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dysautonomia?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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dysautonomia?

Hello. I am really hoping someone or a doctor can provide feedback. I am experiencing some terrifying things and am at a loss. I have had several episodes of what my cardio would call inappropriate sinus tachycardia. I went to ER for a pulse of 150 that wouldn't come down. They sent me home to take me Toprolol ER. I am not on Lopressor 25 mg one and a half times a day, seems to be helping with the heart racing and pounding. But I am getting lot's of other symptoms that is really making me think I have dysautonomia. I have constant fatigue, times were it feels like I have veritigo, I have an intollerance to heat to where I cannot even take warm showers anymore. I am not crazy, I had 2 pyschologist tell me they can find no reason for my anxiety, I have had 4 cardios say my heart is just fine and cannot explain the tacycardia or palpatations (pvc's, pacs). Does this sound like dysautonomia to anyone? I have attached one of my older posts below. Any feedback would be greatly appeciated. Thanks!

Older Post:
I would really like a doctor to respond to this question. All over the internet you will find thousands of posts from people posing questions with the same symptoms. What on earth is causing this heart pounding?? If you read my previous posts over the past 2 years, you will find out that I had my first panic attack after trying marijuana for the first time, I was dumb, I know this, but now I am just seeking help and answers for all the others out there like me. Ever since that first panic attack, where I thought my heart was going to explode, I have had constant heart palptations and repeart panic attacks, and just overall high anxiety. However, with me, most of my anxiety starts with the heart pounding. The best way I could describe it to someone who has never had it before is this. If you lie down and get comfortable, and get up to fast, there is a brief moment where you can feel the heart beat very forcefully, and feel lightheaded, almost faintish. This is the type of heart pounding I feel constantly. I have seen 4 cardiologists, ER doctors, primary care physicians, electrophysiologists, it's insane. I feel insane. All heart tests came back normal, except IRBBB, which is benign anyways. I am currently on metoprolol 12.5mg twice a day to help with the heart pounding/anxiety. However, like those on SSRI's, still have the symptoms. From my knowledge and experience, I believe it is a combination of to much adrenaline, and or anxiety stimulating the adrenaline. I have seen multiple CBT's, counselors, and done yoga, P90X, everything I can think of, and yes, I eat healthy. It's sad so many of us are suffering with so little answers. Perhaps there never will be an answer, and SSRI's and beta blockers will continue to be our temporary assistant with these symptoms. I really emplore any doctors to give their ideas or input, as well as those suffering. Thanks. . .
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Hi.  My name is Rhonda.  I was diagnosed with Hyperadrenergic POTS in 2008.  Whenever I move my heart rate and blood pressure goes up.  My heart rate when sitting will stay at 85-90, when I stand it raises to 130 and within 15 minutes of moving my heart rate is between 150-165.  My blood pressure goes to approximately 145/99 while standing, when I am sitting it stays at 117/78.  My heart rate will go as high as 230 beats a minute and my blood pressure will go as high as 198/156 when I am really bad.  When this happens I have severe tremors that make me look like I am having a seizure.   This all started after I was sick with a flu.  I picked up a virus, that attacked the HUB of my autonomic nervous system.  Over the past 5 years, I have done fairly well until February 18th, 2013.  Then I got a virual flu which reactivated my POTS virus and set everything off again.   I am just now getting back on my feet again.  Have you ever been tested for POTS?  Is your tachycardia present with movement?  If so, you may have POTS.  There are different kinds of POTS, so you need to determine what kind you have if you are diagnosed.  The best way to be tested is with a tilt table test.  They can also do orthostatic blood pressure and heart rates with adrenal testing.  I hope you find out what is going on.  But the one thing I encourage you is don't give up.  YOU know your body better than anyone else and if I had listened to the cardiologist that told me I was having panic attacks, I would be dead by now.  Fortunately I have wonderful primary care physician, who knew that panic attacks do not happen 24/7 and sent me for a second opinion.  I found an awesome doctor in Toledo that specializes in Hyperadrenergic POTS.   He is one of the top four in the field and has a heart of gold.  I wish you the best of luck.  If I can be of any help please let me know.
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I have seen 4 cardiologists, multiple ER's. Only thing that's been confirmed is episodes of Inappropriate Sinus Tachycardia, and PVCs/PACs. When I am sitting down my pulse rate is normal, but if I stand it will jump to well over 110 bpm. I have had multiple echoes, stress echoes, sonograms, holters galore, everything seemed to be ok. However, when I get these runs of pvcs when I fear is v-tach, I am not being recorded. I also tend to have constant stiff neck and lightheadedness. It's very frustrating. Thank you for your input.
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