Help, really scared about strange episodes

[Hazel777]

I was diagnosed with MVP about 30 years ago and have the typical flutters, palpatations and breathlessness.  I took Toprol for about 10 years until until this time last year.  I woke up one morning and had the strangest sensation that for the life of me I can't describe.  I felt somewhat weak and foggy (there was no graying out of vision)  and then a wash of almost an electrical feeling rushing from the top of my head down,  Afterwards I was very tired and weak,  I went to the hospital where they found nothing wrong.  My Dr. thought it was related to my MVP and the Autonomic nervous system.  He changed my BB to Inderal hoping to stop  that and maybe help my Migraines.  I had several more episodes of this weird thing, worse one being 7 episodes one right after the other,  (which reminds me greatly of how an accidental does of ephiniphrine at the dentist feels)  and then nothing for the last six months.  2 weeks ago The Dr. switched me back to Toprol since no migraine relief and the Inderal makes me sleepy.  Yesterday at the grocery store I had another of these "spells"  I had this realization that something is amiss and is getting ready to happen, then that strange rushing feeling washes over you, it was so bad I had to lay my head down on the cart and then had to sit on the floor to keep from fainting.  When I got home I had to rest for several hours before the fatigue started to lift. I did take my BP when I got home (about 30 minutes) and it was a little high for me 146/86 (usually 120 or less over 70 over less) and the monitor picked up a series of skips. (extra beats acutally)  I had another milder episode this morning.  Can someone please tell me what this might be?  Besides my not being able to explain it very well,  I think you have to have experienced it. When the Dr. starts with I'm not sure but it might be... that is not very reassurring when these episodes feel like you a getting ready to die........

[CPLady]

Is there a chance you are having recurrent panic attacks?  The symptoms sound the same.  When I have one, it is sometimes triggered by a flash of light, leading to an ocular migraine.  Only thing I can do is to lay down in a quiet, preferably dark room and wait for it to pass.  The first few I was certain I was having a heart attack or stroke, but once I found what they were, I realized that I had the power over them ultimately.  They inconvenience me, but they no longer scare me because I know they're going away.  Once I took back that 'power' they had over me, it seems they've lessened.  I get them in stressful situations (social occasions are my trigger) but often I'm able to talk myself though them.  5mgs of Valium is my crutch.    You're not crazy, that's for sure.  Accept that, and then work on being the one in charge of your 'spells'.          I find that I'm more vulnerable to them when I haven't slept.  I now take Ambien CR, no side effects, and restful sleep with entertaining dreams.  It's helped me in SO many ways.  So much more able to deal with life, pain, spells, etc when you've had some rest.   Good Luck..............

[clarissa4]

I have went to the doctor and ER numerous times over the years. I have only fainted once because I didn't get to the ground fast enough. I hit the back of my head and was in the hospital for five days, again nothing. I have to lie flat. I can't even sit. Once the sweating starts I can't do anything. I was driving last summer felt fine when I left but all of a sudden it hit me and I had to pull off the side of the road and roll out of the car. I refused to go to the hospital but they did an EKG and said it wasn't my heart. After that I was put on a heart monitor for 30 days. I did not have one spell the whole time I wore it. The heart doctor said the only thing that he saw was some irregular beats. The neurologist said he thought it might be heart related and the cardiologist said it was neuro. Neither one of them could come up with an answer.
I can always feel these spells coming on and they last about ten minutes from the onset of the spell until the sweating stops and I am able to talk. Some people that stopped to help me said that my color was gray and after the sweating stopped my color came back. After these spells I am very weak for days after. I know this might sound crazy but it is almost like a heart attack and stroke at the same time because some of the symptoms sound like a heart attack and some like a stroke. I have had both so I know what it is like. I don't have any chest pain like with a heart attack.  I have had so many doctors look at me as if I have lost my mind and say we don't know. I won't go to the hospital or doctor now when I have them.
I have done the heart monitor, seen the neurologist and cardiologist and still nothing.
I pray that maybe you will find some answers. Good luck and thank you for your reply. I know what you are going through, I just don't know how to explain it any better.

[Hazel777]

Well, I typed one response and I don't see it, so I will try again.  My Dr. is speculating that this is related to MVP syndrome, which ties back to the autonomic nervous system.  The end result is a lot of weird sensations, feelings, fainting, etc.  I am looking for a more absolute answer, espcially sicne it does feel like you might die.  I have already taken myself to the ER once and they found nothing.  I am wearing a 30 day monitor now, hoping they can catch something.  If it doesn't I plan to have the Dr refer me to a neurologist as they would be the best on the nervous system.  You might like to look at these 2 websites, I first really hits close to home, so maybe there is something to it.  The second one has a bunch of articles you can read.  

http://www.consciouschoice.com/1995-98/cc093/hmd093.html

http://www.associatedcontent.com/article/135498/mitral_valve_prolapse_scary_symptoms.html?cat=68

The part that makes me crazy is that you can feel this way and they can't find anything and don't seem to have ever had a patient having this before.  

Oh,  the actual episode last just a few minutes, then very tired and weak for a day or so.  The rest of the time I feel fine.  

[clarissa4]

I have been having spells for the last 18 years. I don't know when they are going to come but I feel them coming on. First I get light headed and weak, my balance is off and I have nausea. I sweat from head to toe and turn gray. I can hear people talking but I can't respond. I have to lie flat down or I will faint. Once the sweating stops my color comes back and I am able to talk although I am weak for days afterwards. I get the same strange rushing feeling that comes over you. People have told me that I turn gray and I seem zoned out. I have been to the doctor and ER several times over the years and they can't find anything wrong. I am 48 and have had three heart attacks, stroke,emergency triple bypass and a mitro valve replacement. These spells are different than anything I have ever felt. No one has been able to explain why I have these spells. I was hoping I could find someone that could relate to me. You do feel very strange. Doctors have looked at me like I was crazy trying to explain my symptoms. They have ruled out heart attack and stroke. I know how you feel. You really do feel like you are going to die.

[Hazel777]

Sorry,  I should add the Dr. does an EKG every 6 months.  I also had a bubble echo and a stress test.  All fine with the exception of the MVP.