It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Heart Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-24-2009, 11:24 AM   #1
Newbie
(female)
 
Join Date: Jan 2009
Location: England
Posts: 6
PeaceandHarmony HB User
Brokenheart Syndrome.

Has anyone been diagnosed with Brokenheart Syndrome. ?


I am 48 and had no warning signs until one day after working physically very hard all day, I had a pain in my left shoulder and my throat. I didnt think it was anything but a strained muscle and went to my Doctors.....had an ECG and according to that I was having a massive heart attack but the Doctor pointed out that I couldnt possibly be as I was not feeling that ill. I was rushed in to Emergency by ambulance and everything had gone back to normal. The next day they said that I should have and angiogram to see what was going on and was asked if I had received a bad shock on the day of the attack, I said no and then the dye was injected and was told excellent news your arteries are all clear and you have brokenheart syndrome.

Great, I went back to the ward and got my hubby to look it up on the internet, which he did and it says there are no long lasting bad effects and the heart makes a full recovery.

Then, on the Doctors rounds they just seem to push aside what the specialist had diagnosed and said you have a very small thickening on an artery and that is had caused mild damage to the heart, I did not have a complete blockage and it was felt that it was restricted blood flow. On my going home sheet, it said Brokenheart syndrome treat as NSTEMI so I am really confused and have a 6 month wait before a follow-up with the specialist.

They have really confused me and it would seem that most Doctors out there dont seem to know about Brokenheart syndrome and I just dont know what to accept, the first diagnosis or the second, the hospital has really confused me and I am more worried that they may just be getting it wrong as the Doctors dont seem to want to accept Brokenheart Syndrome.

Has anyone on here been diagnosed with Brokenheart Syndrome and what help and advise have you received ?

 
Sponsors Lightbulb
   
Old 01-24-2009, 06:53 PM   #2
Senior Veteran
(male)
 
Join Date: Jul 2008
Location: Canada
Posts: 999
harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: Brokenheart Syndrome.

Hi there, you seem to have had a tough couple of days!

It's not that a lot of doctors don't know what Brokenheart syndrome is--it's that doctors who aren't trained in internal medicine don't know what it is. Most family doctors probably haven't heard of the condition.

Broken heart syndrome or "takatsubo's cardiomyopathy" is theorized to happen when there is a huge rush of adrenaline in the body (often it is brought out by extreme, acute stress) which ends up causing massive stretching of the left ventricle and all of a sudden the heart doesn't pump very well. In many cases, this reverses and isn't a big problem--sometimes, though, patients can go on to requiring a heart transplant. Because you are healthy enough to post on this board, you are obviously NOT in the severe heart impairment as a consequence group.

Because takotsubo's is so rare, when a patient presents with symptoms like you did and biochemical evidence of heart damage (which I'm assuming your family doctor was seeing on your bloodwork) it's better to err on the side of treating as an NSTEMI. If you treat someone for 48 hours as an NSTEMI and the person does NOT have an NSTEMI, there is not a lot of risk.

Do you have risk factors for heart disease? High blood pressure? High cholesterol? Family history of premature heart attacks? Smoking? Diabetes?

 
Old 01-25-2009, 11:29 AM   #3
Newbie
(female)
 
Join Date: Jan 2009
Location: England
Posts: 6
PeaceandHarmony HB User
Re: Brokenheart Syndrome.

Thank you for replying, yes takotsubo was diagnosed to me at the first instance but when my hubby looked it could be called brokenheart syndrome and people seem to know that more so.......I was also told that I had high colest, 6.5 and I could quite understand that as to be honest I have not been eating that great over the last few months, I am a small build and apart from the odd cig. socialising I dont smoke either. I considered myself very healthy and walked atleast 2 hours a day with my dogs, I have 3 teenage sons and this was a bolt out of the sky, a big warning. It is 8 weeks on now, the various tablets I am on has caused some problems and I was told that the betablocker was causing this. My Doctors halved the dose and I really become unwell, then looking at the tablets it said it helped reduce adrenaline which would go along with the diagnosed condition and I went back on the higher dose and feel quite well, just having to try and get my head around it all and as my husband keeps telling me I have got to stop thinking of myself as a patient and get back to normal.

My Doctor is trying to get me in quicker for my follow-up appointment because I think he is confused as well, he has never heard of it either.

Thank you for your support.

Jules.

Last edited by hb-mod; 03-30-2010 at 03:58 AM. Reason: Removed Quote of immediately preceding post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
Old 01-25-2009, 11:41 AM   #4
Senior Veteran
(male)
 
Join Date: Jul 2008
Location: Canada
Posts: 999
harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: Brokenheart Syndrome.

Hi again,

Whenever people are told they have heart disease, almost everyone has the same answer, "I'm as healthy as a horse. I eat well, I exercise..." etc. etc. The thing that is forgotten is that, while a person who eats healthy and exercises decreases his/her chance of things like heart disease, it doesn't fully negate the risk. There are all sorts of different predispositions to having smaller caliber coronary arteries, and also a higher predisposition to depositing plaque in the arteries...those types of risk factors are NOT modifiable by diet and exercise.

Now, takotsubo's cardiomyopathy can happen in response to a true NSTEMI, but other times when it happens (which is very rarely) it can be from something as simple as extreme fear.

 
Old 01-25-2009, 11:50 AM   #5
Newbie
(female)
 
Join Date: Jan 2009
Location: England
Posts: 6
PeaceandHarmony HB User
Re: Brokenheart Syndrome.

Thank you, I agree, it can also be from a shock and stress, I have been under alot of stress for about a year before this happened, family/husband worries and like most, money worries, I seemed to carry it all on my shoulders and my Hubby just didnt seem to think he needed to take some of the responsibility, he tended to think, he went to work and that was his share, I did everything else, although I also worked !

The more I read up on this condition and heart attacks it does seem that apart from the usual known things for causing it, you are right, some people can also have other reasons for heart decease which would happen even if they did everything to to avoid problems.

Its lovely to talk to you as you know alot about it. Thank you.

 
Old 05-14-2009, 02:05 PM   #6
Member
(female)
 
Join Date: Jan 2007
Location: Ventura, california
Posts: 91
linda1962 HB User
Re: Brokenheart Syndrome.

OMG! FINALLY SOMEONE DIAGNOSED WITH THIS THAT I CAN TALK TO!!!

Sorry but I have been posting here for just over 4 years now (when I had my episode) looking for someone else with this diagnosis. You are THE only one to date!!!!! My episode occured on March 7th, 2005.

I have done so much research and have been given the all clear by my wonderful cardiologist with one more follow-up to go. John Hopkins did a study on this years ago too. But you probably found that one as well.

I had thought I was having a heart attack. I won't go too detailed but went to the Emergency Room where they were convinced that I had an anxiety attack. After the second blood test they sent me to a different hospital with the idea that I had an attack due to my enzyme levels. They did the angiogram and said the "good news" is that you have fat, clean arteries. The bad news is your heart has suffered trauma - but no necrosis. That cardiologist never once suggested brokenheart syndrome - he thought it might have been a clot or "something" and said sometimes they just don't know. I was 44 at the time and my son was 3 1/2 - I could not live with that "gee, I don't know" response so I went for a check-up with an internal doctor who did the blood work-up and referred me to a wonderful cardiologist - after 20 minutes in his office, a few tests and reviewing my chart he said "you're a classic case of Neurohumerl Myocardil Stunning AKA Brokenheart Syndrome. He handed me some paperwork on the studies that had been done and put me on medication (which I am no longer on as of the middle of last year).

I have a really long story and find it hard not to be too wordy......

It would be lovely to talk to you more about this if you're interested. Do you know what precipitated your attack?

How are you doing today? Was there any further word on the thickening artery issue? Have they given you a different diagnosis since then? Did they check your iron level and, lastly, were you on or near your menstral cycle or having a hormone increase or desrease at the time of your episode?

REally looking forward to hearing from you.

Take care!

Linda

 
Old 05-31-2009, 01:19 PM   #7
Newbie
(female)
 
Join Date: Jan 2009
Location: England
Posts: 6
PeaceandHarmony HB User
Re: Brokenheart Syndrome.

Hi Linda,

Its good to hear from someone with Brokenheart Syndrome because like you say its not that common ! I eventually did go to the Specialist 6 months later after the attack and he confirmed that I did have BHS and that it had fully recovered. There was no thickening and my heart was healthy like yours. Where I live the Specialist said he gets about one a month diagnosed with it and unfortunately they do not have much info on it, which iam sure you will agree, is not very reassuring and I think being so pleased that it wasnt a heart attack I didnt ask him all the questions I should, although I can only assume he wouldnt have been able to answer them. My main worries were that if it occurred again, but going through the internet for infomation it would seem the answer to that is no. I have spent hours on the internet trying to find out more about it and my own GP had to look at the same sites I have and he seems no wiser.

The only thing I am puzzled with is that I remain on most of the tablets they gave me when I left hospital, I was told by the specialist that they dont know how to treat it and go along the treatment as if it was a heart attack, so its interesting to see that you dont have any more tablets. I am to remain on an asprin and Simvastin and he questioned about the others I was taking but seemed to be scared to take me off them just incase I suppose, I have another attack. Iam quite happy at the moment to be on some of them because I am once again going through a stressful moment with my cat being diagnosed with Cancer and I think I am remaining calmer but its still a worry.

They say with Brokenheart Syndrome it effects Menopausal women around the age of 50, Iam 48 and am going through menopause and Iam sure its something to do with it but again the Doctors cant confirm anything.

I have accepted it and put it to one side in my head so as not to keep worrying about it and enjoy my life but like you say it creeps up on you sometimes and you worry when you have children and are young enough to go out and have a great time without having this hanging over us.

It has been just over 6 months ago this happened to me so it is heartening to read that you had the attack a few years ago and still around ! I have worked out that it seems to be a surge of adrenalin that seems to put the heart in shock but the Doctors dont seem to know and then again could it be to do with our hormones, although you are quite a bit younger than I am to be going through that now and especially having a really young child.

I wondered if there was a way we could talk though private e.mail but Iam not sure how, I dont want to give it out on a public forum.

Its wonderful to hear from someone at long last and look forward to hearing from you again.

Take care
Jules

 
Old 06-03-2009, 01:45 PM   #8
Member
(female)
 
Join Date: Jan 2007
Location: Ventura, california
Posts: 91
linda1962 HB User
Re: Brokenheart Syndrome.

Hi Jules!

Well, as you've found out there is no known treatment BUT they say it rarely, if ever, happens again.

I would so love to talk to you more - and by the way, I had my episode (my cardiologist said I didn't have an attack and not to refer to it that way) when I was 44 and am now 47. So I gave you the wrong year - it happened in 2006 not 2005. My son was 3 at the time and will be 7 at the end of next month - I just waited to have kids a little longer than most. So we are VERY close in age (Linda 1962 - my name and birth year).

Please email me at * email address removed by hb-mod, moderator * .

By the way, I married a man from London - wouldn't it be funny if we new the same people?

Last edited by hb-mod; 06-03-2009 at 03:12 PM. Reason: Please don't post contact info, such as email address, or commercial websites, per Posting Policy.

 
Old 07-23-2009, 03:58 PM   #9
Member
(female)
 
Join Date: Jan 2007
Location: Ventura, california
Posts: 91
linda1962 HB User
Re: Brokenheart Syndrome.

I wanted to let you know that I have now been off meds for about a year. My cardiologist doesn't have any information that the meds will prevent a future attack. Are you on meds?

I also had an inverted t-wave (I think that's what it's called) for most of the first year after my episode. Have you been able to view your EKG's?

Hope you are well,

Linda1962

Last edited by moderator2; 07-23-2009 at 08:55 PM. Reason: please, no discussion of moderated posts

 
Old 02-11-2010, 06:10 PM   #10
Newbie
(female)
 
Join Date: Feb 2010
Location: greenwood in
Posts: 3
fromother HB User
Re: Brokenheart Syndrome.

Broken Heart Syndrome, that is the American name for Takotsubo, a doctor in Japan name it. My son nearly died 2 years ago from this. It is very rare for a young person to have this, he was only 28 at the time. It is more common in older women and they do not have it as severely and usually recover fast. When he first went to the hospital they thought he had pneumonia, but it actually was the left side of his heart, the side that pumps the blood out, expands and can not pump the blood out as fast as it is coming in. So his lungs did fill up with fluid, that is why they thought he had pneumonia. Long story short, he was placed on a heart pump, ventilator and meds to keep him in a comma to keep him alive because they had no clue as to why he was so sick. After a few days they informed us he was not going to live, but wanted to transport him to a hospital with a heart transplant unit, just in case a heart became available. So they transported him to another hospital by helicopter. There was a doctor there that had seen this before, Takotsubo. No doubt in my mind he would have died if it was not for her. They kept him alive by machines with the thought his heart would repair itself. After 5 days he started to show signs of improvement. As of today his heart has no lasting damage. We are very blessed that he lived through this. < edited >

Last edited by hb-mod; 02-12-2010 at 01:26 AM. Reason: Please read and follow the Posting Policy.

 
Old 03-01-2010, 05:55 PM   #11
Newbie
(female)
 
Join Date: Mar 2010
Posts: 2
maggierj HB User
Re: Brokenheart Syndrome.

Well hello from another broken heart sufferer. my experience to date has been that the three internal medicine people i have been exposed to had initially not heard of it and secondly really do not know what to do about it. i would love to find a doctor who has had some experience with it. it has been a very frustrating two weeks since the episode. at one point they thought i had pneumonia and flu. i have had bouts of a very low pulse and apparently have an extra heart beat every four which is new and my cardiogram has changed slightly since the event. i am the picture of health on paper..

i too had the diagnosis during the angiogram and the doc at sunnybrook recognized the syndrome. Thank Goodness for that. i have had one internal medicine person try to call it something else because there wasnt one major stressor that occurred. So if there was a clinic that was looking at the syndrome, studying it i would happily get involved in this. the really ironic thing, it happened on Valentines day

 
Old 03-02-2010, 05:40 PM   #12
Newbie
(female)
 
Join Date: Mar 2010
Posts: 2
maggierj HB User
Re: Brokenheart Syndrome.

what hospital and what doctor saw your son. my episode was just this valentines day and i spent a week in icu, i still havent had much contact with anybody who knows much about it all. I am looking for a doc or clinic that is doing some research on this and that follows people as i am beginning to believe that it may be more common than they know at this time.

 
Old 03-02-2010, 07:40 PM   #13
Newbie
(female)
 
Join Date: Feb 2010
Location: greenwood in
Posts: 3
fromother HB User
Re: Brokenheart Syndrome.

I hope this will help give you a little peace of mind. It will be two years in May since my son had his heart problem. As of today he seems to be ok. He is taking meds to keep his heart from beating to fast. He also had problems finding a doctor who knew anything about this. I wish there was more information I could tell but as of now it seems his heart repaired itself and hopefully it will never happen again. They think a rush of adrenalin from his own body may have attacked his heart while he was skateboarding. The doctors will admit they really do not know why it happens.

 
Old 03-02-2010, 07:43 PM   #14
Newbie
(female)
 
Join Date: Feb 2010
Location: greenwood in
Posts: 3
fromother HB User
Re: Brokenheart Syndrome.

I have forgotten the name of the hospital, in was in north Chicago. If you live in that area I can find out the name of the hospital and what doctor he sees.

 
Old 03-30-2010, 03:22 AM   #15
Newbie
(female)
 
Join Date: Jan 2009
Location: England
Posts: 6
PeaceandHarmony HB User
Re: Brokenheart Syndrome.

Just managed to get on after getting a new password as it would seem Brokenheart syndrome is not still known about that much. Since my experience in November, 2008, I have been lucky to have been able to get on with my life. After finally seeing my Specialist he gave me his complete go ahead that my heart was perfectly healthy and to go and enjoy my life as normal. I am now only on 70mg Asprin a day and thats it I still keep my betablockers on one side because this reduces Adrenaline and if I feel that I am stressed out at all I will take a low dose for a couple of days. My Doctor has completely changed his attitude and although he hadnt heard of Brokenheart Syndrome until I was diagnosed with it but he personally got in touch with the Specialist and now is confident in treating it.
I will get back my batteries are low on the computer so hope this gives some reassurance to anyone.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
serotonin syndrome lennylonglegs Bipolar Disorder 8 01-22-2010 11:55 AM
down syndrome help_me_please1 Down Syndrome 8 01-15-2007 09:15 AM
variant angina georgi3 Angina 14 09-18-2006 07:26 PM
my doc thinks central cord syndrome, not rsd pattihabs Reflex Sympathetic Dystrophy (RSD) (CRPS) 7 06-29-2006 01:38 PM
Distinguishing Chronic Fatigue Syndrome from Neuroborreliosis CFD 333 Lyme Disease 30 05-05-2005 10:55 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 02:57 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!