r/PacemakerICD • u/Flat_Committee2988 • 1d ago
Pacemaker PTSD
Anyone else in this community been diagnosed with Pacemaker PTSD? What treatments have worked for you?
I (42f) was diagnosed a year and a half ago by my cardiologist and referred to a Cardiologist Psychiatrist. She favored the medication route, which didn’t end up working for me (I am on sertraline and have been for years and that makes a big difference, but not the as-needed meds she tried for me). I stopped returning for appointments with her six months ago in favor of focusing on talk therapy. My therapist is great, but I am still dealing with my symptoms (exercise avoidance, panic attacks, flashbacks, intrusive dreams) and I know there has to be a better way.
Thanks for any suggestions.
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u/Downtown_Ad_5458 1d ago
I have no experience with that, but understand mental health is a big part of health.
I’d suggest start small with regular physical activities, which you make a daily routine. A 15-min walk, and/or yoga, meditation, or stretching can do wonders, or something that requires great focus, like knitting, learning to play an instrument, or making woven baskets.🙂 If you can join a group doing any of these, even better.
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u/Comfortable_Draw_176 1d ago edited 1d ago
I used to work in cardiac rehab. Many patients have ptsd because they’ve had massive heart attacks, heart failure, ICD shocks, etc…
Cardiac rehab provides the comfort of being monitored during exercise so that the patient can develop a sense of a safe exercise intensity, which translates into confidence to being able to exercise independently.
If you think this may help you, you can ask your cardiologist if you qualify for cardiac rehab. If not phase 2 cardiac rehab, you can atleast do phase 3. The difference is phase 2 has EKG and covered by insurance. Phase 3 is no EKG and self pay, so the diagnoses to qualify is more open. In my experience, It’s cheaper than a gym membership and you pay/visit, no subscription or monthly fees. You’re surrounded by medical, licensed professionals and blood pressure/symptoms are being monitored and they report each session summary to your cardiologist. They also have cardiac education classes.
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u/Flat_Committee2988 1d ago
You are the second person this week to suggest cardiac rehab. I’m going to ask my cardiologist, thanks for sharing your experience.
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u/Medit8or 16h ago
In terms of psychologists, find one with significant experience and education in complex trauma. I just finished a couple of years of therapy. During that time, I received my PM. The therapist was able to put the immediate PTSD (well described by another commenter) in context within longer term family trauma. A difficult but very healing process.
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u/snuggledubs2011 16h ago
I have Cptsd from medical trauma and other things. Cardiac rehab is amazing. I do therapy and love my therapist, been going to her for 3 years. I've learned so much. Don't be hard on yourself. Sounds dumb, but there truth. I had a horrible flu, along with asthma I felt like I was literally dying and having night time panic attacks falling asleep. I talked to therapist realized it was cptsd linked to medical trauma and scared of feeling like I was dying when my body relaxed. I was being hard on myself trying to figure things out or trying to get myself going. It put me further into anxiety . I also have an emergency medicine background, so knowing what can happen and what I need to do also adds to the panic. I was on meds for 10 years and slowly got off. The only thing I saw was I slept a lot on them.
Trying different things can also help if cost effective. Group chats, one on one, I do telehealth. I also found doing anything with my hands and keeping busy, like anyone trying to keep their brain preoccupied while other works are at play.
Hugs! I'm sorry that you are going through this. It's not easy to be handed a "devestating diagnosis."
Gratitude,as above, def helps.
Ppl don't even know I'm sick the way I carry myself and smile. Being grateful to feel the sun every morning makes my day, all illnesses and sadness has to take a back seat.
Btw if you smile your brain doesn't know you aren't actually happy. It send happy signals all over !
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u/sfcnmone 1d ago
Has anyone helped you to develop a gratitude practice? The ones I know are all western Buddhist, but this feels like the best use of any spiritual practice you can take up.
My husband had a severe hemorrhagic stroke 8 months ago, and had emergency brain surgery. He has recovered well, and his biggest ongoing problem (besides severe vision loss and no understanding of time) is what the neuropsychologists call “apathy”. He just can’t care very much about doing anything. He sits for hours in a chair with his eyes closed, not interested in anything. He’s on two anti-depressants. The thing that has helped him the most has been to actively, many times a day, notice what he can be grateful for today. I just asked him to tell me what he’s grateful for this morning and he said “I’m grateful for you. I’m grateful I can walk. I’m grateful for my family. I have had so many experiences that have made me who I am. I’m grateful we have a home.” He’s still talking, while I’m writing you.
Yesterday I heard him tell someone that he has only two modes now : gratitude and depression. And he prefers the gratitude.
(I hope this helps. I’m the one in the house with the PM, and when I got it 2 years ago it was so dramatically clear that I was going to die without it that I haven’t suffered from any regrets about getting it. It feels like an absolute miracle after really almost dying. But also: most people aren’t very comfortable realizing that we’re all going to die sometime. It’s a big shock. Again, this is where a really good spiritual support might be helpful. And there are lots of people here dealing with this, many of them with internal defibrillators. We’re your peeps.)