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First topic, story about my symptoms and possible autonomic dysfunction


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Hi everybody! First time poster here after finding this forum. I would like to share my story so that I can get some opinions and hopefully some support.

 

So I've been suffering from what doctors just dismiss as panic disorder and anxiety for several years now. It all started about 8 years ago when I started having a very fast heart rate out of nowhere while watching a movie. The sensation was unlike anything I've felt before. I stood up and felt very dizzy, my heart raced even more. I thought I was about to pass out at any moment.  I ended up going to the hospital where I had an EKG and it was normal, besides the fact that my heart rate was like 130bmp.

 

Ever since that day, I've never felt "normal" again. I feel like I'm hyper sensitive to adrenaline or something. Every single thing that's supposed to slightly raise your heart rate, sends mine into waaay too high levels. Mild exertion, strong emotions, hot weather, meals, and merely even standing up senda my heart rate easily into 120bmp or above. I've stopped running, which has always been a passion of mine, because every time I do even a little bit of exercise, I feel like I'm gonna pass out. From 2012 to now, I've had countless hospital trips and countless more tests. I've had numerous complete blood exams, EKGs, Echos, 24h Holter, Stress Test, chest x-ray, abdomen ultrasound, thyroid ultrasound etc. Nothing abnormal seems to pop up aside from the constant fast heart. All cardiologists I've seen in these past few years are completely unconcerned about my symptoms and attributed them to anxiety.

 

The thing is, I don't think it's just anxiety. Rather, I think my anxious feelings are a symptom and not the problem itself. As I said, my symptoms have especific triggers that have nothing to do with stressfull situations (meals, hot weather, mild exertion, standing, etc). I also feel other non-cardiac symptoms like headaches/migraines, fatigue, diffuse muscle aches, mildly dilated pupils, frequent urination, occasional constipation, mild temperatute dysregulation, and others.

 

This year I started reading into Dysautonomia disorders and it seems to fit soooo much more into my symptoms rather than an anxiety disorder. I've specifically read into POTS and Inappropriate Sinus Tachycardia as the two that most seem to fit my symptoms. My only doubt about POTS is that my heart rate is high even when I'm lying down and not only when I stand up. My heart while calmly lying down can range between 85-100, where most normal people are between 60-70. And like I said, every single thing raíses my heart rate, even just shifting positions in my bed.

 

Needless to say, all these symptoms have taken a big toll on my well being. I don't feel healthy at all. I feel very frail, besides being relatively young (27y). I feel like these daily symptoms have been robbing me of my life and the various doctors I've seen during these years just blush me off as an anxious individual and prescribe me benzos and SSRI's, which don't help my symptoms much. I've recently went to a neurologist and got a Tilt Table Test and Brain MRI, in hopes of finding some answers.

 

In the meanwhile, I live my life being scared of my symptoms. The cardiac symptoms in particular are very distressing and always gets me worried about having some cardiovascular events because of the constant high heart rate and palpitations.

 

So that's pretty much my story. Anyone on a similar boat and with some insight that could be offered?

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@Pietro - yes, unfortunately mostly of us have been in your boat. Your symptoms do sound very much like dysautonomia. What I did is read up ( which you have already done ), print it out, bring it to your PCP and ask for a TTT ( typically the first step in diagnosis ). Many cardiologists do this, but they may not have the expertise to trat POTS. If your diagnosis is POTS I would ask for a referral to a specialist ( see our list here ) https://www.dinet.org/physicians/

You can find more info here  https://www.dinet.org/info/pots/

Also - the book "Teh Dysautonomia Project" is very helpful, it is written BY physcians abd patients FOR physicians and patients, you can find it on Amazon. 

In the mean time increasing water and salt intake, wearing compression hose ( 30 - 40 mm pressure recommended ), exercises to tolerance and avoiding prolonged standing can help. Good Luck!!!!

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21 hours ago, Pietro said:

Hi everybody! First time poster here after finding this forum. I would like to share my story so that I can get some opinions and hopefully some support.

 

So I've been suffering from what doctors just dismiss as panic disorder and anxiety for several years now. It all started about 8 years ago when I started having a very fast heart rate out of nowhere while watching a movie. The sensation was unlike anything I've felt before. I stood up and felt very dizzy, my heart raced even more. I thought I was about to pass out at any moment.  I ended up going to the hospital where I had an EKG and it was normal, besides the fact that my heart rate was like 130bmp.

 

Ever since that day, I've never felt "normal" again. I feel like I'm hyper sensitive to adrenaline or something. Every single thing that's supposed to slightly raise your heart rate, sends mine into waaay too high levels. Mild exertion, strong emotions, hot weather, meals, and merely even standing up senda my heart rate easily into 120bmp or above. I've stopped running, which has always been a passion of mine, because every time I do even a little bit of exercise, I feel like I'm gonna pass out. From 2012 to now, I've had countless hospital trips and countless more tests. I've had numerous complete blood exams, EKGs, Echos, 24h Holter, Stress Test, chest x-ray, abdomen ultrasound, thyroid ultrasound etc. Nothing abnormal seems to pop up aside from the constant fast heart. All cardiologists I've seen in these past few years are completely unconcerned about my symptoms and attributed them to anxiety.

 

The thing is, I don't think it's just anxiety. Rather, I think my anxious feelings are a symptom and not the problem itself. As I said, my symptoms have especific triggers that have nothing to do with stressfull situations (meals, hot weather, mild exertion, standing, etc). I also feel other non-cardiac symptoms like headaches/migraines, fatigue, diffuse muscle aches, mildly dilated pupils, frequent urination, occasional constipation, mild temperatute dysregulation, and others.

 

This year I started reading into Dysautonomia disorders and it seems to fit soooo much more into my symptoms rather than an anxiety disorder. I've specifically read into POTS and Inappropriate Sinus Tachycardia as the two that most seem to fit my symptoms. My only doubt about POTS is that my heart rate is high even when I'm lying down and not only when I stand up. My heart while calmly lying down can range between 85-100, where most normal people are between 60-70. And like I said, every single thing raíses my heart rate, even just shifting positions in my bed.

 

Needless to say, all these symptoms have taken a big toll on my well being. I don't feel healthy at all. I feel very frail, besides being relatively young (27y). I feel like these daily symptoms have been robbing me of my life and the various doctors I've seen during these years just blush me off as an anxious individual and prescribe me benzos and SSRI's, which don't help my symptoms much. I've recently went to a neurologist and got a Tilt Table Test and Brain MRI, in hopes of finding some answers.

 

In the meanwhile, I live my life being scared of my symptoms. The cardiac symptoms in particular are very distressing and always gets me worried about having some cardiovascular events because of the constant high heart rate and palpitations.

 

So that's pretty much my story. Anyone on a similar boat and with some insight that could be offered?

A lot of people post on the forum.  Some don't sound like dysautonomia (or it's unclear) but your story very much sounds like it to me.  I am sorry that you have been dealing with this for so long, undiagnosed.  Do you have access to a dysautonomia specialist in your area?  I would see if you can get scheduled for a tilt table test.  Also, you can do a poor man's tilt at home where you measure your pulse and BP sitting and standing.  You can google how best to do this.  If you try this a few times and keep track of your HR and BP at home you will get a sense of whether you have dysautonomia.  Then (depending on your symptoms) with the assistance of your doctor you can figure out the right treatment.  For example, if you have low blood pressure, fluid and salt loading can be of help.  Good luck and keep us posted on your journey.

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