I am part of the Takotsubo Support group. I hope sharing my story may be of some help.
I am 69 years old and living in Minnesota in the US. I was diagnosed with Takotsubo Cardiomyopothy on January 25, 2018. For the past several months I had been under extreme stress. I suffered a head injury at work and my worker’s compensation was denying my claim, which resulted in a loss of income. Additionally, I had just been told that the head injury caused a cerebral aneurysm and surgery was too risky.
In the early evening hours of January 25, 2019 I was sitting on my couch with my two dogs worrying about how I was going to save my house from foreclosure without an income. Quite suddenly I had a severe chest pain- the worst I had ever felt and began throwing up. I called 911 and was taken to the nearest hospital.
My Troponin was elevated and the hospital ordered an echo of my heart which showed an Ejection Fraction of 20 % and a ballooning of my heart. The hospital I was at did not have the capability to do an agiogram, so I was transported to a larger hospital and taken directly to the Cardiac catheterisation Lab. As I am allergic to the contrast dye, I was given a large dose of Prednisone and Benedryl prior to the angiogram. The results showed no blockage.
The cardiologists told me how fortunate I was and that they expected my heart function to return to normal. The doctors also referred to this as a “stress induced” cardiomyopathy. I was kept for 4 days and sent home with instructions to follow up with a cardiologist in a few weeks. I was led to believe that this was a very minor thing.
However, this was, and continues to be anything but minor.
The fatigue is overwhelming to the point that there are many days I cannot get out of bed. I continue to have chest pains that come and go. During one episode I returned to the hospital emergency room only to be told that I had not suffered a “real” heart attack. As it was taking a long time to get an appointment with a cardiologist, I asked my primary physician to order a repeat echocardiogram. This one showed that my ejection fraction was up to 58%. I was finally able to see a cardiologist at the University of Minnesota about 3 weeks after the event. He did not really answer any of my questions and treated me as though what I experienced was a one time thing and I had fully recovered. I told him that the fatigue was constant and that I still had chest pains. He did not address the chest pains at all. As far as the fatigue, he said I had low blood pressure and that was the cause of my fatigue. I explained that I had low blood pressure my entire life (I generally run 90/60) and I had never experienced this kind of fatigue. He actually had the nerve to tell me to go home and begin adding more salt to my diet – then come back in one year. Needless to say, there was no point in debating this with him.
Around this time I found the online support group and discovered 1000 other women going through the same thing. I saw another cardiologist, who pretty much told me the same thing (minus the salt) and that I was fortunate not to have blocked arteries. She assured me I was fine, my heart was functioning normally and I should see her in a year.
Meanwhile, I am getting worse. I know my body. I know this is not in my head, it is not anxiety, and something is definitely wrong with my heart. I have never had an MRI, only the two echos – not even a repeat ECG. I do recall when I had the event I was told that another finding that led to the Takotsubo diagnosis was an inverted T wave on my ECG.
Through the support group I found another woman from Minnesota who seemed to have confidence in her cardiologist and I was able to get an appointment with him. He was at with the Minneapolis Heart Institute at Abbott Northwestern Hospital and he was doing some research on Takotsubo. During my first visit with him,I said I did not expect him to have all of the answers, however, I expected him to listen to me and not to try to create a reason for my ongoing symptoms such as anxiety of reflux. I have read quite a lot about this awful syndrome and I know that it can happen again – also that there has been no real consensus on how to treat it except for treating symptoms. I was willing to try any suggestions he may have had. He was quite honest with me and told me that he had other patients with it and that it could happen again and it could be quite serious. Finally, someone wass listening.
I have a complicated health history. I have advanced Emphysema, Adrenal Insufficency, have had pulmonary embolismi, major back problems t(hat resulted in surgery for Cauda Equina Syndrome), questionable seizure activity, TIAs, and have had a host of diseases including Lyme disease, CMV, Mycobacterium Avium and too many others to name. What I have noticed recently, is that when I have a flare up of my emphysema and am put on an increased dose of prednisone, I have fewer chest pains and the fatigue is lessened. I have found some research articles linking Takotsubo and Adrenal Insufficiency. I take a maintenance dose of hydrocortisone every day with instructions to increase the dose any time I am ill, have surgery, or am under stress. I have begun to wonder If my adrenal glands would normally produce more of whatever it is they produce when I am stressed, and because mine don’t work my body can’t do this, perhaps that may brought on the cardiomyopathy.
I’m going to go back in time a little because I don’t think this is the first time this has happened to me – just the first time it was diagnosed. Within a few weeks of giving birth to my daughter in 1971 I began to have chest pain. I went to my doctor who simply took a chest x-ray and said maybe my ribs had gotten bruised. For the next few years I had some pain on and off. Then around 1973 I went to the doctor with chest pain thinking I might have pneumonia. He did an ECG and admitted me to the hospital diagnosing me with Myocarditis. I followed up with a cardiologist who diagnosed me with Mitral Valve Prolapse and put me on Inderal.
Over the next ten or so years my symptoms became much worse. There were times when the pains went down my left arm, sometimes causing weakness on my left side. I was always told I had anxiety. I did develop some pulmonary emboli and a few blood clots in my left leg – I was put on coumadin. During all of this time I was living in Miami, Florida. In 1984 I moved to Minnesota and my symptoms followed me. There would be long periods of time when I felt well, then I would have spells of chest pain,shortness of breath, and left sided weakness. Still no answers.
Then on 7/10/1999 my father died very unexpectedly. I began having severe chest pain and my legs were so weak I could not get up the stairs. I called 911 and was taken to the hospital. That was the first time I heard about Troponin. Mine was elevated. I was told in the emergency room that I had suffered an M.I. At that time some of the hospitals were giving patients a drug to bust up clots – except I was on coumadin and could not take it. I was transferred to a larger hospital and had an angigram. It showed no blockage. I was diagnosed with Prinzmetal’s disease or Coronary artery spasms. The doctors tried several types of long acting nitrates but they all lowered my blood pressure too much. So, I was not medicated. Looking back, I believe I had a Takotsubo Cardiomyopothy. I feel that over the years I have simply been given the disease of the month, so to speak. For all I know, this may be yet another one. But whatever it is, I share too many symptoms with my support group for it to be coincidence.
Just as an FYI, in 2011 I had an artery burst in my stomach and was taken off the coumadin. So, now here I am. Chest Pains are nothing new to me, neither is shortness of breath or being treated like I’m imagining things when I go to the hospital. Something is seriously wrong with all of us and yet we are still being treated and worked up in the same way men are when they have blocked arteries. Then we are supposed to be reassured. I’m not. I think we are looking in the wrong direction.