I am not sure yet what is officially wrong with my heart aside from an "innocent" heart murmer which was found 5 years ago.
I am disabled with fibromyalgia and chronic fatigue syndrome and I have a large benign brain tumor which so far is causing no neurological deficit. It has only grown 2mm in 4 years; the average rate of growth for my type of tumor is 1/2cm per year. It is located in the area of the brain which controls balance and coordination, not reason or emotion. But, most people in small towns assume all brain tumors render women incompetent and insane. So theres nobody I can talk to where I live. I'm originally from a large city.
I refuse to be an inpatient in a hospital due to having no family,no close friends, no children and no significant other to take care of my 16yr old dying dog, who is all I have. I try to troubleshoot health issues at home on my own. I live in a rural area where good medical care is sparse. Its like pioneer days up here. You pretty much have to take a swig of whiskey, bite on a bullet, and stitch up your wounds all by yourself.
In November I contracted a severe respiratory illness from a neighbor. My neighbor definitely had pneumonia from it and is just now feeling less SOB, after taking yet another course of high dose antibiotics. He ended up with a spot on his lung that is not cancer; his doctor said the spot was caused by the disease he caught in November. So far the exact organism which perpetrated this debilitating illness has not been isolated. It was rampant where I live last fall.
During this illness, I had severe shortness of breath, blue legs,constant dry cough, freight train chills head to toe, high fever, and my heart started pounding and beating very fast. My HR was 200 just standing in the kitchen.
The first 6 weeks, I infrequently coughed up white stringy sputum with rust colored streaks in it, had no bronchial spasms or tightness, but felt a crackling sensation low on each side of my ribs. After the initial onslaught left, subsequent relapses were more like typical bronchitis. These symptoms waxed and waned, and after 3 1/2 months, I was left with an irregular heartbeat and shortness of breath upon minimal exertion.
I underwent a full cardiac workup on 2/26. All tests were normal except the stress test which showed extra beats. 48 hours after the test, during which I slept 28 out of those 48 hours, dead to the world, I woke up with a numb left hand and shooting pains down my left arm. I was still SOB. I thought a shower might help. I do not ever sleep on my left side.
By the time I got in the shower my entire chest felt as though a hand was squeezing and twisting my heart and also like a 400lb man was sitting on it. My head felt like an iron headband was squeezing it tighter and tighter. I got too dizzy to stand up or wash my body. My lower legs were blue. My left arm felt like electricity was shooting down it. When I raised my arms up to shampoo my long hair these symptoms greatly increased so I had to bend over at the waist to try to rinse my hair.
I got so weak and SOB I had to turn the water off and kneel in the tub until I could crawl over the side of the tub to sit on the toilet seat. My legs felt heavy; it was difficult to propel my body forward. My chest still felt pressure, my left hand stayed numb and my heart rate was too fast to count plus I had palpatations. I was gasping for air but finally with my head between my knees I was able to breathe better.
I think this all lasted around 10 minutes. I was too weak to grab a towel to dry off. The bathroom had no heat so I was freezing as I air dried on the toilet seat. All I kept thinking was that I had to get in bed. I stood up by degrees. It took about 20 minutes for me to walk 20 feet and crawl in bed.
By then the pressure in my chest was like I'd been punched, like a bad ache. My heart rate soared with each tiny step I took. The pressure in my head went away but my head felt sore. I was not having air hunger but it was still difficult to breathe . I was dizzy, walking hunched over, hanging onto things trying to make it to my bed.
Once I got in bed, I laid on my right side for 3 hours, like I had turned to stone. I felt beyond exhausted. I literally could not move. My heart acted funny again, like it had the night before, prior to all these possible heart attack symptoms.
My heart would stop beating altogether, stay stopped long enough for me to feel dizzy, then it would shake hard all over, harder than a simple palp, then it would do that boom thing then beat very fast until it stopped again. Sometimes it would just beat and wait 5 seconds then beat again. I was not sure it would start up again. My resting HR the night before was 50, and it had been at least 100 for months.
It was not like the simple 3 second palpatation episodes which started during perimenopause 15 years earlier. My heart was literally stopping for intervals which cannot possibly be considered normal. And too, the way it shook, it was more than fluttering, I could feel my whole heart being shaken, as if unseen hands were beneath my ribs mixing an exotic cocktail in a professional shaker. It felt like the entire organ was quivering all at once, not just a part of it. This harsh shaking was uncomfortable, it was not the tickling sensation of normal palps.
I had never felt my heart beat like that before. My heart was fine until I fell prey to that disease in November. 3 other people who got it are also having cardiopulmonary problems, 7 mos later. I am so curious as to what this organism can possibly be. It is the sickest I have ever been in my adult life from a communicable disease. My friend who so kindly gave it to me says the same thing. I suppose we will never know.
I told my doctor all about this shower episode a week later and was put on low dose Calan for the extra beats. It did not slow my heart rate. If anything, after 2/29, I got worse. Minimal exertion caused me to be even shorter of breath. My resting HR averaged 120, standing was 176. I saw my hands and feet turn purple.
I was deconditioned of course, so kept trying to push past the extreme fatigue. I pushed until the room spun and I saw spots in front of my eyes, then I would quickly kneel on the floor to catch my breath. Overall I seemed to have a faster HR and more shortness of breath after 2/29. I fainted twice, luckily landing on my bed.
In May I saw the doctor and was put on Advair and Spiriva and a double dose of Calan. At first I felt better but in a week I had a respiratory infection so had to up the doxycycline I always take. It helped alot so when I saw my doctor June 3 I asked for more antibiotics. I was then sent to the hospital for more pulmonary tests, which unexpectedly showed an enlarged thyroid on the CT scan taken of my lungs. My lungs looked great. Friday I have an US on my thyroid.
I am not sure I ONLY have COPD, not after the way my heart acted after a stress test. The inhalers had too many side effects, including elevated heart rate, so I recently d/c'd tham. I see a pulmonologist on the 25th. My heart rate continues to soar if I do so much as turn over in bed.
My breathing has been fine just taking Claritin and antibiotics. I am unfortunately a smoker, on Chantix, but trying hard to quit. With this big brain tumor, and prior to November having absolutely no negative quality of life issues stemming from my heart and lungs, I had not intended to stop smoking. But now I have no choice but to try.
I had been searching online for hours tonight trying to glean any info I could about the possibility of a persantine injection stress test being a potential cause of a heart attack 48 hours after the procedure. I found this site, and read a few posts which I thought were closer to helping me than anything else I googled.
If someone here takes the time to read this I would deeply appreciate any input you might have. All I want is for my heart to be like it was in October. My heart beats broken now and I do not know why.
There is a pervasive history of heart disease and arrhythymia in my family. Calan should have helped, but so far it has not. I might have a thyroid problem causing the heart to beat too fast but the T3,4 labs were always normal. Oddly, about 6 weeks into the disease, my hair fell out, my nails became brittle and suddenly broke off, and the skin on my feet and hands and entire body became crackingly dry. I have had super oily skin my whole life.I became overly sensitive to cold. I also experienced an increased appetite for protein and lost my desire for sweets. I had a voracious appetite, ate huge quantities of food, was sedentary, yet by May I lost 10 pounds not trying. I do not know if hypothyroidism can turn to hyper overnight, or if with both there can be an elevated heart rate.
My heart beats so hard and fast it wakes me up. I do wonder if I had a for real heart attack on 2/29. My doctor said nothing when I told her everything about the shower incident. It was not a panic attack. I seriously was looking forward to a nice hot shower. I was in a calm frame of mind. But waking up with a numb left hand and shooting pains down my left arm that felt like electrical impulses, plus chest heaviness, dizziness, and the inability to move, that was physical, not mental. I really thought she would order an EKG. I haven't had one since the stress test. If I had one now, would it show whether or not I had a heart attack?
I am new to this board but the few posts I read were very sincere and kind. I hope someone on here can help me. Heart disease in women is so different than in men. Women have to stick together.
Thank you
Roxme




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