First topic, story about my symptoms and possible autonomic dysfunction

[Pietro]

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?

[Pistol]

@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!!!!

[yogini]

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.

[Myra]

Hi there! I read you’re story and it sounds just like mines did you end up having dysautonomia? Im at a lost on what to do I’ve been like this for 7 years and it has robbed me my life.

[AngieP]

Hello Pietro,

Your story mirrors mine. I'm sorry you're going through a tough time and still haven't found a doctor to support you.

I'm now 40 years-old and my POTS symptoms appeared in my late 20s. Initially I thought I was having panic attacks, but the palpitations, chest pain and debilitating fatigue made me suspect something else was going on. Like you, I used to be an avid runner and on some days I could barely walk to the local shops. I felt so frail. 

I wound up in emergency rooms and saw three different cardiologists, one who wanted to do an ablation on me. I said 'no' as I didn't feel he was listening to all my symptoms. Then, I got incredibly lucky... during one hospital visit, a senior cardiologist witnessed me having a POTS attack and he helped me regain my life. 

Here is what has worked for me...

- Daily beta blocker (Metoprolol)
- Going gluten free (I was having a lot of abdominal pain too)
- Listening to my body and resting when I need to
- Gentle exercise (I still can't get my heart rate up as it brings on an attack)

The good news is that after a long period of terrible health, I started to feel strong again and live a full life. I'm now a mum to a very active toddler. 

In saying that, I still have POTS flare ups from time to time. I'm in the middle of one now. I know it will pass, but I must admit I get anxiety when these flare ups occur. 

I hope you find a doctor that listens to you.

Take care

[Pistol]

@AngieP - I am happy to hear you are able to manage your POTS symptoms! Good job! I developed severe POTS after the birth of my daughter ( now 17 ) but didnt get diagnosed for 6 years. I had just compensated for the symptoms and contributed everything to post-partum stress. When she was 4 I started to faint all over and eventually had to stop working. That you have found a way to live with the symptoms is wonderful! 

22 hours ago, AngieP said:

I know it will pass, but I must admit I get anxiety when these flare ups occur. 

That is completely understandable and normal! Having an overreactive SNS causes scary symptoms and they will cause anxiety. Even I - a "POTS veteran" - still get scared when I flare, there is nothing we can do about it, except remind ourselves that it ALWAYS gets better again! 

[AngieP]

Hi @Pistol , thank you so much for your message.

I was chatting with my husband this morning about how to best manage my anxiety. 

During this recent flare up, I've become very anxious about having a POTS attack when I'm alone with my 18 month old. 

Can I ask how you coped with caring for your four year old? I don't faint, but I get a cascade of symptoms (dizziness, nausea, chest pain, tachycardia, adrenaline surge). The POTS attacks are very different from the panic attacks (which I've also experienced). It feels like my body is melting down.

I'm lucky that I have plenty of family members who will drop everything and drive over to my house to help me, but for those 20 to 30 minutes alone with my son, I'm terrified. 

Thank you again for reaching out. 

Angie

[Pistol]

7 hours ago, AngieP said:

Can I ask how you coped with caring for your four year old?

Oh Angie, that's a tough one! I remember almost fainting once and while lying on the floor I told my daughter:" If mommy falls asleep on the floor call 911". Thankfully I pulled through and she didnt have to. But after that episode we made sure that my husband was with me when she was home and during the day we had her in daycare with a trusted person. Once she went to Preschool things were a bit easier and I could rest all day until she came home. So I am perfectly aware of your concerns! The best thing is to have someone readily available to fill in when you feel bad, and that can be from one minute to the next. Also - for me it was tricky to carry her around because I once fainted while holding her! 

There are so many scenarios to consider that you could drive yourself crazy thinking about it! The most important thing is both of your safety. I played a lot in bed with her, and had her ( when she was younger ) in a playpen when I was alone with her. Since you had improved once before this flare may be over soon too. Are you nursing? I know that can cause bad flares. I know someone who was essentially bedridden from POTS and as soon as she stopped nursing she completely improved!

[AngieP]

Thank you for sharing your experience with me @Pistol

My son's safety is paramount to me and I recently spent a small fortune on child proofing my home. This has made me feel a bit more relaxed, as there is a safe space for him to play.

I think I've just lost a bit of confidence following the last couple of attacks, but like you said, this flare up will end soon enough.  

I nursed my son until he was 15 months old and I must admit it took its toll on me. I lost a lot of weight and I'm working on getting strong again. 

Once again thank you for your support. It's wonderful to know that you have a 17 year old daughter and managed to navigate parenthood despite having severe POTS. I'm going to stay positive and get a grip of my anxiety because I want to enjoy motherhood too. 

[Pistol]

4 minutes ago, AngieP said:

I'm going to stay positive and get a grip of my anxiety because I want to enjoy motherhood too. 

That is a good goal to have. Sadly I could not really enjoy her childhood, because I had no energy to play much with her. Tea parties and dress up were torture for me! She did a lot of dancing for us, so I could at least be an audience! Of course boys play different, so there will be other trials for you. However - there are so many precious memories, and she grew up to be a fine young lady, despite having a "boring" Mom! In the end what matters is that they know they are loved, and that can be done even with severe POTS!

I wish you well and that the flare will be over soon. Hang in there!