Doctor Frustrations
I’ve been trying to get a diagnosis for my issues probably 10-15 years now, if not longer.
I’ve had issues with high heart rates, struggles with exercise which also caused major facial flushing, constant tiredness no matter how much sleep I got, heart flutters / feeling that my heart skipped a beat.
For my first attempt to be seen by a Cardiologist, they had me do a Holter monitor and after reviewing the results the Cardiologist recommended an ablation. Before proceeding, I wanted to get a second opinion to confirm what he told me. The second Cardiologist, however, reviewed the same Holter monitor results and said there was nothing there to show that I needed an ablation. He also seemed to have a prior opinion of my first Cardiologist which now made me feel uncomfortable with both opinions. I then decided to see a Cardiologist in a bigger town about 3 hours away. After multiple tests and consultations, however, this doctor suggested it was just anxiety. Of course this was a frustrating diagnosis as it didn’t seem to fit, but I didn’t have a medical degree so who am I to question it? My main push back on this diagnosis is how I struggled with simple hikes. I would get winded easily and have to stop and either squat down or bend over and rest until everything normalized. I tended to have to do this several times just go get through it. It did not seem like a simple “out of shape” issue, but also how could something that is supposed to be enjoyable and calming be causing me anxiety? It didn’t make sense, but I went on with my life.
I ended up moving to a different state and ended up questioning things again. I decided to try one more time and found a new cardiologist. This new doctor order her own tests - EKGs, stress tests, etc. The results did show how my heart rate would spike and take awhile to come back down. She ensured me that while this did show that I didn’t need to be concerned with the health of my heart. She then started to look at POTS. She did not have access to a tilt table test, so instead did the simple version. At this point, she decided it wasn’t POTS but seemed to be similar. I didn’t really know what this meant but at the time I didn’t really know what POTS meant either. She told me to hydrate, exercise, and sent me for Physical Therapy. I stuck with all of this for awhile, but life got busy and I slowed down on the exercise. I don’t know that any of it felt like it made a huge difference anyway, but I always meant to get back to it. She did tell me I didn’t need to come back for a year, but since they can’t book that far out I ended up taking longer to get back. I didn’t feel in too much of a hurry anyway as it didn’t seem like there was much they were willing to do about it.
About a month ago, my primary doctor had retired and I had my first appointment with her replacement. As she was reading over my medical notes she mentioned how it looked like my Cardiologist did seem to be going down the path of a POTS diagnosis but wasn’t sure why she wasn’t calling it that.
I had at this point started doing my own research on POTS and it seemed to make sense. I did an at home test and my heart rate did go from 82 to 115 from laying down to standing. I also started reading about how hEDS and MCAS were common with POTS. I was now curious if this could all be tied together and explain my constant headaches as well. I decided to make a follow up appointment with the cardiologist to confirm if it was POTS. At this point it had been almost three years since I have been there and she was very booked up. I ended up having to get an appointment with the NP, which I thought would be fine just to ask some of these simple questions.
That appointment was this morning and I feel disappointed. They did an EKG which looked normal. When the NP came in I told her how it sounded like the Cardiologist was looking at POTS but didn’t diagnose me with it. I asked if she knew why. She said I didn’t have POTS because my heart rate didn’t spike. I told her how I did an at home version and it went up over 30 beats just by standing. She didn’t seem to really care about that - I’m not sure why. She then said I had Inappropriate Sinus Tachycardia. Which from what I’m reading is basically the diagnosis when they don’t know why it is happening.
I talked about my at home test again and did mention my blood pressure also went up when I stood up. I knew from my research that this could be hyperPOTS, but as soon as I said it she told me that they are only concerned if the blood pressure drops.
I had told her how I recently had a week where my symptoms were worse and I was constantly getting dizzy and her response was basically was there something that triggered it? She asked if I was dehydrated that week. I told her nothing that stood out and that I was doing pretty well with staying hydrated lately so I didn’t feel like that was the issue. She told me it could be anything. Maybe it was due to fluctuations with hormones or maybe I wasn’t drinking enough as people with POTS need to drink more than typical people. At this point, I felt defeated. I didn’t say anything but wanted to ask why I was being blamed for not drinking enough when I told her I was drinking a normal amount and that I shouldn’t have to drink even more if, like she claims, I don’t have POTS.
I asked what she suggested and her answer was to hydrate more than usual, exercise, use electrolytes, and look into belly compression. At this point she may have realized my disappointment as in the last minute she asked if I wanted her to retest for POTS because she said she could do that. I told her no, that if it doesn’t change anything I guess there is no point. She said nothing changes. Come back in two years, but if symptoms get worse let her know and they can look at medication.
It is so frustrating. Maybe it is POTS. Maybe it isn’t. I understand my symptoms are not as bad as a lot of people on here, but the way they act is that I’m just being lazy. Yes, I can go and do things and I’m happy for that, but I can’t stand for long periods of time. I often have to lean against a wall for support or find somewhere to sit after some time. If I do get stuck standing for some period of time, I tend to move back and forth so that it doesn’t feel as bad.
I’ve went through different types of exercise and it never seemed to get better, so I would like to believe I’m not lazy. Before I knew I was having an issue I did Crossfit. I was the slowest person and probably the weakest, but I did it. When I decided to get out of Crossfit I tried 9Round for a bit. The owner of the place I went was actually a nurse for a cardiologist so when she noticed how high my heart rate got every time I came, she made me basically barely move for exercise in order to try to keep it within a normal range and she highly suggested I get checked out - which is what started this all. Granted, my heart flutter as much any more and I’m not as tired as I used to be. I don’t exercise like I wish I did, but I do get winded just doing a simple walk with the dog.
I guess I don’t know what I expected. After this long I think I just wanted to be validated. To be proven to myself and perhaps others, that no, I’m not lazy.
I don’t know what I’m expecting from this post either. I guess I figure this community has dealt with similar situations and perhaps can acknowledge the frustrations of trying to get a diagnosis for anything. I just wanted to vent for a minute.