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Brokenlittleteapot

New here. Just needed to vent.

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My life turned upside down within two months. I developed random numbness in my left arm, tachycardia, and chest tightness and ever since have been terrified of a heart attack. After an extensive hospital stay I was diagnosed with POTS and IST as well as Dysautonomia. I've had 3 echos, more than 10 ekg, atleast 15 troponin tests, a nuclear medicine stress test, a TTT, numerous chest x-rays, and finally a CT coronary angiogram. And yet here I am, still terrified that something was missed and that I'm on the verge of a heart attack.

my symptoms during these attacks are; 

numbness in left arm/burning pain goes to neck

burning pain in chest

feeling of doom

tachycardia

PVCs

other times; 

weakness 

chest tightness

tachycardia even when lying down

barely able to move from exhaustion 

anxiety

migranes

vision changes such as blurry vision and vertigo 

 

is it possible this is just dysautonomia? Is it possible something was missed from all of those heart tests? I feel like I'm going to die every single night and I'm suffering. This is so dibilitating and I'm so heartbroken, please help.

 

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That pretty much sums up what my symptoms and experience was like too, except maybe the pain that went up all the way to the neck.  I would get tingly up my arm though.  POTS sucks.  I dont know if this will help, but i posted my experience and learnings here: http://hyperpots.blogspot.com/

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Bless you for that link. It's like reading my own story. I swear I woke up one day and this was my life. I can barely move without losing all of my energy and becoming tacky, even sitting upright!! I'm in hospital currently while they Guinea Pig medications on me.

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Yeah, my BP was all over the place.  I honestly thought I was about to die at any moment pretty much every day.  I am mostly better now though.

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I am so sorry you had to go through that! I'm going through the same. I have to keep reminding myself that I've had two nationally accredited cardiologists tell me that this isn't cardiac and that I have a fantastic heart, because sometimes I get so scared. It causes me a ton of anxiety too, I'm assuming that's normal. I hate the vision changes, and I also hate the light headedness and chest tightness the most.

 

I am Allie by the way, it is nice to meet you.

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I always get the chest pain accompanied by pain up into the neck as well as palpitations. Had everything on the face of the earth done to check - all is well anatomically. Yet HR and BP keep playing with each other. You know what that is called? DYSAUTONOMIA! All of your symptoms - along with the negative tests - seem to point that way. The only thing that stumps me is the IST diagnosis. That oftn is used as a diagnosis when they do not know anything else but I have not heard that being used in addition to dysautonomia. 

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1 hour ago, Brokenlittleteapot said:

is it possible this is just dysautonomia? Is it possible something was missed from all of those heart tests? I feel like I'm going to die every single night and I'm suffering. This is so dibilitating and I'm so heartbroken, please help.

 

You got a diagnosis in two months? Some of us waited years and don't have nationally accredited cardiologists telling us we have fantastic hearts. 

Now you start to get better. Your doctors will set you up with drugs, exercise, nutrition, cognitive therapy, etc. It can seem difficult at first to learn how to manage your life again but you will do it, slowly but surely, and you will again be able to do many of the things you did before you fell ill.

 

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3 hours ago, WinterSown said:

You got a diagnosis in two months? Some of us waited years and don't have nationally accredited cardiologists telling us we have fantastic hearts. 

Now you start to get better. Your doctors will set you up with drugs, exercise, nutrition, cognitive therapy, etc. It can seem difficult at first to learn how to manage your life again but you will do it, slowly but surely, and you will again be able to do many of the things you did before you fell ill.

 

I wasn't trying to complain, I was just already disabled before this so I was really feeling down. I know it took my friend five years to get diagnosed. I was just lucky because she set me up with a cardiologist who studied under "dr pots" so he knows about pots. Did anyone else black out during their TTT?

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5 hours ago, Pistol said:

I always get the chest pain accompanied by pain up into the neck as well as palpitations. Had everything on the face of the earth done to check - all is well anatomically. Yet HR and BP keep playing with each other. You know what that is called? DYSAUTONOMIA! All of your symptoms - along with the negative tests - seem to point that way. The only thing that stumps me is the IST diagnosis. That oftn is used as a diagnosis when they do not know anything else but I have not heard that being used in addition to dysautonomia. 

Thank you, I needed to hear this. And the IST confused me too, but apparently it's common in dysautonomia and can go hand in hand with pots.

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7 hours ago, Brokenlittleteapot said:

I wasn't trying to complain, I was just already disabled before this so I was really feeling down. I know it took my friend five years to get diagnosed. I was just lucky because she set me up with a cardiologist who studied under "dr pots" so he knows about pots. Did anyone else black out during their TTT?

Of course not, I'm just thrilled for you to have gotten into care so quickly. Fortunately, there are more people getting rapid care like you everyday. It's something all the .orgs have worked towards and seeing it start to happen is great. More doctors are learning how to help. Who is Dr POTS?

 

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2 hours ago, WinterSown said:

Of course not, I'm just thrilled for you to have gotten into care so quickly. Fortunately, there are more people getting rapid care like you everyday. It's something all the .orgs have worked towards and seeing it start to happen is great. More doctors are learning how to help. Who is Dr POTS?

 

I believe Dr POTS is the one who helped discover and diagnose POTS first. 

 

How long have you been diagnosed? Did yours happen to you all of the sudden like mine did? If I may ask

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11 hours ago, Brokenlittleteapot said:

Did anyone else black out during their TTT?

Yes, I did. I was told when you black out on the TTT you also have Neurocardiogenic Syncope. Fun, fun, fun.... 

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Neurocardiogenic syncope is a sudden drop in HR & BP causing you to faint. it’s weird. sometimes stress does it to people. sometimes it’s just standing too long. it happens to me when I see blood lol I’m such a baby. 

i don’t want to freak you out anymore than you already are, but have they done any MRIs? 

i hope you find some relief soon. 

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On 5/30/2018 at 10:51 AM, Brokenlittleteapot said:

I believe Dr POTS is the one who helped discover and diagnose POTS first. 

 

How long have you been diagnosed? Did yours happen to you all of the sudden like mine did? If I may ask

I was diagnosed fifteen months ago. I started feeling worse and worse over the course of a summer four years back, my BP was insane but I was obese and it was reasonable to think the weight was a cause. Then I lost my appetite but didn't realize it until I got a fissure. During that time I started getting odd feelings in my limbs and lost my ability to stand or walk for more than just a few minutes without extra pain in the fissure--they're bad enough but this was Jack the Ripper's revenge. I needed surgery to close it because it never healed. Now we know it's because of poor circulation and perfusion. I don't remember when the fog crept in but I did drive into a bus two summers back which sent me to my cardiologist who sent me to the neuro and EP.  Along with my primary and an amazing DPT they are my core team and it's been a complete heart, mind, body and soul approach that has lifted me up.

 

 

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@Brokenlittleteapot I was diagnosed with NCS ( neurocardiogenic syncope ) prior to my POTS diagnosis. On my first TTT they gave me nitroglycerin to mimic the effects of prolonged standing and my HR rose, then plummeted and I passed out. At that time ( back in 2009, mind you ) I was told that I have " the common faint ". This was from an experienced and distinguished cardiologist at a major hospital in my state. It was much later, from a world - renowned autonomic specialist - that I was properly diagnosed with hyper-adrenergic POTS. 

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Yes - I feel often like the walls are moving and I loose my balance and sometimes I run into things on my left because of this balance disturbance

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57 minutes ago, Brokenlittleteapot said:

Does anyone else experience "moving walls" or vision disturbances? 

Big part of vertigo, I go to PT to help with symptoms.

 

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4 hours ago, Pistol said:

@Brokenlittleteapot I was diagnosed with NCS ( neurocardiogenic syncope ) prior to my POTS diagnosis. On my first TTT they gave me nitroglycerin to mimic the effects of prolonged standing and my HR rose, then plummeted and I passed out. At that time ( back in 2009, mind you ) I was told that I have " the common faint ". This was from an experienced and distinguished cardiologist at a major hospital in my state. It was much later, from a world - renowned autonomic specialist - that I was properly diagnosed with hyper-adrenergic POTS. 

The EXACT same thing happened to me! The nitro glycerine and everything.

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If your diagnosis is just POTS make sure to get a full heart work up. You may have had one already.  For most of us the workup is clear and there is no reason to worry about having a heart attack.  You’ll get used to the strange sensations soon enough.  

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@Brokenlittleteapot - I do not know if that is something you might experience but after years of unexplained severe chest pains with ALL of the work-up I had a heart cath in January. It was normal ( thank god ) but the cardiologist diagnosed me with prinz-metal-angina, that means the chest pains are caused by spasms in the coronary arteries. I am now on a nitropatch and it helps mostly. 

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I have pretty much all the symptoms you describe, sudden onset here as well. I too feel like I am dying on an almost daily basis, but I'm still here after nearly 4 years. Things that gave me temporary relief have been licorice root capsules and diazepam. 

I am so glad you have good doctors. It took nearly 3 years for me to get a formal diagnosis of POTS, and I still have no treatment or specialist care (I live in Scotland, UK).

I hope you manage to find something that makes life more bearable soon. 

B x

 

 

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On ‎5‎/‎30‎/‎2018 at 12:18 PM, Pistol said:

@Brokenlittleteapot I was diagnosed with NCS ( neurocardiogenic syncope ) prior to my POTS diagnosis. On my first TTT they gave me nitroglycerin to mimic the effects of prolonged standing and my HR rose, then plummeted and I passed out. At that time ( back in 2009, mind you ) I was told that I have " the common faint ". This was from an experienced and distinguished cardiologist at a major hospital in my state. It was much later, from a world - renowned autonomic specialist - that I was properly diagnosed with hyper-adrenergic POTS. 

Pistol, I didn't know that Hyper-POTS can cause you to pass out. I am pretty sure that is what I have. Today my HR was back up to 105 when standing and 80 when sitting. Sitting BP was 128/85, while my standing BP was 133/110. It is always like this in the AM before I pop my Lisinopril and Clonidine. If I wait a few more hours, HR will go higher and standing BP will be 140/150 over 120. The small number being that high is hypertensive crisis from what I've read, but it will go down to the high 90's once I sit back down again, so I just sit to control that until the meds kick in. Crazy and I think I had this for years because I could not tolerate standing. I felt like death with headaches and dizziness. I want to do a tilt table test, but being on meds, they will not see how bad it is. Before meds HR used to reach 150 from just grating some cheese by hand and BP 180/130 at times, but only when standing. I will post some of the pictures I have saved from my BP monitor. 

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