When mental illness is actually physical
January 1, 2017 5:33 PM   Subscribe

So last week I explained that I was having an emotional crisis and asked for some help with decision making. It turns out that I was not having an emotional crisis and was actually having extremely dangerous heart arrhythmias that often lead to sudden cardiac arrest. (Supposedly, certain heart conditions and rhythms can be accompanied by feelings of hopelessness and impending doom.) Now I am alone in a hospital and am facing an uncertain future.

Tomorrow I will be meeting with an electrophysiologist to discuss how to deal with what is a serious congenital heart defect that I've somehow survived for 41 years. (It was misdiagnosed as a harmless functional heart murmur when I was born.)

My cardiologist informs me that the most likely outcome is the implantation of a defib device that will shock me when my heart goes into vtach/vfib. I am already terrified of this prospect. I fear electrical shock. I already know that being implanted with this device will make me afraid of doing anything at all that might make my heart get excited. I have sleep apnea, and I fear being shocked out of sleep. I am already afraid of being shocked while I am alone.

My instinct is to tell the EP that I have significant psychiatric history and to insist that I will need some type of therapy if such a device is recommended. Would this be appropriate, and does it seem likely that they would be able to find me some therapeutic support during this time?
posted by xyzzy to Health & Fitness (7 answers total) 5 users marked this as a favorite
It is 100% appropriate and a really good idea to ask for therapeutic support as you process this change and adjust to your new diagnosis and device. I'm not sure if the EP will be able to connect you to the right kind of services, but the hospital should have social workers on staff that can help. Your nurse can probably tell you how to contact the hospital's social work department.
posted by insectosaurus at 5:40 PM on January 1, 2017 [29 favorites]

Yes, it's appropriate to tell a doctor your full medical history. Your hospital should have a social work team. And you may want to consider a psychiatric consult: mental illnesses and physical conditions are linked.
posted by kerf at 5:54 PM on January 1, 2017

This is absolutely fine to ask for, as well as support for the trauma of a sudden very serious medical diagnosis. You might also ask for someone to talk to besides a (often not high on bedside manner) cardiologist about what the actual experience of having this device will be.
posted by Lyn Never at 6:09 PM on January 1, 2017

Here's some great news: your situation and request are not at all inappropriate...in fact, cognitive behavioral therapy for patients like yourself is a thing your doctor (or their network) should be familiar with if s/he's worth their salt. Some examples:

Managing anxiety in patients with implanted cardiac defibrillators
(A more layperson friendly summary here)

Cognitive behavioral therapy (CBT) in a Patient with Implantable Cardioverter Defibrillator (ICD) and Posttraumatic stress disorder(PTSD)

Efficacy of cognitive behavioral therapy in reducing psychiatric symptoms in patients with implantable cardioverter defibrillator: an integrative review.

The Importance of Psychological Support for the Implantable Cardioverter Defibrillator Patient

Your concerns are so normal and there are so many professionals working on complementary psychological treatments that are targeted towards what's going on.
posted by blue suede stockings at 6:17 PM on January 1, 2017 [25 favorites]

I work in an Electrophysiology practice, and we regularly refer to trauma/PTSD therapists. What you're going through can be very scary and you're not alone in feeling that way. Some of the larger university-based hospitals will even have defib support groups. If you can find such a group, it could be helpful to talk to people who have been through/are going through the same thing. But to answer your question, it is 100% appropriate to request (and insist on receiving) additional support.
posted by dogmom at 6:46 PM on January 1, 2017 [7 favorites]

First, let me say that I am glad that you finally got a diagnosis. I'm the same age as you, and I was also misdiagnosed when young (currently my diagnosis is atrial fib/tach, which was initially treated with beta blockers, then with catheter ablation). Cardiac arrhythmias can definitely cause anxiety and depression, even if you don't know you have the condition. Getting treatment may reduce your psychological discomfort over time, both by normalizing your cardiac rhythms, which may change the signals your brain is getting from your body (making you less subconsciously stressed), and also through the conscious knowledge that you are safer having received treatment.

Absolutely seek psychological therapy. If you aren't satisfied with the therapy from the first therapist you see, seek out another one. Also, depending on the culture of treatment at the hospital you're currently at, you may want to seek out a therapist who is not part of their network. YMMV, but I felt more comfortable with an "outside" perspective (probably because I was untrusting after 2 decades of misdiagnoses). Psychological therapy is a critical component of recovery: you want to stay alive, obviously, but you also want to have a good quality of life. Therapy can be extremely helpful with this.

The fact that you have finally been diagnosed, and are seeing an Electrophysiologist (rather than only a traditional cardiologist) is extremely encouraging! I would inquire about catheter ablation therapy, in addition to the implanted de-fib. The de-fib is basically the safety net implanted that will save you on the off chance that you have v-fib, the ablation therapy radically reduces the chances that you'll experience any fibrillation or tachycardia in the first place. Not only is this reassuring psychologically, but can help reduce the anxiety-triggering signals sent to your brain as well.

Someone here who works in the field said there are group support meetings for people in your situation. If that option was available when I was a patient, I was not aware of it. I imagine it would have been tremendously helpful for me.

Cardiology has come a *long* way in the last 20 years, there are amazing therapies available now.
posted by ethical_caligula at 6:14 AM on January 2, 2017 [5 favorites]

Hi. I had very nearly exactly the same thing happen a year and a half ago, right down to the age of 41, suddenly diagnosed with V-tac, what I thought were panic attacks and lightheadedness due to anxiety. I was hospitalized for two weeks and traumatized by the near constant threat of defibrillation. Between ablation procedures I was supposed to wear a defibrillator vest, and I refused because having it on my body made me want to vomit from fear. I'm so, so sorry you're going through this.

Favoriting ethical_caligula so hard. I remember my EP also suggested that an ICD was a possibility, but they were able to do (two) ablations instead. She never implanted an ICD, and I no longer have anything more significant than an occasional run of benign PVCs.

Regardless of what your options are, please ask for a recommendations to a psychiatrist. Do it the next time you meet with your EP. This will not be the first time they have gotten this request. They likely have someone in the hospital you can talk to.

Very best of luck to you <3
posted by lilnublet at 3:48 PM on January 2, 2017

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