Potential Pots or other nervous system disorder

[HGSE]

Hello, I have come across this website and found many posts describing some of my exact symptoms. 

 

It all started for me back in July of this year. I just stood up from a sitting position and I got a terrible and sharp pain in my lower right chest that brought with it wheezing and really bad shortness of breath. My heart was also beating really fast and with force.

 

I did not go to the emergency room as I'd been getting similar episodes in the past that would go away on their own, but not as painful or scary. I thought it was allergies that were causing this so I paid no attention. 

 

Two days after that happened. I was just sitting using my computer when I noticed I was extremely lightheaded and weak with a pressure feeling in my chest. I took my blood pressure and it showed as high with a fast pulse of 140s. This made me go to the emergency room where I told them I felt pressure in my chest and explained what happen two days prior. They told me it was probably Gerd related with some anxiety after blood test, ekg, and x-ray showed nothing. 

 

From July to October I visited the Er more than ten times for an allergic reaction, shortness of breath, bad light-headedness and a racing heart. In early October, I got a bad sore throat and I also had trouble breathing with a lot of wheezing so I go to the Er again. This time they tell me my blood white cells were off and they suspected an upper respiratory infection.  I went home, but the next night I got worse wheezing that my inhailer was not helping with. I also noticed I had pain in my lower right chest. The same pain I had back in July.  so again I go to the Er where I get a breathing treatment and am about to be sent home. The doctor was dismissing my chest pain so I started over exaggerating the pain so they took me serious.

 

They finally order a CT scan that showed pneumomediastinum (air in the chest cavity) and a small patch of what they thought was pneumonia. I get admitted and stay there for three days. While at the hospital, I get IV antibiotics as well as prednisone. I get a swallow test and all is clear. The whole time I was there I am on a heart monitor because of an erratic heart rate. Small movement while laying down would make it shoot up from 70s and 80s to 120s. When I stood up it was even higher. The doctors were puzzled as to why this was happening and basically told me they didn't know what was going on. The only explanation was for the air in my chest. They thought a ruptured bleb in my lung caused it.

 

I ended up signing a paper and leaving against medical advice.  I went straight to stanford hospital emergency still wearing the gown from the last hospital. When they took my vitals at stanford, my heart rate was 190. After some breathing it calmed down. I got another Ct scan here that showed the same thing(air in the chest) but this time they said the area in my lung that the last hospital thought was pneumonia was more in line with a partially collapsed lung.

 

I end up being admitted to stanford and stayed there for another three days. I was given more IV antibiotics and breathing treatments. I also saw a cardiologist who saw me for the erratic heart rate. On the last day I am cleared to go home with a follow-up and a 14 day holter monitor. 

 

Ever since then I have been getting really odd and scary episodes that I can only describe as a feeling like I am drowning. I start feeling short of breath like no air is going in, my heart starts going fast and I feel whole body weakness. I also get these rushes that feel like cold gusts of wind are hitting me. My heart also shoots up upon standing from 60s while laying to 100s when standing. 

 

Early this month,  I was on my way to an appointment with a psychologist because my primary care doctor thought it was just really bad anxiety. I did not make it to the appointment because I was feeling one of those episodes so I went to the emergency room instead. While there, I get my heart rate shooting up out of nowhere. My left arm, jaw and chest all go numb. The heart monitor starts going crazy and a bunch of nurses and doctor rush in. They put a big patch on my chest that was to shock me I guess, but they did ekg and said it was a sinus tachycardia rhythm. They give me ativan IV and when my heart rate got to the 80s they wanted to discharge me, but when I tried standing up my rate shot up to 130s. I get admitted and stay there with a diagnosis of panic disorder. A cardiologist sees me here and they saw how my heart rate changed dramatically when I stood up. They test my blood pressure and find that it goes up when I stand. I also get an echo of the heart that came back normal. 

 

I get discharged and visit my primary care doctor who now refferd me to a cardiologist for a pots suspicion. 

 

I am currently waiting to see that cardiologist as well as a return visit to a stanford cardiologist for the holter monitor which showed 42 as my lowest rate and 170 as my highest(I was not exercising just getting up from laying). My biggest concern are those episode where I feel like I am drowning as well as these fast heart rate episodes . The only thing that seems to help is ativan which I only have 3 pills left. I also noticed that benadryl helps when I feel this way, but it takes an hour to kick in for me. I also have an Atrovent inhailer that helped my breathing, but it makes my heart rate shoot up.

 

At this point I believe I have some sort of nervous system damage from that severe pain I got back in July. I believe it was a collapsed lung that was not treated and somewhat healed on its own, but leaving damage elsewhere. 

 

Anyone else have any ideas? I am at a loss.

 

I apologize for any spelling or grammar mistakes.  I am posting from my phone.

 

Thank you for reading.

 

[Nathalie]

Yeesh...it really bothers me when doctors call things they can't explain anxiety....

Like you, when I was in the hospital the same day I was diagnosed with POTS, even the smallest movements would make my heart race too.

Ask for a tilt table test...easiest way to find out if you have POTS. And I hope you get to see a cardiologist soon. Good on your primary care physician for the referral.

POTS is still not well known and even lesser understood...don't give up! Make sure you keep advocating for yourself and if need be, call around to cardiologists or neurologists in your area and ask each one if they are familiar with POTS. Talk to the receptionists and ask them to ask the doctor if they treat POTS. Have them call you back with the answer. When you find one, have your primary care provider make a referral to that person. If there is no one in your immediate area, broaden your geographical perimeter a bit more. The Mayo Clinic and Vanderbuilt University's Autonomic Clinic are also really good choices.

That being said, fingers crossed that the cardiologist you'll be seeing (the one your doctor referred you to) will be able to help

 

 

[HGSE]

Hello Nathalie,

Thank you for your words I will try my hardest to get to the bottom of this and find a doctor that understands.

 

I unfortunately had a pretty bad episode on my way to the Er yesterday.  My heart rate shot up out of nowhere while in the car. We had to pull over and Call 911. The paramedics immidiatly said it was an anxiety / panic attack.  

 

They took me to the hospital were the doctor said I was fine. They concluded  after doing an orthostatic test that I probably did have some sort of POTS, but that my anxiety was making it alot worse. 

[Aqua4fun]

A heartfelt hello,

  I am curious as I discovered that since I started wearing a Wahoo halter paired with SweetBeatHRV app

that I rest comfortably at 60-70 then carefully up to do a thing or two- I go right up to 120 +.

so I am wondering with watching all my Sympathetic spikes ( even at rest) that it may be Hyperadrenergic POTS!?

has this been considered for your symptoms?

Apparently there should NOT be a TTT test for H. POTS but blood/urine work....

So now past Thursday nite I had hyper emesis and awoke on Black Friday with Tachycardia 185 unable to bring it down

(watched a U-tube real quick like)

Then I called 911. 

Stabilized per ER standards - given Diltiazem. And yes I advocated for IV Saline which wasn’t in the ER plans. 

But now back at my Airbnb (lol traveled to an Fayetteville, Arkansas Neurological Clinic to deal with my CRPS)

I am uncertain of my condition/meds given at ER. I did fill the script as I researched it is used for (off-label)

tachycardia. Took it last night slept well until my 3am spike woke me up.

so many types of POTS and being able to read others notes/sharing is such a gift in itself,

thanx for listening and looking forward to being home, xox