Another kind of heart attack or Meeting Mr. Lobster and his pot.

Gabrielle6

Member
After a horrible day of vertigo and vomiting, I was taken to the ER for saline infusions. While there my shoulders and jaw started hurting and I notified the attendants right away. After a few tests I was told I would be transferred to a full hospital and a heart attack was expected. Wow! Really? I'm just puking and can't walk straight are you SURE?

Another ambulance ride to another hospital where I was admitted to the coronary unit. After words and phrases like "sudden death" and "quickly" I had an angiogram which puts dye in the heart to read on a screen. The doctor said you have Tokatsubo Syndrome. What, another damn syndrome!

I learned for some reason my left ventricule was stunned, then enlarged and the Japanese named this Tokatsubo Syndrome because the heart resembles a shape of a pot used for catching lobsters. They treated me like I had a regular heart attack and I am still on the meds. I had my 2nd echo a few days ago and after 2 and half months my heart is back to normal. I am not, even for a poor soul that has CFS/ME/POTS/FM. If you can believe this and I know you can, my fatigue and brain fog became worse and it will take time to even get back to my normal sick self for even an average person without these other illnesses.

I am including a recent article from Harvard because I just don't have the energy to explain the whole thing. Still I'm getting from mostly family, it's not a real heart attack, you will get better. I can tell you it's the closest I want to get to a "real heart attack".
 

Remy

Administrator
After a horrible day of vertigo and vomiting, I was taken to the ER for saline infusions. While there my shoulders and jaw started hurting and I notified the attendants right away. After a few tests I was told I would be transferred to a full hospital and a heart attack was expected. Wow! Really? I'm just puking and can't walk straight are you SURE?

Another ambulance ride to another hospital where I was admitted to the coronary unit. After words and phrases like "sudden death" and "quickly" I had an angiogram which puts dye in the heart to read on a screen. The doctor said you have Tokatsubo Syndrome. What, another damn syndrome!

I learned for some reason my left ventricule was stunned, then enlarged and the Japanese named this Tokatsubo Syndrome because the heart resembles a shape of a pot used for catching lobsters. They treated me like I had a regular heart attack and I am still on the meds. I had my 2nd echo a few days ago and after 2 and half months my heart is back to normal. I am not, even for a poor soul that has CFS/ME/POTS/FM. If you can believe this and I know you can, my fatigue and brain fog became worse and it will take time to even get back to my normal sick self for even an average person without these other illnesses.

I am including a recent article from Harvard because I just don't have the energy to explain the whole thing. Still I'm getting from mostly family, it's not a real heart attack, you will get better. I can tell you it's the closest I want to get to a "real heart attack".
Oh yikes, @Gabrielle6 ! That sounds like a real nightmare. It's a miracle they knew what was happening and were able to treat you correctly!

I'm hoping for a full recovery quickly!
 

Empty

Well-Known Member
Your family members sure wouldn't be saying "its not a real heart attack" if it had happened to them!
Good thing is, hearts are very good at healing.
Hope it gets easier @Gabrielle6
 

Gabrielle6

Member
Thanks @Remy It was the Cleveland Clinic I was in good hands. A woman that I know of waited 7 hours in the waiting room of a hospital in a neighboring town with the same Tokatsubo Myocardiopathy.

@Empty We all have heard the three main causes of death to PWC/ME is stroke, heart problems and suicide. Although some men have had this condition mostly it seems to affect woman over 50, some even wonder if the hormones women have save the heart and the men have sudden cardiac death. Something to think about.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
After a horrible day of vertigo and vomiting, I was taken to the ER for saline infusions. While there my shoulders and jaw started hurting and I notified the attendants right away. After a few tests I was told I would be transferred to a full hospital and a heart attack was expected. Wow! Really? I'm just puking and can't walk straight are you SURE?

Another ambulance ride to another hospital where I was admitted to the coronary unit. After words and phrases like "sudden death" and "quickly" I had an angiogram which puts dye in the heart to read on a screen. The doctor said you have Tokatsubo Syndrome. What, another damn syndrome!

I learned for some reason my left ventricule was stunned, then enlarged and the Japanese named this Tokatsubo Syndrome because the heart resembles a shape of a pot used for catching lobsters. They treated me like I had a regular heart attack and I am still on the meds. I had my 2nd echo a few days ago and after 2 and half months my heart is back to normal. I am not, even for a poor soul that has CFS/ME/POTS/FM. If you can believe this and I know you can, my fatigue and brain fog became worse and it will take time to even get back to my normal sick self for even an average person without these other illnesses.

I am including a recent article from Harvard because I just don't have the energy to explain the whole thing. Still I'm getting from mostly family, it's not a real heart attack, you will get better. I can tell you it's the closest I want to get to a "real heart attack".
Whoa!

It does seem like a miracle that they got this right.

I'm not surprised that you're still feeling the effects of it...Have they given any reason at all why you had this sudden attack?
 

Gabrielle6

Member
@Cort While hospitalized about 6 docs came in and asked me what happened to me.
Did someone close to you die, were you assaulted, heard bad news? I said no but I had to sell a house I loved for financial reasons and moving was traumatic. They said since it was 4 months ago it couldn't be the reason.

They call this another name, Broken Heart Syndrome and I thought since 1988 when I first got CFS/ME when has my heart not been broken.
 

bobby

Well-Known Member
@Gabrielle6 what a scary experience!! I can totally imagine that you're still not fully recovered - as far as PWME can recover... I've heard of broken heart syndrome, but not of lobster pot syndrome. Interesting name!

Did you mention ME/POTS/FM to the doctors in the hospital? I'd expect them not to take it into account, even though from recent research it looks like we have abnormalities in the heart. I wonder if there's a connection...
 

Gabrielle6

Member
@bobby I went to a POTS clinic at the main campus and saw docs over the years there for ME/FM, they notified the POTS doc of this incident but I haven't heard anything. The coronary unit did give me plenty of saline because my BP was so low and I had it in the ambulance also. Actually that's all I thought I needed when I went to the ER.!!!

Nobody even my cardio mentioned any comparison between my other conditions (like small heart) and the Tokatsubo Syndrome.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@Cort While hospitalized about 6 docs came in and asked me what happened to me.
Did someone close to you die, were you assaulted, heard bad news? I said no but I had to sell a house I loved for financial reasons and moving was traumatic. They said since it was 4 months ago it couldn't be the reason.

They call this another name, Broken Heart Syndrome and I thought since 1988 when I first got CFS/ME when has my heart not been broken.
No kidding...hey this "heart attack" or whatever is a breeze compared to having ME/CFS. At least most people get over it.

My two favorite non ME/CFS recovery stories:

My brother in law's heart gets attacked by a virus. He suffers his first heart attack in the lobby of the hospital and multiple attacks thereafter. He is put into intensive care with machines keeping his heart going, his lungs going etc. Everything has to be maintained by a machine. The wait is on to see if his body can fight off the virus before he gets done in by another virus that works its way into his body by the machines somehow. .

It takes weeks. Finally they have to take him off the heart machine and his heart keeps on ticking....Ten years later he has had no after-effects at all; he regularly mountain bikes and is in great shape...

A friend from childhood falls down the stairs. He is left paralyzed but begins to work his way back. With a month he is with his crutches walking several miles a day - more than I could!. He completely recovers...

I don't know what happened with ME/CFS!
 

Gabrielle6

Member
@Cort I agree but you don't want to have this with ME/CFS/FM/POTS because I have very few vertical hours and women I spoke to thru a Takotsubo forum haven't got over the fatigue, depression (bad) and mind fog for 7 months. Also you can get this 3 times!

But I know what you mean. I'd rather have this once be done with it than go through 28 years of ME/CFS.
 

bobby

Well-Known Member
@Cort amazing how much the human body can take, right? it can bounce back from the most extreme situations! that is why I'm convinced that in ME there is something very, very seriously wrong on a very deep physical level. otherwise we'd bounce back to health at one point or another.

if only more doctors were willing to take a look at the reality of it... I think they could learn a lot about the human body and how it actually functions! cause I don't think we really know that yet, even though we think we do.
 

Beth from Oz

Active Member
@Gabrielle6 I'm sorry to hear that you are having such a hard time of it. You have my heartfelt empathy and warmest regards.

A few years ago I had a bout of pericarditis. The pain was horrible, I can't imagine how awful a full heart attack could be, no matter how unusual. Thing is, I was sick for months with it, but I didn't want to go see the doctor because I was afraid he would just say it was anxiety. Luckily though he was a decent man who was thorough with testing.

I'm sorry to hear about your unsympathetic family. It always amazes me how strange people are around illness. My poor father was hospitalised recently because he kept falling over. They found he had fluid on his brain. Yet the rest of our family insisted he was faking it, and falling over for attention.

@bobby I agree. There has to be a deeper reason for this level of disability. If I was a doctor I'd love to study this disease just out of plain curiosity. If we studied me/cfs we could gain so much knowledge.
 

bobby

Well-Known Member
If I was a doctor I'd love to study this disease just out of plain curiosity. If we studied me/cfs we could gain so much knowledge.
I think this shows that doctors are not scientists. A real scientists is driven by curiosity and the urge to learn and understand, no matter what. I keep wondering if they can't find what's wrong with us only because they aren't looking at the problem with an open mind, ready to accept things that might jeopardize the entire framework of knowledge that we have built so far. I guess it's too much for them to handle atm?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@Cort amazing how much the human body can take, right? it can bounce back from the most extreme situations! that is why I'm convinced that in ME there is something very, very seriously wrong on a very deep physical level. otherwise we'd bounce back to health at one point or another.

if only more doctors were willing to take a look at the reality of it... I think they could learn a lot about the human body and how it actually functions! cause I don't think we really know that yet, even though we think we do.
I agree....I wonder if this does mean that we are just depleted at a very deep level....aka Naviaux and Davis's work?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think this shows that doctors are not scientists. A real scientists is driven by curiosity and the urge to learn and understand, no matter what. I keep wondering if they can't find what's wrong with us only because they aren't looking at the problem with an open mind, ready to accept things that might jeopardize the entire framework of knowledge that we have built so far. I guess it's too much for them to handle atm?
Way too much to handle for the average doctor. A researcher with a sick daugther said one of the things he couldn't understand was the sheer lack of curiosity from doctors and from researchers...He thought it was a fascinating puzzle.
 

bobby

Well-Known Member
I wonder if this does mean that we are just depleted at a very deep level....aka Naviaux and Davis's work?
I think so far their theory of mitochondrial dysfunction is very interesting. But the real question is: why aren't the mitochondria functioning? We're at a stage where researchers are finally pinpointing systemic dysfunction, but what is the cause of that? it wouldn't just happen out of the blue...

In other illnesses there is dysfunction that is destructive. Without treatment you will die. In us there is dysfunction that is utterly disruptive, but most of us survive. In a very pitiful state, that is, but it seems like there is no major physical destruction. can't wrap my head around why this happens! it doesn't make any sense...
 

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