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What is happening to me? So scared!

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Posted 3/4/2007 10:38 AM (GMT -8)

As of right now the only thing my Cardiologist has diagnosed me with is Mitral Valve Prolapse (which doesn’t show up on any Echo that I’ve had, but he believes I have it), and he doesn’t like how fast my heart beats, so he put me on Toprol 25mg.

I was on a Holter Monitor and as luck would have it, I didn’t have any PVC’s that day. I haven’t gotten the results back from that yet.

I keep having these "episodes", where I have extreme shortness of breath, my heart beats really fast, my vision kind of "glazes over", and I feel like I’m going to pass out. It’s the scariest thing.

I honestly don’t know what is causing these episodes. Yesterday I was getting ready to go to a dinner and was getting my hair done when all of a sudden one of the episodes hit. Oddly enough, the hair spray that she was using seemed like it wasaggravating my symptoms. I have no idea if certain chemicals or sprays can make you feel like that, but I just noticed that I had to cover my mouth and nose when she was spraying my hair, or else it made my shortness of breath worse.

I’m so scared that there’s something really wrong with my heart, not as far as heart disease, but an arrythmia or something. I just hate not knowing when its going to hit and in my opinion, there’s nothing worse than not being able to get a full breath.

I’ve had multiple EKG’s, Echos, and now the Holter Monitor. I don’t know what tests are left.

Can anyone tell me what is going on or what it sounds like? Thanks in advance for your help, this is all still new to me.

Also, would MVP cause these episodes?

Posted 3/4/2007 12:16 PM (GMT -8)
HI hun....You sound so much like me. Have you had your thyroid checked. It seems you've had a lot of work up on your heart which seems to rule out any heart issues. Did the doctor say if the MVP could be the cause. Other things can cause those types of symptoms. What I mean is those types of symptoms don't necessarily mean that its originating from the heart. The cause could be somewhere else. Please let me know, and by the way, this has been going on for me for one year and still no diagnosis.

 

Posted 3/4/2007 12:32 PM (GMT -8)

Bella,

I would definitely recommend you get your TSH (thyroid-stimulating hormone) level checked, if I haven't told you before.  A too-low TSH (indicating hyperthyroid) could cause these symptoms; I was having the same thing - rapid heart beat, palpitations, etc., plus diarrhea and weight loss and all kinds of other yumminess - and it turned out that my thyroid is a mess (I am on 50 mg of atenolol (almost identical to Toprol) a day until I see the endocrinologist, and it helps a lot).  I am now on a mission to have everyone with any of these symptoms get their thyroid levels checked!

The TSH can be checked with a simple blood test and is very sensitive.  If your TSH is within normal limits, your thyroid is A-OK.  If that's the case, your symptoms could be caused by anxiety; if you look over on the anxiety/panic forum, lots of members have the exact same symptoms, despite their hearts being "normal."

I don't think MVP would cause such severe symptoms, especially if the prolapse didn't even show up on your echocardiogram.  But who knows?

I'm sorry you're feeling so cruddy.  Keep us posted.

Posted 3/4/2007 5:49 PM (GMT -8)
Hi Neurogurl & Sarita,

My doctor gave me a blood test to check my Thyroid and said my levels were normal. Are there any other Thyroid tests that I should have? I'd give anything for these symptoms to not be coming from my heart.
Posted 3/4/2007 11:33 PM (GMT -8)
If your initial thyroid panel came back ok, you're thyroid is probably fine.  The first test they do is the TSH and they'll usually only go further if that one is abnormal.  Do you have a copy of the test results, by any chance?

Posted 3/5/2007 12:06 AM (GMT -8)
I didn't get a copy of the results, but I can call and see if they will make me a copy. Is there something specific I should look for?
Posted 3/5/2007 6:43 AM (GMT -8)
Hi Bella, Im not sure the answer to that question so lets see what Sarita has to say. But I wanted to ask you if you could post all of your symptoms for me. Im no doctor but I'm just curious as to how close they are to mine and also if there is a chance that the cause is somewhere other than the heart which I have a feeling it is since you've had so much work up on your heart and everything is normal (besides MVP). I am going to do some research on MVP and the symptoms and I will let you know. I doubt the MVP is causing it tho because I have friends with that and they are perfectly fine.
Posted 3/5/2007 9:57 AM (GMT -8)
Hi Neurogurl,

These are my symptoms. I don't have all of them all the time, and they can last from a few hours to weeks at a time.

Chest pain and left shoulder pain (my original complaint in November that led me to the ER and doctors offices), Dizziness, Shortness of breath, Heart Palpitations, Vertigo, Rib pain, Sternum pain, Arm Pain (shooting pain down both arms), Pain between Wrist and Elbows, Knee Pain, Pain in Shoulder Blades, Back Pain, Tingling in Hands and Feet, Burning sensation on left side of face, head, and upper back, Tenderness under arms on both sides, Pulsing sensation in ribs, Stomach Pain, Headaches, Pain in Hips, Vibrating sensation in left foot, pulsing in left ear.

My newest symptoms are these episodes where I have extreme shortness of breath, my heart beats really fast, my vision kind of "glazes over", and I feel like I’m going to pass out. In my original post, I was saying how I thought the hair spray my stylist was using was aggravating my symptoms, so I don't know if there's some chemical sensitivity going on too or what.

A friend of mine emailed me some links on Dysautonomia, and it talked about the "greying out" episodes, so I'm looking further into that to see if that might give me some answers. On one of the web sites, it talks about some correlation between MVP and Dysautonomia, but I'm still a little confused as to what the correlation is.

What are some of your symptoms?
Posted 3/5/2007 10:06 AM (GMT -8)
Bella if you do get a copy of your lab tests here is a link to help understand what they are testing for and such...

http://www.labtestsonline.org/understanding/index.html

Posted 3/6/2007 10:21 AM (GMT -8)

Bella, the one thing you'd want to look at it in your labs is your TSH, which usually ranges from 0.3-3.0 (but these numbers can vary among labs).  They may have also measured free T4 and T3, but generally if the TSH is within normal limits then the T4/T3 would also be normal. 

Did these symptoms start out of the blue, or come on gradually over a period of months/years?

Posted 3/6/2007 10:24 AM (GMT -8)
Sarita, my first symptoms (left sided chest pain and shoulder pain), started suddenly in November.
Posted 3/6/2007 1:16 PM (GMT -8)
Hi Bella...my symptoms are almost identical to yours. Only the pain down the arm is only in my left arm. Did you ever bring up the idea of Fibromyalgia. Have you had a brain MRI?
Posted 3/6/2007 2:07 PM (GMT -8)
Hi Neurogurl, I have an appointment with a Rheumatologist next week to see about the Fibromyalgia (that's what my doctor thinks I have, but my Cardiologist doesn't think so). I had an MRI of my brain (no contrast), and apparently there was more white matter than is normal, so they sent me to a Neurologist. He was a real jerk, in my opinion. He basically told me it wasn't MS because there would be more white matter than was seen on my MRI, but never offered any opinion on what could be wrong with me.

I'm not sure if a Rheumatologist is the right doctor to bring up the Dysautonomia (which has links to MVP and Fibromyalgia), but I'm going to give it a try.

Have your doctors given you any diagnosis?
Posted 3/6/2007 2:45 PM (GMT -8)
Hi Bella...no diagnosis yet. I am soo scared just like you. Please feel free to email me at candy8126@aol.com. I am going to be seeing a Rheumatologist too. I seriously don't think this is your heart thats causing the problems but I do feel its affecting your heart. I think it will be just fine to talk to the Rheumy about the dysatuonomia. Some neuro's can be so mean. You will be ok, try to stay calm. Please email me sometime...we will get to the bottom of this.
Posted 3/6/2007 4:12 PM (GMT -8)
Hi Neurogurl,

I emailed you :)
Posted 3/9/2007 4:47 PM (GMT -8)
Hi Bella, just want to say how sorry i am that you STILL do not know what is going on.  the thing about the hairspray is pretty normal, i cannot breathe when i spray my hair, i have to spray and hold my breath and run out of the bathroom.   i have a lot of you pains but njot to the extreme you are speaking of. be strong and keep us posted

 

Posted 3/10/2007 8:53 AM (GMT -8)
Hi Dreamgirl, thank you for your kind words. I couldn't believe it with the hairspray! I've never had a problem with that before, and when I came home to respray my hair (I used a different brand), it was fine. It's all just so strange.
Posted 3/11/2007 6:18 PM (GMT -8)
Hi Violets,

Thank you so much for your suggestion. I will post something over at the Lyme forum. I did have a blood test for Lyme, but it was negative. Do you know of other tests that would show if there was Lyme or not?

Posted 3/12/2007 1:29 AM (GMT -8)
These symptoms could be indicative of many ailments...tell us again what you've tried to alleviate your symptoms?
Posted 3/12/2007 2:03 PM (GMT -8)
Hi Sarita,

Originally, I was taking Motrin to alleviate my initital complaints of chest and shoulder pain. That didn't help. For the rest of my symptoms, I was never really given anything other than Naproxen, which is a muscle relaxer.

I take 25mg of Toprol once a day for my fast heartbeat and heart palpitations. The Toprol seems to work for me.

As of right now, it could be the MVP, Autonomic Dysfunction, Fibromyalgia, or Lyme. The Rheumatologist I saw today is leaning toward Fibromyalgia, but he said my cardiac symtpoms are over and above what is normal for someone with Fibromyalgia, so that is a cause for concern. He also said that it is possible that I am suffering from more than one thing. I went for bloodowork today, including the Western Blot test for Lyme (I had the ELISA test before), so all I can do is see how that comes back and continue to do my research.
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