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Dysautonomia MVP
I was diagnosed with MVP 11 yrs ago. Have not had to many problems or symptoms until Dec 2008. I had a run of something at the mall with my kids and thought I was going out. My heart felt like a fish out of water in my chest, tachycardia, shaky, and overall felt real bad real fast. I had stress echo, holter monitor and both came back with tachycardia and few pvcs. By Jan 30th I was at work - I am a manager at healthcare clinic - when my heart started beating funny again and I looked down both my hands were blue. One of the doctors call an ambulance and off to the er I went scared to death. The er dr was a jerk and told me my hands were cold - they were not and still blue and then tested me for drugs which came back negative. I thought I was going to die. Long story short I was put on acebutolol 200mg bid and within 3 months my blood pressure went through the roof and I had dizzy spells and worse heart beats/pvcs. So my primary doctor put me in hospital and switched me to lopressor 25mg bid which quickly increased to 25mg tid along with .25xanax for my now terrible anxiety. My pvcs are daily and worse in the early afternoon and evening. I get runs of pvcs which literally drop me to my knees - possible vtach but my heart comes out of it as quickly as it goes into it. I have been with U of W, Mayo in Rochester, and my cardiologist here who has been my doctor for 11 yrs, my primary has been my doctor for 17yrs. I want my life back. I had been under a great amount of stress before all this began, and I have gained about 30 pds. I am miserable, angry, envious of health people. I was on short term disbability for 2 months this yr. Just went back to work in March. But every day is a struggle. I have to stick to a schedule or I am worse. I also take 250mh magnesium bid. I am going to start taking exercise more seriously and really try to lose weight. I do not smoke or drink any caffiene. I havent had a margarita in a yr since all this started. Any suggestions? I am told I have dysautonomia. My blood pressure still gets real high at any second for no reason. I can tell when it happens because just like my runs of pvcs I get real sick real fast - within seconds. My vision gets blurry and I feel like I am passing out and dizzy. As if my BP was low but its usually 160/120. Sometimes with the pvcs my heart rate gets into the 140s and I feel like I could crawl out of my skin. Sometimes I feel like something is really really wrong but no one will listen. I dont feel normal ever anymore. I have good hrs and bad hrs - no good full days anymore. Any suggestions?? Part of me wishes I would have never started beta blockers but then part of me thinks maybe there helping. I dont know. Very confused. Just found this site.
As i lay here sick in bed reading your post I feel like you are talking about me!!!!! I can't tell u how many times I have been told I'm crazy or its all stress related. I have mvp with mild regurgatation and dysautonomia. It has been years since I have been normal. I have the almost passikng out episodes withf the blurry vision and all. I just recentley hadba 30 day holt done and was told I was tachy with a lot of pvcs as well. Its so nice to know I'm not alone. Thank you for sharing your story.
The conclusion you came to of MVP syndrome with dysautonomia- have you gone to a doctor who knows about dysautonomia who has confirmed this conclusion you came to? Have you gone to a place like Vanderbilt University, for example?
I'm unaware of medication phobia being a symptom in particular of dysautonomia- can you tell me what professional medical source you got that info. from? I know I have one to some extent, but for me, it was after being a guinea pig on a plethera of medications that I developed it.
Anxiety is actually considered something distinct, aside from dysautonomia, though those who have orthostatic intolerance often have the mistake made by doctors that this is the problem causing the symptoms. While some of us also have anxiety & or panic attacks, it is not, according to one thing I read, at any greater percentage (I think it may have been less) than the general population.
Your exercise intolerance and sensitivity to your pulse- do you have big swings in your pulse from laying to standing? Your inability to bear heat... is this because you are not sweating?
I would ask if they did thorough testing with your thyroid, not minimal testing with a number of your listed symptoms. Also, did they do any adrenal hormone testing during all the tests you got?
Dysautonomia treatment is targeted to whatever symptoms a person is struggling with.
With your walking, I recommend a slow build up, hopefully which will increase your stamina, of five minutes twice a day for a few days, then try going up to 10 minutes twice a day and so forth. Glad you were able to get disability. Please describe more of your symptoms?
I'm unaware of medication phobia being a symptom in particular of dysautonomia- can you tell me what professional medical source you got that info. from? I know I have one to some extent, but for me, it was after being a guinea pig on a plethera of medications that I developed it.
Anxiety is actually considered something distinct, aside from dysautonomia, though those who have orthostatic intolerance often have the mistake made by doctors that this is the problem causing the symptoms. While some of us also have anxiety & or panic attacks, it is not, according to one thing I read, at any greater percentage (I think it may have been less) than the general population.
Your exercise intolerance and sensitivity to your pulse- do you have big swings in your pulse from laying to standing? Your inability to bear heat... is this because you are not sweating?
I would ask if they did thorough testing with your thyroid, not minimal testing with a number of your listed symptoms. Also, did they do any adrenal hormone testing during all the tests you got?
Dysautonomia treatment is targeted to whatever symptoms a person is struggling with.
With your walking, I recommend a slow build up, hopefully which will increase your stamina, of five minutes twice a day for a few days, then try going up to 10 minutes twice a day and so forth. Glad you were able to get disability. Please describe more of your symptoms?
I have struggled for many years with a plethara of miserable symptoms. I was dx. with mvp years ago. After a series of surgeries in the 80's I began having frequent panic attacks. Since then my life has been a series of severe ups and downs. I have seen every kind of Dr. and have had every test. Mostly the results have been in normal ranges. My conclusion was, when this THING finally kills me they can write, "I told you I was sick", on my tomb stone. Finally, 3 days ago after much research, I came to the conclusion that I have been suffering from mvp syndrome with dysautonomia. What a relief to know that there really is something legitimately wrong here, and I am not just weak or crazy. I have ALL symptoms, including medication phobia. Anything anyone can tell me to help me control these daily symptoms would be appreciated. I am exercise intolerant, but am trying to walk. I am sensitive to my own pulse. I can't bear heat, and had to relocate to a cooler climate. I try to hide all of this from family and friends. Again, a diagnosis has been liberating. Now I just need to control the symptoms. Magnesium helps. Relaxing music, bed rest and the hot water bottle also are comforting. I spend most of my day self soothing. Thankfully I was able to get disability. I want to learn to live again. Thanks in advance for your help!!
Sorry for everything you are going through. Sounds like you need to get at least a tilt table test. That is critical for proper treatment of dysautonomia. Cleveland Clinic has a Dysautonomia Clinic that is excellent and might not have a long wait to get in. I got in in less than a month last summer.
Laura
Laura
Urinary metanephrines is nearly as good a test from what I remember reading as plasma free metanephrines, but not quite as good. And I also read there are silent periods that can happen with pheochromocytoma, where catecholamine emissions are normal. With the tests you did have- were there any excursions from the normal? Did you get them done during or immediately following episodes of high BP with the tachy?
Stress can increase cortisol and that can cause fat around the middle (so can Cushing's). A lot of SSRis, if they had you on any for depression, can pack on the pounds (I gained 29 on serzone I was taking for migraines, then later went down to 114 if I remember right. Later, I was on celexa and went up to 149 and lost some of that after going off of it.) Also, is your thyroid function sluggish?
I know with any illness there is an adjustment that has to be made to accept the way things have changed to and try to adapt to the way things are now. And still there are trials that come and if it weren't for God holding onto me and His daily supply of mercies, I think I'd be nuts and horribly depressed. I'd be lost without Him!
Adjustments- Like when my migraines went chronic, and when I was told I had arthritis in my jaws and would have to be on a soft diet the rest of my life; when I was told I had postural orthostatic tachycardia syndrome and none of the meds seemed a good fit for me, when I was told I had severe endometriosis and was informed I'd be back in the hospital for more surgery, and when at age 34, I had a total hysterectomy and had to release my hopes of getting married and having babies of my own, and like when I was told I had a tumor on my pituitary gland and when I learned I had interstitial cystitis (bladder condition) and it wouldn't go away and I needed to cut more things out of my diet, and when I discovered I couldn't stop taking medicine for my GERD- things like that.
You really need to learn if you have POTS or not and be very careful about ablation if you do, because they say it can often make things worse and some even become pacemaker dependent. I know they sometimes do ablations for SVT. You are blessed to be able to do some upright exercise of late! If you continue to be able to, it's good to build up slowly & it can help prevent further deconditioning that can lead to worsening symptoms!
I'm sorry this is so long. Also, if I may offer a suggestion? You might want to make space between some paragraphs. It makes easier to read posts that way!
Stress can increase cortisol and that can cause fat around the middle (so can Cushing's). A lot of SSRis, if they had you on any for depression, can pack on the pounds (I gained 29 on serzone I was taking for migraines, then later went down to 114 if I remember right. Later, I was on celexa and went up to 149 and lost some of that after going off of it.) Also, is your thyroid function sluggish?
I know with any illness there is an adjustment that has to be made to accept the way things have changed to and try to adapt to the way things are now. And still there are trials that come and if it weren't for God holding onto me and His daily supply of mercies, I think I'd be nuts and horribly depressed. I'd be lost without Him!
Adjustments- Like when my migraines went chronic, and when I was told I had arthritis in my jaws and would have to be on a soft diet the rest of my life; when I was told I had postural orthostatic tachycardia syndrome and none of the meds seemed a good fit for me, when I was told I had severe endometriosis and was informed I'd be back in the hospital for more surgery, and when at age 34, I had a total hysterectomy and had to release my hopes of getting married and having babies of my own, and like when I was told I had a tumor on my pituitary gland and when I learned I had interstitial cystitis (bladder condition) and it wouldn't go away and I needed to cut more things out of my diet, and when I discovered I couldn't stop taking medicine for my GERD- things like that.
You really need to learn if you have POTS or not and be very careful about ablation if you do, because they say it can often make things worse and some even become pacemaker dependent. I know they sometimes do ablations for SVT. You are blessed to be able to do some upright exercise of late! If you continue to be able to, it's good to build up slowly & it can help prevent further deconditioning that can lead to worsening symptoms!
I'm sorry this is so long. Also, if I may offer a suggestion? You might want to make space between some paragraphs. It makes easier to read posts that way!
Hiya, I am sorry to hear about the symptoms you are experiencing, they can be frightening and limiting, but you are not alone xx we here can offer you support and understanding.
You were diagnosed with MVP, may I ask what symptoms did you have for this to be tested/evaluated for or was it found accidentally? You mention that you have been diagnosed with dysautonomia, was this at the same time - did you recieve a diagnosis of MVP syndrome? (about 40% of patients with MVP also have dysautonomia), this could explain your symptoms.
Blue nails or hands can be a common occurance in people whom have dysautonomia, I often have blue nails and this freaked me out to!! Our bodies direct as much blood flow to our vital organs and to the brain when we are symptomatic and this in turn causes the colour change to our extremeties.
MVPS and dysautonomia can be triggered by factors that have happened within our lives, for instance childbirth, the loss of a loved one, stress, etc. Below is a link to one of our health pages which also holds a link to a MVP dysautonomia website:
http://www.medhelp.org/tags/health_page/39830/neurological-disorders/Autonomic-Dysfunction-FAQ?hp_id=181
I know how hard it is to struggle on a daily basis, I feel for you, but you sound like you are ready to tackle some issues you have, your weight gain being one of them. If it is definately MVP you have then I must advise for you to do this slowly as a large weight loss can make symptoms worse.
As SurgiMenopause has posted on above, their is a need for further testing. As far as I am aware high BP is not a common occurance in MVP - others here may have more information regarding this, but I believe patients more commonly experience low BP through this.
Do you happen to know what happens top your heart rate and bp with postural changes? i.e. going from laying to standing. I would definately push for a Tilt Table Test, this would be of great importance for you. I will also second comments above and would get a second opinion from another doctor, someone with a fresh view of your symptoms and test results. We also have to remember that conditions can exist alongside each other, so it could be possible that you have something else going on or could possibly have been misdaignosed entirely if dx was made upon clinical evaluation only.
I have POTS, and like several within this community, I experience high overshoots of BP - especially on standing. My heart rate also increases when I stand, but I also experience random tachycardia.
Below is a link to our health pages here:
http://www.medhelp.org/health_pages/list?cid=196
Maybe it would benefit you if you were to record your symptoms and bp, we have trackers here to help you keep a diary of these, follow the link below:
http://www.medhelp.org/trackers/list/196
You were diagnosed with MVP, may I ask what symptoms did you have for this to be tested/evaluated for or was it found accidentally? You mention that you have been diagnosed with dysautonomia, was this at the same time - did you recieve a diagnosis of MVP syndrome? (about 40% of patients with MVP also have dysautonomia), this could explain your symptoms.
Blue nails or hands can be a common occurance in people whom have dysautonomia, I often have blue nails and this freaked me out to!! Our bodies direct as much blood flow to our vital organs and to the brain when we are symptomatic and this in turn causes the colour change to our extremeties.
MVPS and dysautonomia can be triggered by factors that have happened within our lives, for instance childbirth, the loss of a loved one, stress, etc. Below is a link to one of our health pages which also holds a link to a MVP dysautonomia website:
http://www.medhelp.org/tags/health_page/39830/neurological-disorders/Autonomic-Dysfunction-FAQ?hp_id=181
I know how hard it is to struggle on a daily basis, I feel for you, but you sound like you are ready to tackle some issues you have, your weight gain being one of them. If it is definately MVP you have then I must advise for you to do this slowly as a large weight loss can make symptoms worse.
As SurgiMenopause has posted on above, their is a need for further testing. As far as I am aware high BP is not a common occurance in MVP - others here may have more information regarding this, but I believe patients more commonly experience low BP through this.
Do you happen to know what happens top your heart rate and bp with postural changes? i.e. going from laying to standing. I would definately push for a Tilt Table Test, this would be of great importance for you. I will also second comments above and would get a second opinion from another doctor, someone with a fresh view of your symptoms and test results. We also have to remember that conditions can exist alongside each other, so it could be possible that you have something else going on or could possibly have been misdaignosed entirely if dx was made upon clinical evaluation only.
I have POTS, and like several within this community, I experience high overshoots of BP - especially on standing. My heart rate also increases when I stand, but I also experience random tachycardia.
Below is a link to our health pages here:
http://www.medhelp.org/health_pages/list?cid=196
Maybe it would benefit you if you were to record your symptoms and bp, we have trackers here to help you keep a diary of these, follow the link below:
http://www.medhelp.org/trackers/list/196
It sounds like you have a Good plan of action! Do not let any doctors make you feel intimidated or like you can not approach them. YOU are your own best advocate my friend!!
Make a couple of notes for yourself on both, symptoms and questions you need to ask. Next to the question, quickly jot down what the dr says....If not, you may forget what he /she has said.
I totally inderstand how you feel! Your heart is your "Life Line!" With that being said, it is not uncommon for this to put added stress on you which in turn makes the heart act up even a bit more. Just remember that when you are talking to your dr....You need to make sure they get it across that you know what is normal for you and what is NOT! You deserve answers as well as treatment so that you can go on with your life and have some kind of quality to it :)
So I am still wondering are you normally hypretensive or Hypotensive?? Now this is a Baseline heart rate...not when you are having an Episode!
~Tonya
I go see my cardiologist here on Friday and I plan on having a serious talk with him. I am fed up and cant imagine living the rest of my life this way. I rarely even go to stores because my heart acts up so much or I feel like I am going to pass out. I first thought my BP must be low when I felt this way but it was real high instead. I just know I hate it and my family doesnt get it and people I work with dont get it and my doctors dont get it but I get it. I feel very alone and like I have no one who understands. Every day is a struggle and I never know how my body will feel. I feel so out of control. I dont drink, I dont smoke, I dont do drugs, I dont drink caffeine, I dont eat any candy or things high in sugar, I rest a lot, I try to exercise and yet I went from 112lbs my whole life to 142 in the past 2 1/2yrs and cant lose any weight. This just seems like a real bad dream. I just started going for walks again last night since the weather is nicer. I dont do well in the cold and even rode my bike about 1/2 block. I use to ride about 2 miles every night.
I did have the 24hr urine metanephrines test twice. Once here and once up at Mayo in Rochester. I first went to U of W for my first 2nd opinion. He didnt run any tests. He just looked over my tests that I had said I was having pvcs and tachy but didnt even need to be on acebutolol 200mg bid. Then when my symptoms seemed to be getting worse I went to Mayo in Rochester 3x. I saw a Dr Sharon Hayes cardiology there. This is a 4hr drive for me and I had to leave my kids ect behind, take off work, it was a chore but I thought I would finally get some answers. Well they ran every test imaginable. I do have 2 tests left to take - the tilt table and a sweat test where they put this powder all over you and put you in a room to sweat to see if the dysautonomia is effecting your sweat glands. Unfortunalty I didnt get to have those 2 tests because I became so ill with an cracked tooth under a crown that I had to have oral surgery 2 days before christmas 2009 and by Jan 2010 I was unable to sit or stand for even a few minutes at a time without getting real dizzy and my BP going real high. So I am back to taking my lopressor 25mg tid, xanax .25mg bid, magnesium 250mg bid and a multi vitamin. I do have good moments and even few minutes of when I feel "normal" but I seem to be reflecting a lot on my past and how envious I am that I cant be the way I was. I am only 40 yrs old. My pcp admitted me in the heart hospital in feb 2010 because I woke at 4am with a heartrate in 150s for no reason and it wouldnt slow down. I was there for 3 days and she ended up sending me to outpatient psych therapy thinking I was depressed - well hell yes I am depressed my life is not anything as I know it or knew it to be. Needless to say the people at the outpatient program which was 8hrs a day for 2 wks told me I wasnt anyone like they normally see. I have serious health symptoms that no one seems to be listening to. I have heard some things about the cleveland clinic and think maybe I should try there. I am trying to work and function daily like this - its crazy! I just went back to work in March but have an active FMLA. I have great anxiety now like never before because I am scared and feel like I am a ticking time bomb with my heart. I am having runs of 4-6 beat pvcs which is defined as vtach and that kills people and no one seems to care or is worried. I am thankful that I am a manager at the community health center and a doctor practice a few feet outside my office door and he knows about my health. He thinks I need an ablation or something else. Seems I have more questions and less answers. My magnesium isnt even low but my cardiologist wanted me to try it to see if it would help the pvcs - nope it doesnt but im still taking it. I almost wish now I would have never started the beta blockers. Part of me feels like I have only got worse since starting meds but cant get weaned off them because my heart just races away. What to do?
I forgot to mention that I also have MVP w/ moderate Regurgitation along with
NCS (NeuroCardioGenic Syncope).
And , I called you sherri in my 1st post....Oooppsss, Sorry.
i see now it says Sherr not Sheri
See told you the brain was toasty at times Lol
~Tonya
Hello and Welcome to the Forum :)
Sorry to hear of your health issues. It is very freightning when something is fulling around w/ our heart! That is our Life Line!!
You did mention that you have been w/ your Cardiologist for 11 years......Perhapd it would be a wise idea to seek another...at least for now. The reason why I say that is beacuse you need someone who does not "Know" you and can look at you as a fresh.....case, if you will! When we are with a certain doctor for as long as you have been, sometimes they just do NOT think outside the box. I am in no way saying that your cardiologist is not good but outside the box might not be so bad ;)
Also, apparently these doctors are not helping you much by not staying on track w/ you and your meds......A lot of times Sherri, it takes several trials and errors of different medications before you finally come to the one that works for YOU! not everyone will be receptive to a specific doctors drug of choice. My ElectroPhysiologists drug of choice is Florinef...Guess what, even though he swears by it.....It did not work for me! So on to another then yet another.
I guess my point is that you need a second opinion and some formal testing
(Tilt Test) so this can be narrowed down for you and so maybe they can better treat you and the symptoms you are dealing with.
I invite you to stay w/ us as you go through all of this as you may have questions, or just need to vent! And that is OK :)
Take Care,
~Tonya
ps, please excuse any and all spelling and grammar errors as the brain is not what it used to be.....I also have MS and that leads me to some cognitive problems with brain and fingers not playing nice with one another :0
Also, it is much easier to read if you break up your paragraphs.....
~T
Did you ever get pheochromocytoma ruled out? The best test for ruling this out is fasting plasma free metenephrines blood test after you have been having the high blood pressures and fast pulses (as this type of tumor can sometimes have silent periods). It's a tumor usually found on the adrenal gland that emits catecholamines and causes things like rapid heart beat, spikes of high blood pressure, headaches, etc.. I have POTS (likely hyperadrenergic type) and because I was having some lab tests not in normal range, my primary doctor had me switch for awhile to a blood pressure drug called labetolol in case I had that kind of tumor. (The endocrinologist I was referred to said no way did I have pheochromoctyoma.) But if you haven't been tested, I'd ask for plasma free metanephrines, considered the very best at detecting it.
Also, did they make sure your ferritin (iron stores) and iron were in normal range, as iron deficiency can cause tachycardia or make it worse?
Did they ever do a tilt table test? From this site, it seems there are some with MVP who also have POTS (postural orthostatic tachycardia syndrome). This type of test is done by a cardiologist or even more specifically, an electrophysiologist. You may want to see if you can get this type of test.
Also, did they make sure your ferritin (iron stores) and iron were in normal range, as iron deficiency can cause tachycardia or make it worse?
Did they ever do a tilt table test? From this site, it seems there are some with MVP who also have POTS (postural orthostatic tachycardia syndrome). This type of test is done by a cardiologist or even more specifically, an electrophysiologist. You may want to see if you can get this type of test.
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