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Anyone With Pots Without Dizziness/lightheadedness?


Praxxtor

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I feel like I'm the only one? My biggest gripes are my eyes and digestive system. Would it make sense that POTS can cause issues elsewhere without causing dizziness? It's odd because there's such a huge emphasis on dizziness, as if it's almost a compulsory symptom. Anyone in the minority like me? Also I've got a weird symptom at night when I try to sleep, my chest area is freezing and because of it I can't fall off to sleep. Anyone have any ideas?

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It could be possible, there is a spectrum of symptoms for autonomic dysfunction. I always thought that with POTS one of the main features was that blood would pool in the extremities when in an upright position. The heart tries to compensate for this hence the "tachycardia" in POTS. Blood pooling causes less blood flow to the head and brain and therefore I would assume most people with POTS have dizziness. Although possibly not everybody I think there is a poll on this board somewhere asking what symptoms we suffer. Do you still have tachycardia?

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It could be possible, there is a spectrum of symptoms for autonomic dysfunction. I always thought that with POTS one of the main features was that blood would pool in the extremities when in an upright position. The heart tries to compensate for this hence the "tachycardia" in POTS. Blood pooling causes less blood flow to the head and brain and therefore I would assume most people with POTS have dizziness. Although possibly not everybody I think there is a poll on this board somewhere asking what symptoms we suffer. Do you still have tachycardia?

Thanks for the reply Digby. Exactly what I thought too. When I had my autonomic testing done I was told that the results were perfectly clear "no question about it" POTS diagnosis. Although when asked why I don't experience dizziness they sorta dodged the question. You see they automatically assumed dizziness was my main issue but when they asked they were surprised to find that in actual fact it was something else completely lol! Yes I do experience Tachycardia and they are always really forceful beats. They make me shudder with the unrelenting force of each beat.

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You're not the only one. I have little dizziness also. I do have blurred vision and very high heart rate, especially in the mornings. I feel breathless as if I'm trying to make my tea while running on a treadmill but not really dizzy. It's doesn't feel good though, it feels like I can't get enough air. My worst symptom is toe / feet sweliing and burning when upright and blood pooling in legs, plus recently headaches.

My resting heart rate is 50-55 rising up to 120s in the mornings. In the late afternoons and evenings it's down to the 80s standing and high 40s lying down. But I mainly don't look anymore, it only makes me feel more panicky. I check it every now and then in the hope it's improved, not so far....

I'm also diagnosed with Neurally mediated syncope but haven't fainted since Aug 2013 thankfully. I did have dizziness when all this started but it's improved even though the numbers are the same. No idea why.

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  • 6 years later...

I realize this question is 7 years old but maybe he will see this.

i was diagnosed with dysautonomia in 2018, after searching for a diagnosis for 14 years BECAUSE i experience no dizziness, lightheadness or fainting. 
my symptoms include inappropriate sinus tachycardia, exercise intolerance, heat and cold intolerance & a “broken internal thermostat” (more below), upper body sweating with ANY exertion, even just standing (and even without sometimes due to hot flashes or external temperature), shortness of breath, flushing, chest pain, IBS, fatigue, brain fog, widespread pain and well, im sure im missing some symptoms, but my MAIN complaints (in no specific order theyre all equally awful) are:

sweating in my face, chest and back

Tachycardia and chest pain

Exercise intolerance 

shortness of breat

HIGH BP (not low) 

temperature abnormality 

 

ive never fainted or come close to fainting from this condition. I get lightheaded no more than the average person (maybe 4 times in 44 years lol)and i dont think ive ever been dizzy for no reason (carnival and playground rides have made me dizzy thats about it). 
The temperature thing is also linked to MOVING AIR. I can still sweat profusely when its 32°F/0°C outside if theres no moving air. I live with 2 fans in my face at home, one on each side of my head, and instantly feel too warm when they are turned off. Its about how i feel, not the actual temperature. The world feels like its 20° warmer for me than it is for everyone else. But i also cant handle cold temperatures. My muscles will literally convulse with sudden cold. My body need a lot of time to acclimate to a drastic temp change like going from my warm home to my freezing cold car. 
heat triggers my symptoms. Im much more symptomatic in summer and winter than i am spring and fall (i live in philadelphia for context). 
ive gone into heat exhaustion in 80°F weather just by walking to the corner store and back again because humidity also plays a huge roll.

I think the misconception is that all Pots is the same. I believe there is a second, very rare form of POTS and i have it lol

seriously though, i have the symptoms of Hyperadrenergic POTS but NORMAL norepinephrine levels. I dont have the low blood pressure of Normal POTS that treatment is tailored around. If i increase my salt its not good! I feel like my blood is defying gravity and pooling in my waist UP. Its feels horrible. So ive been sitting in limbo between to conditions that i dont fit into enough to treat. How do you treat high blood pressure that goes back to normal when you lay down? I really am starting to believe that i have a rare form of POTS that has not been defined yet. 
 

i have been functionally bed ridden for 4 years now. Everyday, I get out of bed and drive my spouse to work and come home and return to bed. I get out of bed to do my shopping, dr appointments, visit family for an hour, etc etc etc. but when im home, THE ENTIRE TIME IM HOME, i live in my bed because this is the only place where i feel even remotely “normal”. Where i can control my pain, the temperature, and i can be laying down which decreases symptoms. To make matters worse, we are now living in poverty because of my condition. SSDI (now will be SSI since the denials have stolen the insurance i paid for) has denied me 3x because of lack of diagnosis, then we think you can work, then youre too young to be sick (they actually put we take many factors into consideration when determining eligibility and AGE was one of them). I was the bread winner in the family. Now im a burden. 
i dont wish this “life” on anyone. Im a prisoner in the maximum penitentiary that is my body with no parole or pardon. This really sucks. 

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Dear @Sandy DiVa - I am sorry you are this unwell. Several things stuck out to me: first of all - there is not "normal POTS". There are several different types of POTS and they all have some symptoms in common and others symptoms are unique to that type. The symptoms you describe sound pretty typical. What medications do you take for POTS? You mention your BP going up when you stand - often this can occur from lack of exercise, especially in POTS patients. Certain medications can cause this too. In POTS our BP can go up as a result of the ANS trying to compensate for a sudden drop in BP. What you may want to do is purchase a BP monitor and measure your BP several times each day and write it down, so you can show it to your doctor. 

I also am disabled from POTS and understand how a vague diagnosis can minimize your options when it comes to SSDI. But here are a few things you can do to attempt to control your symptoms: establish a routine consisting of a balance of rest and exercise. Being inactive ( even if you feel bad when active ) is proven to make POTS much, much worse. I always do exercises, even when I am in flare an bedridden, you can do leg raises and crunches and other exercises while lying down. Get up and stand every 30 minutes, even if only for a minute. Do a bit more every day - but rest in between. 

I use a cheap rowing machine and it really is a good exercise since it moves the whole body. There are exercises that are good for POTS - here is a link 

Dysautonomia International: Exercises for Dysautonomia Patients

Exercise also helps with sleep, and it usually helps with the rise or drop in BP upon standing, brain fog ( b/c you increase circulation to the brain when exercising ) 

Of course the usual treatments of increased salt and fluid and wearing compression hose are recommended. 

Do you see an autonomic specialist? If all the above mentioned tips don;t help you may need a change in medication. You also might be on same meds that make your POTS worse, so discuss all of your meds with your doctor. In the meantime - get up and be active as much as possible!!!!!

 

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