lotsicker Posted April 9, 2010 Report Share Posted April 9, 2010 Hello,I have been able to confirm that I do not have POTS. My symptoms have gotten better over the last year or so but, not gone. My new cardiologist beleives I have a different form of dysautonomia or a very RARE cardiomyopathy. What I would like to confirm with everyone is this:Do you have symptoms regardless of treatment ie: staying hydrated, getting plenty of rest, eating well?I have found that I only have symptoms (palpatations, dizziness, fatigue, various heart pain) when I have neglected the basics mentioned above, drank alcohol or tried to exercise.I would like to eliminate dsyautonomia but, need more info from you guys!THANK YOU! Quote Link to comment Share on other sites More sharing options...
Simmy Posted April 9, 2010 Report Share Posted April 9, 2010 I look at it in two ways. If I'm doing all the basics you mentioned, and the weather is cool and dry, overall I feel better... but the weakest link is my posture - even on my best days I can only stand for five or ten minutes before I need to squat or lie down. However, if the 'basics' are there and I'm horizontal I feel great.On the other hand, on bad days, even doing nothing and lying on the couch the palps are stronger, chest is heavier, brain fog plays games with me and standing for more than a minute tightens the brain clamp. Quote Link to comment Share on other sites More sharing options...
lotsicker Posted April 9, 2010 Author Report Share Posted April 9, 2010 I look at it in two ways. If I'm doing all the basics you mentioned, and the weather is cool and dry, overall I feel better... but the weakest link is my posture - even on my best days I can only stand for five or ten minutes before I need to squat or lie down. However, if the 'basics' are there and I'm horizontal I feel great.On the other hand, on bad days, even doing nothing and lying on the couch the palps are stronger, chest is heavier, brain fog plays games with me and standing for more than a minute tightens the brain clamp.hmmm...This is where I question what is going on. I truly believe I have a weakend heart muscle as my symptoms match that of congestive heart failure rather than the consistency of a true dysautonomia issue. I have 24/7 symptoms when I have a cold or flu and sometimes wake in the middle of the night with a rapid HR if I have over done it the day before. Quote Link to comment Share on other sites More sharing options...
Simmy Posted April 9, 2010 Report Share Posted April 9, 2010 What role does posture play in how you feel? Are your symptoms always worse standing and better lying down? Quote Link to comment Share on other sites More sharing options...
lotsicker Posted April 9, 2010 Author Report Share Posted April 9, 2010 What role does posture play in how you feel? Are your symptoms always worse standing and better lying down?Yes I always get relief when sitting or lying down except when I have an illness. I do have the classic 69 lying, 99 sitting, 108 standing but, only when I am having stress related symptoms. I can have plenty of days that the only time I have HR issues is when I try to lift wieghts at the gym or walk up hill. Quote Link to comment Share on other sites More sharing options...
mvdula Posted April 9, 2010 Report Share Posted April 9, 2010 Lying down does not relieve my symptoms. In fact, walking around often helps. I am unable to do exertion though. Dizziness is not one of my symptoms though. Quote Link to comment Share on other sites More sharing options...
Simmy Posted April 9, 2010 Report Share Posted April 9, 2010 Well Kimi, other than from certain meds like Midodrine and others, I'm not familiar with any cases where someone with POTS stands and DOESN'T have a substantial increase in heart rate. At my very best it's still at least >25, at worst >80, and that's with meds.Unfortunately there are many fine lines separating this syndrome and other illnesses, and often they intersect.Have you confirmed your heart rate fluctuations, like with a heart rate monitor? That's an essential tool for me. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 10, 2010 Report Share Posted April 10, 2010 Hi Kimi~Has your cardiologist done an echocardiogram of your heart yet? I had cardiomyopathy and was in heart failure before I was diagnosed with dysautonomia about 2 years later. I would definitely have the echo done, which should show any abnormalities with your heart, including any cardiomyopathies. If they still are questioning your heart, an angiogram should probably be done to finalize any heart issues. I got ill after a viral infection.Unfortunately, only your doctor can tell you if you have a form of dysautonomia. I went to a neurologist after my initial TTT was positive. Perhaps that's an option for you? Also, it took Mayo Clinic to finally figure out just what my problems were....I know you're in AZ. Have you tried Mayo in Scottsdale?Wishing you answers, and take care!Jana Quote Link to comment Share on other sites More sharing options...
lotsicker Posted April 10, 2010 Author Report Share Posted April 10, 2010 Thank you all so much for answering. I have had a TTT that proved negative, I actually felt better when they pushed the meds that are suppose to make you pass out. Though I did have heart fluctuations, they were not consistent with POTS. I had an Ehco and several EKGs, 24 halter, etc. done over a year ago that were all abnormal but, I was given beta blockers to help the symptoms and sent on my way. I am now with a new Doctor who studied with the MAYO, Dr Burke. I have had one visit with him and he believes I have a different form of dysautonomia or a very rare Herpes Virus that has attacked my heart and left it damaged. He is repeating the Echo and halter, doing several blood tests to compare to the old ones. I do not want to be in either condition but, I think the dysautonomia seems very hard to live with and treat. God bless all of you for going through this daily! Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted April 10, 2010 Report Share Posted April 10, 2010 I always have symptoms. They can be excruciating or, on good days, just bad. Sometimes I can't lie down because of symptoms. When I'm sick enough, lying down can be worse than standing, when I'm medium sick, it does nothing, and when I am comparatively better, it helps. Which means you can't necessarily figure anything out from that.I remember describing how I felt to someone with congestive heart failure when I had no idea what I had and she told me she had the same problems with congestive heart failure.I've also seen someone with problems more typical of dysautonomias and hearing both that the person had congestive heart failure and also not -- from different doctors. So you might want to think of them as not completely distinct entities. You might end up (not by choice necessarily but if one doctor says you have one or the other) seeing which treatments work and which don't because your treatment in any case is going to depend on what makes you better and your labwork as normal as possible. But if they say you have one and the treatment seems to make you worse, you might need to find another doctor. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 10, 2010 Report Share Posted April 10, 2010 Hi Kimi~Where is this Dr Burke located? I'm in Tucson, and I think you're in Phoenix, is that right? I may want to try to see him if possible.Thanks!Jana Quote Link to comment Share on other sites More sharing options...
lotsicker Posted April 10, 2010 Author Report Share Posted April 10, 2010 Hi Kimi~Where is this Dr Burke located? I'm in Tucson, and I think you're in Phoenix, is that right? I may want to try to see him if possible.Thanks!JanaDr Burke is with Scottsdale Cardiovascular Center 3099 E Earl Dr. He seems VERY informed when it comes to dysautonomia, I would defiantly get in to see him if you are looking for a good cardio guy. Quote Link to comment Share on other sites More sharing options...
lieze Posted April 10, 2010 Report Share Posted April 10, 2010 I get that congestive heart failure feeling but that's all it is.I've had two echo's and even in my worst I never went into heart failure.My heart just sometimes feels funky. Like it's big and bloated and just weird.So many weird sensations with this!Also on a day where I get that feeling an hour later I can snap out of it and feel just fine.The cardiologist just shook his head at me and said this isn't your heart.???lieze Quote Link to comment Share on other sites More sharing options...
Simmy Posted April 10, 2010 Report Share Posted April 10, 2010 Me too - skipped beats, pounding, tachy, brady, slow 'swooshes', stinging, sometimes it feels like it's squeezing through my ribs... the average person would have no doubt they're having a heart attack. To me this is all just my new normal. Thankfully, I have a strong heart capable of handling all that it is put through on a daily basis. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 11, 2010 Report Share Posted April 11, 2010 Thank you! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 11, 2010 Report Share Posted April 11, 2010 Thank you! Quote Link to comment Share on other sites More sharing options...
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