Avatar universal

Someone please help me!

Sorry this is so long but it's the past 7 yrs of this vicious cycle I'm in. I am in desperate need of some answers! I am a 29yr  old female. I was diagnosed with Mitral rigurgitation when i was young. In the last 7-8 yrs I went to the doc b cuz i started getting pvcs a lot. I was sent for tests and was told I had mitral valve Prolapse. I was told that the pvcs are ok.I felt hopeless with that response. I went home and have lived with them since then. I had to quit my job and now feel like I can hardly move. I get my husband to  do everything for me and feel sad that I cant do much with me 9 yr ld daughter. I also have a bad case of fibro and IBS. I hear all the time that its in my head and its just anxiety but its not. I am not saying I have no anxiety, but who wouldnt with these. this is a typical day for me. I get up and try to do some house work. Within 30 min-1 hour I start getting pvcs. I then have to sit down which lately has made them worse. I sometimes have 50 a day but in the past few summer months I've had them more than ever. I have estimated about 5000+ a day if I'm getting them every second beat.I also get them in runs. Beat,pvc,pvc,pvc,pvc,beat,beat and so on.I get very hot and short of beat (which does not help my asthma) and have come very close to passing out. My arm starts to feel numb and my face gets all blotchy.I can fell my bp drop drastically. I went to  the doc about 3 yrs ago about the face that I'm almost passing out in the middle of the street during the day at work and she gave me a ekg(which is useless when your not having them at the time) but the results came back and I was told i had a heart attack! I was shocked! i cried and cried. Then the doc phones me and says it was a mistake. Apparently it was read wrong. I went to a walk in clinic and they gave me an ekg there and told me again I had a heart attack. Then recently I went to my new doc about the pvcs and she just brushed me off(typical!) but sent me down the hall for an ekg. The lady comes back in the room and says "you need to see someone fast, you had a heart attack"       I freaked out!I asked for a copy of the reading and here is what it says."Sinus rhythum,contour abnormality consistent with anteroseptal myocardial damage. Then the doc wrote' cannot rule out old anterosetal myocardial infarction.Sinus rhythum.At the time I did not know what all that meant but i went  home and looked it up. It does mean a heart attack. Later that day i went to the hospital to see if they could help me.They were checking to see if I was having a current heart attack though. I told them I was not. They gave me an ekg and The girl comes back and says it looks good to her! I was told I had a heart attack the same day somewhere else and was sent home. I was not given and reassurance or instructions. i did not even get called in to talk to my doc. It has been a month since then and I finally got a call saying I can see a cardiologist in 2 -3 more months! I have no idea if i really did have a heart attack and I guess i never wll. The doctors in Manitoba dont seem to care. I am so fed up with the medical system here i want to just give up. I get no where here. I have tried and tried to show them what happens to me at home but they dont believe me.My husband,daughter, mom, brother, and sister all see it.Everytime I go to the doc about this this is what happens and my pvcs  never get addressed cuz now they go to figure out if i had a heart attack! I know my body and what I think Is happening is this-- my pvcs have damaged my heart and that is why they keep gettiing this reading!!!! b 4 all these pvcs i never had the heart attack reading. MAYBE THE PVCS ARE CAUSING THIS ALL!but they wont listen to me . I so desperatly want my own event recorder that I can always have on hand b cuz the one they give me never works and I dont get it very long. I know Im babbling and I dont mean to I  just want some help. I sit here every day sinking deeper into depression and wondering if this will eventually kill me and I dont want to die young. I was told at first that the ekg reading was picking up on my MVP but I've also heard that mega pvcs over time can weaken and damage your heart muscle. Thats what I think has happened to me. These are my questions
1. I've read that ekgs are known for wrong reading, is that true?
2.I've read many times from doctors that pvcs can be dangerous and that the heart
might not fill up with blood in time or not reset it self, is that true?
3.The doctors do not want to give me ant meds for the pvcs, is this right of them considering I dont just have a normal heart with the odd pvc,I also have MVP,murmur,regurgitation.not to mention at night when i get this It keeps me up all night only to exhaust me the next day and cause more. It also is stressing me out and making me really depressed.This has gone on for years.
4.Is there someone in the USA that can help me and treat me like they actually care and work with me?
5. Does anyone else go through this hell??????
4 Responses
Avatar universal
I'm sorry I do not have any medical advice for you but agree that you have to push this and become your own advocate.  

I have had many episodes of etopic beats, leaving me nearly passing out, all the time I was told again and again.  Told they were normal!!!!  (tell me that again when i'm lying on my back on the floor trying my best to not pass out).  The past few months all my health issues came to a head.  Come to the end of a long haul few months and I have suspected Postural Orthostatic Tachycardia Syndrome (POTS), this would be the cause of ALL my symptoms.  The mere act of being upright was causing these beats to worsen.  There are many causes to these beats including hormonal imbalance, vitamin/iron deficiencies and many more.

There are many supportive members on this board with extensive knowledge and I am sure they will help you find some answers.  There are many who have had long battles to recieve a diagnosis.  Please do not give up fighting and striving to find a dr that takes you and your symptoms seriously and remember you are not alone.

Please keep me informed and I wish you well.
Avatar universal
(sorry my answer is so long...)

This sounds familiar to me. I have had heartbeat irregularities, fainting, pins and needles and absolute exhaustion since I was about 8 years old.

Growing up, my mum realised something was wrong and tried to get the doctors to listen - and was labeled a "neurotic mum" and I was labeled a "hypochondriac"!

It is extreamely frustrating when you live with the symptoms daily, but when you end up in the doctors surgery - they don't believe you because you cant get the symptoms to happen in front of them! I went through a barrage of scans, blood tests, prodding and poking to be told I was perfectly normal. Whenever I complained of the pain and dizziness, friends and family used to say to me "There are people who are genuinely sick who go through worse - think about children who have to go through cancer!" Gee, thanks - make me feel guilty for being sick while telling me I'm not "genuine"!!! Great way to help my self esteem!

I couldn't concentrate at school, couldnt coordinate, couldn't play sports. I was always pale - and told I was anaemic despite my blood tests showing my iron levels were fine!

I put up with it all my teenage years - and was told I was depressed - well yeah, I was 15, could not coordinate, knew I will never be able to drive a car, couldn't go out socially, and woke up in agony every morning - wouldnt you be depressed!

I got to the point where the doctor prescribed Prozac for depression, and I was taking an eggcup full of tablets every morning (including vitamins, minerals, iron supplements, pain killers etc) just to get me moving - while all the time being told I was normal! I came to believe this was a normal part of puberty, and hoped I would grow out of it. Surprisingly, the Prozac seemed to work - confirming in everyone elses mind that it was simply depression/anxiety. Little did I know Prozac actually helps relieve the symptoms of dysautonomia!

At 21 I ended up in hospital to have my gallbladder out. After this surgery, I was unable to eat anything containing wheat - which would cause my heart to race, vomiting, diarrhoea, dizziness and even unconsciousness. After cutting out all wheat products my symptoms actually improved. I was able to sleep through the night, woke with no pain, was actually able to walk around without feeling like I was going to faint etc. I felt great!

I was then able to go to University - something I never considered possible. So I got into radiotherapy (cancer treatment)...hmmm...maybe that guilt trip of "think of the kids with cancer" actually influenced my career... :)

I was fine for 3 years of study - then once I started working as a Radiotherapist it hit again! I was in my intern year, living in a nurses home, when I started getting the palpitations, turning white, fainting and clumsiness. I remember laying on the floor of the bathroom in the nurses home, looking at a spot on the ceiling, completely unable to move. The second I moved my head, my heart raced and I started vomiting! I had ringing in the ears and couldn't walk a straight line.

After another several visits to doctors and specialists, I was diagnosed with menieres disease - which is an inner ear disorder. I was told to lower salt intake, and decrease stress. It got to the point where I was literally running into walls at work, and couldn't stand for more than a few minutes. I lasted 2 years in Radiotherapy before the symptoms forced me to change careers - I'm now in cancer research - a desk job.

Over the last few months the symptoms got worse, and frustrated I changed doctors (yet again - think this was number 10!) Hint: try female doctors - they dont do the "neurotic woman" thing. I demanded to find out once and for all what was going on. Thankfully my parents went to the same doctor - and my father saying "thank goodness she has found a doctor who will actually listen!" seemed to do the trick. She referred me to have a ecg (checking for epillepsy) - normal. She seemed at a bit of a loss what to do when I suggested the tilt table test. She referred me to a Cardiologist, saying I will have to wait a couple of months to get in. As I work in the medical field - and live in a rural area where all medical people know each other - I was able to manipulate this and got in within 2 weeks! I had an ekg - normal. They put me on a 24hr halter monitor - and there were a few glitches in my heart beat, which led to them giving me a tilt table test - POSITIVE!

Finally, I got the diagnosis of dysautonomia - and told the menieres diagnosis was wrong. Instead of lowering salt, I should increase it. Instead of avoiding coffee, I should drink it!

Unfortunately, I will never be able to drive, and can never return to my Radiotherapy career, but at least I know what it is now. I control it by cutting out all wheat/gluten (helps a lot) and having a pinch of salt a day, and 2-3 coffees a day. Still have occassional bad days - but a heap better than it was. I am still able to work, and live independently.

My suggestion:

Cut out wheat/gluten all together for about a month, see if it helps

Demand referals. I see you are about to go to the cardiologist. Ask for a 24 hour halter monitor, and a tilt table test. As uncomfortable as it is, you may get your diagnosis!

One thing to note - doctors NEVER like to say the words "I do not know" - so if they don't know the answer, they often shift the blame to the patient, suggesting they are making it all up, or fob them off. Frustrating as it is - if you KNOW there is a problem, you need to pretty much do all the research and reading yourself, and then demand the referrals needed.

Good luck!
612876 tn?1355514495
The first thing I would recommend you doing is going out and getting a home blood pressure cuff that has a memory which will store your readings.  Start taking regular readings lying down, sitting, and standing.  Make sure you have been lying down at rest for a few minutes before taking that reading for it to be accurate, legs must be uncrossed and arm at chest level for sitting reading, and stand for at least a minute or so before taking a standing reading (but it may be useful to continue taking readings as you stand for longer to see if it changes the longer you stand still).  **IF you are a fainter, don't take standing blood pressures without someone there to catch you!!**  Dutifully record these blood pressures and heart rates and take note if your body is having a major change in blood pressure or heart rate in response to standing; this would be a sign of orthostatic intolerance and should be brought to the attention of your doctor/cardiologist.

You can also get heart rate watches like athletes use at sporting goods stores.  There are some that give a one-time reading by putting your fingers on metal plates on the watch face, but the more accurate ones require you to wear a chest strap and give a constant, beat-to-beat heart rate readout.  This can allow you to monitor for bouts of tachycardia or bradycardia as they occur, and note these to bring to your doc as well.

Most patients' PVCs (and ectopic beats in general) are benign, and as such, the tendency is for doctors to give little regard to them.  This is not to say that they are not bothersome to the patient.  

Do you have copies of your abnormal EKGs yourself?  If you haven't already, I would work on getting copies of your medical records from all of the incidents you described so you have them all in one place and can take them to any specialist of your choosing.  (And never hand them over, just let them make a copy and give you back your originals.)

There are long-term solutions to event monitoring if a doctor deems it is appropriate.  Several people on this forum have experience with internal loop recorders, which are implanted under the skin on the chest and can remain as long as the battery life (1-2.5 years, depending on the model).  Here's the one that I currently have in me:
I don't know whether patients ever get loop recorders like that without having a history of syncope, but it can't hurt to ask, since you've had difficulty catching your episodes on the short-term event recorders.

I'm sorry you're suffering so much.  I wish I could think of more to tell you.  Hopefully when I'm feeling better myself I can catch up with you again.
Avatar universal
Have you ever had ant testing done to see if you have Celiac disease.  Whilst I was in hosp they done stomach biopsies on me and found out I am a celiac.  I also had a positive tilt table test for POTS but a confirmed diagnosis has not been made yet (other causes of my autonomic dysfunction are being investigated first).

On the Wikpedia website, on their POTS information pages, many causes and differential diagnosis are named, Celiac being one of them.  It says that celiac disease has to be ruled out (amongst other conditions) before a  POTS diagnosis can be made.  Following a strict Gluten Free diet has helped me feel better (along with Fludrocortisone) and I have read several articles relating the two.  This does not imply that all POTS patients have celiac but maybe in some gluten is an issue.

I am new to all this so am still learning and hope my information is accurate (their are many websites with misleading info)
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