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Linz1501

Undiagnosed- Does this sound like Dysautonomia?

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Hi there. I have been struggling and am grateful to have found this support group in hopes of some clarity. For years I’ve had random lightheadedness upon standing. It was infrequent and I just shook it off for a long time before finally asking the doctor about it. I was told at that point that I had ortho static hypotension and just needed to move slower. I let a couple more years pass before it started happening several times a week. I finally brought it up to the doctor again as I was also getting severe headaches and experiencing light sensitivity, and this time I was told my BP and HR actually increased when I stood up. I was sent to a cardiologist for testing. In the meantime, as a possible “POTS” diagnosis was being researched I started to realize I had other symptoms for years that I just figured were my “normal” such as stomach issues, constant thirst and frequent urination, anxiety/shaking, shortness of breath, chest tightness/pain and random pain throughout my body. Now my symptoms have changed and worsened, or maybe I’ve just become more aware. In attempts to monitor my heart rate, I purchased a blood pressure monitor. What I discovered kind of shocked me. Many people mention with POTS, the irregular heart rate. With orthostatic hypotension the low BP upon standing... nothing quite makes sense to exactly what I experience. For example, when I’m resting my BP is anywhere from 80-100 over 45-75 (very low!) My HeartRate is typically all over the place, sometimes resting at 60, sometimes 80. The moment I stand up, my BP increases by 20-40 points- both numbers. My HR usually increases 20-30 upon standing. A simple task such as changing my clothes and blow drying my hair (to get ready for work) puts me at a BP of 153/105 with a HR of 140. It’s so irregular and changes every time I move. This is a daily occurrence. It scares me to think what kind of damage this is doing to my heart. Other symptoms include headaches, light sensitivity, seeing flashes/spots, noise sensitivity, stomach issues, nausea, loss of appetite, chills/cold often or unable to remain a comfortable temperature, Cold hands and toes, shaking, pain, ringing in ears, lightheadedness upon standing, Heart palpitations, fatigue, chest pain, shortness of breath, brain fog, frequent urination, never feeling that my bladder is empty, constant thirst/dry mouth-I have water by my side constantly... Does this sound like autonomic dysfunction? Can anyone relate to these symptoms? I really would like to understand what type I have and possible other conditions causing it but I don’t know if my instincts are correct. My primary wants me to now see an electro physiological cardiologist but I’m not sure if that will be another unnecessary visit. A main concern is that I failed my tilt table test... can I have Dysautonomia with a negative tilt table? Nothing was found with a 48 hour heart monitor other than the fluctuations of my HR, with no explanation of why.. Stress test was fine, MRI and MRA were fine.. all blood tests came back normal. it’s all so confusing. I would really appreciate any insight you might have to give. And I apologize for sounding so pessimistic.. I’ve been handling this basically on my own and I’m feeling defeated :( 
Thank you.

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@Linz1501 - I have hyperadrenergic POTS with BP and HR readings as well as symptoms very close to what you are experiencing. I had 2 Tilt table studies in the past, one showed neuro-cardiogenic syncope and the other one showed POTS ( although misdiagnosed by the performing Electro-physiologist ). According to many autonomic specialists the TTT is NOT the golden standard. I would see an autonomic specialist for the symptoms you are having. 

1 hour ago, Linz1501 said:

My primary wants me to now see an electro physiological cardiologist but I’m not sure if that will be another unnecessary visit

It is common practice to be evaluated by an EP or cardiologist for the symptoms you describe, you should always follow your PCP's suggestions. Most people on this forum have to see specialists such as EP's for our symptoms. A normal TTT does not mean that you are not having symptoms - it may just have been a good day. 

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Thank you so much for your response. I’m sorry you are suffering as well, but it gives me reassurance to know someone can relate and that I’m not making this up in my mind. I am hoping to find someone in my area with knowledge of Dysautonomia, and will see the EP. Thank you. 

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@Linz1501 - many of your symptoms sound very familiar to me. Most of us have slightly different dysautonomia symptoms, and they change over time. But your story is similar to mine and many others. 

I nearly failed my TTT. The doc didn’t want to diagnose me with POTS but the data showed that I have POTS. On different days my POTS is better or worse depending on a bunch of factors, including random chance. 

My POTS is related to small-fiber neuropathy. One of the few reliable lab tests for small-fiber related dysautonomia is sweat gland dysfunction. If large-gland neuropathy is suspected, then EMG (to test the speed of neuron transmission when shocked - I think) is the recommended test. My doc explained that one, the other or both neuropathies would lead to different treatments.

If you go to a specialist, you’ll want the data. Specialists often take a long time to see, and many require proof of dysautonomia before they will see you. 

I’m sorry you’re going through this. It takes a while to figure this stuff out. Dinet helped me adjust, and helps me learn about myself. 

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Thank you so much for the advice, support and reassurance. I’m fortunate to live a couple hours away from Mayo Clinic so I think I’ll seek further testing there. I will mention the tests you described. Wishing you healing and am glad the page has helped you through your journey as well. I’ve learned more from patients than doctors at this point, and I’m very grateful to you all! 

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