POTS/OH--dead weight legs/severe lack of energy

[Trying]

From what I have read, it cannot be pots if blood pressure drops.

Daughter has had tachycardia sitting and while lying down. Orthostatic hypotension at a cardiologist office during stand. Tachycardia at hospital but no tilt.

I am worried that we do not really know what it is, she has heavy legs that get heavier as she walks, and she has no energy, can only walk 5 minutes, if she does more, then she said she will have no energy to do that the next day. Her new cardiologist (we moved again) said having no energy (steady all the time, she does not have good or bad days, she is chairbound) and deadweight legs are not symptoms of Orthostatic Hypotension or POTS (yes, people get that temporarily, but not 24/7, same with dead legs).

She was formerly so active, her dead legs (felt like concrete poured in them) was the first symptom while she was 12 years old and jogging a usual distance. After that, she kept having the leg symptoms and then at age 15, she had her first tachycardia episode while lying down. Cardiologist thought it was growth spurt, too much veins, too little blood, she added salt/water but dead legs continued as well as no energy.

She tried to stay active and went on walks 3 or 4 times a week of about a mile, but over the years, her legs and her plummeting energy (as well as a 2nd episode of tachycardia) 4 years later, and then a few years more, and she was having a high resting HR consistently.

Please help, does anyone have 24/7 no energy and deadweight legs and those symptoms stay the same, each and every day now? Also, I do not know that even though they said POTS, if it is POTS, or if it is orthostatic hypotension, but cardiologist in Wichita says that it does not explain her debilitating lack of energy/leg symptoms. She is currently taking midodrine 2.5 2x, desmopressin, fludrocortisone, and birth control pill. All have been taken long-term except fludro which has been just a month.  

[MomtoGiuliana]

Patients with POTS may or may not have BP changes.  The defining feature of POTS is heart rate increase of 30 bpm on standing.

From our website:

The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012)  (Arnold, Ng, Raj, 2018)

POTS patients experience a myriad of symptoms, in my experience.  My own symptoms have run the gamut and varied over time.  We have a list of symptoms that have been reported by various medical journals here:

https://www.dinet.org/info/pots/pots-symptoms-diagnosis-and-prognosis-r96/

Severe weakness and exhaustion are symptoms of POTS and I have personally experienced it.

It is possible to have POTS and OH.

 

[Shepard1]

A few thoughts, could her heavy legs be related to a side effect from her medication fludrocortisone as this can cause muscle weakness and also decrease potassium levels.  Has your daughter been reviewed by a neurologist to rule out myopathy (muscle disease)  

I was initially under a neurologist for diagnostic testing for  Myasthenia gravis (bloods and EMG).

 

[Clb75]

I have a neuromuscular disease that causes motor and sensory nerve damage. When I first became sick with it, I would get weakness in my arms and legs, and my legs felt really heavy. I couldn’t walk up the stairs because I couldn’t lift them. This is separate from Pots. Not sure if you’ve been to a neurologist, but it may be worth it to rule out any neurological issues contributing to symptoms. 

[Trying]

@momtoguiliana Where it says "in the absence of sustained orthostatic hypotension" doesn't that mean if you have hypotension with high heartrate, then that it is not considered POTS? I am so sorry for being confused, a cardiologist told us that with the hypotension, it was not POTS. 

She walked casually about 4 minutes and her BP was 122/83 with HR of 66.

She stood afterwards for 3 more minutes and her BP went down 30systolic,  92/77 with HR of 127.

She is taking fludro, midodrine, and desmopressin. Last year she was on beta blocker, propranolol first and then metaprolol, but it made her feel weird and worse, felt one time like a clunk or going down a step sensation in her chest.

@Shepard1 She has been tested for potassium and is doing fine with that, but not neurologist. She has heaviness in her legs and also in her arms, when she raises them to do her hair for any length of time, but she says it is not her muscles. Thank you for neurologist idea, we saw one years ago that just tested her for seizures, even though no sign.

@clb75 She can walk upstairs, but not but a few times each day, she says it is not her muscles. Thank you for your input, is there any other symptoms of your neuromuscular disease, is it myasthenia gravis? 

[Pistol]

@Trying 

40 minutes ago, Trying said:

Where it says "in the absence of sustained orthostatic hypotension" doesn't that mean if you have hypotension with high heartrate, then that it is not considered POTS? I am so sorry for being confused, a cardiologist told us that with the hypotension, it was not POTS. 

As far as I know POTS is diagnosed by an increase in HR WITHOUT a noticeable DROP in BP. If the HR goes up and the BP drops - that is a NORMAL response of the ANS as long as it goes back to normal within 1 minute. If the BP stays low it is most likely OH - which also is an autonomic dysfunction. --- I would ask your daughter if she would be willing to see a neurologist as others have mentioned. If I recall correctly she is in her 20's - hopefully she will have the energy to look into this specialty, it may help since other options have not seemed to be helpful.  

[Clb75]

Trying,

I have something called CIDP, it affects the nerves that supply the muscles. At first, my arms and legs were heavy, my toes paralyzed and my hands were so weak I couldn’t button my pants or push buttons on the microwave. Grip strength was lost too. I also have numbness in my hands and feet. If you’re daughter is interested in trying a neuromuscular neurologist, they can do nerve testing to see if there is any motor nerve damage. Myasthenia Gravis can cause problems like this too, but for a different reason. Have you all considered a specialty clinic like a major university or Mayo, etc? I had to go to a university hospital to get diagnosed. It’s frustrating to find answers but keep trying and hopefully you’ll get some answers.