need help with diagnosis Doctors cant find anything

ok this is a long sordid tale and I appoligize in advance for the length however I think its important to include everything as a matter of finding some relevance.  About 7 years ago I had my pulse increase to a very rapid rate of around 200 bpm. i called an ambulance of course and an ekg showed A-fib.  this has happen two more times without going to the hospital and has resolved on its own after 30 min.  in addition my blood pressure has always been borderline with spikes here and there.  now my pulse was running high about a year and a half ago and my blood pressure was normally over a three day check 145/92 nothing serious but a little elevated I have had spikes after activity of low 150's over low 100's skipped a few beats and gone to 140 a few times have had resting heart rates of around 114 at peak etc.  The thing is I feel every beat my head hurts alot my face feels like its on fire cols hands im shaky and sometimes I get these head rushes  and hot flashes etc.  we have tested for thyroid,pheochromacytoma, carcanoid syndrome I have done ekg's echo cardiograms and everything at all times seems to indicate normal but I feel really bad.  any exertion results in an increased heart rate and head pressure although even when I take my blood pressure it seems fine.  we have looked under nearly ever rock there is and cant find a cause for it.  I have not done an EP study nor have I had any arterial ultrasounds etc.  increased heart rate seems to come from tobacco use and after eating. some foods produce worse results than others for instance and Im sure this sounds funny I notice a hot feeling in my face and an increased heart rate particularly after eating a subway sandwich and also mc donalds cheese burgers.  not that I do either alot but it seems when I do it is pretty consistent.  also stretching my legs causes my heart to slow and beat funny and a really deep breath will cause it to feel like it skipped a beat half the time.  the speeding up and slowing down is pretty exagerated with normal breathing.  I was taking a beta blocker atenelol which seemed to help at 100 mg then a decrease from 100 to 50 still nothing unusual then to 25 and still worked fine with 0 side effects and I felt like I was 17 again. I could do everything with no shortness of breath etc. so I went completley off the beta blocker to see what would happen as I fly and am trying to continue my career. it worked for a while but my pulse became elevated again so it was back on the beta blocker after an emergency room visit with a skipped beat then a 140 pulse for a minute. so on the beta blocker now I dont feel 17 anymore heart beats are erradic blood pressure sometimes up sometimes not heart rate sometimes up sometimes not etc.  and I had to do a 24 hr urine for carcanoid syndrome.  I had to avoid using tobacco and I was feeling like **** I took my bp 124 over 85 but my pulse was from 48 to 66 over a period of a few hours I thought maybe this was due to the lack of nicotiene in my system so I got scared used a little tobbacco and my pulse came up to a steady 66 with a bp of 141 over 91.  My question what in the world is going on and why cant I get a handle on this.  have I developed an anxiety disorder?  I have been to the ER with problems that felt similar to some cardiac distress only to find I felt better once I was there.  and the recent unpredictableness of my heart rate is very recent it used to be that I could count on it being a certain way and that was is also the headaches are a new thing as well.  any help as to what else to look for any similar experiences to share and any suggestions would be so greatly appreciated.  this isnt fun anymore and its driving me crazy.  thank you all and my sincerist sympathies go out to anyone suffering from similar symptoms.

[sugarpea013]

You said you had a 24 hour urine for carcanoid syndrome...not sure exactly what that is. Does it check for catecholimines? It sounds like you need to rule out a pheo tumor on your adrenal gland.

[Kurt_3_0_1]

pheo tumor is already ruled out.  the carcanoid test is very simlilar it just looks for a slow growing tumor somewhere in your digestive tract that basically does the same thing as the one on the adrenal gland.  also whatever this is im quite convinced it is heriditary,  my entire family suffers from this my mom 55 me 35 sister 27 and sister 23  all of us exactly the same and its beleived my grandfather did as well. They are diagnosed with everything from panic disorder to Innapropriate sinus Tachycardia, paroxymal Afib and the list goes on.  symtoms (symptoms) are all the same fast heart rate at rest, bp spikes for no reason, super fast heart rate and an increase in BP just by standing up and everything affects it, even tightning the muscles in your legs or breathing deeply makes your heart beat funny. however exercise is tolerable and a normal sinus rythm is maintained all beit a little fast but it doesnt have that sudden oh poop factor like simply rising from a seated position does.  also in the mornings everything seems great you feel wonderful but it usually doesnt last very long by the end of the day bp and pulse is elevated feels like it gets brought on by eating throughout the day.  also very sensitive to stimulants, nicotien maybe caffien im not sure I dont use it.  alchohol will produce a hotness in the face very red complexion and very pronounced red splotches on the chest and face as well as chest sensations. it is just wierd and the search for what it could be is absolutley exhausting.  I know everyone is made a little different but surely if there is such a thing as evolution this development was probably a bad idea.

[Kurt_3_0_1]

Anyone?

[whatayear]

Hey Kurt I have IST I know there has been alot of talk on here but seriously have your minerals electolytes etc on CELLULAR level not a basic serum level especially magnesium and check out a book at amazon called the magnesium factor. you may have a defenciey aswell as the rest of your family. it runs in mine!

[jodibs]

I know this is going to sound crazy but I just spent the last year going through the same thing you went through. I have been from Stanford to UCSF I have had bone marrow tests to octriotide scan for carcinoid tumor. I was in the hospital for 23 days. they had no idea what was wrong with me. Same symtoms (symptoms) as you. At some points my pulse would go up to like 170 and blood pressure 180/100 it was so scary. Come to find out with one simple test I had Biliary Dyskinesia. It took one simple test Hepatobiliary scan to find it and I had surgury like 5 days later and I am better. They just took my gallbladder out. I know it sounds crazy but there were times that I thouhgt I was going to die. I really hope this helps. I know how scary it can be.

[slarew]

I tend to have similar symptoms as you, minus any afib, but this is what they have found out. I was hospitalized for a few days for my resting heart rate going at 160, also completely normal sinus rhythm, only fast. They checked pretty much everything, and it was due to a combo of being dehydrated, having an infection, and having low levels of potassium. I also went to a cardio afterwards to make sure it was fine, and all they found was pacs and pvcs and sinus arrhtymia. It honestly sounds like your family is a lot like mine...very hypersensitive to the body. I know that I would get weird fluttering sensations when laying down and breathing out and things like that, and what they caught was those three things on the monitor. Basically, we get to feel every single thing that our heart does. The best thing to do is try to distance yourself from it, which is hard (still working on it, and it's been since end of september).

I should also mention that I have panic disorder and that being on medication for that has helped me tremendously. The cardio also tried giving me a beta blocker, and he told me it was because there was too much adrenaline in my body and the beta blockers would stop the adrenaline from affecting my heart, but once the antidepressants kick in all the way, they have the same effect. I have tachycardia pretty regularly, with resting at 114, but after being on lexapro, it's back down to 70s and 80s, with less of the heart stuff.

Also, if you're having trouble like that with your pulse, you really need to cut the nicotine and caffeine asap. That has a lot to do with it...I now have to be careful eating chocolate because it has caffeine in it. Also, try eating a banana everyday for the potassium and get some magnesium everyday.

Oh, and the different rates you're feeling with breathing is sinus arrhythmia, which means that when you breathe in, the rate increases, and when you breathe out, the rate decreases. That's why when you breathe out, it feels weird because if it's in one of those arrythmias, your rate is going down fast and will feel like it's skipping beats. It's completely harmless and gets better with age...it's most prevelant in children.

hope this helps...just what I have found on my journey

[Gin161]

Excellent description of a maddening disorder!  Just this a.m. I awoke to a pounding heart.  I was able to capture a 113 HR on my B/P machine.
The rate is strange for me since I am on the Beta Blocker Atenolol, therefore my pulse rate rarely goes above 56.  Additionally what was scary was the forcefullness of the beats.  Boom Boom Boom.  Sitting still the hair hanging off to the side of my face was actually pulsing with the pounds.  I kept amazingly calm as I readied myself for the drive to ER by my husband.  But as I sat waiting as Zenlike as I could muster conjuring up all sorts of positive images of the 'team' giving me magic thru my veins to calm my ticker down, my alter ego was evaluating the quality of this powerful muscle centered just inches deep beneath my skin.  It was becoming more furious the faster it forced my blood on its way and then, I hope I was imagining this, but I swear I could feel some fluttering and all I could fathom was my heart was literally going to begin flipping - the dreaded v-fib. Yikes.  Thank goodness we live in 911 land.  My labs revealed a 2.4 K+ (norm 3.5 - 5.2)  Ok so I get the a irregular HR, but not the pounding.  We are now waiting upon the results of a 24 hour urine for catechominies & VMA.  I no we should be careful what we wish for but if we found an adrenal tumor, at least I'd have something specific to fight.  
I too have been experience wildly fluctuating B/P's 190/110 sometimes on up to 118 diastolic.  So now we are playing roulette with the myriad of antihypertension medications available; each with their own set of hair raising side and adverse effects to look forward to.  Also, another similarity  struck me are the wild fire hot flashes.  Adrenaline rushes?
Well good luck, keep us posted