So nice to meet you....and I really am happy for you to have access to an ANS doctor. Love the vid ... the sunset is too beautiful!!!!! Thanks for making me smile. LoLv.
@DysautonomiaMD Unfortunately, I have not met the ANS expert yet. I see him on June 20. I am in Toledo, Ohio so you can probably guess who the expert is. My original EP FINALLY admitted that he did not know what to do about my case and what the tests show. I'm sure he is an excellent practitioner for certain types of cases, and maybe even certain types of complex cases, but it was not a good fit for my "complex case." Dr. Grubb's NP came right out and told me that!
@lawgrad06 : you keep up the good fight and I know they will find answers. May I suggest that if the TTT is repeated ever, (woo-hoo that one is a doosey!), your cardiologist may want to consider doing a bedside ECHO at the same time. This way, they look at the heart itself as it is in motion. My LV didn't fill with blood, so it was pumping nothing. Hence my blackout. :-). Lovely to hear your feedback and your stories. Keep them coming! LoLv.
@DysautonomiaMD I apologize for taking so long to respond! That is an excellent idea about the bedside echo! They have not mentioned repeating the TTT, but I will definitely bring it up if they do. I saw Dr. Grubb a few weeks ago and he has got to be the most knowledgeable, yet compassionate and caring physicians that I have met! Wow! He said that there are several things going on with me. First, for some reason my heart became abnormally sensitive to adrenaline (to be continued)
@DysautonomiaMD in July of 2010, and that is why it goes into bigeminy and couplets every time I even just stand up! He thinks I have some combination of dysautonomia and cardiac issues (MVP with mitral insufficiency, etc.). Dr. Grubb is thinking that it's hyperadregenic POTS, but he said he is using the Coreg as a type of diagnostic tool. All it is doing so far is dropping my BP lower than normal! The episodes of presyncope and actual syncope were increasing even before (continued)
@DysautonomiaMD I started the Coreg, so I don't know if it's fair to blame the increasing frequency on the Coreg. I don't know what's what anymore! I see Dr. Grubb's NP next month, so hopefully they can confirm a diagnosis and get a responsive treatment plan in place. I don't know if you've ever met Dr. Grubb and Bev, but they are absolutely AMAZING!!! How are things going for you? By the way, I came across your name on Facebook-we both belong to some of the dysautonomia (continued)
@DysautonomiaMD groups and pages--imagine that :-) Anyway, I sent you a friend request, and I hope that's okay. If not, feel free to deny it. My name is Jenn F. on Facebook (I won't put my full last name on here for obvious reasons! Take care and I will talk to you soon!
@DysautonomiaMD At this point, we just know that I for sure have frequent and highly symptomatic ventricular bigeminy and couplets, NSVT, MVP with regurgitation, among other things. My first EP at UTMC said that bigeminy can cause lightheadedness, but not near-syncope and syncope. Before I have one of these episodes, every single time my heart speeds up and it goes into an abnormal rhythm. I always assumed it was the bigeminy throwing me out, but they are thinking (continued(
@DysautonomiaMD that there is actually something else going on. They are talking about putting in an implantable loop recordeo ger underneath my skin to get the most accurate data possible. My old EP was convinced that most of it was ANS related as opposed to a malfunction in the electrical system of my heart. But then he did a TTT and I fainted, not due to blood pressure or heart rate, but due to "multifocal bigeminy and paired" beats. Original EP wouldn't believe that it was an (continued)
@DysautonomiaMD abnormal rh hatythm throwing me out until it happened during the TTT. To make a long story short, that is when he decided that there was something else going on in addition to what they already knew and he sent me on to Dr. Grubb. Based on my symptoms and the test results, I would have to say it is a combination of an electrical problem and some sort of ANS dysfunction. By the way, it is great to meet you too! Yes, it is nice to find another professional on here!
Hope you are doing okay and wishing you a very bright day! LoLv.
DysautonomiaMD 7 months ago
So nice to meet you....and I really am happy for you to have access to an ANS doctor. Love the vid ... the sunset is too beautiful!!!!! Thanks for making me smile. LoLv.
DysautonomiaMD 9 months ago
@DysautonomiaMD Unfortunately, I have not met the ANS expert yet. I see him on June 20. I am in Toledo, Ohio so you can probably guess who the expert is. My original EP FINALLY admitted that he did not know what to do about my case and what the tests show. I'm sure he is an excellent practitioner for certain types of cases, and maybe even certain types of complex cases, but it was not a good fit for my "complex case." Dr. Grubb's NP came right out and told me that!
lawgrad06 9 months ago
@lawgrad06 : you keep up the good fight and I know they will find answers. May I suggest that if the TTT is repeated ever, (woo-hoo that one is a doosey!), your cardiologist may want to consider doing a bedside ECHO at the same time. This way, they look at the heart itself as it is in motion. My LV didn't fill with blood, so it was pumping nothing. Hence my blackout. :-). Lovely to hear your feedback and your stories. Keep them coming! LoLv.
DysautonomiaMD 9 months ago
@DysautonomiaMD I apologize for taking so long to respond! That is an excellent idea about the bedside echo! They have not mentioned repeating the TTT, but I will definitely bring it up if they do. I saw Dr. Grubb a few weeks ago and he has got to be the most knowledgeable, yet compassionate and caring physicians that I have met! Wow! He said that there are several things going on with me. First, for some reason my heart became abnormally sensitive to adrenaline (to be continued)
lawgrad06 7 months ago
@DysautonomiaMD in July of 2010, and that is why it goes into bigeminy and couplets every time I even just stand up! He thinks I have some combination of dysautonomia and cardiac issues (MVP with mitral insufficiency, etc.). Dr. Grubb is thinking that it's hyperadregenic POTS, but he said he is using the Coreg as a type of diagnostic tool. All it is doing so far is dropping my BP lower than normal! The episodes of presyncope and actual syncope were increasing even before (continued)
lawgrad06 7 months ago
@DysautonomiaMD I started the Coreg, so I don't know if it's fair to blame the increasing frequency on the Coreg. I don't know what's what anymore! I see Dr. Grubb's NP next month, so hopefully they can confirm a diagnosis and get a responsive treatment plan in place. I don't know if you've ever met Dr. Grubb and Bev, but they are absolutely AMAZING!!! How are things going for you? By the way, I came across your name on Facebook-we both belong to some of the dysautonomia (continued)
lawgrad06 7 months ago
@DysautonomiaMD groups and pages--imagine that :-) Anyway, I sent you a friend request, and I hope that's okay. If not, feel free to deny it. My name is Jenn F. on Facebook (I won't put my full last name on here for obvious reasons! Take care and I will talk to you soon!
lawgrad06 7 months ago
@DysautonomiaMD At this point, we just know that I for sure have frequent and highly symptomatic ventricular bigeminy and couplets, NSVT, MVP with regurgitation, among other things. My first EP at UTMC said that bigeminy can cause lightheadedness, but not near-syncope and syncope. Before I have one of these episodes, every single time my heart speeds up and it goes into an abnormal rhythm. I always assumed it was the bigeminy throwing me out, but they are thinking (continued(
lawgrad06 9 months ago
@DysautonomiaMD that there is actually something else going on. They are talking about putting in an implantable loop recordeo ger underneath my skin to get the most accurate data possible. My old EP was convinced that most of it was ANS related as opposed to a malfunction in the electrical system of my heart. But then he did a TTT and I fainted, not due to blood pressure or heart rate, but due to "multifocal bigeminy and paired" beats. Original EP wouldn't believe that it was an (continued)
lawgrad06 9 months ago
@DysautonomiaMD abnormal rh hatythm throwing me out until it happened during the TTT. To make a long story short, that is when he decided that there was something else going on in addition to what they already knew and he sent me on to Dr. Grubb. Based on my symptoms and the test results, I would have to say it is a combination of an electrical problem and some sort of ANS dysfunction. By the way, it is great to meet you too! Yes, it is nice to find another professional on here!
lawgrad06 9 months ago