POTS or vasovagal syncope?

[delia311]

Hi, I'm new here. I'm 25, have 2 kids and wonderful supportive husband and way to may weird medical issues.
I've been having symptoms for a few years but brushed them off as normal and me being a wimp or I would go to my dr and nothing g would seem abnormal and I never pursued further testing past regular blood work ect. Over the last few months things have been alot worse though and since my surgery last year my deductible is met and I can afford more testing.
I had a full endocrine workup that was normal so my dr suggested is see a cardiologist for my palpatations, chronic dizziness/light headedness, occasional syncope and extreme and chronic fatigue.
my symptoms are
lightheaded while upright
Chronic fatigue (worse after busy days lots of standing ect.)
PVCs (over 9,000 on 48 hour monitor)
racing heart feeling
feeling of adrenaline in chest
chest pain/tightness when standing
passing out (only happened 4 times in 4 years all after standing or dehydration)
feet turn dark red/purple when I stand for a long time,  feels like they will pop.
Brain fog/ trouble concentrating/zoning out
Muscle pain/ feeling weak after standing
trouble sleeping
hair falling out
Rashes/dry skin spots
heat intolerance
Cold hands and feet or burning feet (either extreme rarely in the middle)
Low vitamin D
If I go grocery shopping I will feel like I've gone on a run, standing in line makes me feel like passing out, it's one of the worst things I can do.
Showering is also horrible, my feel are swollen with blood by the end and I just want to lay down I'm so tired and my heart just feels like it's going beat right out of me.
I had a tilt table done and the doctor thinks I have vasovagal syncope.  That may explain the passing out but not why i am always dizzy and fatigued. I never passed out on the TTT, my BP didn't even drop until they gave me nitroglycerin.  In fact it went up along with my heart rate.
My first 4 supine BP and HR were
129/88 96, 131/86  74, 126/85 85, 134/87 81
When tilted the first 11 minutes went as follows, they recorded hr and BP every minute:
147/4 102, 146/105 93, 144/95 101, 129/88 104, 128/90 103, 135/93 106, 136/78 98, 134/75 107, 129/80 98, 129/75 115.
Before the nitroglycerin my heart rate got to 115 no lower than 93 . With nitroglycerin it got to 152 with bp 109/60.
How does vasovagal syncope explain everything else. Everything I've read about POTS symptoms sounds dead on for me. I've been struggling for so long and just want to feel better.  I have a second opinion but they can't get me in until July. Does this seem like POTS or am I barking up the wrong tree?

[paulcarignan]

I have vasogal syncope (now being called neurocardiogenic syncope, NCS). Though I do not have POTS, when I stand up for longer periods my syncope can be triggered. I've learned to detect the onset (prodrome) like narrowing vision, vertigo, overall weakness and immediately lie down with my legs elevated. This aborts the actual syncope (fainting) but I can experience severe chills, vomiting, and panic while staying conscious. After a major episode I need at least a day to recover.

Dysautonomia is an umbrella term that includes POTS, NCS, and a couple of other sub-divisions. You can have more than one because the symptoms are clusters that can overlap and are seldom identical between two people. I have not waited for an official diagnosis now because I have lived with these symptoms and others for over 60 years and I'm tired of them. In just the past few weeks I learned that dysautonomia was a thing, and discovered that it neatly answers why I suffered so long even after the doctors had ruled everything else out.

You can find a lot of reliable information just by googling (ok, a lot of unreliable junk, too) Its easy to tell the difference. You will learn a lot more than any doctor is likely to tell you, as far as I can tell from internet discussion groups. Please let me know if I can help.

Ps. your doc was right about increasing salt, even though the ad on this website says you should cut it. We are opposite from most people. Drink more water, too. These two things increase blood volume to help avoid racing heart and syncope.

[embryson]

I am 44-years-old and was officially diagnosed with Mitral Valve Prolapse and Vasovagal Syncope about 20 years ago, although I've had symptoms my whole life. I was previously diagnosed incorrectly with panic attacks as a teen, until I changed family doctors. There are some cases where an adrenaline rush from intense pain, fear, or getting too hot will trigger an episode. Those I can tell you are coming and can immediately respond by laying down. Sometimes I still pass out briefly but usually not. These come on hard and fast. There are other episodes, however, that come on more slowly throughout the day. These I tend to try to push through or fight off, often until it's too late. These are usually triggered by lack of sleep, dehydration, excessive/prolonged stress, overexertion, or silent migraines. I often know these episodes are possibly coming, because either I can't seem to get woke up that day and want to sleep all day, I feel detached and absent minded "fuzzy", or my face feels a lot of pressure from the migraine but no pain. By the time I try to fight these off, I get to a point where I can't really focus my thoughts or vision enough to react or take the necessary precautions needed to keep from passing out, and with these I usually pass out several short times before the episode passes. It feels like soup in my head, so I can't really think, except to know I desperately want to get away from people so that I don't feel like a side show and want to get somewhere cool, because I feel hot. When these happen and people start asking me questions, I can't collect my thoughts enough to answer them. I get deemed "unresponsive" even though I can hear them. I think I'm answering them, but they tell me I never do. It almost feels like being drugged. Afterwards, I remember most everything, but in mental snapshots that I have to piece together. During the presyncope phase of these, which seems to last hours or even a day or so, my wife has learned to see the signs and take action herself. She says I look like I'm not there and I'm slow, very quiet, cold, pale, and clammy. Ironically, no EMT or doctor, except for the one who diagnosed me, ever seems to even know the syndrome exists. They either think I'm having a panic attack, a heart attack, or faking it. If it hadn't been for that one doctor explaining it too me so well, I would have never known. The episodes also seem to be getting more common as I age, so I am finally stating to see a pattern and find things that help me through the episode. I know this post is old, but I found your response very interesting and wondered if you had any similar experiences.

[delia311]

Thanks, I have a second opinion at Duke hospital at their new dysautonomia clinic in July (only days after my deductible resets, it's met now and everything is free :/) my regular dr put me in cymbalta and I've been having less bad days but when I do have a bad day they are REALLY bad and so far nothing they put me on helps with the huge amount of PVCs I'm having at rest.
Hopefully this dr will have better ideas, the last dr didn't seem very concerned and was very smug, he said I didn't need the TTT because he could already tell me what was wrong but I insisted on the test.

[Heiferly]

Your tilt table test appears to be positive for POTS, most like hyperadrenergic POTS based on the elevated BP, according to the data you have shared here. It is possible (maybe even likely considering how few doctors are able to correctly interpret these) that your doctor does not have a high level of expertise in interpreting tilt table tests. I would recommend seeking a second (or third) opinion until you find someone with more experience and expertise in this field. You may need to travel a bit to get to one of the major academic dysautonomia clinics. My first TTT was misinterpreted, which I learned when reevaluated at the dysautonomia clinic at Cleveland Clinic, and that was the case despite my initial test being performed by a well known doctor at another nationally-ranked facility in the US. The situaiton has improved marginally since then (10 years), but misinterpretation of these tests is still quite common.

Best wishes, H.

[delia311]

That first upright BP should read 147/94 not 147/4 (that wouldn't be good