CharlieJacks Posted January 5 Report Share Posted January 5 Hi guys! So I have to make a GP appointment and see if they can test me for Pots. I was in the ER two days ago after a bad episode, & the ER dr suggested I may have pots and I should have a halter monitor and a stress test done and to see a cardiologist as well. What questions should I ask the gp? Here are some of my notes, I’ve been keeping track of, & hopefully make it easier for the gp… Thank you for any help, tips etc Since Friday 29th Dec Ears ringing Back aches Knees/shoulders ache Dizzy if stand too long, and shortness of breath Heart racing especially when I move ( like get up for toilet Unsteady feeling When standing for a few minutes- tingling in legs and a feeling of pressure.. ears start ringing… sweats.. Heart racing. Not sleeping well, interrupted, knees aches all night Tired a lot (Sometimes) While sitting, when I move my eyes I feel dizzy Headaches constantly (sometimes turn into migraine) Weakness in arms/hands Indigestion, Daily & multiple times. Rib hurts, like I’ve pulled a muscle, lasts about 15/20 mins. Pains behind breast (tightness) (Sometimes) very hard pulsing in neck & collar bone area Feels like my body is shaking while sitting, or standing to long Redness in face Mottled skin- most of the time Muscle cramps- usually leg, sometimes feet Muscle twitching IBS Dr recommend: gp visit, halter hr monitor, stress test and cardiologist app Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 5 Report Share Posted January 5 @CharlieJacks welcome to our forum! The list of symptoms you posted does sound like you may have dysautonomia. All the tests they recommended and the cardiology referral are appropriate but it is usually by Tilt table test ( TTT ) a diagnosis of POTS is confirmed. A PCP can order one but most likely the cardiologist would want it. If your PCP is open to it they might order one so you could get it done prior to your cardiology appointment. You can also ask your PCP to do orthostatic vitals in the office, meaning they take your HR and BP while lying down, sitting up and standing. This you can also do at home if you have a BP cuff. Here is a guide to how to do it https://www.cdc.gov/steadi/pdf/STEADI-Assessment-MeasuringBP-508.pdf It is important that the BP gets taken after you stand up for over a minute and again after 3 minutes of standing. This may be helpful to you Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 5 Report Share Posted January 5 @CharlieJacks, Pistol covered it pretty good. One thing I noticed was your start date. Did the symptoms come on suddenly on that day? Or can you recall a buildup over time? Do you have any other conditions? Any autoimmunity? Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 5 Report Share Posted January 5 @CharlieJacks, welcome to the forum. I would suggest that you start recording your blood pressure and heart rate, as well as your symptoms, episodes, activity, and any other information you think might be relevant. For example, feeling worse in hot or cold weather, or after meals. For the blood pressure and heart rate, it is good to take “resting” readings at the same time each day as well as readings during an episode (if possible). Resting readings need to be taken in a certain way. The dot points on this page give good instructions: https://theskepticalcardiologist.com/hypertension-high-blood-pressure/ Also, you may find it useful to learn the meaning of the term “orthostatic intolerance” and do a little reading on it. Good luck taking the first step with your GP and please do come back and ask more questions if needed. And folks here are always ready to offer support too. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted January 6 Report Share Posted January 6 First thing I would ask is if the doctor understands what POTS and dysautonomia are. You'll know immediately if you need a new doctor or he'll at least get you to where you need to go. Quote Link to comment Share on other sites More sharing options...
CharlieJacks Posted January 6 Author Report Share Posted January 6 Thank you all for your replies! I have had numerous “episodes” over the years, so this wasn’t the first time, But it’s definitely the first time it’s been over a week with it. The ER dr said this was probably brought on was due to a viral infection. I have just ordered a HR & a bp monitor so I can keep a record of when I have a moment. Thanks again guys! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 6 Report Share Posted January 6 9 hours ago, CharlieJacks said: The ER dr said this was probably brought on was due to a viral infection @CharlieJacks POTS - and similar dysautonomias - often are brought following a viral infection ( as Long-COVID, for example ) They used to call it post-exertional malaise. Quote Link to comment Share on other sites More sharing options...
mehaller Posted January 6 Report Share Posted January 6 Agree with Pistol. Only thing I can add is to perform a lot of your own orthostatic blood pressure tests. CDC has a guideline, but basically, lay still for five minutes, take a "baseline supine" BP and HR (helps to have someone taking notes). The stand and take BP/HR after one minute. Then again at three minutes. I built a spreadsheet with dozens of tests. I am convinced it got me into see a neurologist faster. Your Primary will run you through a lifetime of "elimination" tests, e.g. heart, CT - head scans, liver and kidney etc. You might be able to short circuit that part of your journey. My primary and cardiologists (yes, two) had me wearing monitors, and I did two stress tests in months. Some shops will perform a Tilt Table test but will not have the high resolution BP monitor, just static - plain old BP. Heck, one of my cardiologists said, "Oh, we don't do tilt table tests anymore" Point being, your primary or even some specialists can box you into persistent testing for what they think they know. My spreadsheet included time of day, and notes on severity of lightheadedness on a 1 - 2 - 3 scale. You have to be your own advocate. Again, I'm convinced it got me into neuro faster, and, I kept taking tests adding to the spreasheet. The neuro doc was wide eyed when I showed him the data.That said, it still took over six months to get a Tilt Table Test and QSART. And that was just before Long Covid reared its ugly head and put even greater demand on those services. Good luck. Quote Link to comment Share on other sites More sharing options...
CharlieJacks Posted January 6 Author Report Share Posted January 6 1 hour ago, mehaller said: Agree with Pistol. Only thing I can add is to perform a lot of your own orthostatic blood pressure tests. CDC has a guideline, but basically, lay still for five minutes, take a "baseline supine" BP and HR (helps to have someone taking notes). The stand and take BP/HR after one minute. Then again at three minutes. I built a spreadsheet with dozens of tests. I am convinced it got me into see a neurologist faster. Your Primary will run you through a lifetime of "elimination" tests, e.g. heart, CT - head scans, liver and kidney etc. You might be able to short circuit that part of your journey. My primary and cardiologists (yes, two) had me wearing monitors, and I did two stress tests in months. Some shops will perform a Tilt Table test but will not have the high resolution BP monitor, just static - plain old BP. Heck, one of my cardiologists said, "Oh, we don't do tilt table tests anymore" Point being, your primary or even some specialists can box you into persistent testing for what they think they know. My spreadsheet included time of day, and notes on severity of lightheadedness on a 1 - 2 - 3 scale. You have to be your own advocate. Again, I'm convinced it got me into neuro faster, and, I kept taking tests adding to the spreasheet. The neuro doc was wide eyed when I showed him the data.That said, it still took over six months to get a Tilt Table Test and QSART. And that was just before Long Covid reared its ugly head and put even greater demand on those services. Good luck. Thank you! I have ordered a HR monitor and a BP monitor to help track as well. Just so I have some I guess info/results to show the GP… I am a little nervous on whether or not they believe me.. It took me over 12 months to get diagnosed with herniated discs, after seeing 3 different doctors, And after reading about pots, it seems like it might take a while to get results.. so I figured the more at home results I can gather, the more helpful it may be.. but thanks again! Quote Link to comment Share on other sites More sharing options...
CharlieJacks Posted January 6 Author Report Share Posted January 6 On 1/6/2024 at 8:17 AM, Pistol said: @CharlieJacks POTS - and similar dysautonomias - often are brought following a viral infection ( as Long-COVID, for example ) They used to call it post-viral malaise. Yeah that’s what the ER doctor said Quote Link to comment Share on other sites More sharing options...
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