You don't know the relief I felt when I read your story as up until that time I just felt like a odd duck. The doctors have been stumped as to why this has happened. It is so interesting you are from Florida. I had been to Florida the year before the symptoms started and while there I got a weird bug bite on my leg....it wouldn't heal up and kept festering and going away and then returning...I can look back now and say maybe the fatigue started then but it was so gradual I didn't take any notice of it. Then when the sore finally opened out and this white stuff with black lines in it...I thought I squished a bug into my leg....no see ums or whatever...that is when the fatigue really became pronounced. so from the vacation until the fatigue was pronounced it was about 18 months. That brings us to Sept 03. Then I was having a lot the jaw pain, fatigue, pain on the left side of my face and shoulder...I went to the doctor and she said...I had diverticulitis...I was thinking she was a quack because I am a school nurse, and diverticulitis did not fit my symptoms...but she put me on Flagyl and Cipro two antibiotics and I did feel much better. So I thought she was a pretty good hunch as she couldn't have pulled that out with my symptoms. I wasn't totally better but in the school system the fall is just crunch time until December so I thought I was just tired as soon as I got through all the screenings and stuff I would be better... In December of 03 I got lost in the town I have known all my life. I was having terrible jaw pain and was driving around with my kids in the car and I couldn't find my way home I was completely confused. They were like Mom do you know where you are? And I didn't but I didn't want to tell them eventually I ran into the freeway and they knew the way from there... that is when I asked for the first cardiac workup from my Doctor....because the jaw pain I was having was so intense it would come and I couldn't think....about this time the Shortness of breath was becoming pronounced and she wrote me an RX for Motrin 800mg, antibiotics again and said it was my tooth. The left side of my face and lymph nodes were swollen. The Dr. completely refused to believe it could be cardiac related. To make a long story short I bounced between the dentist, endodontist and the doctor for months. The dentist and endodontist saying nothing was wrong with my teeth and the DR. refusing to believe it was something other than my teeth. During January I asked for the next cardiac workup and she yelled at me that there was nothing wrong with my heart and I needed a better dentist. I was put back on antibiotics and was told not to ask for a cardiac work up again. In the meantime they had been doing a work up for sleep apnea and I went along (stupidly) with the idea that this was the cause of my fatigue the lack of good sleep. So I do have sleep apnea and sleep with a C Pap machine every night now...but about the time I got my machine is the time a had the heart attack.... about a month after the heart attack the fatigue was ...I wasn't functioning well and she asked me if I had a cat....well it turns out I had cat scratch fever and from the titer levels in my blood I had cat scratch fever for quite some time...and when the Dr. gave me the RX for the diverticulities it was half of the right dose I needed for cat scratch fever...and was not for a long enough duration...but it was enough to make me feel a little better back in September. So my care was a bunch of missteps..I tried following up some leads about the bug bite ...We stayed on Sanibel Island. Black sand flies from the gulf of Mexico can carry the organism that causes cat scratch fever...and the same sand flies can also carry nematodes that include a life cycle that migrates from the bite site to the heart causing heart damage but I cannot get the doctors to listen out here....They just look at me like I'm crazy and desperate...I am I would like my life back! I live in the Central Valley of California...I went to Stanford outside of my HMO coverage after the second hospital admission as I was very worried about my health. The doctor at Standford doesn't think we will ever know for sure..some theories that have been tossed around ....the heart attack damaged the anterior wall in the center...the electrical conduction system goes through there...the heart attack could have damaged the electrical pathway....My immune system was so compromised by the cat scratch fever that Epstein barr (I had mono when the PVC's started 10 years prior)that a virus attacked my heart muscle...I have never done drugs in my life but I was questioned about drugs and possible IV drug use I l couldn't believe it I was so offended I made the MD check my arms, legs toes and neck for track marks just to rule that out as a possibility..She said she was sorry but she said my heart looked like a druggie's heart. And then there is the we don't know why.
The doctors have not been able to give me an answer and the Doctor at Standford encouraged me to let go of,"Why," because they simply do not know and there is really no way to find out... unless autopsy is an option...I told her No,,,,, I didn't want that. hahaha Anyways... I completely understand what your saying at first I would tell my sister that I forgot this or that...or I thought I was supposed to do X but instead I was supposed to do something else...she was like what do you expect you are 40 now. But I knew this was different. So a lot of my family members have not been as supportive .... they tried in the beginning but now they are like,"Aren't you better by now," And that is hard.
Did I know I was having a heart attack? No, I didn't know. Five days prior to the heart attack my daughters said they found me wandering around the house like I was confused. I lost time leading up to the heart attack, I wrote some emails that didn't make sense,....I was taking a Nurse Practitioner pharmacology course during that time and was having trouble thinking....it was computer based so I would read the question...formulate the answer then when I returned to the question I swore they changed it on me....I am glad I can laugh now but I wasn't laughing then. The pain in my left jaw was so intense and constant for most of the day that I thought I was losing my mind. I called the Dr. during the day and they gave me a night appointment at 10:30pm...I went home from work and layed down and went to sleep...at 9pm I woke up and thought I need to cancel the appointment as I was too tired to go...about that time...my body started shaking from the inside out....I was having runs of PVC's I understand that now at that time I did not know....I asked my husband if I was shaking and he said NO....and I thought there is something seriously wrong with me....and I drove myself to the appointment. It was there that the Urgent Care Dr. listened to my symptoms and did EKG, and enzymes and it was them who confirmed I was having a heart attack. They called an ambulance and shipped me off to the hospital. It was then in the ambulance that the paramedics said you are in trigeminy and I then could associate the feelings I get when my heart is having a lot of PVC's with how I feel.
I had a persantine stress test...where they inject radionuclear material they take pictures of your resting heart and then they give you persantine which races your heart and then they take pictures again to see if the heart is getting good blood supply at rest and during activity.
Then I had an echocardiogram just ultrasound of the heart that is easy
Then they did the angiogram. that is where they found that a portion the front wall of my heart was not moving and was not receiving blood the after the angiogram is difficult because you have to lay flat for several hours with a sand bag on your groin...which is not terribly taxing but it does strain the heck out of your lower back.If you have a small pillow you can put under your lower back while you are laying there is might help bit.
3 weeks later...I was re admitted for unrelenting chest pain,...they redid the persantine stress test and that is when the front wall of the heart was bulging out like a rupturing tire.....
6 months later after rest and a ton medications they redid the echo and the bulge had gone away. My heart wall is not beating like it should.
I have been given multiple diagnoses including anterior apical infarct, anterior apical hypokinesis, Tako Tsubo which was discovered in Japan in women in their early 40's develop symptoms of an anterior (front wall) heart attack but then over 6-8 weeks they recover and have no long term affects. That is what Standford said I had but then when I didn't recover they modified it to Tako Tsubo like syndrome...and now they have given up that diagnosis...as I have never recovered. So it seems to me that the doctors don't really have an answer for frequent PVC's.
Their common line is PVC's not a big deal affects 50% of population. Don't worry about them. That is what happened when I was told I had them 10 years ago. Now they seem reluctant to call it cardiomyopathy or heart failure, though I have seen those terms on my disability papers that the doctors have filled out. I have also had episodes of congestive heart failure. It seems there is no diagnostic category for people with thousands and thousands of PVC's. I have not been able to return to my job as I cannot control the brain fog and as a nurse I could hurt someone. I have 3-4 hours of energy per day in which to take care of my basic responsibilities. And day to day I just don't know how I will feel. I just have to deal with what I get. Some days I have a lot of chest pain, others I don't have chest pain but am short of breath. I think the chest pain is easier to deal with it...rest, nitro, rest nitro....I can hide this when I am out...I can sit quietly until it passes. The shortness of breath is another matter...people look at you like what the heck is wrong with you? I find it embarrassing. They recently changed my meds and the SOB is more pronounced and whereas before I felt it right away....now I can walk from my car to perhaps a store there just comes a point when I need air and I can't get it in and I am left there gasping...and it is disconcerting because it seems to come from no where. And then the days I feel great like myself I seem to do too much and end up on the couch for several days....finding a balance between available energy and the things I have to do is a constant thing I deal with.
I wish I could tell you there is an easy fix and there may be one for you. Depending on if they can isolate a cause. Like a blocked artery or if the irregular heart beat is coming from one specific area of your heart that would be called unifocal PVC's. In that situation they can do an ablation where they cauterize the area so it stops firing an errant electrical impulse. Those solutions do not apply to me as I have multi focal PVC's and my cardiac vessels are not blocked.
In the first year I was admitted to the hospital 4 times with 6 ER admits. I had multiple room mates. I can tell you a theme among all of us was that there was a slow withdrawl from social activities...some of us were very social (like me) but that we would commit to going some where but as the day became closer we started dreading it and often would not go eventually it progressed to not committing to going -to not going to anything. There was the constant fatigue, the brain was willing but the body was as you said dragging butt. Really struggling to do things that you used to do easily in the past. And the vague awareness that something was not right. Difficulty with intimacy was also expressed.
I hope I am not rambling too much... but it is good to talk to someone who can understand what I am going through.
Thanks for listening I hope my experience can help someone else.
I am sure your Doctor has already given you this but things you should be aware of. If you have nausea or vomiting, sweating with nausea, shortness of breath, pain in your Jaw, neck, chest, Left arm, shoulders or back, sense of impending doom you should seek medical attention as soon as possible. 911 is the appropriate call.