Mvp/mvps/vr

[prttyprttyprncss]

Greetings again!

I was hoping you all could again clear the fogginess of this new condition of mine. When I first got my diagnosis from my dr, he indicated that surgery would be an inevitability and referred me to a cardiologist. Granted, he's NOT a cardiologist, but still, he's been my PCP since I was a wee lass and I trust his opinion. The cardiologist barely glanced at my echo, said she wasn't concerned with the MVP, BAV or insufficiencies in 3 of my 4 valves. She gave me the month long monitor and within 4 days prescribed the Verapamil SR. She then referred me to a second cardiologist for a tilt-table test, which I have this coming Tuesday. He went on about adrenaline and the effects of it on the body, my body not responding to it appropriately and medications to correct it. He didn't put a name to the condition, but from what I've been able to research, it's MVPS. When I asked him about my valve issues, he asked his nurse if he had a copy of my echo, found it and then requested his nurse to get a copy of the actual tape. He mentioned putting me on a beta-blocker. I asked if it was ok to take it with my inhaler and the Verapamil SR and he seemed surprised I was on both. OK... did he NOT have a copy of the 10 page history I had to fill out and fax back to his office before I ever peeked in his door?!?! Ok, that was off topic. Anyhow. My confusion is this. IS MVPS a medical condition brought on by MVP or vice-versa? Is it even important to know? Did any of you have MVPS before you had VR or are these symptoms "in my head" and I just need to stop worrying about them and they will go away?! It's all very frustrating because, to put it bluntly, I feel like CRAP! I have a tendacy to want to know everything about a situation when I'm facing it, and most of the sites and books I've found don't seem to have a clear answer. On another board devoted to just MVP, I've seen a lot of dr's tell their patients "to stop worrying". Is this a stress-related disorder? Until the diagnosis, I lived a fairly stress-free life.

Shelia

PS.. how low is too low when it comes to blood pressure? I went from being inapprpriately high, to an average of 99/56 for the last 3 days. I feel like the life force is being drained by the dark forces...Even after a 4 hour house cleaning session It was only 101/62. Is the Verapamil working TOO well?!

 

[KimC]

Hi,

I tried several calcium channel blockers before finding one that created fewer symptoms. My BP is typically 90/55. The fatigue you described is common. Be sure to ask your doc if you can try different ones. Keep yourself hydrated, and never skip a meal. I take my meds at night, which seems to help.

I know how you feel re: your cardio's lack of prep. This could be a sign that you need to find another one. I hated feeling like not only am I the patient, but the secretary and nurse, too. Today's doctors don't have the time or administrative support like they used to. And women often don't get taken seriously.

Be assertive in your care. Act professionally, type out any questions, and go over your history and diagnoses in detail with your doc.

Best,

 

[ladyofthelake]

Mvps

Mvps

Shelia,

I have MVP, MVPS and Myxomatous Mitral Valve Disease. UGH.. For years I thought I just had a benign non progressive case of MVP. I was wrong, I started with MVPS, later developed MVP and through years of stress on the valve with deficencies I now have the Myxo valve disease which will require eventual surgery for continued survival.. UGH again. There is very little interest in any of these subjects in the medical community so the answers to your questions are not readily available, medically. The answers I am finding are slowly unfolding in medicine outside of the US and with independant researchers.

MVPS it thought to be co existing in 40+% of the MVP population. It was given the name of Mitral Valve Prolapse Syndrome because no one knew what it was but the symptoms of it were common in the Mitral Valve Prolapse population. Newer research is showing that MVPS may be the cause of MVP but these facts our not completely out yet. Nor will they be, as it is not easily accepted in the medical community. The exact defination of MVPS is dysautonomia. This type of dysautonomia is a dysfunction in the autonomic nerves (our involuntary control nerves). It may be hereditary or brought on by a viral infection in youth. The nerves are scarred so they will dehydrate often causing a chronic and hard to detect loss of magnesium which cycles to the vise versa. The symptoms of MVPS can be a mile long but the first ususal symptoms occur as panic attacts as the bodies main vagus nerve is learning it can not process our own adrenaline well. This why it gets labled as a psychiatric condition without further investigation. The first time my former cardiologist mentioned his requirement to ask me about MVPS he warned me that if I answered yes to his questions he would document it as a psychiatric condition and make a referral from that. lol nice guy that he was... So no I had no symptoms at all, until I eventually fired him.

Other common symptoms are IBS, tachycardia upon waking, tachycardia or ectopic beats in exteme tempertures, nerves twitching from dehydrated nerves, cold hand and feet from blood pulling in extremities, the dysautonomia can stress the glands and create things like thyroid conditions, stimulant drug sensativity, in women it can cause hormone imbalance PCOS due to the blood pulling near the ovaries, in hot tempertures one can get a dizziness along with heart rhtyhm symptoms, there can be an exercise intolerance that surfaces as a heart rhythm problem and there can be a noticable edema when the body is over bourdoned with it's own adrenline etc. etc. (that was a partical list). If the dysautonimia is severe then there can be a drop of blood volume when you stand suddenly which inturn will cause heart racing and a sudden drop in blood pressure/dizziness. That type of dysautonomia is more concerning to the medical community because certain types of medication like nitris oxide and other anesthesias can have very bad effects. So the degree that causes a sudden blood pressure drop is called Orthrostatic Intolerance. All these things seem to happen without much attention until MVP shows up. The very same magnesium deficiency that happens with MVPS is now being looked at as the reason the gelatinous tissue of myxomatous diesase developes on the mitral valve leaflets. It is being studied that the lack of magnesium in a severity can cause a loss of hyaluronic acid that coats the valve leaflets, without the necessary amount hyaluronic acid the valve then developes defects in its collagen tissue and begins to fail/prolapse. The hyaluronic acid is dependant on magnesium and is what keeps the valve tissue hydrated and healthy. A tilt table test is not the most conculsive test there is but I caution you that they do tend to use a stimulant drug in an IV for the tilt table test. If I were having problems with my heart rhythm as I usually do I would REFUSE the drug. The test can be done without the medication. The medication is only used to speed the results. There are not many doctors that treat MVPS with the exception of a few neurologists and cardiologists, my new cardiologist and several MVP dysautonomic clinics in the country. The main problem with MVPS is heart rhythm issues which makes it extremely hard to tell if it is a problem as a result of the MVP or if it is an issue of the autonomic nerves until an echocardiogram shows that the valve is not the culprit. Recommendations for treating MVPS are drinking 50+ ozs of water daily and evaluation to use mineral therapy and exercise. Standard serum blood testing will not show the magnesium deficency for MVP and MVPS because they can only check for a severe loss not a chronic one. A magnesium loading test with 24 hour urine testing is the test that shows the chronic loss, many doctors do not access this test. I think your doctor can answer what is best for you with a blood pressure reading. Hope I covered some of your questions.

Lisa

 

[MitralMan]

NYU has just opened a dysautonomia center...

NYU has just opened a dysautonomia center...

...and I think it comes fully on-line fall '05 (right now, I think it's children only). As I understand it, MVPS is a diagnosis that some doctors like, others scoff at. I believe in 2001 a genetic link to dysautonomia was discovered; I believe it is predominantly (exclusively?) in the Ashkenazi population?

I think there's something to it.

The stressors on me by 2001 led to an average of 3 migraines a month and classic IBS (I'm male). Arrythmia was common for me; couldn't stand the heat or humidity (as in pass out); would get panic attacks randomly. Regular headaches every couple of days. Cold extremities. I'd had diagnosed MVP for years by this point.

Changed my situation and my stressors. No more IBS. Migraines basically disappeared. Had MVR 6 weeks ago, and not one headache since. No panic attacks (could be blood pressure meds, too, who knows?).

Still get an occasional arrythmia, but six weeks post-op I'll chalk that up to my heart going "WTF did you just do to me?"

 

[KimC]

Mitral Man, GOOD FOR YOU! Keep us posted on your recovery.

Lisa, et al.

If you're into research, then I highly recommend doing a Search on "Womens Ischemia Syndrome Evaluation," a study that I'm participating in. The Natl. Heart, Lung & Blood Institute is sponsoring it. JAMA, the Journal of American Medical Assoc. published several findings, including the WISE study on the evolving philosophy behind female anginal syndromes.

Dr. Carl Pepine, the principal investigator is trying to develop the diagnostics to detect pathologies of the microvascular.

 

[ladyofthelake]

Study

Study

Kim,

I will look into it. It sounds interesting and if I am not wiser about my life style habits including sediment computer time, ischemia will be my next issue to contend with so it may well come in handy! lol Thank you Kim. I hope you have great results in the study! Blessings,

Lisa

 

[strawberry]

Lisa,

I'm curious... are none of your other valves affected by the myxomatous degeneration? The only valve of mine that is NOT leaking is the mitral but they can see it's myxo. I asked my cardio what was causing my mild TR and AI and she said she thought it was the same process. I wonder why they can't see the myxo on those valves (It sounded like she was guessing that was the reason). My first cardio was a jerk. When I asked him if my AI would get worse he said "I'd be more worried about the mitral valve" which surprised me since it wasn't leaking and MVP I always thought was pretty benign. The second one said we have to keep an eye on it cause it could deteriorate or could snap. I'm trying to get a grip on what the chances are I will need a repair/replacement.
BTW, I have the classic symptoms of MVPS: palps, strong adrenaline reactions, pounding pulse, feel faint if I stand up to fast, cold intolerance.

 

[ladyofthelake]

Valves

Valves

strawberry,

I am not sure if my tricuspid valve has been affected by the myxomatous but now that you put it that way I will put that top on my list of new questions for my cardiologist. I have recently learned that I have myxomatous right before this past Christmas. What a nice holiday present that was. I didn't really even develope myxomatous until 1993, 15 years after my mild and non progressive MVP had been first diagnosed . All the other valves were seen to be working efficently. The myxo coincidentally started to show up in just 2 years after I was placed on a anti arrhythmic drug that seriously depletes magnesium. I heard one light mention of a very slight leak of the tricuspid on the echo before last. (with my former very bad cardiologist) I ask about it then and they said "oh it is really nothing just a normal finding". It occured in my recent echo of 2 months ago and my new cardiologist said that it was trace regurg and nothing that she is concerned about.

As I compare all the echo reports I now have for the past 12 years I see that there is no prolapse listed with the tricuspid and no other valves have the myxomatous at this point. My mitral has progressed from a 1+ MR to a 2+MR in the time that it has shown the myxomatous changes. Along with this I have trace TR. My cardiologist said that trace TR is common in the aging population so I am not quite sure what to think other than I can't wait to be completley detoxed off this Mag depleting drug I got stuck on years ago (I have less than 3 more months on it) and hopefully I will keep a good hydration level and things won't get worse with the other valves. I certainly am not prepared to hear that all the valves are diseased but maybe I need to buckle up! I do know that my cardiologist has a firm opinion that the type of surgery I will need for the mitral is replacement. I have not gotten enough detail from her about that and I am having difficulty accepting that replacement is my only option when I am no were near the surgery talking time with a surgeon.

It is good to hear that you don't have any MR that has been visable with the myxo noticed on your mitral valve so hopefully your AI and TR will give you a long time of a very mild condition which would help you to have room for new technology. I am not clear how much hope to talk about with the growing repair trend with the experienced surgerons but I will hope and pray for a simplier solution for both of us. Best Wishes,


Lisa

 

[prttyprttyprncss]

You guys are the best!

Funny, about 3 years ago, I was diagnosed with IBS and decided to work with my doctor and treat it through diet rather than medication. A lot of the symptoms of MVPS, I've had for years. In and of themselves, they weren't any reason to go rushing off to the doctor. I've always had the extreme temp intolerance - can't breathe in the cold and pass out in the hot, but again, thought I was just a wimp! I'm tired of always feeling tired. I always have cold feet, hands and nose. I have a left foot and ankle that swell at the oddest times, dizziness and lightheadedness when I stand up after sitting or when I first get outta bed. I have taken 2 Excedrin Migraine capsules for 14 & 18 days straight because of headaches. I buy it in bulk at Sam's. I work full time, have 2 very busy sons and wouldn't dream of taking an afternoon off work to go see my doctor because my nose is always cold. It's nice to know that while there doesn't seem to be a consistent or established treatment, at least it's recognized as... something! I found a website, www.pots.com that lists a lot of the symptoms of MVPS.

I think for now, my 2 cardio's are focusing on my syncope and the dizziness/lightheadedness when I stand and the tachycardia. We'll see if the others take care of themselves. I'd be happy just to get through a week without the bruising and embarrassment of passing out. Both cardio's seem to think my valves are ok for now. But you can bet I'll have questions galore for my main cardio when I go back to her. Even with the mild/trace regurgitation in 3 of my valves, would you all suggest asking for annual echo's? IMHO, I would think they would do at least ONE more to see if it progresses, then if not, knock them back to something less frequent.

Thank you for all your information Lisa. May I ask what medication you were on that depletes the magnesium? I was never much of a water drinker until I started working out about 6 months ago. I weened myself off my drug of choice, Diet Coke (Diet Crack). Went from 6-8 cans a day to 1, 2 when I'm PMS'n. (sorry guys). I've given up chocolate and candies completely, but have been seen at grocery checkout aisles licking the covers of cooking magazines. The only meds I'm on now, that aren't OTC are the albuterol when I exercise and Verapamil SR.

Thanks!

Shelia

 

[ladyofthelake]

The Med.

The Med.

Shelia,

This is just my opinion and maybe not a realistic one with different types of insurances but I have one valve that is diseased and slightly progressive and now another that is showing trace so I am getting a bit parinoid and ask for more than 1 echo a year. I just ended an extremely bad experience with my former cardiologist and my new cardiologist has found a way to manage this request to give me some comfort by ordering a standard echo and then 6 months later allowing me to have an exercise echo. She is really great about providing what ever tests will help ease her patients minds within reason. As long as I have insurance and can handle the costs I would rather have more echos after having a cardiologist neglect to tell me all information about my echos for many years and suddenly I switch doctors and I get bad news.

You are quite welcome for the info and please don't worry, I highly doubt that the drug I am on would be easily prescribed to even a few in this crowd. The name of it is Rythmol, it's a sodium channel blocker. My former cardiologist I believe had some justification to put me on it many years ago when my heart decided to have a short VTach episode for 3 days. But it was a young heart back then. It did not need a drug to numb it for 14 years latter, I was actually completely well from the VTach in 6 months after the extreme event. My former cardio just did not have my health at the top of his list to say the least. He even admitted that he knew I was breaking bones more frequently because the drug was depleting my calcium and I should probably take calcium. Shelia Verapamil is not that bad, it is a calcium channel blocker and it will deplete some calcium but it does not carry the consequences of a sodium channel blocker. It does not deplete magnesium. I am certain there is a new trend in recommendations with cardiology to not use any of the anti arrhythmics for long term maintenance but I know several people on Verapamil that are doing good with it. I am on my second half of my Rythmol detox and I am so far (fingers crossed) doing great with it. The drug must have been so pro arrhythmic in me that in the end I had a hard time telling what was Rythmol withdrawal or what was actual arrhythmia.

I am a little suprised that you are not attributing more issues to the albuterol but if your body is used to it, it could be a non issue. I hope you will do better with getting satisfied with your medical care. I am sure many of us support you to be assertive to learn what you need to know. My only goal in posting what I know about MVPS/dysautonomia is a hope that we can do better with self care to assist ourselves to feel better. Best Wishes,

Lisa

 

[prttyprttyprncss]

albuterol

albuterol

Lisa,

I've only been using the albuteral a few months (since August, I believe) and then, only when I exercise. It's what began this journey. I complained to my PCP that after exercising faithfully for 4-6 times a week for the previous 4 months, I couldn't go any longer than I could when I first began before I started feeling burning pain in my chest, couldn't breathe and began coughing. I also tended to get a very red face while exercising.. not just splotchy, but a VERY red face. My PCP, bless his near-retirement heart handed me an inhaler and said "this should help". The cardio that my cardio referred me to indicated last week that I should plan on giving it up as he doesn't feel I have any sort of asthma. I haven't used it much since all this began and to my way of thinking, the less drugs I'm on, the better.

I've never been very good at taking medications.

 

[ladyofthelake]

Shelia,

This is good to hear because frankly I was having a tough time trying to picture exercising with MVPS and then using albuterol . I would be having a very hard time with that one but we are all very different in our experiences and I suspose it could be possible for others. lol I hope you are feeling better and get good medical news soon.

Lisa