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Recently diagnosed with takotsubo, I was in the hospital on a heart pump for four days and four more recuperating then sent home, still having chest discomfort and doctors don't seem to know why or just how to treat.
Has anyone had the same symptoms?
Dizziness Aspirin Sweating Cardiomyopathy Anxiety Pain Coreg Heart attack Zocor Stress
I have a great doctor at the Hospital of the University of Pennsylvania where I have been receiving excellent care since my diagnosis in April.
I too continue to have chest discomfort and am currently wearing a halter monitor. I hope to know next steps when I return to the doctor in a couple of weeks.
It turns out that Takotsubo cardiomyopathy is an extremely rare condition. I never heard of it before myself and have found cardiologists and ER doctors that never did either.
I would welcome a chance to hear about your experiences.
Linda
I was just diagnosed with this after knowing for sure I was going to die this past wednesday. It only took them 24 hours to figure out it was this rare condition. At least I had a cardiac catheter and found out I have no blockages! The only good thing to come out of this. I can't sleep at night b/c I keep reliving how scared I was, and with much exertion at all, my heart starts pounding and hurting again. I know I am supposed to 'take it easy' for the next 30 days and hope that all will return to normal, but for right now, I feel anything but normal!
Been there. Take a deep breath and find something to keep busy. I read and started working on hobbies. I have recenty returned to work and feel great. I started to run and I am planning to run in a 10mile race in May with good friends that have supported me along the way.
I have been looking for studies of the condition. It was a terrible experience. I would love to contribute so that others don't have to experience what we did.
Sounds like we had similar experience. Please feel free to share. There aren't a lot of us out there who have been through this. I too had clear arteries. It was a hard way to find that out!
Good luck.
I was diagnosed with hyperthyroid takotsubo and my ef was 15%. It has came back to normal now but I have distolic dysfunction stage 1. I still get tired quick and still feel like my heart is flipping around but they told me unless it does it all day, don't worry about it. Thats easier said than done. Nighttime is the worst for me. It seems if I keep busy it takes my mind off of it. My doctor told me I was lucky to come out of it so I guess I better count my blessings.
Robinlynn
I'm so sorry for what you have been through. I feel as if I may be suffering the same, after losing my husband to another woman, having my brother die suddenly this summer at the age of 48 and moving to a community not knowing a soul and suffering from a multitude of other ailments.
Linda, who are you seeing at Penn? I live in Bucks County and have seen an endocrinologist at Penn and was wondering what wonderful Cardio you found there.
The local drs in my area are useless in my opinion.
I wish all of you the best,
Rene
Robinlynn,
I think we should count our blessings every day! I am sorry though that your doctor put it to you that way! Seems a little cold! I share everyone's frustration that there is not a large amount of information 'out there' regarding tako tsubo or broken heart. Whatever it's called, everytime I feel a tightness in my chest I start worrying all over again. The rate of recurrence is very low, but then again, I think to myself, the chance of ever getting this is really small so with my luck..... :)
Is knowing my EF something I should ask my doctor when I go back to see him? They gave me an echo on Thursday a.m. at the hospital and then came in and told me I had this tako tsubo thing. Next day I went home with a boatload of prescriptions. I had a follow up one week later for labwork which came back normal. I don't go back until 10/26 for another echo which I am assuming is to 'see' the heart and make sure it's back to it's normal shape. Right now, I have dizziness when getting up because my blood pressure is hovering around 100/51 as of yesterday.
Linda: I'm glad you replied!! If you can run a 10k then there is hope for me! I am glad you have friends to support you. Most of my friends seem to think it's no real big deal because it wasn't a heart attack and while my family did pamper me for about 3 days, the pampering is over and it's back to mom doing it all. I do try to delegate more items, but sometimes it's just easier to do it myself. Maybe that is what got me in this mess to begin with!
Angela-
My name is Lilly. I had the EXACT same thing....it's very scary. I was up almost every night worried about it and causing myself way more anxiety that I needed to. It's something you go through, it DOES get better. I had my heart attach on Sept. 8 2008, it's been a little over a year and things do get better, sometimes the anxiety is there. My heart attack was primarily caused by stress (I have a genetic predisposition for this condition) I take anti-anxiety meds and this helps a lot. I love reading everyone's stories because I feel like I'm not alone :) Thanks everybody!!
I see Dr. Joyce Wald at Penn. I think the world of her. I would consider the Philadelphia hospitals. Dr. Wald saved my life. I started at the local (NJ) hospitals.
I am sorry that you have been through so much. We take on this sort of emotional stress. That is what gets most of us into this situation. I find redirecting my energy into other things will (hopefully) get me out of it.
I had some minor surgeries before "my event", but never considered myself a candidate for a heart ailment. Now I feel compelled to talk to others about this. Thank you all for responding.
Linda
Thank you so much Linda for the info. And thanks for your concern.
I hope that you are feeling well now.
May I ask what your symptoms were?
Thank you so much.
Rene
AngelaNC,
I have the same problem with some family members thinking its not a big deal. If it was them I think it might be a different story. They put me on coreg and I've always been on blood pressure medication so my blood pressure was dropping when I would run around too much. They had me lower my one dosage. They want my heartrate to be around 60. Its been 7 months so you would think I could just move on but its like you said if you get a pain or if I cough I think its happening again. Thanks for listening. Robinlynn
Robinlynn,
They just reduced my coreg when I complained about the dizziness. I've never had high blood pressure, or any other health issue, other than being overweight. No one has told me what my heart rate should be, but it's been hovering around 50. I find it amazing that even on the american heart association website if you search tako tsubo, there is nothing there!!
I guess I am just going to hang out until 10/26 and then for the follow up on 11/4 to see what the doctor does and says. I feel lucky that they figured it out so soon.
You can always count on me to listen! Feel free to write me anytime!
Angela
I didn't have any issues before April 23. I stood in front of 50 people to give a presentation and went blank. During that afternoon, I would be fine one minute and slurring my words, pain down my arm and dizziness the next. I was pretty lethargic by the time I got to the first hospital 5 hours after I first had symptoms. They excused it as anxiety, until my husband forced them to give me an EKG. After that I went into respirtory failure, etc...... I woke up 4 days later at the University of Pennsylvania. I spent 2 weeks in the hospital and 3 months recovering before I went back to work full time.
How about you? I don't know any one else that had this condition. Were your symptoms similiar?
I heard a story about a 50 year old woman- her husband gave her a surprise party and she suffered an episode from the excitement.
I understand that it isn't likely to happen again. I find that encouraging. While I am more sensitive to little pains, etc. I don't want to let that rule my life. I did learn from this experience that life can be short. I hope to enjoy it.
What are your doctors telling you about this condition? I had to ask a ER doctor to look it up on the internet. I now carry a description just in case I need it again.
This conversation is helpful. Thank you for sharing.
Linda,
My symptoms seem to have been a bit more sudden. On 9/16 I was at dinner with my husband and son when I just suddently didn't feel right. Then my chest had this deep pressure in it. I couldn't eat and sat at the restaurant crying. In hindsight, I should have gone to hospital then, but didn't. On 9/17, HUGE fight with hubby...not typical of us..but stressed all weekend over it. Then on 9/23 just as I was feeling back to normal, I was sitting on couch and felt the pressure in my chest again. Within 5 minutes I went in and told my husband that the pain was back. By then my oldest daughter was home and he asked her to take me to the ER. Before we could even get out of the neighborhood I told her to take me home and I called hubby to say call 911. I was at the point of hyperventilation, felt like I couldn't breathe, chest pain and pressure was intense and I was sweating profusely. I couldn't even get out of the car, the EMS got me out and based upon EKG, thought I MIGHT be having a heart attack. By the time I got to the ER I felt better, but sinus rhythm was off so they said I needed a cardiac cath. That showed no blockages but that my heart was not functioning normally. They admitted me to the cardiac care floor, hooked me up and scheduled me for an echocardiogram the next day. I spent the whole night with chest pain and pressure and with a horrible nurse who yelled at me that there was no way I was having a heart problem b/c my EKG was normal, I had no blockages and my blood pressure was fine as well. Needless to say I didn't press that nurse button again that night. Next day after the ECG, doc came in and said it was tako tsubo or apical ballooning. They kept me one more day and I went home on the 25th. I'm on a water pill, coreg, benekar (sp?), baby aspirin, zocor etc. That is pretty much how my episode happened in a nutshell. No traumatic stressful event immediately prior to the incident. I think I'm just an overachieving mom who does too much for other people and not enough for herself. Today, i'm having chest pains again and i'm trying to not panic. Not serious ones, but enough that I know they are there and it's bothering me into my arm. When do i panic, or do I panic at all? This is all confusing! Best of luck to you!
Also forgot to say that my doctors have not told me anything about this. They said what it was, that it was rare, that in about a month I should be back to normal. What scares me is that I can't find many people who have gone through this and those that have, don't seem to ever really go back to 'normal'. I never took meds for bp or anything before, now i'm worried i'm going to be on meds for the rest of my life.
:) Hang in there!
Hello out there! Like many of you, no one I knew had ever heard of this condition when I was diagnosed in March 2008. I was lucky to get a cardiologist that DID know what it was. Since then, I routinely check Google for any new research on this condition. This website was one of the more recent.
http://www.news-medical.net/news/2009/03/29/47467.aspx
Finding this website offered me the first opportunity to actually communicate with someone else who had this same heart event. I am doing great. I continue to be on the same medications since the hospitalization in 2008. I hope all of you are feeling less alone with this condition now - I know this website helped me.
Thanks for the website link! I have been spending a lot of time looking for information.
I appreciate the posting. It surprises me when I read about the circumstances that are reported. This article is the closest to my experience. I was first reported as having anxiety and then, a heart attack and then,....................... It did happen in the spring.
Has anyone checked with their cardiologist to see if there are any current studies underway for our condition? I did. My doctor does not know of any.
It is nice to find this unique sisterhood. Thank you all for sharing.
It did almost feel like a panic attack the very first time I had it happen to me. Mine, I guess was outside of the normal spring summer timeframe. I don't have another appointment with my cardiologist until 11/4. I'll ask him then and definitely let you know what I find out. There is a John Hopkins website that had some good information on Tako Tsubo, and they mention having a registry for patients, but no link exists yet. I'm on my laptop so I don't have the link to post, but I will hopefully when I am on my desktop next (kids have hijacked it!) Take care and I will try to keep you posted on the study issue.
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