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My Story..how I Got Diagnosed With P.o.t.s.


monica
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Hi Everyone! I’m new here though have been lurking around for a while and have found so much good information here. I have finally been diagnosed with P.O.T.S. and here’s my story….

I had a back injury followed by a very bad whip-lash accident many years ago. I went from doctor to doctor for my pain and they couldn’t find anything wrong on MRI, X-rays etc. Pain medicines didn’t work and after sometime I gave up on doctors and medicines. Meantime, shortly after the injury/accident , I also started having fainting and tachycardia episodes..sometimes I would have warning/presyncopes before these episodes and sometimes I wouldn’t. Gradually , over the years I started suffering from extreme fatigue and would have flare-ups of pain but sometimes felt better for months in between but other things like the fatigue, migraines, dizziness, chest-pain, feeling thirsty, sensitivity to noise/bright lights, fainting episodes, shortness of breath, blurry vision etc kept increasing. Also, the pain spread to my neck, shoulders and arms. So, I went to the doctor again (with a lot of skepticism) and was diagnosed with Fibromyalgia.

I started taking my BP at home and noticed that my BP was in 90-100/60-70 range and after the tachycardia and presyncopes/fainting episodes, I couldn't take my BP for 15-30 min and the machine would show always display an error sign.

Some days later, after a very bad tachycardia episode on standing, decided to see a Cardiologist too and had a TTT for 45 min (without medications) and the report said that I have no big fluctuations in HR /BP and no Orthostatic hypotension and no symptoms. I did have nausea/sick feeling, dizziness, chest and body pain and did tell the nurse..but for some reason she didn’t mention this in the report. There was no Cardiologist present during the test and the nurse kept talking to me during the test ( I later found out that it should be all quiet during the TTT) and told me a couple of times that my HR was in upper 90s and at one point my systolic BP decreased by 10 points? ( The hospital lost the detailed report of HR and BP readings, so I never found out what the actual readings were during TTT). Was referred to an EP Cardiologist after this and he said that I most likely have NCS ( vaso-vagal syncope). Repeated the TTT again with Isoproterenol and Nitroglycerine and another EP who did the test tlited me for only 15 min and was talking to me the whole time ( I guess he was more interested in the later part of the test). My HR went up by 23 bpm at the 10 min mark, no significant change in BP and I didn’t faint with either Isoproterenol or Nitroglycerine (my HR did tachy upto 150’s after I was tilted with Isoproterenol). I guess all **** broke loose after that because the EP said that I don’t have NCS after all and also because most of my presyncopal episodes take place sitting ( they happen on standing and from sitting to standing also). I was asked to see different specialists and after running from one specialist to another and a zillion tests, nothing significant was found. I was told by 2 Neurologists that I might have POTS and to follow this up with a Cardiologist.

Meanwhile I was also put on a 30 day Cardiac event monitor. It showed that my HR would tachy upto 160s especially after meals, hot showers and on standing. The Cardiologist said that I have IST ( Inappropriate sinus tachycardia) and because I recorded tachycardia ( 120-150s ) on the event monitor during the presyncopes, he was also not sure anymore if I have NCS. He said that I might have POTS/Dysautonomia but he’s not sure. Asked me to start taking Midodrine. I was not satisfied with the "not sure" answer and after a lot of research went to another specialist who had done research and clinical studies on NCS ( he specializes in Syncope). After taking my history and looking at the Event monitor and TTT results, he also said that I don’t have NCS and what I’m having is presyncopes due to POTS. He said that he can have me take another TTT but since I had done enough running around already and because he is sure that I have POTS , he’s going to give me a working diagnosis of POTS. I later also showed him print-outs of my BP and HR readings that I took at home lying and standing for 10 min ( I took these with a Withings BP cuff that automatically records the readings on my I-phone and you can print/email them for the doctor). My HR goes up by more than 30 bpm on standing most of the days but not always.

I had to go through **** to get this diagnosis but I’m glad that it’s all come a conclusion after years of suffering . I start on Florinex and Propanolol this week and am hoping that I will get some relief.

I am excited to have found this forum and look forward to interacting with all of you while dealing with this :)

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Welcome! What's with all these people talking to you during your tilt tests!? lol. :blink: I'm sorry you had to go through all that to get a diagnosis, but glad you finally did. Hope the treatment you receive helps you. My tachycardia episodes started shortly after a spine injury too. Out of curiosity, was it your back or neck (or both) that were injured and what type of injury? Also, how long after that did the tachycardia episodes start?

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Hi Naomi! Wow! I thought I was only one who started having all these problems after a back injury! Only my upper back was injured when I stood up straight after bending down, I heard a crack in my back....the whiplash accident happened a few months after this but gradually over the years, the pain spread to my neck and shoulders too. The presyncope/syncope started 1 year after the injury. I don't think I paid attention to tachycardia all these years.. I actually thought everyone had it :) But I do remember getting bad tachycardia just before presyncopes and also sometimes right after mild exercise. I remember this one episode 3-4 years after the injury, when I had extremely bad tachycardia for 1 hr right after walking lightly on the treadmill...I remember being extremely scared when it happened because my HR just wouldn't come down. I experienced something similar again this year and that's when I decided to show it to a Cardiologist.

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Thank you Corina!:)

Naomi, yes! I also believe that all my problems started after the injury/whiplash accident. There is a definite connection..it's like I changed completely after this. I used to be very active, could mult-task etc but gradually over the years, it's just been down-hill. My presyncopes/syncope also got worse....I had maybe 1-2 episodes per year in the beginning but this year I have already had 14-15 presyncopes!

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