Doctors suspect I have Sympathetic Dysfunction (Dysautonomia). has anyone experienced these symptoms?

[Ctorch294]

hello, I am a 26 year old male.  i've been having weird symptoms the past couple years, but now that I think about it i've had flashes of them since I was little.  I fainted twice in highschool around ages 15/16. When my parents took me to the hospital after once passing out in the hot shower the docs found nothing wrong except that I had some orthostatic hypotension which they thought wasn't severe at all.  Nothing was done about it, and although I regularly would get dizzy on getting up too fast I didn't really pass out again until my 20s.  throughout college there would be some days where I would go lift at the gym and be unable to finish my workout due to how lightheaded/sick id feel after each set, but it didn't happen too often so I ignored it.  

->Fast forward to age 24 I start getting this on and off feeling of air hunger every once and a while. Palpitations would occur too.  at 25 it was happening more consistently.  Since early 2020 I Have rarely been able to get through a workout at the gym or a hard run without getting dizzy, super out of breath, and my heart pounding out of my chest.  a few times I Almost passed out doing a mile run at around 7/8 minute pace. my heart was beating out of my chest and I quickly got myself to the floor before I would have fainted.  This led me to see a cardiologist for which I did all the tests (EKG, stress test, echo, holter) all coming back normal.  my cardiologist seems to think I have some type of dysautonomia as does my girlfriends dad who is a physician.  just to hit my bases i'm seeing a pulmonologist soon  as well.   Does this sound similar to anyone elses situation?  Just curious.  I'm scared to even workout now or run hard from fear of my heart getting erratic and breathlessness that makes me pass out. After Every set at the gym it feels as though no matter how much I gasp for air im not getting enough. It really sucks and its been bumming me out a lot seeing how I was a solid athlete just a few years ago :(.   sometimes a brisk walk even brings on the feeling of air hunger. 

Thank you for your time and for any responses. 

[Pistol]

Hello @Ctorch294 - welcome to the forum, but I am sorry you are coming here for these issues! -- What you describe certainly sounds like it could be a form of dysautonomia.  Since your cardiologist suspects this - has he considered a Tilt Table Test ( TTT )? That is usually the most common way to establish if you have orthostatically triggered dysautonomic symptoms. Under our Information Tab you can find many articles that explain the procedure and the diagnostic criteria for POTS and other autonomic consitions, like neurocardiogenic Syncope ( NCS ) or orthostatic hypotension. 

I have both NCS and POTS and am very familiar with the symptoms you describe. I also passed out in my mid-teens and then not until my 20's. I would get dizzy often and have a racing heart but did not get severely ill until I was in my early 40's. I started to pass out at work, in stores, at home, in church, in restaurants ... in Dr offices and hospitals ... EVERYWHERE! My first TTT showed NCS ( HR went up, then plummeted and I fainted ) and the second one was positive for POTS. 

I hope the pulmonologist will not find anything serious. I too experience shortness of breath with slightest exertion but my lungs are good, it is the circulatory changes that can cause this symptom in POTS. 

Good that the cardiologist checked you out so thoroughly, but it is common in dysautonomia to have all tests come back completely normal. I am however surprised that the stress test was normal, I failed all of mine with tachycardia and chest pain. I would ask for a TTT as a next step, it is what should be done when suspecting dysautonomia. Depending on those results there are other tests that are more specific to autonomic disorders that can be done too. 

I can tell you what I know you could do to at least stop things from getting worse: drink lots of fluids, eat a lot of salt, wear compression garments ( very important to minimize fainting ) and - equally important - stop exercising so hard! Usually when we are symptomatic they recommend 30 minutes of aerobic exercise 3 times a week, followed by ample rest periods.. Since your body is used to exercising you may simply start by not pushing so hard through the routines. Despite the health benefits of exercise - for dysautonomic patients intense exercise can make things worse. It is best to listen to your body, pat attention what exercises or after how many minutes you start to feel bad, and then try to stop before you get to that point. Pace yourself! 

But one good thing is that the younger and healthier you are when you get it ( if that is what is your problem ) the better your chances of getting over it. Despite POTS etc being a chronic condition - many people have improved completely, despite having had some rough years from it. The above recommendations are what you can do for yourself to get better, but in most cases people do need some kind of medication to get better, at least for a while. Beta blockers are often the first line treatment for the tachycardia and palpitations, as well as fludrocortisone or Midodrine. Depending on the mechanism causing POTS ( and there are many different kinds ) it can take a while of trial-and-error before the right treatment is found. 

I hope this is helpful, and please let us know how things turn out! Be well!!!!

[cmep37]

On 11/27/2020 at 11:51 PM, Ctorch294 said:

Does this sound similar to anyone elses situation?

Oh yes, I passed out several times as a teenager and then learnt to recognise the warning signs that I was about to faint so well that I never actually fainted again.  When my ears started to ring and my vision to grey out at the sides I would sit down regardless of where I was (in the middle of my own high-school graduation ceremony was probably the most embarassing!) It didn't really happen that often or affect the rest of my life, it was just a little quirky thing of mine that I struggled to stand in the heat or when I had my period.  I then got mono/glandular fever and this little quirky thing started to take over my life.  I was tired all the time and rather than feeling like I was about to faint a couple of times a month it would be a couple of times a week.  I saw a wide variety of doctors who suggested mental health issues - I was stressed at work, I was depressed, I had anxiety.  None of them ever took my HR and BP standing, only when I'd been sitting in their office for a bit and although my HR was a bit high and my BP a bit low it didn't concern them.  They suggested I exercise more so I was brisk walking for an hour every day and going to then gym 3 times a week although my heart was pounding, I was terribly short of breath and dripping with sweat from very little exertion and I would have to go straight home to bed.  I finally had a complete collapse and could no longer stand for any more than a minute before I was ready to faint.  Eventually I was diagnosed with ME/CFS and continued to get worse and worse until I was bedbound for 2 1/2 years.  Over time I learnt to manage my symptoms better, to stop overdoing things and to try to work within my limitations but I've never managed to become any better than mostly housebound. 

About 5 years ago I was reading an article online that described POTS and the penny dropped - THAT was what I had.  My GP had never heard of it but took my HR and BP sitting and standing and was quite surprised by the rise in my HR.  I got referred to a cardiologist who didn't seem to know anything much about POTS either - he regarded it as psychosomatic, I was lazy and didn't want to work so my brain had come up with a way to help me.  I begged him for a TTT and he reluctantly agreed.  The TTT was positive for POTS - I had an increase of over 70 BPM within 14 minutes.  I then saw a more knowledgeable cardiologist who referred me to a rheumatologist who diagnosed me with hypermobile Ehler Danlos Syndrome.  Have you ever been assessed for that?  The two conditions often go together - I'd always known I was double jointed and prone to sprains and strains.  Now I know that hEDS can make your veins super stretchy so blood pools in your feet and your heart has to pump faster and faster to compensate. There's no cure for hEDS but it's good to know about it as it is genetic and can been passed down if you decide to have a family.

If you do have dysautonomia, @Pistolhas given you very good advice about extra salt and fluids and compression - waist high is best! Maybe you should concentrate on exercise which builds leg muscle to help with blood return to the heart - things like cycling (recumbent is best for avoiding orthostatic symptoms) or rowing and swimming is particularly good as the water helps provide a kind of compression which stops blood pooling.  I've never found any meds that worked for me long-term but I'm in a minority - most people get some benefit from drugs that slow the heart (beta blockers or ivabradine) or that constrict the veins (Eg Midodrine) or that boost blood volume (eg Fludrocortisone).  

Please feel free to ask questions - it can be really frightening and lonely to have these kind of symptoms but there are many of us fellow sufferers out there!