Anyone up for a differential? May be heart-related?

[JodyDFB]

I didn't know where else to post this.  I'm wondering if anyone else has had similar symptoms AND found a cause?  I don't know what the cause is yet, but doctors are currently thinking "heart".  I've done a 24hr Holter monitor (awaiting the analysis), and am currently wearing a loop monitor for the next two weeks.

A month ago, I was perfectly normal.  For all intents and purposes, I was in perfect health.  I do have MVP, but was told (about 8 years ago, when it was discovered during a test for HCM, after my sister was diagnosed with the condition), it was nothing to worry about.  (I was told I do not have HCM.)  I also have occasional atrial flutter.

Other than the MVP, I was pretty healthy.  I am female, nearly 50-years-old, and have never had a serious health problem.  I eat a disturbingly-healthy diet, exercise every day, have never tried any illegal drugs, don't drink alcohol, and take no medications.  I was sailing along without a care in the world.

One day, I woke up and did some exercise, had a nice breakfast with my husband, and chilled on the couch afterwards, playing a game of solitaire on my iPad.  Out of the blue, I suddenly:

- felt like I was losing consciousness,
- my eyesight went blurry, I had difficulty focusing,
- my heart started pounding,
- I felt like I wasn't getting enough oxygen,
- my muscles started trembling,
- I went cold, then had whole body shivering, with
- nausea and
- diarrhea.  

My body was screaming at me that I'm about to die.  Obviously, I didn't die, and I have never actually lost consciousness.

Subsequent episodes have lasted 1-5 minutes.  I have had more than one episode in a day.  Individual symptoms can come and go all day.  However, I have had a few days, in the past two weeks, where I've felt nearly perfectly normal.

While I still have transient, individual symptoms, my last acute episode was two weeks ago.  As luck would have it, the day before, the day of, and even the day after, my 24hr Holter monitor, were days where I felt completely normal (for the first time since the episodes began).  Alas, I do still have individual symptoms, and managed to catch some of the heart pounding, heaviness, and general discomfort, on my loop monitor, last night.  

More info:

- vitals are all in normal ranges after episodes (and even during, if I have the presence of mind to check)
(BP typically under 100/under 70 with a high of maybe 130/100, HR 60-100bpm, temp. 35.9-37.4C)

- CBC mostly in normal ranges, a couple of slightly high or slightly low readings, but of little concern

- blood cultures negative

- ECG normal ("very good")

- no positional relevance (acute episodes occurred while sitting upright or lying on either side) (I rarely even have individual symptoms while standing.)

- not activity related (strenuous exercise does not elicit an acute episode or individual symptoms)

- and due to eyesight blurriness, had my eyes checked, and found no evidence of any disease whatsoever (and even with the continuing blurriness/difficulty focusng, my eyesight still tests 20/20)

- my scalp is often tingly/somewhat numb, especially across occiput

- I don't automatically associate transient pains with this problem, but do have occasional head pains, heart pains, and cold or hot sensations around my heart.  These last mere seconds, and are not recurrent in the same spot (with the exception of the hot/cold heart sensations).



I don't think I've missed any major symptoms, so if it's not there, it's probably not part of my problem.

There are sooooooooo many conditions which fit a few of these symptoms, but not all, or really even most of them.  I mean, I've never had limb numbness or paralysis.  My heart rate has not gone above 120bpm (I've never seen a reading above 100).  I don't have recurrent headaches.  Neither my HR nor BP have been especially low, either.  My temperature is always normal.  I've never fainted.

I have an echocardiogram scheduled when I return the loop monitor.  But, I fear, if all that turns up nothing specific, I'll be left to just live like this.  So far, I've been the one pushing for tests.  All the doctors I've seen seem either apathetic to my plight, or even as though they think I'm fabricating it all (given that my vitals are always fine when they check them).  It's irksome, to say the least, given how disruptive this problem has been to me.  I have a renewed appreciation for those who live with chronic health problems.  I took my excellent health way too much for granted.

I just started driving again, recently, with two episode-free weeks behind me.  But I still have the heart pounding that can even wake me in the middle of the night, the feeling I'm not getting enough oxygen, the blurry vision/difficulty focusing, random odd pains, just generally feeling "not right", with the worry a full-blown episode could occur at any time, since I don't know what's behind them, at all.

If anyone happens to have had a similar problem, and knows of a resolution (or treatment/prevention), I would dearly love to know about it.  I'm kind of left to diagnose my own problem, since doctors can't easily figure out what it is; my test have come back negative so far; and maybe because I seem perfectly healthy to them when I see them, when I'm not having symptoms, they don't take it seriously.  If the heart monitor results come back inconclusive, I'm not sure where I'll turn next.  Both a doctor friend of mine (who lives far away) and the optometrist I saw strongly recommended I fight for an MRI or CT scan, due to the scalp tingling, transient head pains, and blurry vision/difficulty focusing.  So, I'll try to do that, if this appears not to be heart related.

Thanks, in advance, for your help.  :)

[ed34]

Ah, the good old reformation of the NHS. I would tell your cardiologist that your Doctor cannot determine your problem with regards to your symptoms. He may have a clue what the problem is, even if not heart. I'm sure he gets hundreds of patients every week and some are bound to have the same if not similar symptoms as yours. Please let us know how the tests go. I doubt if the technician doing the echo will say a thing. I've had ONE out of about 20 who has given some clues. The others all say "you will be told by the cardiologist". I mean, if they see a valve falling to pieces, what's wrong with telling you lol.

[JodyDFB]

Thanks, ed34.  :-)  I appreciate the advice.

I'm one of those silly, health-conscious people who's always accepted the fact that doctors aren't psychics, and routinely see both hypochondriacs AND those with serious health problems.  (meaning, people who try their patience, and people who are in much greater need of their services)  Having never had a serious health issue before, I tended to avoid seeing a doctor, unless I felt it was necessary.  (My former GP always had to get my file from his inactive files, the once-every-five-years I'd see him.)  I look to whole foods and a healthy lifestyle as a means of preventing disease.  I'd been lucky, 'til now.

Alas, my own doctor retired in 2005, just when I moved to a more rural area, where there are few (any?) doctors taking new patients.  So,the first doctor I saw for this problem was also seeing me for the first time, at a walk-in clinic.  The next trip was to a hospital ER, where the triage nurse basically decided I wasn't very ill.  Five hours later, and not a single patient had yet been called from the waiting room, and I decided to go home (since my symptoms were long gone, at that point), having never seen a doctor.  The next two doctor visits were also late-night trips to the ER.  The first doctor was polite, but basically threw up his hands, once my ECG and CBC came back normal.  (The nurses were dismissive, bordering on insulting.)  The next ER doctor seemed willing to try, and was the one who referred me to a cardiologist for an echo. and the loop monitor I'm wearing right now.  He also did a thyroid test.  "My" (new) family doctor is actually my husband's long-time doctor.  He is not taking new patients, but my husband coerced him into seeing me.  He was the one who actually called my problem "nothing", but did send me for a stool analysis and 24hr Holter monitor.

My echo. is next week, when I return the loop monitor, after which I see the cardiologist for the first time.  Results of the other tests will be sent to my new doctor, so I'll have to make an appointment to discuss the results.  I suspect that will be about two weeks.  

Unfortunately, the system here doesn't allow for much movement between primary care physicians, due to a shortage of doctors in my area.  They have to be accepting new patients, and most aren't.  On the other hand, there wouldn't be too much difficulty trying different specialists, since one's GP can just refer the patient to another specialst.  The monkey wrench is, everything goes through the GP.  But it isn't always easy to get a new GP.  It's why so many walk-in clinics have sprung up (a lot of foreign doctors getting experience), and why so many people go to the ER for non-emergencies. (I'm one of them...kind of.  I mean, I've gone because I was genuinely concerned for my life, late at night.  Now that I've survived so many episodes, and all my tests have come back normal, I haven't been back to the ER.  I just ride out episodes, and hope upcoming tests will discover the cause.  But I would still go to the ER, if I really felt I was about to die...like I did with a few of my episodes.  Make fun of me if they want, I think it would be dumber to think a stroke is happening, but too afraid to go to the hospital for fear of ridicule.)  

I relocate often, so I hope when I move back to the city, I'll be able to find the family doctor I deserve.  

TMI, I know.  But thanks for taking the time.  :-)

[ed34]

Perhaps a change of Doctors? one who doesn't believe symptoms are imaginary or 'nothing'. Either that or I would just keep pestering the Doctor until they DO take you seriously. Don't get embarrassed by pestering them, it's their job to figure out the problem.

[JodyDFB]

Re: TIA...  That concerns me...but no one else, apparently.  Virtually all healthcare professionals I've dealt with so far, have essentially dismissed my symptoms.  Seriously.  They either don't believe me, or just throw up their hands and say they don't know.  My family doctor said, three times, at the end of my appointment, that my symptoms are, "...nothing."

Me: "---"

TIA was my first concern, when the first episode happened.  When that was completely dismissed by the first doctor I saw, I branched out into other possible conditions, like heart attack in women, irregular heart beat, SVT, HCM (even though I was tested for it just a few years ago, and the test was negative), but TIA was always in the back of my mind (pardon the unfortunate pun).  Heck, I even considered a gluten allergy.  But, of the so-called "common" symptoms of various conditions, none share the majority of my symptoms.  

At ths point, I guess all I can do is hope I survive long enough to get more tests, in the hopes of preventing something even more serious.  I was the picture of health five weeks ago.  So much has changed...

Anyway, thanks for the additional info.  :-)

[ed34]

You don't have to have much in the way of symptoms with a TIA. My Father had 6 of them and only had some dizziness for a couple of minutes.

[JodyDFB]

Thanks to you both, for your help.

I would LOVE to get an MRI or CT scan.  Alas, I have to convince a doctor to refer me.  "One does not just walk into...  ...an MRI/CT clinic."  

After my echo., I'll likely push for that, now that I've had 2 more (very mild) episodes (after a 3 week respite of just individual symptoms).  Today's episodes included uncomfortable scalp numbness/tingling radiating down to my right ear and cheek, cold hands and feet, palpitations, blurred vision, and an urgent need for a bowel movement.  I'm still wearing a loop monitor, so I recorded & transmitted those episodes.

I have one or two symptoms of a number of conditions, but always missing something important.  For example, I have never had true paralysis or numbness in limbs, nor a bad "headache", which tends to rule out TIA, for example.  I have also never had a rapidly-beating heart rate, which tends to rule out SVT.  There are so many others that have elements in common, but nothing fits exactly.  I'm not just stumped.  Now that I've had 2 more episodes (albeit mild), I'm still concerned for my welfare.  

As for my pulse pressure, it is rare when it is not more than 30 points apart.  It's usually below 100 and below 70.  It is only above that when I'm checked in a clinical setting and/or following an episode.  However, even then, my diastolic has only been 100 once (to my recollection).  It has been below 100 every other time.  (Often, the clinical reading is in the area of 120's over 90's.)  So, I don't know what to make of that information at this time.

But thank you both, so much.  Every little bit of information is what will help get me back to health.  :-)