Could this be a form of POTS?

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Hi everyone 😃! I'm new to this site and hoping to find some answers to what I might be possibly dealing with.

A little background. I'm an otherwise healthy 27 year old guy in fairly good shape and healthy weight if not slightly underweight. For the past 6 months I've been dealing with an array of very odd and bothersome symptoms. I originally was scared it was my heart but have had every test under the sun to eliminate that such as normal echo and even a cardiac MRI with contrast. Most doctors have tried to pin it on anxiety which I just don't feel is right. I'll try to describe my symptoms as best as I can below.

A lot of my symptoms revolve around feeling light headed, weak, or having racing heart / heart palpitations.

I mostly struggle with:

  • Racing heart when standing that lasts awhile or goes away if I bend over.
  • Racing heart after eating large meals.
  • Extreme fatigue after exercise for almost a whole day to the point of not feeling well.
  • Heart palpitations while standing.
  • Feeling light headed or breathless often and relieved by sitting down.
  • Symptoms are worse when I'm warm or during long showers.
  • For some reason I feel better if I go somewhere cold.

What I find odd is I've tried to take my blood pressure when I feel like it's low and it's always normal so I don't know why my heart would race and I would feel "light headed" if my blood pressure is normal at the time of symptoms?

Does any of this sound like POTS or am I really just looking in the wrong direction? Thanks for any guidance it's much appreciated. I'm really lost and don't know where to turn as my doctor is not very helpful and says I'm just anxious and should take anxiety medicine it just doesn't feel like anxiety.

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  • Posted

    Hi. This totally sounds like POTS! Oh man, I have a lot to write about this. Docs ALWAYS ALWAYS misdiagnose this and often as anxiety. There is still so much ignorance and lack of education around this .

    POTS comes with a hyperadrenaline feeling (some people's adrenaline when standing up often tests through the roof) but often and people suffering can come accross as being anxious- sort of a fight or flight.

    I lived with POTS for 1.5 years and my larger unbrella illness that it was tied to continues- autoimmune autonomic neuropathy...I have researched a ton about this because this illness has been so horrible to live with. The POTS part of the illness was most disabling of all.. A top expert on POTS who often talks at Dysautonomia International events is Satish Raj- actually watching Dysautonomia International talks about dysautonomia and POTS Is a good idea. I joined the dysautonomia BOSTON support group on facebook - very helpful. Usually pots and dysautonomias in general affect many more women than men and its believed to be autoimmune driven. But, I have encountered some men who have it. Many who get it have recently had a viral illness or surgery, some report some kind of traumatic event. I was a serious weightlifter and had only had some strange bowel motility issues ten years prior and survived a rare cancer and mine came on suddenly after what seemes to be a viral illness (trigger but not necessarily cause). IN My case I developed difficulty passing stool and urine off and on and also lost sensations for those things off and on, lost all sweating on top of the pots and finally my ankle biopsy showed small fiber neuropathy (which can be linked to autonomic neuropathy/autonomic dysfunction). In some cases as suspected in mine it may be a paraneoplastic syndrome meaning the autoimmune attack on the neruvous system (autonomic and in my case now other parts) in response to a cancer. My body is trying to kill a cancer either before it comes on (or it is present but docs havent found it yet). So instead of just killing the cancer it also damages/attacks the nervous system. Some people have POtS along with their autoimmune disease such as lupus- and may not have a cancer.

    POTS can affectnblood volume - people feel better taking extra salt. I was prescribed salt tabs for months and later iv saline three times per week because of this. There was almost a room spinning effect or say the dashboard moving but I cant really call it that it was more like my visual orientation looking out was moving around separate from the body/moving around inside myself.

    Q: Do you have other autonomic symptoms affecting things like sweating, bowels, bladder, sexual function, etc?

    Q: Have you found a good neurologist? I Believe SATISH RAJ is a VANDERBUILT UNIVERSITY

    Willing to help however I can. POtS is very hard but conquerable in time, patience needed....

    MELISSA

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    • Posted

      Hi,

      Wow thank you so much for all the information 😃! I'm glad you've had success in finding a diagnosis on something that seems so difficult to get one on.

      The salt intake is a good tip I might try that or maybe drinking gatorade would somehow help a bit. I don't really have a high salt diet as of now.

      Q: Do you have other autonomic symptoms affecting things like sweating, bowels, bladder, sexual function, etc?

      As for other autonomic symptoms when this first started and was worse I had this strange tingling that would come and go in my hands but this has since disappeared. I do always have cold hands for some reason and tend to sweat a lot at night as well as frequently having to use the restroom but only at night even when I try not to drink water right before bed.

      Another odd thing that I've had is a feeling of shakiness / weakness that sometimes comes on as if my blood sugar becomes really low or that I have a rush of adrenaline but I know my blood sugar isn't low. This leaves me shaky and feeling a little weak for an hour until it passes.

      Q: Have you found a good neurologist?

      I unfortunately haven't found a good neurologist so far I've just been trying to figure out if this is the right direction to investigate. I also was thinking of finding a electrophysiologist I've heard they can help diagnose things like this as well.

      Is it common for someone with POTS to feel lightheaded even with normal blood pressure? For some reason I thought you could only be lightheaded with low BP so this seems odd to me that I feel lightheaded and my heart races even with normal BP.

      Thanks again for all your help.

      Best wishes

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    • Posted

      Hi Again, my pleasure. YES about lightheaded-thats very common with POTS. What SATISH RAJ and other POTS docs who have done research studies say is that POTS folks are more likely to have a feeling like they are going to faint but not actually faint where others would just faint and the feeling would pass-we suffer more. In dysautonomia forums its referred to as syncopy.

      The weakness you speak of is also common.

      It sounds like you need to see an endocrinologist in addition to a dysautonomia/POTS savvy neurologist.

      If you go to dysautonomiainternational.org it should have a listing of dysautonomia savvy docs on there in different parts of the country and world. Also on that site are so many helpful things- connections to facebook support groups and important talks from the worlds leading experts on pots

      and neuropathies like autonomic neuropathy. Highly recommend watching Satish Raj and others talks given at dysautonomia international conferences/events. Beyond Satish Raj-Vanderbuilt, Steven Vernino-Tx, Brent

      Goodman-mayo, Laura Pace in UT are all experts. Recommend having your neurologist order autonomic testing and catecholmines (laying down and standing) but remember testing results can often be innacurate. Best autonomic lab I have found is that of Peter Novak at Faulkner/Brigham and Womens. Mass General's testing missed my abnormalities OR it took two years to show up. You might benefit from a small fiber neuropathy skin biopsy of

      the ankle. Diabetes can cause small fiber neuropathy so can other things.

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  • Posted

    Hi! I think you have come to the right place. Your symptoms are very similar to what is connected to a nervous system issue & likely, as you said, not directly connected to your heart. Which is why your testing didn't throw red flags.

    However, your autonomic system is the major systematic primary that actually controls the heart & other involuntary functions of the body. It directly impacts having anxiety, shortness of breath, fatigue/stress, dizziness, etc.

    What I have found to be helpful & effective to slowing the heart back to it's normal rate is performing the carotid massage. It is Not actually a massage but applying pressure to your neck. This happens on the left side (you may also do the right at the same time)about 1/2in below the ear with 3 fingers. Sit up straight, lift your chin to the ceiling, & apply the pressure as if denting a tennis ball. It is common to feel somewhat faint (perceived as a sign this is a hyper nerve causing the issue) & you may be able to tell/feel your heart rate slow & regulate down to it's normal functioning.

    Disclaimer:

    Check into your Vagus Nerve & talk to your doctor prior to performing anything. This is my opinion & not medical advice.

    Best of luck!!! 😃

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