Most effective treatment

[cherylw8388]

My 22 year old daughter has orthostatic hypotension, her bp decreases with an increase in heart rate, she has severe fatigue which sleep does not help. She complains of having difficulty with concentration and and problems with retaining material that she reads. Prior to becoming ill she was very mentally sharp and now states that it is more diffucult for her to retain material that she reads...though not all the time. She also complains of awakening early am with tachycardia and feeling like she is "wired". She also states that she feels as if she is rocking internally since these symptoms began. She was told that she had POTS. We are desperate for some management that will improve her quality of life.

[Heiferly]

What treatment regimen is she on now?  What aspects of it seem to be working and what doesn't seem to work?  Is there anything else she has tried in the past, and what didn't you like about that?

Can you tell a bit more about what tests she's had done already and whether there have been any attempts to explore the underlying cause of her POTS.  It might help as well to hear a bit more about her onset (at what age, whether it was gradual or sudden, whether there was anything that seemed to "set off" the POTS such as a viral illness/pregnancy/surgery/physical injury, etc.) as well as any information you might have on the progression of her illness (whether it has been consistent over time, fluctuated, gotten better, or gotten worse).

Thanks so much for putting up with all the questions!!
Welcome to the community!
-Heiferly.

[LivingInHope]

Have they checked your daughter's iron and ferritin (iron stores) to be sure she is not iron deficient?  Iron deficiency can cause tachycardia, a great deal of fatigue, and difficulty in concentration.  Even with POTS, iron deficiency can only make things worse, and it's a common problem in young menstruating women, so if they haven't checked that, I hope she will get tested. Even if iron deficiency has not yet affected a complete blood count, it can cause symptoms- I know, because it happened to me some years back.

I have quite a bit of difficulty concentrating myself, but never thought it was related to my P.O.T.S.  I also have used the description of feeling wired myself.  When I stand up, my body over-compensates and my blood pressure after a couple minutes typically has a spike.  Did they do tests to arrive at the conclusion she met the criteria of diagnosis: P.O.T.S. and if so what tests?  

If she feels tachycardia upon awakening before she gets out of bed, that is not part of P.O.T.S.- do they also say she has I.S.T. or inappropriate sinus tachycardia?  
Have they made sure she does not have hyperthyroidism or tested plasma free metanephrines to rule out a rare tumor called a pheochromocytoma?

Things to cope with P.O.T.S. are sitting on the edge of the bed for a little bit before attempting to stand, use a shower chair and if necessary, eliminate the usage of hot water for that, stay sufficiently hydrated, because if you're not, it can make things worse, if urine is too dilute, add more salt to the diet.  Also, she might try some vitamin B 12 for her brain function.  She may want to see if compression hose works for her.  Some find certain medications prescribed by their doctors help them with symptoms.

[ABarton72]

I have fainted all my life.  As I got older it got worse.  I went from being super mom to a wheel chair these last couple of years.  The doctors say I have orthostatic hypotension, vasovagal syncope,NMS, and cardiogenic syncope.  They all basically say the same thing... I faint and they don't know why.  But recently I went to an electrophysiologist who put me on the right path.  My recovery will take about a years time and there will always be set backs but I'm so excited!!!!  I know there is no cure but there is treatment so don't give up!!!  My PCP is sending me to Vanderbilt this summer so I'll let you know how that goes.  Hang in there!!!- Andrea