Help!

[dbp19]

I'm heading to the Cleveland Clinic on Friday 11/17/17 to see a cardiologist and I want to make sure I'm seeing the right people. I have had progressing symptoms consistent with POTS; resting heart rate is about 70 bpm and rises to as high as 150 bpm within a minute of standing up. I have all of the symptoms of POTS, along with an enlarged spleen, enlarged lymph nodes, and small fiber neuropathy. I've been dealing with these issues for over one year and still have no diagnosis of what this is. I've had my Primary Physician tell me that there is nothing wrong with me, that I have Chronic Fatigue Syndrome, and that I have a Conversion Disorder (it has been an infuriating experience all around). I went from working out and running 4 to 5 times per week to having difficulties holding my job and even getting up to use the bathroom. Are there any specific tests I should be asking for?

[HangingByAThread]

I was seen at Cleveland as well. I was told to expect to spend three days there and after I saw the dysautonomia specialist he then scheduled all the tests. Prior to my visit I chatted on line with a nurse who was also able to arrange for me to see a neurologist there. I had a lot of testing and even saw a vein specialist (I had a phlebo test, tilt table, stress test with echo, QSART, and a hemodynamic blood volume test with radioactive dye). The neurologist also did some blood work. All this actually did take 3 days. 

[HangingByAThread]

I forgot to ask, are you being seen in the Dysautonomia Clunic or by a "regular" cardiologist?  

[dbp19]

Thanks for the response! I was seen by a Cardiologist on Friday 11/17/17 and he took all my information and gave me a diagnosis of POTS. He also referred me to the Autonomic Clinic and scheduled multiple tests (Cardiac Tilt Table, Hemodynamic testing, and an Echo).  I was also prescribed a low-dose Beta Blocker. It's been such a long haul and my symptoms have gotten significantly worse over the past month. I'm so glad I took video of what happens with my heart rate so I could show the doctor. I've had an awful time with doctors that I'm almost conditioned to expect the worst, so it was fantastic to finally feel like I was/am being taken seriously! Obviously the diagnosis causes a conflict of good and bad reactions in me; I am so glad to finally feel understood and validated in the situation, and at the same time I am scared as **** about what my future holds. The uncertainty about whether it will continue to progress, even out or improve leaves me unsure of how to cope with the stress. To think I was doing really well during the summer of 2016 (I was running, working out 4 to 5 times per week, visiting friends in different states, able to work hard at my job...) and now in Fall/Winter 2017 I feel like I am a totally different person in almost every way (Can't think straight most of the time, pre-syncope multiple times each day, dizziness is constant, headaches, abdominal pain, constipation/diarrhea, food intolerance, can't sleep well ever, Brain fog, muscle twitches/spasms, cold hands and feet, tingling/numbing/odd sensations in my extremities, difficulty even standing for more than 10 or 15 minutes, and missing so much work that I am worried I will be unable to work in the foreseeable future...). Sorry to ramble on and on, this experience is just awful. I have been researching POTS and saw that the constant fluctuations in heart rate upon standing and sitting/lying down can cause spikes in Norepinephrine, which causes increased anxiety and a state of general hyper-arousal. That information helps me a lot as I have been agitated and have had a general feeling of dread which has increased exponentially over the past couple of months. I don't know how I'm going to get through this, but I will keep trying to plug along.    

[dizzyape]

I was diagnosed with orthostatic intolerance, inappropriate sinus tach and Ehlers Danlos 3.  I have been getting dizzy so much lately! I also take a low dose beta blocker three times a day.  The dizziness sometimes feels like I'm unbalanced sort of like equilibrium is off and other times I'm just super light-headed. It's hard not to freak out when it happens. I am not seeing a neurologist for another month. I take my bp when I feel like this and it's usually in normal range.  I wish I had answers as to what is causing this or how to get rid of it....so frustrating!!