I am responding to your request for people who have experienced Takotsubo Syndrome (TTS) to share their story. Sorry but it’s a long one.
I am 62 years old and had my episode in early December 2017. At the time I was experiencing my second episode of thyrotoxicosis, having been diagnosed with Graves Disease about 3 years beforehand. The first episode of thyrotoxicosis was managed with carbimazole and atenolol. I had been off medication for over a year when I recognised the familiar symptoms of hand tremor, profuse sweating and insomnia so went to my GP for blood tests which came back with high thyroid levels again. I was referred back to my endocrinologist who reinstated the carbimazole and atenolol.
Complicating the picture is that I also experience chronic pain as a result of a motorcycle accident as a teenager and subsequent referred pain from osteoarthritis in my spine. I also experience episodes of sudden onset severe pain which causes spasms in the pelvic bowl. These acute pain episodes I can only describe as being like a childbirth contraction that lasts about 30 minutes or so until oral painkillers and Valium kick in. Unfortunately the pain spasms occur much more frequently when I am thyrotoxic. I was referred to a pain clinic about 2 years ago and had a ganglion impar block and this greatly relieved the pain for about 9 months. I also worked with a women’s health physiotherapist on learning to switch pelvic floor muscles on and off.
During my first experience with Graves Disease I believe I may have had an undiagnosed and milder episode of TTS. I got up for work one morning and was struck by a severe pain spasm for which I took my usual medication of 2 x panadeine forte and 2 x Valium. I was doing my usual shuffling walk around and controlled breathing which sometimes helps with the pain when my legs became extremely weak and gave way. I also had a feeling that I had to focus on my breathing or my body would forget to do it. It was extremely odd. I considered calling an ambulance but instead I made my husband stay home from work with me until I felt I could breathe normally again and strength returned to my legs. I was off work for a couple of days after that. I mentioned the episode to my GP and my endocrinologist but neither were particularly interested in it. I did some google searches and the only thing that seemed anything like it to me was periodic paralysis. Looking back I suspect it may have been TTS.
My actual diagnosed episode of TTS occurred in early December 2017 but I believe there were warning signs for almost a week beforehand. As I mentioned earlier I was again being treated for thyrotoxicosis when I had another episode of severe pelvic pain at work. I took my usual medications for this occurrence and retired to a quiet room in the office where I could do my shuffling and physio stretches (and I’ll admit swear a lot as well) in private. I requested a colleague who is an ex-NUM in a A&E to join me. She called an ambulance because I was very clammy and the pain was not dissipating. (I’ve always said that the pain is so bad it will kill me one day). Security in our building sent two paramedics who also work there to come and look after me until the ambulance arrived. The irony is that because they were there the priority of my call out was reduced even though the paramedics in our building have no access to pain relief drugs or an ecg. In the interim I phoned my husband who caught a train to the city from his work place. By this time, about 40 minutes, the oral medication had started to take effect and there was still no sign of an ambulance so I decided to get my husband to drive me home and that we would stop at an ED on the way if I felt worse.
For the next 3 or 4 days I felt nauseous and shaky and had intermittent pain similar to a mild form of trigeminal neuralgia in my jaw that swapped sides occasionally. I also had visual disturbance similar to what I typically get as a precursor to a migraine (but that never arrived) that would also swap between eyes. I eventually went to the ED of the local community hospital (which is a small campus of a much larger health service) to see what they thought was going on. They took my temperature and my blood pressure which was fine so sent me home with an anti nausea wafer. I went back to work for a day. That night I got out of bed about midnight to get a glass of water. I made it halfway down the stairs when I was suddenly hit with severe pain in the centre of my chest, lost all feeling in my left arm, was shaking and clammy and struggling to breathe.
Fortunately my daughter was still awake and downstairs so she immediately called an ambulance. I chewed 3 aspirin while waiting. A MICA ambulance arrived within 10 minutes and after a quick ecg decided I was probably having a heart attack so took me to the nearest major hospital. I was given nitro in the ambulance.
On admission to ED I was given all the usual tests for MI and told I would have an angiogram. The chest pain was not too severe. I had the angiogram after about 14 hours. It was done via the wrist. This was extremely painful at several points and when i told the operator there was then a discussion about whether I had enough sedation. For some reason they seem to assume that we more mature folk won’t need high doses for them to be effective. I do recall looking at my heart on the monitor and asking them if it was mine (I’m not sure whose heart I thought it might be). I’m not sure whether they told me then that I had TTS rather than a heart attack but when my cardiologist did his rounds the next morning he told me what it was and explained it to the other staff with him. Someone stupidly asked me if I’d been fighting with my husband or something when it happened but my cardiologist explained it was secondary to Graves Disease.
I spent 5 days in hospital then was discharged on clopidogrel, atenolol, ramipril, aspirin, atorvostatin and my regular pain meds. I had an echocardiogram just before I was discharged.
I was treated in the public hospital system but opted to have my follow up privately with the same cardiologist (who also holds an academic position) as he performed the open heart surgery on my GPs husband (so she likes him) and his office manager has also had TTS. I figure that puts him in a pretty good position to do the best for me.
The first couple of months after my episode was characterised by grinding fatigue. I have never been a day time napper but slept hours every day. It is literally like there is no fuel left in the tank. I also had another overnight admission to the short stay unit for observation when I had further chest pains and four more visits to ED with chest pains. These usually take awhile because I have dreadful veins and by the time everyone has had a go at getting a cannula in to get bloods, give fluids then do repeat tests hours have gone by. Because my treating cardiologist is the head of cardiology across all campuses of the health service I seem to get treated well rather than fobbed off as many seem to be.
The chest pains are of two main types: one very localised in the region of the heart and the other a feeling of constriction across the chest. The constriction has been resolved by increasing my dose of ramipril. The localised pain seems to be going away of its own accord. My suspicion is that as my arm was swollen and heavily bruised for months after the angiogram that this localised pain might be due to inflammation post angio. My left forearm is still slightly swollen 9 months later!
My other main issue is that I now get bursts of ectopic heart beats. My cardiologist ordered a holter monitor test because I was able to show him print outs from my Fitbit app showing what appear as sudden spikes in heart rate (200+) that coincided with times I felt shaky, ill (like my chest was full of jelly), had visual disturbance like I had immediately prior to my episode of TTS and shortness of breath. The holter monitor showed these episodes were bursts of ectopic heart beats and my cardiologist advises they are benign. Unfortunately they are quite unpleasant when they occur. For the first couple of months they would happen if I tried to walk any distance (we live in the inner city 5 minutes walk from our local shopping strip and there were days my husband would have to go home and get the car because I couldn’t make it), tried even the slightest of inclines and standing still (eg having a shower or cooking).
My cardiologist reduced my atenolol dosage last time I saw him and I then experienced what I refer to as the fortnight from hell. I have never suffered from anxiety but suddenly I was getting hot flushes and intense feelings of anxiety washing over me multiple times a day. I couldn’t get it together to go to work for more than one day a week and even that was a nightmare. My GP explained that the palpitations can trigger the fight or flight response and as the beta blocker dose had been reduced I was having more and my body was going into panic mode. She put the beta blocker dose back to where it was previously and I was magically back to feeling like a human being again.
So, I am almost 9 months post my TTS episode and I feel like I have gotten through it pretty well.
I didn’t work for 2 1/2 months and have been very gradually increasing my work hours to the point where I am almost full time again. I work from home at least one day per week which works well and enables me to do thinking work and writing. I still get days where I feel exhausted. I had a busy day Tuesday and when I got home collapsed in a chair and literally couldn’t get out of it to answer a knock at the door. I tried 3 times and I just didn’t have the strength so just thought ‘stuff it’. I eventually managed to drag myself to bed and slept 11 hours. I used to work a minimum 10 hour day but now if I stay in the office longer than 9 hours I start to feel I may not have the strength to drive home so I’m trying to be much more disciplined about my work hours.
The clopidogrel was ceased after 3 months when my echo showed normal heart size and ef of 70%. The ramipril is 3 times what it was when I was discharged and the atenolol remains the same. I take atorvostatin because I have always had high cholesterol that seems to be genetic.
I started cardiac rehab about 3 months after my episode. It was less intense than MI patients but did make me feel safer about what I could do.
My endocrinologist and I had discussed a more permanent solution to my Graves Disease prior to my TTS but we have agreed to manage with oral medication for the remainder of the year and then review. Although my cardiologist has advised I am fine for either radioactive iodine or surgery my endocrinologist is a little nervous about it. Originally we were discussing iodine but that induces thyrotoxicosis so the risk is over an extended period of time. Surgery is also a risk but for a shorter period of time. Decisions, decisions.
I think the only thing left to say is that it is rather frustrating that so little research has been done on TTS and the bad advice that is out there. Even the Cleveland Clinic website says people recover in a couple of weeks! I wish! When I read some of the posts from other people who have had TTS I cannot believe how poorly they have been treated.
I also hate the term ‘broken heart syndrome’ as I feel it trivialises the condition, ie that it’s just us neurotic old women who get it.
Wow- your story is basically my story! Crazy! My TTS occurred on Dec 2, 2017. I turned 50 3 weeks later. I had been diagnosed with Graves in July 2017 and continued to be thyrotoxic off and on thru to the TTS.
My chest pain never went away and I was subsequently diagnosed with Coronary Microvascular Disease April 2018.
I am a teacher and am trying to return part time now.
I really appreciate your story. Do you know about the TTS Facebook group?