Postural Orthomotional Tachycardia Syndrome?

[CalicoCat]

Recently I failed the 10 minute standing test at the hospital for the second time. My HRM shows I have HR increase > 30 bpm when walking, or when just moving limbs. I also have

-low sodium in urine, dizziness, fatigue, stomach ache, cold feet, heat and cold intolerance, brainfog, short term memory loss, tremor, nausea, poor sleep, poor blood circulation, night sweats, symptom flare after hot meals, 4-5 liter urine output daily.

-improvement with SSRI, compression stockings, putting feet up, elevated head of bed, lying down, using a saddle chair on wheels to move through the house, increasing salt intake, drinking lots of fluids. I can't exercise due to ME/post exertional malaise. I used to need about 4 hours to regain concentration and get rid of dizziness right after doing sports. 

BP monitored 24 hours looked normal. I don't have syncope or chest pain, not overweight. HR usually peaks from 65 to 120-130 after waking up. Around 110 when doing light chores. Around 120 when sitting down and crocheting, moisturising arms, removing compression stockings... Same when squatting before washing machine to do laundry. Around 130 when doing tasks with arms above head like putting up canopy. HR goes down quickly after stopping tasks and sitting or lying down. 

Have had most of this for decades. Can't seem to get dx or care, except SSRI, salt tablets, custom made compression stockings. Have been trying to take 6 grams of salt or more daily. Now got rx for 6 grams in salt tablets for 10-12 grams intake. 

Anyone recognise this type of increase in HR and symptoms? 

Edited September 8, 2018 by CalicoCat
added another way of improvement

[Pistol]

I am sorry you have not been able to get proper care! Have they ever considered a beta blocker for the high HR? Starting a low dose BB and increasing as needed might help with the tachycardia, although it could cause some fatigue initially. --- I am not sure if this is approved in your country but you sound like a good candidate for Saline infusions. They are life-saving for me!! With the high amount of salt you are taking the infusions could really help you! There is a article about the benefits of saline infusions in the treatment of POTS listed on thedysautonomiaproject website. You can print it out and give it to your doc so he can see for himself that this is a good and acceptable treatment for your symptoms. --- I wish you the best and I hope you find relief soon!!!!

[CalicoCat]

Thank you, Pistol! I asked for both BB and saline IV. Both denied. They said BB could cause more dizziness bc lowering BP, although with all the salt that should not be a problem? Saline is not done in many places in my country. 

 

[Pistol]

@CalicoCat that is not how BB work! They are used to TREAT tachycardia! How low is your BP that they do not want to use BB? You said your BP was normal when measured - there is no reason for not taking a BB in my opinion.  --- Is it possible to find another physician?

[CalicoCat]

@PistolMy BP is normal. She measured it 24 hours. The device malfunctioned every time it tried to read when I was being active. So every time my HR peaked, BP wasn't registered. I don't know what BP does at those moments. But it's normal at all registered moments. 

I get that it's called ortho*static* but I have all other symptoms of POTS. She tried to say it was "deconditioning" but I do my own household and shopping. So why would HR peak > 30 bpm when I'm sitting down crocheting? Surely if I can vacuum clean, crocheting shouldn't be strenuous? 

It will be hard finding another physician. NL doesn't have many who test for POTS or want to investigate further.  She also said the SSRI I'm taking can work aversely.  But POTS experts recommend them, as serotonin is the main agent of BP regulation. I can stand much longer on them and way less sound and light sensitivity. They're actually a life saver. 

[CalicoCat]

Found out that certain types of BBs inhibit conversion of T4 to T3. I'm hypothyroid, so I now know I can't take propanolol. Nebivolol seems better.