Atypical POTS Presentation?

[smm2197]

Hello all,

I am a 20 year old male with a confirmed diagnosis of POTS and SFN in my legs (biopsy proven). Other than SFN, there seems to be nothing else contributing to my dysautonomia. Doctors seem somewhat baffled as to how I developed SFN, however I did receive the Gardasil vaccine. However, my presentation of symptoms seems to differ from a lot of people on here so I am reaching out to see if anybody is similar to me? Upon standing, I do get tachycardia and meet the POTS criteria briefly, but then my heart rate will actually start to regulate and go back down to baseline when it hits around 110 bpm. My blood pressure also seems to rise upon standing, it will rarely drop.  As stated above, I also do have SFN but I have never experienced pain, numbness, tingling, or loss of sensation like most with SFN do. I am by no means complaining about this either, it just doesn't make sense to me! It doesn't make sense either how my tachycardia and blood pressure seem so controlled yet I am still run down with lightheadedness, tinnitus, brain fog, and fatigue! Does anybody else have a POTS presentation similar to mine? 

[yogini]

You might want to try googling - I believe I have seen studies linking Gardasil to dysautonomia.  So, that could be the cause.  However, lots of people get SFN and POTS without any explanation or clear cause.  Some people have an increase in blood pressure and it's not unusual  to symptoms of fatigue etc. even when your vitals are normal.  I hope you feel better soon.

[smm2197]

Thank you for your insight! I too hope that I feel better soon  My real confusion stems from why I feel so awful even though my heart rate and blood pressure are somewhat stable, even when standing. However, I have to often remind myself that POTS is so much more than tachycardia. 

[edriscoll]

You said it best "POTS is so much more than tachycardia"  and I would add that dysautonomia is still so misunderstood.  What you are experiencing is not unheard of - sometimes symptoms of autonomic dysfunction are lumped into the POTS classification because that is the dysautonomia most familiar to the doctor.  But it is also important to remember that the symptoms for POTS are a guideline and not everyone experiences things the same way. 

I was originally diagnosed with POTS even though I didn't have the classic reactions when standing.  I also didn't have the POTS classic reaction to the tilt table test.  Yet, I clearly had autonomic dysfunction.   I rarely have spikes in BP, yet frequently have alarming bradycardia.  I have extreme exercise intolerance - I laugh at that description because I wouldn't think that raising my arms to shampoo is exercise - but it sure can cause symptoms.   Constant fatigue, neuropathy, and the worse for me - shortness of breath, just to name a few.  But I have never been the classic POTS patient with symptoms upon standing or within 10 minutes of standing.  

When I found a specialist who was experienced with autonomic disorders, and began my own research, I found out about the many types of dysautonomias and the different presentations they can take.  The symptoms listed as hallmarks of the disorder are the ways symptoms present for the majority of the population.  They are by no means the only way people can experience symptoms with the disorder.  Also, and this is hard to keep in mind, but our bodies are changing constantly - blood flow, HR, BP, lung capacity, exposure to virus and infection, barometer, sleep, pain - the list goes on.  These are all things that impact how we feel and changing states our bodies experience depending on what we are exposed to.  It is a sort of domino effect in the body - but when you look at a list of symptoms or descriptions of disorders, none of that is taken into account.  It would be impossible to do.  So, it's tough to keep in mind the ways these other things are intersecting with your illness and your treatment.  It's tough for you and your doctors.  So what you experience for weeks, may not be how it presents weeks from now.  

I hope you find symptom relief soon.  Keep asking questions with your doctors and reaching out to other patients.  It is truly the best way to find what works for you.  It's a process....Best of luck!

[zerohours000]

On 5/20/2018 at 12:21 AM, smm2197 said:

Hello all,

I am a 20 year old male with a confirmed diagnosis of POTS and SFN in my legs (biopsy proven). Other than SFN, there seems to be nothing else contributing to my dysautonomia. Doctors seem somewhat baffled as to how I developed SFN, however I did receive the Gardasil vaccine. However, my presentation of symptoms seems to differ from a lot of people on here so I am reaching out to see if anybody is similar to me? Upon standing, I do get tachycardia and meet the POTS criteria briefly, but then my heart rate will actually start to regulate and go back down to baseline when it hits around 110 bpm. My blood pressure also seems to rise upon standing, it will rarely drop.  As stated above, I also do have SFN but I have never experienced pain, numbness, tingling, or loss of sensation like most with SFN do. I am by no means complaining about this either, it just doesn't make sense to me! It doesn't make sense either how my tachycardia and blood pressure seem so controlled yet I am still run down with lightheadedness, tinnitus, brain fog, and fatigue! Does anybody else have a POTS presentation similar to mine? 

Hey.  I'm 33m and I was told I (might, pending full TTT results) POTS and SFN (though no biopsy; just told I have it).  I at first didn't have the BP issues.  However, this is was how I was diagnosed: my neuro took my BP sitting and standing and it met the criteria.  I thought I had it under control (as of only last week she said my BP had "stabilized") but I've been getting worse, in my opinion, ever since.  My sleep has worsened (can only get 1 hour sleep at a time --- so 7-8 times of 1 hour basically per night).  My heart does beat fast after I get up --- especially after the 1 hour naps --- and I think even a bit when I get up and so something.  But here's where we're similar: it doesn't get out of line where I come close to fainting or getting dizzy.  But like said above, it could just be presenting differently on a scenario to scenario basis.  I feel like it's been something new each week with me with no real periods of getting better.  I hope it's not progressive but we'll see.  Good luck.

 

Zer0