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unexplained syncope finally diagnosed as NMH or in the POTS family
Been avid runner, athlete, gym rat, etc. whole life...always practiced a low sodium diet since hypertension is in my family, and have been regularly told by my docs that I have low blood pressure in general but no concern..many runners have low BP.
I'm 59 and throughout my life starting in 20s, I had 2 fainting episodes when running in 90ish weather in New Orleans, high humidity, and during intense boxing in an humid enclosed pool room swimming laps, then boxing..BUT I was always aware when it was coming on..saw little balck dots and was able to tell someone..hey I am going to faint..did briefly, drank something, sat up and was fine..
fast forward this past year I worked out hard, was in a sauna which I love to stay in as long as possible until sweat drips...got out, walked to lockers and was able to tell someone I was going to faint...then fainted..thank goodness i did no fall on the hard bench..and another time (twice) ecently soaking in extreme hot water which I love, in a hot tub (sipping alcohol)..same thing, thank goodness did not drown, I was able to climb out then I fainted...
BUT this past summer, I woke up in middle of night to pee, took a few stepss and blacked out, fell backwards on rim of bath tub and severely injured my back (went to ER), thank goodness after CT scan it was severe soft tissue only, I thought I had broken my back and would never play tennis or run again, then a week later at night woke up and fell again, forward, broke little finger..
so then my primary made me visit Cardiologist and Neurologist, had battery of exams, CT and MRIs, etc..they found nothing....
a friend of mine who is a retired MD suggested a tilt test, John Hopkins in the only place in my area that gives a tilt test, so made an appointment and 4 months of waiting, I failed the tilt test. Was fine relaced happy chatting with the nurse while laying down about 15 minutes, then when she slowly raised me up to stand, my BP went down to about 53/26 and I told her that I was going to faint, and did so..
JH diagnosed me as NMH (neurally mediated hypotension) in the POTS family, JH MD told me I was just under the threshold of being considered having POTS..He told me consider LAST taking fludrocortizone, and just try taking salt tablets, prescribed by my Primary.. he briefly added there were possible complication with fludrocorizone, so use it as last resort
but then at first my primary prescribed FLUDRO, but I told her no, it's a steroid, don't want to take it, and i had the JH doctor's comment in my mind, then she said, OK, take the 1 gram of salt daily with lots of water, but I took the salt pill ONCE and it made me nausas, horrible after taste about 20 hours, and I stopped taking it..
also i read an NIH article that longterm FLUDRO nor salt tablets are proven to even work...not enough studies have been done on FLUDRO and salt to treat POTS etc.. Also the top 3 side effects of FLUDRO were insomnia, sweating and weight gain, and with my miserable hot flashes 24/7, and daily struggle to keep weight controlled, the last thing I want is this drug..
I have always drank about 2 liters of water daily, with my daily sports I am thirsty, my doc told me to start adding salt to foods, and drink gatorades, etc.. I bought knee high compression stockings for night
at night I sit up and stretch FIRST before getting up to walk to pee.
my concern is I have read lots of articles that untreated POTS etc. can lead to all sorts of other bad things....
ANY THOUGHTS???
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Has your gynecologist checked in with you about menopause and checked your hormone levels now that you are menopausal? I wonder how menopause is effecting your body at this stage of life. There is so much new and good information for women as more emphasis and attention is given to the unique needs of women.
Thank you for this suggestion, have not mentioned any of this to my OBGYN, and it makes sense now that you mention it..will make appointment!
My father, well aged, began feeling terrible in 2018. Took him to the local ER. Hyponatremia. He told his older sister (the eldest sister had passed on a few years before this, so he couldn't run this past her), and his sister said she'd been on salt pills for years. Five years later, back to the ER. As the nurse was hooking my very ill dad up, I began to relay his recent history, including his diagnosis years earlier of hyponatremia. A couple of hours later, after blood extraction, bingo...hyponatremia. Two months ago, dad began falling. Compression fracture in his spine. He's 94 now. Back to the ER. I was on a cruise with the missus. Learned that they determined he was low on sodium....hyponatremia. AGAIN!!!
Some people dump electrolytes. I know someone who dumps so much magnesium that he has to drink two liters of his own concoction each day! I have gone to have cardioversions for my atrial fibrillation and the blood panel shows hypokalemia (low potassium). I eat plenty each day, from 1/2 cup of peanut butter, to coconut milk, to beets, potatoes,....lots of potassium each day. But they fed me two large horse pills to get my potassium back up.
All this to say that you may have to think of a wide variety of probably/potential causes of what you are experiencing.
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1 Reactionwow this is interesting and thank you for sharing...I had to look up definition of hyponatremia, and it says can be caused by too much water consumption or too little, depending on any underlying cause...I understand that me doing nothing AND not taking my prescribed salt pills is not wise, and I need to find a doctor that specializes in this type of problem..thank you again
Install lots of grab bars and support furniture along your route to the bathroom!
Grab bars make fine towel racks, but they can stop a fall if ever needed.
Thank you dear will do!
Just turned 69 and it's been a rough year! I had a decent diet, was active, doing water exercises and one day in September suffered a syncope! After many tests, and a TM flow at the cardiologist revealed POTS! Taking salt pills before eating, wearing compression socks and exercising slowly, still suffer low blood pressure episodes during the day. Trying amino acids, licorice root tea. Working on getting better so that I can drive safely. Stay positive and continue taking care of your body!
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1 Reactionwow thank you for sharing...you're like me...and since you are taking your salt pills, I GUESS I should start taking my prescribed daily salt pill too BUT UGH..it leaves an after taste of salt in the back of my throat and i can taste it constantly..almost makes me sick to my stomach...
I’ve had syncope events several times, taking me to the ER twice. My brother has a history of it too. We know what to watch for and so far it’s gotten less frequent. I am careful with drinking too many fluids without electrolytes. I also add a little salt to my meals. My labs have shown my sodium as low for the last couple of years. I stay out of saunas and hot humid locations. I work out most days and have only had 1 episode within the last year and it was manageable. I was never informed about POTS….i suppose we don’t have that.
Thank you, this sounds like my situation and lifestyle and managing it is what I hoped to do...good to hear it is working for you. Wishing you peaceful day.