- CASE FILE
Perfect life to a perfect nightmare - 5 years ago I woke up with PVCs & PACs Dr. DX anxiety fast forward 5 yrs My body cont. to deteriorate
ABOUT THIS CASE FILE
It’s been a wild and scary 5 years. It all started with random PVCs and PACs my pcp said it’s anxiety and or stress and put me on Ativan and a SSRI. Nothing changed, except I felt like I was in a tunnel constantly. My symptoms continued to progress, I started getting terrible migraines (never had a migraine in my life prior) we thought maybe it was the meds. Tapered off. Migraines continued, I started getting dizzy upon standing and almost blacking out. I would go into episodes of PVCs and PACs and they would go away and come back. There was no known “triggers” at the time. Then I had an episode that lasted 5 weeks, I was able to get a holter monitor, and an echo. Echo came back fine besides a mild mitral valve regurgitation. Holter results showed Runs of PVCs, PACs, a couple runs of SVT, and sinus tachycardia. My primary care sent me to a cardiologist and a electrophysiologist. Cardiologist said inappropriate sinus tachycardia, the electrophysiologist said he saw SVT and he wanted to do an ablation, went through an unsuccessful ablation and was put on fludrocortisone and metoprolol. I felt okay. I then started having severe stomach and joint pain. Pains in my chest, I was having a difficult time concentrating, fatigued all the time. I was given a referral to Stanford neuroscience clinic. Where I was diagnosed with POTs (postural orthostatic tachycardia syndrome and Ehlers Danlos syndrome. I was taken off some meds and started on midodrine. The neuroscientist set me up for autonomic testing. This testing would include my second tilt table which I failed earlier that year. The conclusion to the testing noted a failed tilt table. My heart rate and blood pressure laying down is normal the minute I am upright my heart rate jumps 50+ beats and initially my blood pressure drops increasing overtime but my heart rate does not stabilize. The neuroscientist told me I needed to continue to see an electrophysiologist because he felt it was my heart and had no further help he could offer unless my ehlers danlos became more problematic. I woke up the next day after this appointment with the testing with my heart beating off. I went to stand up and I felt as if my heart completely paused, everything started going black and I was getting ready to fall and then my heart began beating again. This happened everyday for about 6 weeks including PVCs, PACs, and tachycardia. I was beginning to become short of breathe too. I went through a whole battery of tests with my electrophysiologist including a cardiac MRI, another 30 day holter, 24 hour urine, stress echo, and blood tests. My cardiac MRI came back showing mild tricuspid and mitral valve regurgitation and decreased LVEF(left ventricular ejection fraction) and RVEF(right ventricular ejection fraction). The doctor said we would continue to monitor doing cardiac MRIs every couple of years. I want to note I am a 37 yo female 5’4 140 pds, do not smoke drink, or so drugs. Eat an incredibly healthy diet and up until 5 years ago was extremely athletic. Recently I started getting worse migraines, body and joint pain, adrenal surges, abdominal pain, costochondritis, worsening hiatal hernia, asophititis, severe brain fog...I literally can’t think straight. I’m unable to sleep well due to my body hurting so badly. A couple of weeks ago my doctor thought i May have a type of neuropathy and started me on gabapentin. I had to stop it 1. It wasn’t working 2. It made me feel crazy. Trying lyrica tomorrow.
The point is, I was a healthy 32 yo woman. Now I’m barely able to work. I’m fortunate to have a job that is as flexible as it is but I am a shadow of the person I use to be. I can’t stand up for long without being completely out of breathe and dizzy, my body hurts everywhere, and I keep getting new and worsening symptoms. The heart meds are not stopping the palpitations. None of my doctors are versed in pots or EDS I don’t know if that is even a correct diagnosis. Every time I go to the doctor it’s basically well, let’s try this medication. I don’t feel heard, I’m scared, my life seems so small compared to before. I have a husband and 2 children who are watching struggle. I’ve done research, I continue to advocate for myself, but still nothing. I don’t want to feel like this forever and I want my old self back. I want to wake up in the morning and walk my dogs, make breakfast for my children, do yoga...take trips with my family without having to make a million accommodations, my best friend told me about this show. I got this glimmer of hope that maybe someone, somewhere has answers, a clearer path...something.
I push myself every day to go on a exercise bike in my room, force myself to eat even though food makes my stomach hurt so bad, I drink 2.5 liters of water a day. I take all my meds as directed, I ask questions and question everything.
I want to be a mom again, a good friend, A productive employee, a active person, the creative, witty, outgoing person I was. I’m tired of of canceling plans, my heart aches for the old me. This is not anxiety, I am not anxious, I am not stressed out, I am fed up. I can’t do this alone and I need help to get me back for me and for my family.