help me brainstorm my mother's mystery heart issues.
October 1, 2022 1:40 PM Subscribe
I am trying to help my mother with her ongoing cardiac symptoms that seem to have no organic cause. With nothing being revealed by testing, she is being pointed towards "Coronary Artery Spasm". I have also come across the description of "Da Costa Syndrome" or more recently cardiac neurosis/somatoform autonomic dysfunction of cardiac type. I'm wondering if anyone has experience of either of these diagnoses or has any other ideas?
My mom (60) has been suffering from the following symptoms: chest "heaviness"/"pressure", debilitating fatigue worsened by exercise, some amount of brain fog, and of most concern, two isolated events (around 10 years apart) in which the chest sensations (squeezing/pressure rather than pain) were so severe that she was admitted to hospital to rule out a heart attack. No evidence of heart attack or damage to the heart was found on either occasion.
However, back 10 years ago after the first of these incidents she was referred to have an angiogram, which identified mild angina. She was then prescribed and has been taking medication to reduce high blood pressure (despite not having particularly high BP) and a GTN spray to use when experiencing chest pains. Apparently the GTN spray does "work" to reduce acute symptoms experienced when exercising. Overall her chronic symptoms have not improved, have worsened if anything, and she continues to feel a lot of fatigue and is frustrated at her increasingly limited ability to function in daily life.
Around 8 months ago she had the second incident of heart-attack-seeming symptoms and was admitted to hospital overnight. It was found that she was not having a heart attack. She has had a test (I think an ultrasound) to rule out any major damage to the heart. She was supposed to be referred for a CT scan to check for other kinds of damage that might have occurred but waiting times for this were too long, so the cardiologist referred her for a second angiogram instead.
Last week she had the angiogram. I think she was fairly convinced the angina had worsened and that she would qualify for a stent, which she was imagining could be a miracle cure to restore her energy and function. Instead the angiogram revealed no angina at all.
The cardiologist has said he has no further avenues to pursue, other than potentially coronary artery spasm. The test for this is angiogram, which did not identify any kind of angina. So I am suspicious. There also doesn't seem to be any other treatment other than what she has already been taking for regular angina caused by blockages. The cardiologist said she can continue to take the low doses of her current meds to see if it helps. She's inclined to stop taking the meds in case they are making things worse.
I have also been looking into somataform dysfunction. My mother had a lot of complex family trauma in her youth that was never dealt with properly, she has never had therapy. In her self perception she is mentally well, balanced, has no trauma, no problems. But she has always struggled with insomnia. Tinnitus. Extreme emotional sensitivity and volatility. And there has always been a succession of things "wrong" with her that has prevented her from functioning fully in the world: from bad backs to migraines to now the heart symptoms. I don't doubt that she has experienced real, debilitating pain and fatigue from all these. But something says to me that it must be linked, that she has channelled all her pain so effectively from her conscious mind that it damages her body instead. The incidents of severe acute cardiac symptoms occurred around times of extreme stress. Most notably to me the more recent incident happened when she was dealing with a particularly stressful situation with her own father, who was abusive and a major cause of some of (what I perceive to be) her trauma.
I found the description of "Da Costa syndrome"/"soldier's heart" and it read like a description of her. It is not a current diagnosis that is used any more. But it fits under the umbrella of somatoform dysfunction: nothing organic is wrong, but psychological causes lead to real physical experiences.
She has also been suspected to have ME/CFS by a GP. She rejects this diagnosis, on the grounds that it does not encompass her cardiac symptoms.
In my gut I feel that she would reject anything psychological as a cause. She wants to have a "real" illness: in order to justify her reduced ability to work, and in order to hold out hope for a treatment that will cure her. She is even talking about quitting work completely as the stress of her part time job (three mornings a week, office work from home but in a very emotionally involved role) "wipes her out" for the week.
This has been long, but I want to help my mother. I want to know if any of the somatic disorders can be treated. Does she simply need a really good psychiatrist and psychotherapist to help her unravel her trauma and stress and learn to cope with her fatigue better? CBT? Or does this sound like you, and you got a diagnosis of coronary artery spasm and found ways of managing the condition? At the moment she feels there is no recourse to doctors, as they have basically said that it's probably artery spasm, but if it is there's nothing to be done because it is under-researched. We are not in a healthcare system where you can simply pick and choose specialists, and she cannot afford private healthcare. The cardiologist she has been seeing may well follow up with her after the angiogram, but I doubt he will offer anything other than to continue taking angina medication on the guess that it might be coronary artery spasm.
Any insight appreciated.
My mom (60) has been suffering from the following symptoms: chest "heaviness"/"pressure", debilitating fatigue worsened by exercise, some amount of brain fog, and of most concern, two isolated events (around 10 years apart) in which the chest sensations (squeezing/pressure rather than pain) were so severe that she was admitted to hospital to rule out a heart attack. No evidence of heart attack or damage to the heart was found on either occasion.
However, back 10 years ago after the first of these incidents she was referred to have an angiogram, which identified mild angina. She was then prescribed and has been taking medication to reduce high blood pressure (despite not having particularly high BP) and a GTN spray to use when experiencing chest pains. Apparently the GTN spray does "work" to reduce acute symptoms experienced when exercising. Overall her chronic symptoms have not improved, have worsened if anything, and she continues to feel a lot of fatigue and is frustrated at her increasingly limited ability to function in daily life.
Around 8 months ago she had the second incident of heart-attack-seeming symptoms and was admitted to hospital overnight. It was found that she was not having a heart attack. She has had a test (I think an ultrasound) to rule out any major damage to the heart. She was supposed to be referred for a CT scan to check for other kinds of damage that might have occurred but waiting times for this were too long, so the cardiologist referred her for a second angiogram instead.
Last week she had the angiogram. I think she was fairly convinced the angina had worsened and that she would qualify for a stent, which she was imagining could be a miracle cure to restore her energy and function. Instead the angiogram revealed no angina at all.
The cardiologist has said he has no further avenues to pursue, other than potentially coronary artery spasm. The test for this is angiogram, which did not identify any kind of angina. So I am suspicious. There also doesn't seem to be any other treatment other than what she has already been taking for regular angina caused by blockages. The cardiologist said she can continue to take the low doses of her current meds to see if it helps. She's inclined to stop taking the meds in case they are making things worse.
I have also been looking into somataform dysfunction. My mother had a lot of complex family trauma in her youth that was never dealt with properly, she has never had therapy. In her self perception she is mentally well, balanced, has no trauma, no problems. But she has always struggled with insomnia. Tinnitus. Extreme emotional sensitivity and volatility. And there has always been a succession of things "wrong" with her that has prevented her from functioning fully in the world: from bad backs to migraines to now the heart symptoms. I don't doubt that she has experienced real, debilitating pain and fatigue from all these. But something says to me that it must be linked, that she has channelled all her pain so effectively from her conscious mind that it damages her body instead. The incidents of severe acute cardiac symptoms occurred around times of extreme stress. Most notably to me the more recent incident happened when she was dealing with a particularly stressful situation with her own father, who was abusive and a major cause of some of (what I perceive to be) her trauma.
I found the description of "Da Costa syndrome"/"soldier's heart" and it read like a description of her. It is not a current diagnosis that is used any more. But it fits under the umbrella of somatoform dysfunction: nothing organic is wrong, but psychological causes lead to real physical experiences.
She has also been suspected to have ME/CFS by a GP. She rejects this diagnosis, on the grounds that it does not encompass her cardiac symptoms.
In my gut I feel that she would reject anything psychological as a cause. She wants to have a "real" illness: in order to justify her reduced ability to work, and in order to hold out hope for a treatment that will cure her. She is even talking about quitting work completely as the stress of her part time job (three mornings a week, office work from home but in a very emotionally involved role) "wipes her out" for the week.
This has been long, but I want to help my mother. I want to know if any of the somatic disorders can be treated. Does she simply need a really good psychiatrist and psychotherapist to help her unravel her trauma and stress and learn to cope with her fatigue better? CBT? Or does this sound like you, and you got a diagnosis of coronary artery spasm and found ways of managing the condition? At the moment she feels there is no recourse to doctors, as they have basically said that it's probably artery spasm, but if it is there's nothing to be done because it is under-researched. We are not in a healthcare system where you can simply pick and choose specialists, and she cannot afford private healthcare. The cardiologist she has been seeing may well follow up with her after the angiogram, but I doubt he will offer anything other than to continue taking angina medication on the guess that it might be coronary artery spasm.
Any insight appreciated.
POTS? As I understand it, it presents similarly to CFS in many, but the key part is heart rate spiking soon after standing up.
Has she tried wearing a continuous heart rate monitor? For CFS also, I have seen it recommended to try to keep the heart rate lower by pacing activity, and I have found this quite effective.
posted by lookoutbelow at 3:37 PM on October 1, 2022 [2 favorites]
Has she tried wearing a continuous heart rate monitor? For CFS also, I have seen it recommended to try to keep the heart rate lower by pacing activity, and I have found this quite effective.
posted by lookoutbelow at 3:37 PM on October 1, 2022 [2 favorites]
Get her off the blood pressure meds, they are causing the fatigue. If it is Lisinipril, that is a terribly debilitating drug, especially if she doesnt need it. Get her esophagus scoped to make sure she doesn't have some sort of blow out there. The sphincter near the heart is called the cardiac sphincter and blockages there, acid burns, or anything there mimics heart pain.
Read and heed.
posted by Oyéah at 3:46 PM on October 1, 2022 [2 favorites]
Read and heed.
posted by Oyéah at 3:46 PM on October 1, 2022 [2 favorites]
Something "organic" is wrong, and something like orthostatic intolerance can be treated (examples: compression garments, fludrocortisone, midodrine, dietary changes like increasing sodium and fluid intake throughout the day). Orthostatic intolerance was seen in Da Costa Syndrome, and it's seen in ME/CFS, too. One type is Postural Orthostatic Tachycardia Syndrome (POTS).
So, explore the ME/CFS diagnosis, as this condition can have the fatigue (particularly post-exertional malaise (PEM)), brain fog, chest "heaviness," and the old racing-heart symptoms your mom's described.
posted by Iris Gambol at 3:54 PM on October 1, 2022 [2 favorites]
So, explore the ME/CFS diagnosis, as this condition can have the fatigue (particularly post-exertional malaise (PEM)), brain fog, chest "heaviness," and the old racing-heart symptoms your mom's described.
posted by Iris Gambol at 3:54 PM on October 1, 2022 [2 favorites]
While it is possible it's psychological/psychosomatic, it is absolutely worth looking for a physical cause first. Just because your mother has a lot of untreated trauma doesn't mean this is necessarily psychosomatic - a trauma history also significantly increases the risk of physical health problems. Even something like CFS is generally a diagnosis of exclusion.
(I'm mostly weighing in b/c as someone with a long and complex history of trauma and also various psychological diagnoses, i had a lot of people - both doctors and friends/loved ones - who wrote it off as being in my head. Sometimes very nicely and out of concern for me! But I actually have a rare genetic disorder that caused all these things, but it took me many years to find a doctor who took my symptoms seriously to diagnose it.)
I know you just want to do what is best for your mother, and that might mean first helping her push for more thorough medical care before you start looking into a somatic or similar diagnosis. If nothing else, if it is indeed psychosomatic (though I've come to hate that term a lot), she may be more likely to be open to considering that/seeking that kind of treatment once other, physical causes have been more thoroughly ruled out.
POTS is something to look into - I have it, it does cause fatigue, but it's never caused chest pain or made me think I'm having a heart attack. I did also experience costochondritis which is basically inflammation of the cartilage connecting ribs to sternum, and that had very similar symptoms to "typical" heart attack presentation. It didn't cause my heart to race, but stress from the symptoms could explain that. Wouldn't explain fatigue though.
posted by litera scripta manet at 5:24 PM on October 1, 2022
(I'm mostly weighing in b/c as someone with a long and complex history of trauma and also various psychological diagnoses, i had a lot of people - both doctors and friends/loved ones - who wrote it off as being in my head. Sometimes very nicely and out of concern for me! But I actually have a rare genetic disorder that caused all these things, but it took me many years to find a doctor who took my symptoms seriously to diagnose it.)
I know you just want to do what is best for your mother, and that might mean first helping her push for more thorough medical care before you start looking into a somatic or similar diagnosis. If nothing else, if it is indeed psychosomatic (though I've come to hate that term a lot), she may be more likely to be open to considering that/seeking that kind of treatment once other, physical causes have been more thoroughly ruled out.
POTS is something to look into - I have it, it does cause fatigue, but it's never caused chest pain or made me think I'm having a heart attack. I did also experience costochondritis which is basically inflammation of the cartilage connecting ribs to sternum, and that had very similar symptoms to "typical" heart attack presentation. It didn't cause my heart to race, but stress from the symptoms could explain that. Wouldn't explain fatigue though.
posted by litera scripta manet at 5:24 PM on October 1, 2022
I have also been looking into somataform dysfunction. My mother had a lot of complex family trauma in her youth that was never dealt with properly, she has never had therapy. In her self perception she is mentally well, balanced, has no trauma, no problems. But she has always struggled with insomnia. Tinnitus. Extreme emotional sensitivity and volatility. And there has always been a succession of things "wrong" …
This makes me think in terms of Takotsubo:
cardiomyopathy or Takotsubo syndrome (TTS), also known as stress cardiomyopathy, is a type of non-ischemic cardiomyopathy in which there is a sudden temporary weakening of the muscular portion of the heart.[3] It usually appears after a significant stressor, either physical or emotional; when caused by the latter, the condition is sometimes called broken heart syndrome.[4] Examples of physical stressors that can cause TTS are sepsis, shock, and pheochromocytoma, and emotional stressors include bereavement, divorce, or the loss of a job.[5] Reviews suggest that of patients diagnosed with the condition, about 70–80% recently experienced a major stressor, including 41–50% with a physical stressor and 26–30% with an emotional stressor.[6][7] TTS can also appear in patients who have not experienced major stressors.[8][7]There's a very interesting new perspective on Takotsubo, which is also called broken heart syndrome, because it’s recently been discovered that the 'love hormone', oxytocin, causes cells to migrate in from the pericardium and repair damage to heart muscle in Zebrafish, and in vitro work suggests that the same is true for humans.
So perhaps a history of difficult relationships in which experiencing the emotion of love is relatively rare could lead to a kind of run down heart in which accumulated incidental damage has not been repaired as it happened, which inclines me to think that the syndrome is very real.
For your mother, finding a doctor who is known to treat Takotsubo and thinks it’s real might be the way forward.
posted by jamjam at 5:49 PM on October 1, 2022
She has ME/CFS and POTS! 80% of people with ME/CFS have POTS. The "debilitating fatigue worsened by exercise" is called post-exertional malaise and requires absolute rest, known as "pacing" - there is an excellent resource here: https://www.meaction.net/resource/pacing-and-management-guide/
It happens to 5-10% after COVID, particularly women, so if she had that recently, that could be why.
There are very few knowledgeable providers, in part because these are only taught in a few med schools. Find someone who knows what they're talking about. The medical (or social/family) gaslighting can make it much worse.
posted by todolos at 7:44 PM on October 2, 2022 [1 favorite]
It happens to 5-10% after COVID, particularly women, so if she had that recently, that could be why.
There are very few knowledgeable providers, in part because these are only taught in a few med schools. Find someone who knows what they're talking about. The medical (or social/family) gaslighting can make it much worse.
posted by todolos at 7:44 PM on October 2, 2022 [1 favorite]
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In other words, an angiogram cannot rule out angina. It's a feeling that a patient experiences due to a biological phenomenon. An angiogram without evidence of coronary artery disease may suggest that the chest tightness, pain, or heaviness is not due to inadequate perfusion of the heart muscle, but it's just one piece of evidence.
For what it's worth, there are treatments for coronary artery spasm, so if that is your mom's doctor's only remaining idea for what's going on, it's worth making sure she is receiving one of them.
Reading your account made me think of MINOCA, which is known to occur more frequently in women and may be less familiar to some general cardiologists.
Another thing I thought of while reading your post is that just as you suspect this may be felt "in the heart" but might be arising in the mind, many symptoms that people feel "in the heart" are ultimately due to disease in the GI tract and/or the lungs. A good primary care doctor can help to untangle some of this and point your mom in the right direction.
I'm a doctor, not your or your mom's doctor, this is not medical advice, just musings.
posted by telegraph at 2:51 PM on October 1, 2022 [6 favorites]