samemmycatsmom

Just curious, what have your brain mri's shown? My report mentioned a couple of slight abnormalities and mentioned that these things are usually early manifestations of retroviral infections.....whatever that is. The two things it mentioned was prominence of the pharyngeal of probably adenoid tissue and it also mentioned mixed clivus fat. I am probably dreaming but I just wish there was some thing we all had in common that could explain our health issues. Thanks for sharing and best health wishes!

For those of you on a beta blocker, how did you feel before starting it compared to after starting it. I would love to hear both good and bad experiences with a beta blocker. Thanks

Thanks so much for your replies. It was reassuring to hear what doctorguest had to say. I think everyone but my mom has thought this is somehow related to my somewhat worrisome personality - even after 2 positive tilt tests and failing other autonomic tests. Thanks again.

Since some women first present with symptoms during pregnancy or after delivery, and since most women see a gyn yearly, it seems like gynecologists would be a very important group of professionals to educate about dysautonomia. If each gyn had a dysautonomia doc that they could refer patients to it could really help everyone (patients and doctors and insurance companies). Does anyone know how one would go about doing this? Who educates the medical professionals? I was having symptoms the day after delivery. It took a chain of 10 doctors (gyn->pcp->cardio1->cardio2->ep1->gyn->pcp->cardio3->ep2->endo1->endo2->neuro->diagnosis) to get a diagnosis. I think of all the money, time and frustration that would have been saved if the gyn heard the symptoms and realized it could be pots and referred directly to the dysautonomia doc. It only took a year for me to get a diagnosis...I know a lot of you have dealt with much worse for much longer. I am curious about how many of us have told a gyn about our symptoms in our journeys to find a diag and help and how early in the chain of doctors did we see the gyn.

I did an internet search on palpitations and dizziness and there were mostly anxiety hits. I have always been a worrier but I have never had a problem with anxiety and panic attacks. Until POTs started, I never noticed my heart beating in my life. Here are some situations where my symptoms show up. I was curious if you experience the same and whether or not you think it is related to dysautonomia or anxiety. In what type of situations are your symptoms gauranteed to flare up? It would be neat if there were certain things that we find we all have in common that could possibly lead to clues as to what is going on with our bodies! Does anyone else get wicked palps and dizzy after laughing? Does sitting at a cookout in the heat make you dizzy and shaky? Do stairs/mild exertion cause skipped beats/palps? Most sites mention that sitting down relieves symptoms. I have symptoms laying/sitting and standing...just different symptoms. How about you? Is the tachy worse in the morning for you? This morning I went from 44-140 in a minute but tonight I am going from 44-90...not as bad. Some nights it only goes up 10 bpm or so but the morning is always a huge jump. In the morning, when I feel the racing standing up, if I bend at the waste or kneel I can drop 80 bpm within seconds....how about you? Is anyone else on this board a shy person? I always have been and wonder if that could be a common thing amongst dysautonomia patients. Anything else you can think of that could be a common thing, let me know. I was a math major. With math, there is always some sort of a definitive answer.....the unknowns of POTs are driving me nuts:) As always - Thanks for your time!

Good Morning, I have started experiencing some new weird symptoms. My eyes burn a lot and today while trying to read at work, it looks like the words are bouncing around. My vision seems to be changing especially in the flourescent lights at work. In addition, the right side of my necks burns and feels tired. Anyone else experience similar symptoms? I just love my new mystery body that does something new and different every month or so:) Thanks, samemmycatsmom

Thank you very much. Your openness has been very helpful. You are all in my prayers and I think we should all be hopeful that more and more will be learned about dysautonomia in the future. Thanks again! Marie

Good Evening, I have been reading this forum for a year now. It has been very helpful and I just wanted to thank all of you. It is comforting to know there are others with the same situation. I was just diagnosed with POTS last month. I developed POTS after childbirth. It presented itself with dizziness and a extra slow heart rate after childbirth. I had a few questions for all of you if you don't mind. Were you an athlete before diagnosis? What was your presenting symptom? Did you develop POTS after childbirth? Do steps make your heart go crazy? Thanks again for your openness. This website has been very comforting this past year.