machine at Planet Fitness this summer. She has a 3 wheel trike so she can ride a bike without falling off because she feels dizzy. She does the CHOP protocol for exercise (not as often as she should though):   https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

She is on 3 medications for POTS - midodrine (raises blood pressure), fludrocortisone (retains water), and metoprolol (lowers heart rate). She had only small improvements on the first two meds, but metoprolol was a wonder drug for her. 

[KidsHappen]

1 hour ago, Ann.without.an.e said:

I’m so sorry about the blood loss. Have you had your stores checked? If your iron stores are low then you can still have symptoms even if hemoglobin is ok. Also you may need hemoglobin rechecked if you haven’t in a while. DD was corrected, stopped taken iron, crashed again. Rinse repeat a few times and she realized she just can’t fully stop taking iron. For some reason or another her levels tank anytime she tries to stop.
 

for anyone who may read this thread that is anemic or realizes they are, I cannot express how much this supplement turned DD’s life around without causing stomach problems. Prescribed iron is so hard on the stomach and it doesn’t absorb well. Her dr was shocked at how fast her levels corrected with this. 

 NaturesPlus Hema-Plex Iron - 30 Slow-Release Tablets - 85 mg Elemental Iron - Healthy Red Blood Cells - with Vitamin C & Bioflavonoids - Non-GMO, Vegan, Gluten Free - 30 Servings https://a.co/d/ch9KFxB

 

I’m hopeful someone can answer your POTS questions too. I don’t know much about it. 

Yeah my iron stores are good and I take iron about two or three times a week.

[kbutton]

13 hours ago, KidsHappen said:

I am still having problems with a really fast pulse, some chest pain and breathlessness anytime I do so much as stand up.

I would keep in mind that POTS is not the only form of dysautonomia. There are other kinds with different constellations of symptoms. Dysautonomia International is a good resource.

5 hours ago, Ann.without.an.e said:

Prescribed iron is so hard on the stomach and it doesn’t absorb well. Her dr was shocked at how fast her levels corrected with this. 

When you talk about stomach issues, are you including constipation as something this avoids? I have a kiddo with surgical blood loss/transfusion that is not bad enough for IV iron. We could do an Rx, but he has serious constipation from other meds after surgery, and I know that Rx iron brought my intestines to an abrupt halt many years ago.