Stressed Induced Cardiomyopathy

Posted by duba @duba, Jan 10 9:10am

I’m just out of the hospital with stress induced cardiomyopathy. I feel grateful for being alive because the chest pains were so severe I didn’t think I would make it. I finally remembered to pray 8 hours into the er and I began to feel less pain. I’m looking for ways to reduce stress. One good thing is, Im not afraid to die anymore. I made peace with that and let go.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

gloaming | @gloaming | Feb 20 10:46am

In reply to @jlf2 "@jc76 IBCD is A Rare inherited metabolic disorder is about all I know about it right..." + (show)

@jlf2 https://www.wadsworth.org/public-health-programs/newborn-screening/newborn-screening-program/isobutyryl-coa-dehydrogenase-ibcd-deficiency

jc76 | @jc76 | Feb 21 6:25am

In reply to @jlf2 "@jc76 IBCD is A Rare inherited metabolic disorder is about all I know about it right..." + (show)

@jlf2
I looked this up on A.I. I use Microsoft Co-pilot. I find it an excellent source of information. When Co-pilot list information at the bottom will give where they got information. For the below I saw NIH.

Isobutyryl‑CoA Dehydrogenase Deficiency (IBCD or IBDD)
A rare genetic metabolic disorder that can sometimes affect the heart muscle, especially in infants or children.

🧬 What the Condition Actually Is
IBCD is caused by a mutation in the ACAD8 gene, which affects how the body breaks down the amino acid valine.
Because of this metabolic issue, some individuals—especially infants—can develop:
• Dilated cardiomyopathy (a stretched, weakened heart muscle)
• Low muscle tone (hypotonia)
• Anemia

Who Typically Has It?
• It’s genetic and autosomal recessive (both parents must carry the gene).
• Often detected on newborn screening.
• Many people with it never develop symptoms.

When you say heart function at 35% I believe they are telling you your ejection fraction (EF) is at 35%. Cardiology (per my heart failure and EP) say when EF gets to 30% they usually recommend a ICD. In many cases if you have electrical issues like I do they also do a pacemaker.

When I got my ICD/Pacemaker my EF had gone down to 30%. When they put in ICD/Pacemaker and changed my medications my EF stabilized as 25% and has stayed there now for over 20 years.

A lot of athletes get ICD/Pacemakers. There extreme training brings their resting heart rates so very low they can have arrythmias. The ICD/Pacemaker is an outpatient surgery and very common surgery these days with great outcomes.

What my EP said to me about getting used to having a ICD/Pacemaker. Consider having the devices as your own dedicated EMS for you when you need it. Thus a ICD/Pacemaker will respond to you within seconds of recognizing a problem versus a EMS or ambulance getting to you what 30 minutes, etc.?

For stress. I learned in Yoga deep breathing. Close you eyes, think of something pleasant (I look at the beach with rolling waves in) and deep breath through your nose but having your stomach breath in as deep as you can, then open your mouth to a shape like you are blowing out candles and slowly breath out until no air left. Then do this again. Try this when ever stress get high and see if it helps. I do it all the time.
Good Luck!!

vex | @vex | Mar 6 9:27pm

Hi, my name is Vex, I’m 28 years old, 29 next month, and am struggling with a recent health diagnosis. Last month I was hospitalized after developing serotonin syndrome, after a bad reaction from a medication, alongside antibiotics I took earlier in the month for strep throat. These medications worked in tandem to increase my serotonin levels an exponential amount, forcing me into this syndrome. After nearly dying, I was put into a medical induced coma, where I slept for 5 days, finally awaking on February 16th (I was admitted the 11th) at 11:00 pm, confused in the ICU. After a couple days I was discharged, but after a cardiology appointment I had this week, I’ve learned I developed stress cardiomyopathy. I’ve been looking everywhere for a support group I can join in person for people with similar medical trauma, but to not avail. I’m struggling a lot with my anxiety, especially with the symptoms of the stress cardiomyopathy mirroring that of a heart attack. I’ve been trying to practice breathing exercises, but I’m not having much luck curbing my anxieties. I just wanted to see what advice anyone has for dealing with stress and anxiety while also navigating a heart condition. Thank you so much for anyone who took the time to read this, I really appreciate anyone who took the time to listen to my story. If you have any advice, I would greatly appreciate it. Thank you so much!
Vex

dbamos1945 | @dbamos1945 | Mar 6 11:45pm

In reply to @vex "Hi, my name is Vex, I’m 28 years old, 29 next month, and am struggling with..." + (show)

@vex: What an awful experience! You want to learn more about the cardiac effects caused by too much Serotonin that damaged the valves in your heart?
I have no medical training; however, I have learned a little about “Carcinoid Syndrome” - a heart condition that my NET disease patients need to be aware of due to Serotonin elevated level heart valve damage.
Mayo Clinic Connect has a group named “Neuroendocrine” I belong to that I have seen discussions on Serotonin hormone elevated levels causing life-threatening “Carcinoid Syndrome”. Perhaps this will help you get needed info?!? dbamos1945

mfouad | @mfouad | Mar 7 6:47am

In reply to @vex "Hi, my name is Vex, I’m 28 years old, 29 next month, and am struggling with..." + (show)

I think all what you need to do to get rid of anxiety is to achieve your necessary regular check ups , let go and enjoy your life
You also need to know that you are now perfect and thank god because you survived.

vex | @vex | Mar 7 8:08am

In reply to @dbamos1945 "@vex: What an awful experience! You want to learn more about the cardiac effects caused by..." + (show)

@dbamos1945 thank you so much, I hadn’t heard of that! I will definitely be looking into that. Thank you!

gloaming | @gloaming | Mar 7 8:44am

In reply to @vex "@dbamos1945 thank you so much, I hadn’t heard of that! I will definitely be looking into..." + (show)

@vex There is also such a thing as 'cardio-rehab' therapy. You might inquire to see if they can offer you some tips/help to get your heart back up to snuff, but methodically and under their watchful auspices.

tillymack | @tillymack | Mar 7 8:52am

In reply to @vex "Hi, my name is Vex, I’m 28 years old, 29 next month, and am struggling with..." + (show)

I believe many hospitals host support groups for various diseases and medical conditions. Maybe a local support group for patients with a history of heart attack or other heart related conditions would be helpful.

Debra, Volunteer Mentor | @karukgirl | Mar 7 10:45am

In reply to @vex "Hi, my name is Vex, I’m 28 years old, 29 next month, and am struggling with..." + (show)

Hello @vex, and welcome to Mayo Clinic Connect.
I posted a link for you to read that you may find interesting and encouraging. Stress Cardiomyopathy is AKA as Takotsubo syndrome or Broken Heart Syndrome.
https://www.mayoclinic.org/diseases-conditions/broken-heart-syndrome/symptoms-causes/syc-20354617
You went through a very traumatic and stressful event! No wonder you are concerned and trying to find someone to talk to that understands what you went through. Just being in ICU can trigger symptoms of PTSD. This is all pretty recent, so you are completely normal wondering if you are going to be okay. No wonder you have anxiety!
My advice to you is to learn as much as you can about this condition and find ways to accept what happened and learn to live your best life.
Do you have a favorite hobby or activity you can do that brings you joy?

isadora2021 | @isadora2021 | Mar 8 7:19am

In reply to @vex "Hi, my name is Vex, I’m 28 years old, 29 next month, and am struggling with..." + (show)

@vex. Goodness grief. I’m so sorry to read what happened to you, and ending up in ICU. I’m not at all surprised you’re now anxious that it could happen again.

I had a look on Mayo Clinic and also found what seems to be the same article. It’s a good read especially what medications can contribute to the syndrome happening.
https://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/symptoms-causes/syc-20354758
I’m on 20 mg citalopram daily for my anxiety (coming up for 20 years now, since my mother died suddenly and unexpectedly from small cell lung cancer). Even though I’m doing so under close medical supervision this too could happen to me if I increased my dose or took other medications that raised my serotonin levels. Wow. It makes sense but I didn’t know.

Speaking for myself (someone who is 4 years in remission from incurable stage 4 appendix cancer myself) and who manages a lot of stress around that, it seems the best way forward is to work closely with your medical team to ensure you avoid combining medications that could land you back in ICU.

It seems you may be one of the people who are more sensitive to high levels of serotonin and have a seriously adverse reaction.

I can understand why you would like to connect with others to see how they now manage avoiding a recurrence.

I hope you can find others on Mayo Clinic Connect.