Vivian Posted January 22, 2018 Report Share Posted January 22, 2018 Hi, I'm new to this forum, so thank you kindly for any help in advance. I have a few of the issues associated with Dysautonomia, specifically looking for advice regarding POTS. Diagnosed a few years ago now, had some success with medications and exercise therapy, but had ups and downs as I'm sure we've all had. Until now I've always had exercise intolerance, pain, fatigue, and presyncope episodes when standing with dizziness, feeling hot, vision problems, etc. No actual fainting. But now I'm experiencing actual syncope (no warning, but quick recovery I think). I haven't seen my cardiologist yet, as my appointment is a while away, and she's hard to get into (didn't feel this was an 'emergency'). I'm not certain this is Pots related, since it has never been part of my presentation. I guess I'm wondering if anyone else has experienced a change in their Pots over time, especially since people seem to either have syncope in their diagnosis or not, from the people I've heard, so perhaps mine is a non-cardiac issue and I should just go to the local doctor (I live in Australia). Thank you. Quote Link to comment Share on other sites More sharing options...
Missy M Posted January 22, 2018 Report Share Posted January 22, 2018 Yes. I’ve had symptoms for 17 years. In my case, the symptoms have very gradually but quite definitely evolved over the years. So a medical test for me may yield one set of results one year but yield quite different results a few years later. In my situation, the dysautonomia has most definitely changed over time. That’s what makes it feel like trying to nail jello to the wall sometimes... new symptoms (or slight changes in symptoms) seemingly randomly pop up many, many months apart. The gradual nature of the symptoms evolving over time can make it challenging to connect the dots on “cause and effect”. For example, I never had leg pain until suddenly I did. It ended up being years before a blood test (taken for a whole different reason) showed the mystery muscle pain which had lasted for years was caused by an electrolyte imbalance... caused by the dysautonomia. Once we knew that, the mystery leg pain - mistakenly thought by one doctor to be arthritis- was then easily resolved with nutrition efforts aimed at electrolyte balance. I’ve found it can help me sort things out to list on paper a timeline of when each new symptom appeared. It helps me to see it all on a timeline as a general overview. I can then spot connectiins (or even figure out changes in circumstances that might have been triggers for new symptoms) which I had not noticed before. Quote Link to comment Share on other sites More sharing options...
Vivian Posted January 22, 2018 Author Report Share Posted January 22, 2018 Thank you for your reply. I'm sorry you've had to put up with all this for such a long time! Yes the leg pain does seem initially a bit random, but great that it was eventually connected and the cause identified. That's really interesting to hear that your condition has evolved, I feel reassured in a way, that I may be not so unusual. Great idea about the timeline, I will give that a try! When you have a new symptom like your leg pain, do you tend to discuss it with a doctor fairly soon?/Do you find they are on board in helping potentially link obscure things back to dysautonomia if relevant? I just ask because I've had a few who are quite dismissive (thinking I'm perhaps looking for attention or similar), and not much time for dysautonomia. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 22, 2018 Report Share Posted January 22, 2018 I also am new to this forum but had POTS for 8 years. In my case I started passing out early on and still do at times but I was told by my specialist that POTS symptoms change over time. That is one reason why it is so frustrating - you never can be sure that you are "stabilized". My symptoms change often and triggers are plentiful, like Missy M experienced. I find that a new onset of syncope should be evaluated right away. Have you told your Dr about the pasing out? If she knows she might want to see you sooner? Quote Link to comment Share on other sites More sharing options...
Clb75 Posted January 22, 2018 Report Share Posted January 22, 2018 I’ve had the opposite happen, I started off with frequent syncope spells but now with florinef I don’t pass out like I used to. I think it’s a good idea to mention it to your doctor, so you can rule out if it’s related or not. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 23, 2018 Report Share Posted January 23, 2018 It is not uncommon for dysautonomia symptoms to change over time. I'd definitely touch base with your doctor on the new symptoms, though. Quote Link to comment Share on other sites More sharing options...
Vivian Posted January 23, 2018 Author Report Share Posted January 23, 2018 Thank you everyone for replying. It's really interesting to hear how people's symptoms have changed - and also frustrating to think that you have a handle on things and then they change. I'm definitely gathering that I should talk to my doctor. Don't know about just starting with the GP or going straight for the cardiologist/POTS doctor. Thanks for the help, we'll see how we go! Quote Link to comment Share on other sites More sharing options...
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