Mitral Valve Prolapse Syndrome / dysautonomia

[LindaJoy]

Hi, everyone. I just bought the book, The Mitral Valve Prolapse Syndrome / Dysautonomia Survival Guide. Gena, I know you highly recommend this book; I read some past threads. My question: Is POTS the same as MVPS / D?

I was just diagnosed, through TTT, with POTS. I also have mitral valve prolapse, with all of the accompanying symptoms that make up MVP syndrome, although I've only been diagnosed, thus far, with POTS.

I read, in previous threads, that some doctors consider dysautonomia and MVPS the same, but where does POTS fall into all of this?

Sorry to appear so lame. All of these names of syndromes--I can't keep them straight what means what. And, lots of material I've read has credited POTS with the same symptoms as dysautonomia and MVPS. Are all three the same thing?

Sorry to get stuck on labels. I just sort of like to know what I'm dealing with.

Oh, one more question, too. Gena, you may know this. In the book, the authors mention psychological responses to MVPS / D, which entail the same symptoms (anxiety, panic) as the physical symptoms of dysautonomia / POTS. So, how is one to know if the anxiety one feels is from emotional responses or physical triggers?

Thanks, everyone. Any information you give is very much appreciated (and, with the way my fog brain is working tonight, very much needed!!).

LindaJoy

[KathyP]

Hi LindaJoy;

I have the same book. It is truly enlightening. I read it cover to cover twice. I even took it to my Dr. and he told me that he couldn't believe that I found a book for what I have.

I feel like I have told my story so many times so excuse me if you heard it before. When I finally found a doctor that was willing to work with me the first thing he did was a bunch of heart tests, 24 hour halter monitor, EKG, echogram. The very first diagnosis he gave me was Mitral Valve Prolapse Syndrome because along with the MVP was the anxiety attacks and my asthma. Then when he couldn't control the symptoms he did further testing which led to the TTT which proved POTS and vasovagal depressor syndrome.

I guess either way you slice it Dysautonomia is so complex that is affects every aspect of the autonomic nervous system. I am sure you have read all of this in the book.

The simplest way I understand it is that it all is in blood volume. Eventhough we have mitral valve prolapse it doesn't mean there is anything seriously wrong with our hearts. But, when the heart speeds up or I have palpitations my nervous system automatically thinks something is wrong and I am in danger so the rest of the nervous systems kicks in. I feel like I am in danger and I have to run. I feel faint. If I'm on my feet while my heart pounds fast the blood volume can't keep up so the blood pools in my legs and my blood pressure drops.

I could be wrong medically but it sure does feel like it makes sense. With all of the research that I have done as well as reading that book I really don't think anyone has yet figured out why some people with Mitral Valve Prolapse/Dysautonomia have POTS also. It just seems to be something that goes hand in hand.

I am glad that you have a diagnosis. The more you learn the better you will feel. I have to ask, what kind of symptoms were you first having when you knew something was wrong? What led you to think you had POTS before you had the TTT? Have you experienced severe panic attacks?

Sorry if I'm asking so many questions. When the doctors first told me what I had all of the different diagnosis names were very confusing for me too. Take care.

KathyP

[Ling]

Please can I have the author to the book. I am in South Africa and there are 5 books on record with this title.

Thank you.

[opus88]

My dysautonomia is more like MVPS than POTS. In essence, they are basically the same thing. The difference seems to lie more with your most prevalent symptoms. If the heart-related symptoms are your most pronounced, it is usually labeled MVPS. If your blood pressure is your biggest trouble, it is usually labeled POTS. But both labels likely include problems with heart and blood pressure as well as the huge list of other symptoms.

That's not to say that there aren't slight differences, but it seems to depend on the doctor's specialty and/or their awareness of these conditions. If you are diagnosed by a cardiologist, for example, and there is some kind of click or prolapse or regurgitation, it is more likely to be called MVPS. A diagnosis by, say, an internist or vascular specialist, often thru a TTT, will more likely result in a POTS label.

As for me, I don't give a rip what anybody calls it. If asked, I refer to mine most often as dysautonomia (who cares what kind!), and secondly as MVPS. And I don't do doctors because they haven't a clue what to do and therefore just pump us full of drugs aimed at symptom relief rather than finding causes.

I guess that's a long way around suggesting that you forget about the label and start to work on your body via nutrition. In my non-medical world of treatment, nobody's condition even has a name because individual body chemistry is looked at, not a label. It makes all the difference in the world to feed your body according to its individual needs, not by a one-size-fits-all standard dictated by a medical label.

Best wishes for your progress!

[MomtoGiuliana]

I agree with you Opus about too much labelling, especially in this realm of dysautonomia. Not enough is understood yet, to sometimes make these labels terribly helpful. They may even reflect incomplete understanding at this point. However, I did not think that MVPS and POTS is essentially the same thing. I am not surprised that there is symptom overlap. When I first had my symptoms I had an echo that revealed no MVP, which is what they thought initially was causing my symptoms. Years later I had aTTT that confirmed POTS.

LindaJoy--I do understand your quest to understand and get the basic labels straight, however! You are not lame b/c you are having trouble wading through all the terminology. It is daunting.

To help you along a bit--dysautonomia is an umbrella term for a large range of conditions, including POTS, and POTS probably being the more common dysautonomia.

I have trouble still at times determining whether anxiety I experience is emotionally or POTS-driven. This was even more the case when I was very ill. However, anxiety, whatever it's origin--can be managed with medication, diet, exercise, meditation, adequate rest. I find that anything I can do to reduce my POTS symptoms--fluids, salt especially--can help with what is probably POTS-induced anxiety.

Take Care, Katherine

[Gena]

LindaJoy,

As you know from reading this wonderful book (Ling -the authors are Durante and Furiasse), not everyone with POTS has MVP and vice versa. And not everyone with MVP has symptoms of dysautonomia. I would tend to agree with KathyP on the low blood volume being the underlying "precursor" or "stimulus" to the MVP, POTS and the anxiety and panic attacks. We also have to consider that we are often much more sensitive to catecholamines (adrenaline substances) that can trigger alarm bells in our bodies as well.

In a book called Taking Control: Living with MVPS, the author talks about people with MVP have panick attacks that are the "result from the catastrophic misinterpretation of certain bodily sensations." I'll paraphrase what she says...We can have internal or external stimuli cause a panick attack. We may experience heart palps and chest pain from low blood volume which can trigger the a flood of adrenaline b/c we fear we might die or have to go to the hospital, etc., this fear adds to release of catecholamines and can turn into a full blown panic attack. The same thing can happen with an outside stimulus, such as having to fly, drive, go to a supermarket, etc. We start thinking "Gosh, I hope I dont' have a panick attack while I'm on the plane", and then you experience chest pain, heart pounding, etc. and then our reaction to those sensations become catastrophic, which sets up the panick attack.

In the book MVP/Dysautonomia Survival Guide, I felt the authors were ultimately trying to say that the anxiety is a physiological response, not purely psychological. I strongly feel that controlling our physcial symptoms with hydration, salt, compression hose, etc. and controlling our reactions to those physical symptoms when they happen by using calming thoughts, breathing techniques, putting your legs above your head, etc. can keep the anxiety/panic from becoming a runaway train.

Now that I focus on hydration, salt and exercise/breathing/meditation, I haven't had too many problems with anxiety. Adrenaline rushes still sneak up on me though and get my heart pounding once in a while, but I'm learning to control my emotional response to them.

Sorry, that was a long answer. I hope that helps!

[LindaJoy]

Thanks, everyone, for responding. KathyP, I was told ten years ago, by my endocrinologist at the Cleveland Clinic (I have a pituitary gland tumor that he treats me for), that I have POTS. He just did the manual blood pressure tests. Before that, I was diagnosed with IBS and fibromyalgia. I was having tachycardia, sometimes severe, especially after exercise, and I was told by one cardiologist that my adrenaline wasn't shutting off. I was losing a great deal of weight and sweat all the time, even sitting still, from the adrenaline. I always felt buzzy and had GI problems. I never gave it anymore thought because my endocrinologist never told me that POTS may have a lot more symptoms to it, symptoms that I've been dealing with for years, than just the irregular heart beat, low blood pressure and tach.

I fell upon the idea to have a TTT the first week of this past March when I was just getting over the flu and my gp gave me an antibiotic that set me into tachycardia. I emailed a group who specialize in these particular antibiotics effects, and they wrote me back and said that I sound as though I have POTS and responded to the antibiotic the way that I did because of it. Remembering that my doctor ten years had used the word POTS, my husband and I began to research it on the Internet. I came across that website written by a patient, Chris something, I think, and THERE I WAS, in all of my POTS glory. I had most symptoms he described. I sat and cried. Finally, I knew what I was dealing with. I wasn't crazy. I wasn't just a basket case in need of a psychiatrist, like my gp had been telling me for years. I knew I was falling apart for some real reason, and this was it. We then got on the site that located dysautonomia doctors and found Dr. Fouad at the Cleveland Clinic. Since I am already a patient up there, and since my endocrinologist approved it, I was able to get into her within a month and have a TTT.

Sorry to make this so long.

I have to admit, Gena, that I actually became angry reading Durante's book, when they began talking about seeing psychiatrists and the psychological effects of dysautonomia. I began to feel defensive, like I have so many years, when I've been told "it's all in your head," "I want you to see a psychiatrist," when doctors wouldn't even look at the possibility that I may have some physical problems.

I feel that if they focus too much on the psychological, that the physiological aspects of the condition will get lost, like they so many times do, and that's such an injustice to those who are really physically hurting. Does that make sense?

Opus, I guess I'm still new at all this and think that a label will help me "control" what I have if I know all there is to know, or at least let me say to myself, when I'm having severe symptoms, "It's only the POTS, or the MVPS / D." Then, I can re-read all the material I have on it to reassure myself. There's so much out there under dysautonomia, like MS, Shy-Drager, etc., that I've not been tested for, so I guess a decisive label will help me be reassured that POTS is ALL I have, as well.

Thanks, again, everyone.

Linda

[Gena]

Linda Joy,

I can't recall exactly, but if I'm not mistaken, I remember reading that having a pituitary tumor would be the primary cause of all your POTS symptoms? I believe I read that somewhere on the potsplace website.

Perhaps Nina or someone knows better than I do. I don't have time to search for it, as I have to run to work, but I'm pretty sure I'm correct about this.

P.S. You should NEVER think that it's all in your head. Just remember that it's a complex syndrome and that we have to try keep our emotional in check when all of theses weird things are happening in our bodies. I think that pscyh. counseling can often help us better deal with all of these emotions related to the illness (anxiety, depression, attitude, our daily struggles, etc.). In my opinion, counseling is not going to eliminate our physical/physiological symptoms, but it may help our mental outlook and well-being.

Gena

[morgan617]

Linda, first off, I'd like to say I totally understand your defensiveness with seeing a therapist. That being said, if you find a good one, they see past the gobbelty gook and see you are depressed because you're ill, not vice versa. My therapist is well aware that I'm very depressed, but she is also well aware it's from being sick, and challenges any doctor that refutes that fact. I have mvp also, but unless your leaflets are just flopping around doing nothing, the cardiologist doesn't even put it on the report! So I have regurgitation, but no prolapse! Go figure. I don't take any meds for my dysautonomia because the side affects are worse than the disease process for me. I am not (so far) a fainter, but out of the blue my bp has gone from an average of 160/100 to say this morning 100/60. I'm not sure why I'm not fainting, even a normal person should faint at those kind of drops. I have just decided I will never know what is going on as I have been refused everywhere because I had ablation I guess. That doesn't make me any less ill, just less understood I guess. I do know that mvp overlaps a great deal with ans symptoms. I don't panic over the rushes or arrythmias anymore, I just figure they are either going to kill me or not. Sometimes I feel because I am so miserable, I will probably be the longest lived human in history. The ultrasonographer is the one that showed me my prolapse. When I asked my cardio why it wasn't in the report, he said, why bother about something as insignificant as mvp? He is of course, no longer my doctor. So it's all confusing and mixed up. My primary says we know you have dysautonomia, what kind, no clue. So I just muddle through, and so far am still here, as far as I know. Sometimes I think I've passed and gone on to **** and no one bothered to tell me. morgan

[morgan617]

Sorry, I think where I thought I was, is considered a swear word. Was not meant that way, so apologize to anyone offended.

[KathyP]

Hi LindaJoy;

You said you were being treated for a pituitary gland tumor. Are you still being treated for it? If not maybe the problem came back. If you still have the tumor maybe you can talk to your doctor about having it removed.

I, myself, get very sensitive about the psychological aspect when it is attached to Dysautonomia. When it is addressed in the book, I think they are looking at it in a psychological way because of the depression, guilt, and anxiety attacks stand-point. I am now trying desperately to overcome Agoraphobia. I got this way because of having so many panic attacks while out in public. It was more comfortable for me to stay home. I dread having to go out. When this issue arises the only thing that doctors can label this under is psychological for the sake of not knowing what else to put it under.

I don't feel I am crazy at all. I know that NO ONE with this syndrome is crazy. I talked with my doctor about seeing a therapist. He told me that he didn't think I needed to see one and that I just needed to get my panic attacks under control. He sent me to a psyciatrist to see what she could recommend. She agreed that I didn't need therapy, but she did push more drugs on me. And all those drugs did was keep me in bed with horrible side effects for a week. Needless to say, I don't see her anymore.

It is all about trial and error. You need to find out what works for you to make you feel good. Sure, I can't stand all of the labels either, especially the crazy ones. But, if it weren't for the labels then I wouldn't have a clue on what to research and understand what I am dealing with. This syndrome as well as our physical make-up are extremely complex. Knowledge is power!!

I know there are people with MVP who don't have Dysautonomia. I know some personally. But, I do know those of us that have both. My doctor seems to think that my MVPS, Dysautonomia, POTS, and vasovagal depressor syndrome are all connected together somehow and there is nothing I can do about it.

I know I must have had problems with all of this for a very long time because as a teenager my gynocologist could not figure out why I was having such difficult periods. His first thought was a pituitary problem but then found out that it was an estrogen problem that ended with a hysterectomy 2 1/2 years ago. I am very lucky that God blessed me with 2 wonderful children. So I personally understand that I was born with all of this and the older I get the more the symptoms become pronounced.

I don't mean to be so winded here. There are so many doctors that have never heard of Dysautonomia. And some of the ones that do look at it as no big deal because it isn't life threatening and they don't know what it is like to live with it. That is what we have to deal with. All we can do is stay strong, think positive, continue searching for answers and continue to help eachother here.

Take care!

KathyP

[MightyMouse]

Morgan, the board has automatic filters for certain words, so no offense taken...whatever word it was was replaced with***.

Re: pituitary tumors...if it's still there and still causing hormonal elevations, ie. prolactin, then that's probably the primary issue. However, I suppose it's possible to have an adequately treated pituitary tumor and, separate from that, have an autonomic disorder.

Depending on the doctor, some would say that MVPS is a synonym for dysautonmia. I'm too brain fogged to recall what was said about this at the NDRF conference. It's all the sympomatology of true MVP but without prolapse, yes?, hence the tag of "syndrome" on the end.

Nina

[LindaJoy]

Thanks, everyone, for responding. I still have my pituitary tumor. I go in the 19th of this month for an MRI to see what it's doing. My prolactin is high (51 on a normal scale of 7-10, or something like that). My endo won't have it removed because 95% of them grow back, and a brain surgery is too risky for something that will probably just grow back. I go on Parlodel when the symptoms get really bad, but it lowers my blood pressure, and with already low pressure, I will pass out quite readily on it, so I can't tolerate it for very long. Plus, it makes me feel awful--like being on chemo every day. I prefer to try to live without the medicine.

Gena and Kathy, thank you for explaining about the psychological approach with this condition. It made more sense to me the way you two talked about it, that they're not saying it's all in our heads, but there are psychological aspects that can develop and should be dealt with, as well. Sounds much better than saying, "It's ALL in your head," as I've heard for sooooooo many years from tooooo many medical "professionals."

Morgan, your word did not offend. And, I appreciate your long-windedness! I'm glad you share your experiences. I feel so much better knowing I'm not alone in this!! I'm sorry you all are going through it, too, but, well, you get what I'm saying.

I see a new gp today. I fired my old one who, for ten years, has been telling me that it's all in my head. Wish me luck that this new one will be receptive to what I'm going to tell her about POTS. I'm really nervous. I hate searching for new doctors. I'm too tired to do a major, in-depth quiry here!

Hope you all are having a blessed day.

Linda

[KathyP]

Hi Linda;

YOU GO GIRL!!! I know how hard it is to fire a doctor you have been seeing for so long. There are to many out there to stick with one that isn't willing to work with you. I get irritated when doctors try to make you think that they are doing you a favor by treating you and they know more than you do. More doctors need to be taught that they are working for us not the other way around. Eventhough some of us have insurance we are still the reason they are getting paid.

Some doctors get too busy to care and they end up pushing you out like you're on an assembly line.

You'll find someone who knows what you are dealing with and can work with you. It may take time or this new one may work out for you. Don't be afraid to tell them what you expect them to know and do. I admire your need to know more and your guts to try new things!!!!

Take care!

KathyP