Questions with heart and blood pressure

[Boop82682]

Hello.  First time posting here but I am at my wits end!  I have been to numerous docs and feel like things are just not getting handled in a timely fashion and I am tired of being referred to docs that don't even read nor bring my chart/file into the room!  I am a 32 year old female.  Non smoker any more.  Now underweight because I keep losing weight for no reason.  Pretty healthy.  I've had high blood pressure since I was 17.  Family history with heart disease, clots, heart attack, strokes etc on both sides of the family is pretty bad.  At 17 I was also told I have mitral valve prolapse.  I've had palpitations and fast heart rate even then and was on Metoprolol for years with no help.  I stopped even going to the doctor because they told me not to have children.  I had 3.  Yes high risk and blood pressures were elevated though no real problems.   I have been having major issues with my blood pressure and heart for well over a year.  Not kidding when I say well over stroke categories (180/110).  It all started when I was working during a heat wave.  Immediately I felt palpitations, short of breath, sweating perfusely, nauseus etc.  and I really was doing any major "work" yet.  Just walking.  (I am a photographer so I do run, walk, stand, kneel, climb etc that's not uncommon).  I thought it was quite strange that I probably needed to check my blood pressure but hence I had no machine with me and I was busy.  I photographed the wedding for 10hrs in the heat, no air conditioning at all because we were in a barn.  I stayed hydrated.  I went to the restroom and put water on my face etc but the symptoms persisted.  I tried eating but felt like it was coming back up.  After my day ended I went home, jumped into a shower, picked up my kids then tried to eat again but felt sick and my mind was telling me something is wrong.  I drove all the way home (over 3 1/2hrs at midnight so I didn't get in until 4am).  I took my blood pressure immediately and it was 175/143!  My heart rate was 133!  I knew something was wrong.  I layer down and went to bed.  The next morning I was so extremely fatigued and short of breath I couldnt talk I was panting like a dog and my legs I couldn't even lift up.  I took my blood pressure again it was 223/156!  My heart rate was 146!  These readings continued along with the nausea for 10 days.  My husband finally made me go see my PCP.  In the office my blood pressure was 190/130!  They immediately put me on the EKG's machine as well as a breathing machine because of my symptoms.  But no heart attack signs!  Thankfully!  I also find that I lost 20lbs in those 10 days!  We ran test after test.  Kidneys normal.  Blood work potassium and sodium levels were down.  Other than that nothing.  Last thing we did was a stress echo.  I failed it.  I was told I have at least 3 blockages and needed a heart cath immediately!  I was told I was going to die!  I did the cath and NO blockages at all!  Yet, symptoms still persist!  Following the procedure I was rushed back to the er as I had my hands lock up and turn purple - they say it was from my potassium dropping again then also see I now have a blood clot in my groin!  Been on 5 different blood pressure meds, on and finished my blood thinners and clot free 6 months after the procedure.  Now told I am anemic.  Went on iron supplements but no help.  Told that I may need blood transfusions to get my blood where it needs to be!  I don't do them yet though.  I have gone to new docs and each time I go no answers as to what's going on!  Not one can tell me who, what, when, where why!  These new docs give me another echo.  New findings of - the left and right ventricle and atriums are small, the left ventricular septal thickness is increased, right ventricular systolic pressure - tr velocity is inadequate for estimation of PA systolic pressure, mitral, tricuspid and pulmonic regurgitation?  The new docs never even told me these findings that were done in March 2014!  Apparently, my mitral valve prolapse no longer exists since times have changed and guidelines are now different?  I'm just tired of feeling like no one does their job anymore!  Every time I see these docs its a new one who I have to explain myself to AGAIN, and still no answers!  We've just check the size of my kidneys again and they appear normal.  So, the tumor on the kidney thing is ruled out again.  I was told I am losing weight again.  I'm being told I may be getting restrictions!  I have 3 children and a job...how can I be restricted to do activities when we have no clue what's going on?  I'm told if I stop my blood pressure meds I will die!  I need help!  What is happening?!  Why?! And why can't I find blood pressure meds that actually control it along with my heart rates?  I am trying to stay calm, but I want answers.  I still swear I had a heat stroke of some sort (even though first set of docs told me no way that would never happen).  But also these echo changes were not there in August 2013.  Now, there are lots of changes.  Should I be worried?  Please, please, please help!  Thanks in advance!

[Jerry_NJ]

I'll ask the Admin to move your post to the "Heart Rhythm" Community here on Med Help;.  I think you may be more help there.

I didn't read in great detail because your post is too complicated to me, but I agree you need medical help and see no reason, or benefit, of waiting for a month or more to see a doctor.  

[Boop82682]

Also forgot to add....since the cath procedure I've still had swelling of both legs.  I was told I have post thrombotic syndrome as the docs damaged the vein going in/out of the groin.  Now my feet and hand but more my feet are so, so cold I literally put a heating pad on my feet, under blankets, with under armour ski socks on!  Swelling still persists but seems mainly from knees down.  I can't sit for longer than one hour because of pain and swelling.  I haven't seen my doc yet to tell him about the coldness that's going on.  I see him in January but wondering if I should switch docs since they don't seem to read my test results to me.  I'm concerned about right sided heart failure.  Is this swelling maybe more because of my heart?  The coldness from anemia or my heart?  Ugh!  Please help!