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Help with Holter/Echo results - Thanks!

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  • Help with Holter/Echo results - Thanks!

    [Help with Holter/Echo results - Thanks!]

    Author: Eve (---.fuse.net)

    Date: 10-28-02 21:32

    I found out several months ago that my grandpa and aunt on my mother's side both had/have Hypertrophic Cardiomyapothy. I worked with Lisa to get the name of a good cardiologist in Cincinnati to screen me for this. I have had episodes of lightheadedness, near fainting, fatigue, and infrequent chest pains. Because of the near fainting, I was given a 24-hour Holter Monitor as well as an Echo test.

    Well, I met with the cardiologist today to go over my results. He basically said I do not have HCM. (phew!) When he was going over what they did find, it seemed to make sense. I asked for copies of the summary pages, and now I have found things that don't make sense to me. I was hoping for help understanding this. If I need to, I will try calling the office to get further clarification.

    I have read previous posts about the Echo measurements and I do look fine there. Where I am unclear is some of the findings. He told me that I have mild miltral valve prolapse. He said that was not a big deal because I do not have leakage and that 5% of women have this. I found several other phrases on the summary that he did not explain (maybe because it is just related to the prolapse?) It stated that I have mild myxomatous thickening in the mitral vavlue leaflets and minimal tricupid insuffiency. My estimated PA systolic pressure is 20.

    In terms of my holter monitor, he said that I had a few irregular heartbeats but that 70% of the population has some on any given day. My test shows 32 rare premature ventricular etopic beats and 6 rare premature supraventricular etopic beats. There were no VTach or SVtach runs. My pulse rate ranged from 57 BPM to 160 BPM with an averge of 84 BPM.

    What really confused me with this test is the phrase "sinus arrhythmia present the majority of the test". Doesn't that mean that I had an irregular heartbeat during most of the test? I am really confused with that. There was also the phrase "there were several episodes of sinus tachycardia during waking hours".

    I would love to just be glad that I screened clean with HCM, however I do have symptoms that are not really explained. When I asked him why he thought I had the symptoms occasionally, he said that maybe my brain sends the wrong signals for blood pressure and things like that which causes me to be dizzy when standing up. I hope I am explaining this well, but I unfortunately did not take notes at the time. He said he could do a tilt-table test for that, but that I did not seem to need it because my symptoms were not too frequent or severe. I appreciate any help you can give me explaining those few phrases on my results.

    Thanks!!

    Eve

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 10-28-02 23:19

    Dear Eve,

    Myxomatous is a fancy way of saying extra tissue, so myxomatous thickening is redunant. MVP is sometimes called Myxomatous mitral valve.

    Having a heart rate range from 57 to 160 is a bit unusual --assuming you are not exercising in there. 60-80 is the normal resting range. 160 is very fast and can make you dizzy. 160 would be the sinus tachycardia. Anything over 100 is considered tachycardia (too fast). Sinus means regular as in a regular repeating pattern.

    sinus arrhythmia means: "A variation in sinus rhythm which is usually related to respiratory rate and results from increased vagal tone inhibition. The heart rate increass with inspiration and decreases with exhalation." Your heart beat itself was normal, but the heart rate would speed up and slow down with each breath.

    You need to think of the heart rhythm as having two parts. The type and the speed. Each heart beat is a contraction and release that should be exactly the same each time and there should be the same time span between each beat. The time between beats shortens as you are under stress or exercising (heart rate increase, tachycardia). The contraction and release pattern can become altered due to disease, drugs, etc, etc. An arrhythmia is any abnormality in the speed or the type.

    Your doctor put you on a beta-blocker for the MVP and the tachycardia, right?

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-29-02 08:57

    Eve,

    This does sound a bit odd given your family history. I am really not to sure what to say at this point and will seek the help of some of our wonderful medical advisors for input.

    I would at the very least encourgae you to maintain a screening plan of every 5 years as HCM can have adult onset and these may be early signs - -this is only a speculation at this point.

    All the best,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Eve (---.cintasmail.com)

    Date: 10-29-02 09:49

    Thanks for the input so far. To give just a little more info, I am currently 26 years old. The only other point of interest is that the person doing the echo had a terrible time seeing my heart. She said my ribs were too close together and my lungs were in the way and so I had to spend half the test exhaling and then holding my breath! I do not know if that would make it harder for accurate measurements or not.

    So it sounds like sinus arrhthmia is normal given that it occurs because of breathing? In terms of my max heartrate of 160, in the report it stated that it occurred at 1:04 PM which is when I was walking back into work after lunch. I had meant to do some more strenous activity during the holter test that normally brings on symptoms (like pulling weeds in the garden), but I did not get a chance due to the bad timing of the test. My mom had been in the hospital for a kidney stone infection that had become septic and I visited her instead after work. I did get a chance to play with my dog which brought on the lightheadedness and one of the supraventricular events happened during that time. I only have the summary page of my holter test, so I do not know exactly when the other episodes of tachycardia occurred to see if there was a good explanation.

    The cardiologist did not put me on beta blockers or anything else. He seemed to think that I am perfectly fine and do not have anything to worry about. In fact, he said he does not recommend to get an echo again because if I don't have it now I should not have it in the future. I had read here that it could occur later and his answer to that was that he corresponds with an expert in HCM at Harvard who told him that if it has not shown up after your early 20's you should be okay. He said that he has a special interest in HCM because he does a lot of sports physicals for young ones, so I think he does seem pretty knowledgeble about the disease (with the exception of adult onset).

    Thanks for all your help!

    Eve

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 10-29-02 10:17

    Dear Eve,

    Well, since Lisa had helped you find this guy, I set aside my reservations about your echo and the doctor, but your last post put me over the edge.

    Please call Lisa and have her help you get to a real HCM _specialist_ and not someone who just thinks it is really interesting. I don't know who he is talking to at Harvard, but I think they know better than to say that if you don't have it by 25, you don't have it. Frankly, that theory has been debunked!!!

    You need an echo done by someone who knows how to get a good "window" and start over. Walking shouldn't put you at 160 and playing with your dog shouldn't make you dizzy. None of that is normal and sinus arrhythmia is not normal either --not terrible, but not normal. Please get a second opinion asap.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Leon Miller (---.cap.east.verizon.net)

    Date: 10-29-02 13:22

    Hi Eve. I was diagnosed with HCM at 34, when I began to have major symptoms. That 25 mark certainly did not hold true for me.

    Leon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Julie (---.cinci.rr.com)

    Date: 10-29-02 19:29

    Hi Eve,

    Julie from Cinti here too..I believe we have e-mailed yes???

    My brother died at 37 with no knowledge of HCM and I was diagnosed at 35. I had an echo at 24 because of "flutters" and was diagnosed with mitral valve prolapse. So the disease manifested in me somewhere between 24 and 35.

    I would also agree with theothers that you may wish to get another opinion from a HCM specialist.

    Take care,

    Julie E.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Bob Pensack,MD (---.tnt2.steamboat-springs.co.da.uu.net)

    Date: 10-29-02 23:48

    Eve,

    Sarah is correct. It may be that you don't have HCM but that has not yet been established. I would advise that you first make an appointment with Dr. Harry Lever at the Cleveland Clinic. He is one of the true experts available to us and Cleveland is not too far from Cincinatti.He is one of the best. Also, it would be advisable to get your aunt and you to send blood samples to Dr. Christine Seidman at Harvard. She is the genetic guru on HCM. Call Sarah or Lisa. They can give you contact info on both of these physicians.

    The idea that if HCM is not seen by age twenty it won't be seen at all is completely incorrect. This was thought to be correct years ago. Your findings and symptoms could be explained by Mitral Valve Prolapse alone or other conditions. In any event you need a thorough workup. Please see Dr. Lever.

    Sincerely, Bob Pensack,MD

    author-Raising Lazarus

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Edlyn (---.tstonramp.com)

    Date: 10-30-02 03:03

    Eve:

    Something does not seem right and you really should be evaluated further. You may need a 48 hour holter to get a more conclusive readout as symptoms are not always running close together and may be missed completely on a 24 hour one (I am assuming it was a 24 hour holter). My first echo was a resting one and showed mild obstruction so my cardiologist said not to worry (in fact he told me that if I was younger in my 20s I would have reason to worry but at my age all should be okay-seems just the opposite of what they were telling you, in my opinion both answers are wrong). My internist refused to accept that answer and sent me back for a stress echo which was almost off the charts with massive obstruction at peak exercise (and the cardiologist still wasn't impressed or concerned). Again, my internist refused to accept such lassez faire attitude and encouraged me to seek expert opinion from those who specialize in the field (I was fortunate enough to get an appointment with Dr. Lever at the Cleveland Heart Clinic). I am 49, my symptoms began when I was 45 and I can now barely make it up one flight of stairs! Do yourself a big favor, see a specialist who has treated hundreds of cases and has an idea of what to expect from the unexpected.

    Best of luck,

    Edlyn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Help with Holter/Echo results - Thanks!]

    Author: Eve (---.cintasmail.com)

    Date: 10-30-02 10:14

    I really appreciate all the advice you guys have given me! (And yes, Julie, I have corresponded with you!) I have been researching it a lot on the Internet and I think I might have found explanations for my symptoms that don’t necessarily correspond to the heart. I guess I am tackling this angle because right before I had my Echo, my identical twin sister and my Mom (49 yrs old) had theirs. Both of them were negative for HCM but since they did not have experts read their Echos, I still wanted to go through with my own. After getting my results, I asked my twin to have her results faxed to her (they had just gone over it with her on the phone). Her Echo had her normal in every way. It did not mention any MVP or tricuspid insufficiency at all. So, I realize that HCM has been known to develop later in life and been known to skip generations, but what are the chances of both happening to me?

    Since I still have unexplained symptoms, I have been researching it on the Internet. I found that vasovagal syncope really describes my near fainting episodes. Most of mine have occurred in the morning and during or right after a shower. This is from About.com:

    -- “It is more likely to occur after a viral illness, after exercise, after a warm shower, or early in the morning – any time that relative dehydration is present, and dilation of the blood vessels in the legs would be more likely to produce a significant drop in blood pressure. Furthermore, vasovagal syncope is often preceded by a few seconds or a few minutes of warning symptoms. Often, these symptoms include lightheadedness, ringing in the ears, visual disturbances, sweating and/or nausea. Because of such “warning symptoms,” people who have had one or two episodes of syncope are frequently able to tell when an event is about to occur. And importantly, if they recognize the warning symptoms, they are able to abort the blackout simply by lying down and elevating the legs. (“Aborting” syncope is not possible with most other forms of syncope.)” --

    As for my other symptoms of dizziness, fatigue, and episodes of tachycardia, that might be explained by dysautonomia which means that the system that handles unconscious bodily functions is out of balance. This is what About.com said about this:

    -- “Symptoms can include frequent, vague but disturbing aches and pains, faintness, fatigue, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms, sweating, dizziness, blurred vision, numbness and tingling, anxiety and depression.

    Sufferers of dysautonomia can experience all these symptoms or just a few of them, and can experience different symptoms at different times. The symptoms are often fleeting and unpredictable, but in some instances can be triggered by exertion, standing up, or eating certain foods. Between episodes people with dysautonomia are usually normal in every other way. The lack of objective findings causes doctors to write many of these patients off as being anxious or hysterical.

    Depending on their symptoms and which doctors they see, patients with dysautonomia are given one of several diagnoses, including chronic fatigue syndrome (CFS,) vasovagal or neurocardiogenic syncope, panic attacks, anxiety, inappropriate sinus tachycardia (IST,) irritable bowel syndrome, postural orthostatic tachycardia syndrome (POTS,) or fibromyalgia.

    Apparently, for most sufferers of dysautonomia, the symptoms eventually either go away or improve to the point that they are able to lead nearly normal lives. However, until that happens many victims of dysautonomia experience symptoms that completely disrupt their lives, and the search for competent medical help is often a difficult one.”--

    I guess I am posting all this because it might help others out there who have symptoms but do not have the heart measurements to explain them. It sounds like dysautonomia is similar to HCM in that a lot of doctors don’t understand it and consider the sufferers to be crazy or exaggerating their problems.

    What I plan to do at this point is see why my internal medicine doctor thinks I should do. I found her during my search for a good cardiologist and I really like her. She took over 30 minutes with me to go over all of the problems I have and did not make me feel like it was in my head. She was the one who prescribed the 24-Holter Monitor in addition to the standard Echo.

    Again thank you for all your help!
    NOTE: This is a post from the previous forum message board.

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