Guess I should have done a search on here before asking a stupid question, but I'm this far in and may as well proceed.

Last time I shocked (April 11), I shocked hard.  Here is the thing, I have been trying to track down the records from EMS because the E.R. records show me only being HYPERtensive, this is a first for me, but so is the rest of what ensued on this occasion.  

I started to come out of it (meaning I had the uncontrollable shakes I know a lot of you shockers have had following an episode) when out of nowhere this E.R. Doc says he is rushing me up to cardiac catheterization because I'm having an acute M.I. WHAT????  He tells me my troponin and cardiac enzymes are very elevated and orders another EKG.  This EKG shows an elevated S-T segment (in other words I'm having an anterior wall M.I.).  Great, heart attack on top of everything else  

I was in disbelief and finally thought it prudent to call my wife and let her know where I have been all morning.  10 minutes later I am on my way up for a cardiac cat.   Anyway, suprise, suprise, not only is there no blockage, there is not even much plaque to speak of (lipid absorption doesn't work so well in me) and the cardiologist diagnosis' me with stress induced cardiomyopathy, or "broken heart disease" which it is called (I am a big softy!).  

Fast forward to last Friday, my hematologist calls and tells me it wasn't stress-induced cardiomyopathy, but it was Kounis Syndrome (GREAT another disorder to study up on).  It seems to be basically, an allergy induced heart attack.  Low and behold, while going through the literature I find that our own Dr. Theoharides has co-written a paper on it.  So, back to the original question.

Have any of you been diagnosed with this????


Mike

Well, I don't have it, that I know, but I see you answered my question here, that I asked on your intro thread, to say more about Kounis. So sorry to hear what happened!

I am not a shocker, but a leaker. However, I did have a recent episode of anaphylaxis where my blood pressure shot up, along with the tachycardia. The ER, of course, thought I wasn't having anaphylaxis, though my throat was closing, I was disoriented, and had the shakes and chills as it wound down.

I also had a recent trans-cranial doppler looking at my cranial arteries. The tech told me my arteries were "weirdly clean". He explained that everyone has at least some plaque build up as they age, but I have none, at 56.  I DO get migraines, which are spasms of the arteries in the brain, and abdominal migraines, which are spasms of the arteries in the abdomen, and had been having chest pain as well, which I thought might be spasms of the coronary arteries.  I don't have any proof, but they have all been helped significantly by high dose antihistamines, though I haven't yet been diagnosed with a mast cell disorder.

Don't know if any of that is useful to you, but it is interesting to me to see the commonalities, and sometimes the details help explain things.

Yes, I have those extra pounds, no exercise, and while I don't eat sugar or grains, I eat plenty of good quality saturated fats, meat, cheese, and other proteins. My cholesterol isn't quite as low as yours, but I have a few years on you, and it is still well within range.

You believe it is because you don't absorb lipids? I never thought of that. Do you have symptoms of deficiency?

I believe the peripheral neuropathy I have may be due to arterial spasm, as a heating pad relieves the pain enough to sleep. Again, since starting antihistamines, that pain has improved, though not as much as other symptoms.

I read one of Dr. Theoharides articles about Kounis.  Now I'm wondering whether this should affect what we do at the ER or tell the EMTs if we're hypertensive and/or having tachycardia.  Should they do an enzyme test?  Pump us full of pred and antihistamines?  Skip the epi?  Is this why some people have heart events when they use epi?  Enlightening, but confusing.

I didn't see it, but that's good to know.  It might be good to check to see if the epi in the ER has anything else in it.  I had no idea that IV Benadryl has a preservative in it until Ramona told me.  That's why I had lung burning and a throat spasm when they gave it to me IV.  Oral is no problem.

For leakers, there is a slow acting epi that I had last time I was in the ER.  It's administered under the skin and is absorbed over 10-15 minutes.  I wasn't in total shock, but I had tachy (160bpm) and was hypertensive (170/??).  It worked in about 5 minutes.  Not recommended for shockers, but it seemed to be easier on my body than the blast they usually give me.

What is in raw fruit and veggies that causes a problem?  How long do you have to cook them before you can eat them?

I hate to be the wet towel here, but HOLD ON EVERYBODY!!

I know we all tend to get really gun shy with things and go jumping to conclusions based upon one or two people saying things, but let's not take this Kouris Syndrome too far.   I've been talking with my cardiologist about some things going on with me and my aneurysm and such and he's put the breaks on me.  There's research coming out showing that MC mediators may have a role involved in aortic aneurysms.  Well, he's helped me gain some balance here and although some of the recent research supports this, it doesn't exactly make it truth yet.  It's still just suspicions and theories and until they can find more information and understanding, we masto patients can't take it out of contaxt and make declarations like every masto patient is going to have aortic aneurisms!  

It just doesn't work like this!!!   There may be some connections between the histamines and other mediators and this Kounis sydrome, etc.  But this doesn't mean that masto patients are automatically undergoing this or have it just due to the higher histamine levels we have in our bodies.

How can I say this?   Well, researchers have proven that there are indeed MCs present in aortic aneurysms.  However, that does not mean that just because I'm a masto patient with believe neoplastic involvement that I automatically have mastocytosis of the aorta or even elevated numbers of MCs beyond that of the NORMAL patient!   You can't just say 1 + 1 = 2 here!  It doesn't work like that.  

Kounis syndrome may indeed have histamine involved in the heart of these patients, but that doesn't mean that YOUR heart is having the MCs firing there!  Also, although MCs are found wherever inflammation is found, if your heart is not inflammed, then you should not have elevated numbers of MCs and they may not be neoplastic MCs either, they may be perfectly NORMAL MCs!  

So, everbody, this is something that you really MUST speak with your cardiologist about for although this may be something going on with you, the chances are not.  Don't forget, we may have this problem of an overload of MCs, but masto has not been known to create major heart problems or they would have seen this tendancy already and begun studying it.  This is what they have seen with the carcinoid syndrome and it's also a rare disease and yet, due to the great majority of carcinoid patients who abnormalities with their hearts due to the hormone release, they do know this is a major problem and they already study this in relationship of that disease with those patients.  If masto did the very same thing, then we'd all know it by now!!

So, no jumping to conclusions about Kounis syndrome please.  Don't go self diagnosing yourself - allow your cardiologist to consider this and if he/she feels that this is a possibility, then they will investigate it and diagnose it if it is so.  

Remember, many adults over the ages of 45 have heart attacks, it doesn't mean they have Kounis, nor does it mean they have masto.  Yes, we do have chest pain, but even if you have had a heart attack, it could well be that you're just in the normal group of adults who have had them.  There's got to me more to this Kounis syndrome diagnosis than just the histamines and etc. and I honestly think that you've got to talk this over with your cardio and remove any doubts you may have as according to your case.


Lisa

Lisa, if you were addressing me, I was not thinking I have Kounis. However, I do seem to have esophageal spasms, migraines caused by arteries in the brain and abdomen spasming, and there is good evidence that when the esophagus goes into spasm, that coronary arteries can also spasm, as they interweave with the esophagus. This doesn't mean I have Kounis (I don't even know if I have mast cell disease), but it is interesting to me how symptoms overlap.

I just saw my cardiologist last week for my six month check up, and my chest pain is much improved on antihistamines, so I don't have to go back for a year! My echo, EKG, and trans cranial doppler all showed improvement, so I am not jumping on any ideas that something new is wrong with my heart.

No, you guys, I wasn't singling anybody out with this cause I too had the thought cross my mind, Could it be?   And it was because that also crossed my mind the alarm light went off, cause I've done this before!  We all get PARANOID!   Our bodies have changed so much that we don't even recognize that they are ours anymore!  I keep teasing my gyno that he was playing Frankenstein with me with my hysterectomy cause I can't find the scar on my neck to prove that he changed my body with some other poor woman out there!!  I keep telling him I want my old body back cause as decrepit as it was, it sure wasn't as bad as this one!  LOL

I just wanted to put the caution out for ALL OF US that although there may be new reseach coming out showing connections to the MC mediators with TONS of other diseases, you can't go jumping to a self diagnosis, cause this is very dangerous.   Think about it - imagine someone on here read this, saw everybody going in this direction, then decides that this is what they have too and then the next time they have an anaphylaxis attack, goes right ahead and tells the paramedic that they also have Kounis and then goes telling the poor guy what needs or not needs to be done and this brings the consequence of something horrible!!!

We've got to be careful about jumping to conclusions based upon new research coming out.  Jill can tell you that so very often they've got to have more research to confirm all of this.  Yes, the mediators are being linked to things going on within the cardiovascular system.  This is a brand new area of study and I fully understand it all for we had to base my case upon the mice and Abdominal Aortic Aneurysm study.  It's pure research on mice and although this seems to be what may be going on within my own aorta tissue, it's still way too early to have firm conclusions.  Why?  well one reason is because those are mice, not men and although the MCs seem to have similar functions, they are still mice and until they have more studies done with looking at the tissues of patients who have died, they can't fully understand it.  This is one reason why the researchers in Harvard are looking at my case so closely.  They haven't studied my aorta tissues yet, but it's planned for by looking at my aorta, they will see what the role of the MCs are within the aneurysm I had.  But until then, it's still all based upon mice and it's all based upon theory and hypothesis.

This is why I had to put the caution out for it's dangerous to jump to conclusions and self- diagnose yourself.  I'm not saying that you can't be 100% correct, but it's essential to have a doctor CONFIRMING that this is indeed the correct diagnosis!!  

Remember, gang, our psychological profile as patients has a very important role in what goes on with our attitudes as far as diagnosis goes.  So many of us have been through the grinder with doctors and we've been told for so long that nothing is wrong, or that they can't find anything, or given wrong diagnosis, or worse, told we're nuts and treated as such and we're desperate to finally pin down our diagnosis so that we can finally get the appropriate treatment!  We want to be well again and in order to be so, it's essencial to pinpoint the diagnosis!!   We are fragile people due to our needs to have some kind of certainty and closure as to our illness.  This means that we are more than open to jumping to conclusions due to how needy we are for some stability in our lives!!  We're not "sick" emotionally speaking, but we're fragile and needy and we can often put ourselves into danger due to how desperate we feel sometimes.   This is what I'm addressing here - that desperate need for closure and diagnosis and thus treatment and thus improvement!  We all want to return to our previous, normal, healthy lives we lived before the masto came out of hiding and so if we're not balanced by others, we can jump off the deep end without even realizing we've jumped.  The ONLY  way to prevent this is to go by one major rule - Doctor CONFIRMATION!  

You can indeed come to some conclusions about your health and your diagnosis, but as long as you balance yourself emotionally and mentally by demanding that you keep the brakes on until you have Doctor CONFIRMATION, then you'll steer clear of the pitfall of self-diagnosis and all of the consequences that it can bring to you.

Okay, I hear the next comment - but what if you don't have a doctor who can confirm it?  GO TO AN EXPERT/AUTHORITY, cause running around in circles with lesser doctors is for the birds!!  When you are that up against the wall, then it's time to face the facts and go higher up!

Well, I hope you understand Susan, I wasn't referring to you.  I won't beat about the bush with inferrences, Susan.  That's something I don't do.  If I was really addressing you, I'd have told you.  Like I said, the thought did cross my mind too as to my case because my masto specialist is convinced that something hemodynamic is going on and I do go through tons of syncope and it apparently is cardiovascular.  So, I did wonder myself for about 2 minutes and then said, Nah, my cardiologist would have said something when I was in the Hospital for my recent surgery!   That's how I realized what could happen with this particular article and why I put up the warning of caution.

Joan, I don't believe that aortic aneurysms has anything to do with this.  And anyway, in my case WE KNOW FOR CERTAIN that my aneurysm is totally hereditary.  This is why Harvard chose to study my entire family - the Morrison Clan and all descendants of the original group of 4 brothers and their father who came over to the Colonies and settled in the NC region.  I was asked to do some of the work on researching my family and sure enough, not only is there evidence of the genetic defect back up into the previous generations, but all of my siblings and cousins (10 of us)  have aortic aneurysms and my father and his only sister both died from theirs - so something very unusual is happening in my family with these aneurysms and Harvard decided to study us due to how very unusual this is.  I've turned into their personal mouse model due to the fact of the masto together with this hereditary aortic aneurysm!!  I'm a virtual Blue Light Special, Mike - 2 for the price of 1! HAHAHA!  


So, I hope you guys understand me now.   Sorry if anyone felt I was pointing fingers!   Remember, when you point a finger, 3 more point back at you! hehe!