No longer POTS, but some symptoms remain?

[Finnmin]

Hello again, I return with an update to my POTS-husband's situation. Our neurologist refused to give him any medication, because he thinks losing weight and cycling 27km per day has improved his condition, and that he should continue on this path to full health. Well, it is true that his POTS-tachycardia when he stands up is sometimes completely gone now, and most of the time lasts only 30 seconds when he stands up, but when he has overexerted himself, the rise in the pulse is >40 and lasts as long as he stands, as it was in the beginning. But the problem is, HE DOESN'T FEEL ANY BETTER!

So we ask you, have you experienced this kind of course with your illness? What could be happening? If the orthostatic tachycardia goes away, it's not technically POTS anymore, but he feels all the other symptoms just like before?! He doesn't have orthostatic hypotension, he is capable to exercise extremely hard without crashing (so no CFS/ME?), this leaves me with so many more questions... Hypovolemia with autonomic nervous system NO LONGER compensating circulational loss of blood into the brain, which would make it bad, a "system failure", rather than improvement? Or could this really be improvement, but we just have to wait for his body and brain to feel it? He complains the same orthostatic intolerance, same gray blurred vision all the time, same weak and heavy muscles as before...

We haven't been able to fight hypovolemia with salt, because of his reflux, I will try that path soon again, because it's the only thing that has ever really improved his orthostatic tolerance. His resting heart rate is now 50-60, and blood pressure is tolerably high, so exercise has done something to his system, but why oh why can't he feel any better?!

I will dig into the forum now and read how you guys have been feeling,  thank you for reading.

[BuffRockChick]

Hey FinnMinn!  Glad to see you again!  I thought of you and your hubby yesterday.  I had tilt test yesterday and my blood pressure went from 120/? (A bit high for me, I was kinda nervous) to 178/98 in the first minute and stayed high. &$*% Thought of your hubby right away when I saw the raw vitals from the test!

How much salt did he have at a time with how much water?  Asking because, from what I understand, if there's not enough water, the body will draw water into the stomach to dilute the salt, temporary causing hypovolemia.  And vomiting and stuff.  IDK if I said that before.  My husband explained it, it was new to me.

I'm having a buffered salt pill (Salt Sticks) with 215 mg sodium for each 8 oz glass of water I drink.  My cardiologist says 12 - 8oz glasses per day.  (I think that is 3 liters).  I just started Florinef too. 0.1 mg.  So far it seems miraculous!  Not sure if it's just the medication or also because I had a bag of saline yesterday too.

[haugr]

Thanks for the update.  It is good to hear that he has made some progress.

[Finnmin]

Hi haugr! BuffRockChick, thank you for the salt&hydration tips! I read your TILT update, must have been an awful experience! It's a long road to get a tilt test in my country, and my husband doesn't even want to be tortured like that, but I'm afraid we need all the proper testing done the hard way, to get him disability benefits. He's still far from being able to work at all.

Why is it so hard for a big man to drink up the whole 8oz glass within 10 minutes?! He often drinks just 4 oz and I get mixed up with my daily cup calculations, running after him with a half empty (half full) glass of juice, begging him to finish it. He doesn't get nausious, he just says that he can't get it down. I try to understand him, it must be an awful feeling, but drinking is for his own good! 

I've realized that he gets a lot of fluids in form of coffee, coffee comforts him, doesn't seem to stimulate him, so he drinks about ten 4oz cups of mild, watered down coffee per day. To me it doesn't even taste like coffee, I think it's 1/3 of the strength of normal coffee, but I do worry that it works like a diuretic. If only I could put the salt in his coffee!

We had a scary experience with a glass of cold juice: drinking it in the morning triggered him an episode of atrial fibrillation. It lasted for 45 minutes. After that he no longer touches cold drinks! 

 

[BuffRockChick]

People DO put salt in coffee!  It's supposed to make coffee less bitter.  

Does he have difficulty eating much at one time?  Could his stomach be slow to empty?
Do other liquids go down faster/easier?  Sometimes when I feel to full to drink water I can drink broth or hot cocoa easily. 

[haugr]

I think that this video on pots is the best that i have seen. In it he talks about how symptoms are primary vs secondary.  Might be relevant to your husband since the orthostatic tachycardia looks like it was secondary to another cause.

 

 

[JennM]

Dysautonomia/pots is so very confusing. I suffer from Hyperadrenergic pots.   Typically giving me high blood pressure and tons of adrenaline/anxiety. Over 20 years I still haven’t seen it all. I go up in down on blood pressure. Sometimes it’s bottomed out for very long periods and I can’t  Get out of bed safely, other my blood pressure will be normal to high. Some times I feel fine, sometimes I will pass out still. At the ED is was 178/98. 
For me personally when I stand too long, or really at all, my blood pressure or heart rate will just bottom out and I faint.  When I wake up, my blood pressure is ALWAYS normal. I recently watched a lecture by dr Grubb and he touched on it. That after you pass out, your body desperately tries to get back to what’s normal and can overcompensate…he called it the “Jimogie” effect on something like that. I went into 2 years of submission, even though they said I’d never get better. Hang in there. . I feel your frustration and I’m sure his as well. Seems our body chemistry changes so much that what once worked, now doesn’t. If you have any other questions..or you found the answer 🙏🏻  Let me know.  Both my kiddos have pots too and one is Hyperadrenergic, the other hasn’t been tested yet. 
if you are Instagram, you can find ne at Jenn_Mumma. I really pray he is doing better.