Ive been suffering from extreme anxiety and panic for years(rapid heart rate,chest pain,numbness and tingling,headaches,dizziness,palpitations,
stomach issues etc.) Ive been to the E.R. numerous times over the years thinking I was having a heart attack always to be told "Your test results are normal your suffering from anxiety". Ive always told the doctors it wasnt my anxiety causing my pain but rather my pain causing my anxiety but I was always told "Its all in your head". Ive had almost every test you could have(bloodwork,x-rays,CTs,holter monitor,stress test,CTA,Ekgs,ECHO)and it always comes back normal. The only test that came back with some concern was my ECHO. I had found out that I had mitral valve prolapse with some mitral leakage. I questioned the doctor on it and he said "Its something some people have but its benign nothing to worry about". So I went home and did some research on it and I came across something called 'Mitral Valve Prolapse Dysautonomia'(by the way the doctor knew of my severe anxiety and mentioned nothing to me about this disorder which is recognized by American Heart Association as a disorder/disease) it’s basically a disorder of the autonomic nervous system. It’s also believed that MVP doesn’t cause dysautonomia but dysautonomia causes MVP.MVP affects a small percentage of the population its actually more common in women than men. If youve never been checked for it you wont know if you have it. it can usually be picked up by stethoscope but if not an ECHO is usally required (note: Ive had tons of doctors listen to my heart over the years with a stethoscope and only recently had an E.R. doctor told me that he had heard a heart murmur(MVP).Thats when I got it checked and found out I had MVP.
You’re probably saying to yourself I don’t have mitral valve prolase this doesn’t apply to me. Well believe it or not this is one of many forms of Dysautonomia. Dysautonomia can be caused by... genetics(which I have),viruses,diabetes,Pregnancy, Autoimmune disorders, diseases, menopause, physical trauma,extreme stress, exposure to chemicals(heard of Gulf War Syndrome) it can even be caused by bad posture or after breast implant surgery. These are some of the causes but there could be many more that doctors just haven’t discovered yet.
The autonomic nervous system or ANS for short runs the unconscious functions of the body (i.e. heart rate, blood pressure, body temperature, Intestinal functions, breath patterns and many other functions). There’s two part to the system the sympathetic (flight or fight) and the parasympathetic (rest and digest) in normal people without dysautonomia these systems are always in balance. But, with someone with dysautonomia these systems are out of balance, never really in balance. This can cause panic, anxiety and all the symptoms that come along with them. For no reason whatsoever you can be sitting on your couch and all of the sudden you would think you were being chased by a saber toothed tiger. These attacks are physically induced (i.e. naturally without control) not psychologically induced (i.e. worrying about something). With that being said there is a psychological component to dysautonomia and its symptoms. Because of the disorder of the autonomic nervous system (ANS) the body naturally releases stress hormone that cause anxiety and panic. These are not psychologically induced rather physiologically induced. When those chemicals are released naturally you start to feel symptoms rapid heartbeat, chest pain, tingling, numbness, hyperventilation or dizziness etc. as soon as you start to worry about these pains and start thinking to yourself over and over again “I’m going to die” your body actually releases even more of the hormones it just released naturally only this time it was a psychological release (worrying) of the hormones making things even worse. It’s Kind of like a double whammy. So it puts you on a "hair trigger" and you constantly think when is the next attack coming.
The good news is...ITS NOT DEADLY!!!
There is no cure for dysautonomia .Just like many diseases without cures you don’t treat the disease you treat the symptoms.Some treatments involve:
- Anti- anxiety medications- to control anxiety.
-Pain killers- to control pain.
- beta blocker- which is a drug that slows down heart rate for people that have tachycardia (rapid heart rate).By the way beta blockers are for people whose heart rate stays elevated throughout the day , POTS syndrome for example.which is one of many forms of dysautonomia)
-Low blood pressure meds-low blood pressure can sometimes be associated with dysautonomia.
-Diet and exercise- diet plays a big role in reducing or triggering dysautonomia. A diet low in sugar, caffeine and nicotine. Exercise is also good for dysautonomia.
-Reducing stress- yoga, meditation or anything that helps you to reduce stress. Stress plays a big role in symptoms.
These are examples of things that can help you manage your anxiety and panic caused by dysautonomia. But these are not always 100% effective. You can do all these things and still have some symptoms or none at all. Depending on the person.It’s basically a trial and error approach to reducing symptoms. Since there is no cure it comes down to management to improve quality of life. The good news is the academic medical community (and the pharmaceutical companies) have now accepted the dysautonomia syndromes as being real, physiological medical conditions and are trying to discover more efficient treatments than the ones that are used to date.
It really comes down to tuning in with your body and realizing how symptoms present themselves. Like I said earlier dysautonomia is physiological not psychological. Not everybody here complaining of symptoms is suffering from dysautonomia, but some of you may be. You could have just a few symptoms or all the symptoms. Most people have more general and less serious symptoms than those who have an associated disease.
Question: How do I know if Im suffering from dysautonomia (physiological) or generalized anxiety disorder(psychological)?
Example 1: You’re lying on the couch at night and you don’t have a care in the world. You’re enjoying your show and all of the sudden your heart starts to race your chest starts hurting and you feel like you can’t breathe. You jump up and you think you’re going to die. If this is you, you’re most likely suffering from dysautonomia.
Example 2: You’re lying on the couch at night and the TVs running but you’re not paying attention to it because you’re constantly worried about everyday life or certain events going on. All of the sudden your heart starts to race you get chest pain and you can’t breathe. You believe you’re going to die. If this is you, you’re most likely suffering from generalized anxiety disorder.
Now, unfortunately when you go into talk to your doctor and tell them of your symptoms they run a physical exam on you, and when that physical exam comes back normal (which most likely it will) you get diagnosed with generalized anxiety disorder. You can tell the doctor” It comes on all of the sudden I’m not even worrying about anything and it happens.” Well unfortunately for you you’re still getting diagnosed with generalized anxiety disorder. 99.9% of the time no matter what you say you get diagnosed with general anxiety. As I discussed general anxiety is 'psychological' not 'physiological' and dysautonomia anxieties are definitely physiological. Your probably asking "Why do doctors do this, there doctors they should know the differences". The scary part is a lot don't or just don't know much about dysautonomia and its causes and symptoms. Why? I don’t know. Many doctors are either incompetent or too lazy to take the extra steps for their patients when test results come back normal. Because in all sense of the word people with dysautonomia are ‘normal’ and will most likely always come back with a normal physical exam.Its very difficult to get a diagnosis of dysautonomia but if you can find a doctor that will listen to you they can refer you to a specialist for tests.
Research this, and research it as much as you can then confront your doctor with questions about it. And if you don’t feel like they’re taking much interest in what you’re saying,find another doctor. There are plenty of them. I’ve been through hell and back and then through a couple more times but now I finally know what I have and that in itself has improved my symptoms drastically.Stressing out and worrying fuels dysautonomia.Dysautonomia is not fun but remember it’s not deadly and there will be a day when your symptoms subside. You just have to know what to do and not to do to live a life that is free of dysautonomia symptoms. Heres two good articles on dysautonomia:Go to clinicalposters.com click on Health Blog and then type dysautonomia in the search box. article is called "its dysautonomia, not laziness" also: thegirlfromtheghetto.wordpress.com/2010/03
I am so tired of reading "it's not deadly" and other half-truths. Apparently you are one of the lucky majority that have dysautonomia of the peripheral nervous system. Look at the NIH (National Institute of Health)web site and you will find that "Chronic, progressive dysautonomia in the setting of the Central Nervous System generally has a poor loNg term outcome" or something to that effect. Look up shy dragger syndrome or multiple system atrophy. They are deadly. Many people who have POTS seem to think that POTS means dysautonomia. Well POTS is one of the most common and least problematic forms of dysautonomia, but it by no means is the whole story. And those of us living the rest of the story have a hard time getting our loved ones to accept our prognosis when there are so many of you out there sharing the "good news" that dysautonomia is "not deadly". Of course they would rather believe this than my ugly truth. You are helping people live in denial who need to be living in truth so they can make the most of the time that is left. Please educate yourself more fully. And please write that your experience is a lucky (and large percentage) circumstance that not all of us are so fortunate to be experiencing.