Pissed off tonight about all the ways dysautonomia has changed my life...

Not sure when I last updated. I've had some good days and some really rough days. It seems that my meds are not cooperating with my body. Time for a new plan...

The only thing predictable about dysautonomia is that it is unpredictable.

I read this great description of dysautonomia today. It said that it's when the "body's autopilot is on the blink." I prefer the word fritz, but it works. :)

It's Been A While...

So, I haven't been able to update in almost 10 days. On October 1st, I had to be taken to the ER by ambulance because I almost lost consciousness and I was home alone. It was a giant waste of time, but what else are you supposed to do when you could pass out, your heart feels like it's going to explode, and you can't breathe? I told the ER doc that I have dysautonomia and then had to explain what it was to him. That was comforting. Anyway, needless to say, they weren't able to do anything for me. They pumped me full of saline, gave me anti-nausea meds, and prescribed Ativan for me. LOL Ativan? WTF? Just goes back to the fact that doctors who don't know or understand what's going on with someone resort to anxiety and stress. (Note: Dysautonomia is misdiagnosed as anxiety or panic disorder the majority of the time a patient presents with it.) Makes me laugh now, actually...and it makes me a little sad that these are the people we trust to care for us when we're sick. Since October 1st, I've had a lot of rough days marked by two really decent days...which I am so thankful for.

Anywho, I am working on figuring out what meds/treatments are going to work for me. As of right now, I am on low dose Midodrine once a day. This helps keep my BP up when it has a tendency to drop. I'm also using compression stockings to help with the circulation in my legs. I'm trying to eat healthy and drink plenty of fluids as well. I'm monitoring my BP throughout the day and keeping a log of all my symptoms/episodes. I'm also trying to get as much rest as possible because the fatigue is kicking my ass! Just doing the best I can.

On a great note, my doc has been wonderful and supportive. We've discussed everything, including the possibility of me having an autoimmune disease. He said it's definitely something we can look into. He also put me in touch with a neurologist in the Neuroscience Dept. at Stanford and I have an appointment set up with them in a few months. My doc has also devised a plan. He has a new medication that we might add to my regimen, if after a few months my symptoms are still as bad as they are now. Although I admit that I'm hoping I wake up one day and realize this was all just a bad dream. However, if that doesn't happen, I'm happy there's something else we can work with.

All in all, things are okay. Just working on getting healthy, spreading the word about dysautonomia, and trying to work on some art projects...thought maybe it would be therapeutic. :)

The last 5 days have been really rough. Since going to the hospital on Thursday, I haven't had the energy to update my blog. I will be writing to catch up soon.

A Brief Overview of Dysautonomia

Dysautonomia is a general term used to describe the breakdown or malfunction of the autonomic nervous system. (There are many disorders that fall under this general term.) The autonomic nervous system, as described in an earlier post, controls the body's involuntary functions. When there is dysfunction in the ANS, the brain and organs are not communicating properly. Dysautonomia is a full-body condition and therefore may cause a great number of symptoms.

Symptoms
Fatigue, lightheadedness, dizziness or vertigo, excessive thirst, excessive urination, rapid heart rate (tachycardia), slow heart rate (bradycardia), near fainting, fainting/loss of consciousness, orthostatic hypotension, joint pain, headaches, pallor, malaise, facial flushing, constipation, diarrhea, nausea, acid reflux, visual disturbances, numbness, nerve pain, trouble breathing, chest pains, in some cases seizures.

The symptoms of dysautonomia are unique to each individual. Some people experience some of these symptoms, while other lucky people experiences all of the symptoms. I happen to be one of the lucky ones. The severity of these symptoms can vary. Some patients are affected only mildly and others are left completely incapacitated.

Specific Disorders
Postural Orthostatic Tachycardia Syndrome (POTS)
Neurocardiogenic Syncope
Mitral Valve Prolapse
Pure Autonomic Failure
Vasovagal Syncope
Neurally Mediated Hypotension
And other lesser known disorders

Often there is a great deal of overlap between these various disorders and patients can have more than one...as I do.

Causes & Treatments
There is no specific cause, however, development of dysautonomia has been linked to viral illness, brain injury, genectic factors, physical trauma (i.e. injury or surgery) , exposure to chemicals, preganancy, autoimmune disorders, compression of important arteries and/or nerves, etc.

There is no known cure, but dysautonomia can be treated with various medications to stabilize the condition and alleviate symptoms. Many forms of dysautonomia resolve themselves within 2-3 years and are not life threatening, but can be seriously life altering by limiting daily activities.

For more information on dysautonomia, please see the links I've provided or simply look it up in a search engine.

Visit to Stanford

It's been confirmed...I DO NOT HAVE PANIC DISORDER!! :-D

I saw Dr. Wang at Stanford University Medical Center today. He and his nurse Marcia were absolutely wonderful. His nurse came in first and started talking with my partner and I about what I have been experiencing. Dr. Wang came in about 10 minutes later and apologized for keeping us waiting. He picked up where we had left off with Marcia. Both Dr. Wang and Marcia took their time asking us questions and actually listening to our answers. They evaluated my symptoms and did a thorough exam. In fact, the doctor actually did the orthostatics. He took my blood pressure lying, sitting and standing. It was interesting, I was lying there and realized I had never had a doctor take my BP. I also realized that I had never had a doctor and nurse take so much time with me. They were so kind, compassionate, and excellent critical thinkers. By the end of my appointment, Dr. Wang gave me his assessment of my condition and offered a diagnosis.

Dysautonomia. Big, strange sounding word, right? This is the dysfunction of the autonomic nervous system (ANS). The ANS is the control system that affects heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, micturition (urination), sexual arousal, and other functions.



Having a diagnosis is great news. Unfortunately, there is no simple answer to treating dysautonomia and it impacts many people. It is also relatively unknown. It occurred to me, after discussing it with my doctor, that it may be something I've had for quite some time. It's unfortunate, but at least it give us something to go on and we can work with the doctors to figure out what forms of treatment work for me. I have come this far and will not give up until this is either fully resolved or at least well controlled.

A Little Education

I've decided to post some educational information based on what we have narrowed my conditions down to. Though you may have the same symptoms, you may not have the same condition. None of the information I'm listing is meant to be used for self diagnosis. Please work with a professional to determine the cause of your symptoms.

We have determined that my symptoms are most likely related to issues with my heart and/or autonomic nervous system (specifically the vagus nerve). Below is information about the heart and how it works. In a separate posting I will detail information about the autonomic nervous system and the vagus nerves involvement in the body.


These are illustrations of the front surface of the heart (top left), the internal anatomy of the heart (top right), and the electrical wiring of the heart (bottom). Click images to enlarge them.

Here is a simplified explanation of how the heart works:

Heart Pumping
The beating/pumping of the heart is controlled by the electrical system. This begins with and electrical impulse at the sinoatrial (SA) node. The electrical signal that is initiated from the SA node spreads across the right and left atrium causing it to contract and push the blood that they contain into the right and left ventricles. The electrical impulse the passes through the atrioventricular (AV) node to the ventricles which causes both ventricles to contract and pump the blood out to the lungs and the rest of the body.

Blood Flow
There are two courses that the blood runs through. There is pulmonary circulation (Right Side) and systemic circulation (Left Side).

Right Side
Deoxygenated blood flows into the right atrium from the superior and inferior vena cava. The blood then flows into the right ventricle through the right atrioventricular (AV) valve (a.k.a. tricuspid valve) which closes when the right ventricle contracts to keep blood from flowing back into the atrium. The right ventricle contracts and pumps the deoxygenated blood through the pulmonic valve into the pulmonary artery which carries the blood to the lungs to be oxygenated.

Left Side
Oxygenated blood flows into the left atrium via the pulmonary veins. The left atrium contracts and pushes the blood through the left AV valve (a.k.a. bicuspid valve). At this piont, the left ventricle really squeezes and pushes the oxygenated blood through the aortic valve into the aorta, which branches into other arteries. The blood flows through the blood vessels to the rest of the body.

The Symptom Counter

Just to be clear, I thought I would list each of my symptoms. If you are suffering from these symptoms, you should see a doctor.

1.) Lightheaded to the point of fainting
2.) Erratic heart rate - Experiencing both bradycardia (HR under 60) and tachycardia (HR above 100)
3.) Shortness of breath
4.) Chest pain and tightness (In left side of chest and sternum)
5.) Pain and tightness in neck/throat
6.) Palpitations
7.) Pain in the back of my head
8.) Heavy limbs and head
9.) Muscle weakness & pain
10.) Hoarse voice
11.) Nausea
12.) Vision disturbances
13.) Tingling in extremities
14.) Abdominal cramping
15.) Fatigue
16.) Excessive urination
17.) Acid Reflux
18.) IBS

An Answer...

After all this, I have finally been referred to a great doctor who is not only willing to help, but wants to help and has taken the initiative to put me in touch with one of her colleagues at Stanford...an Electrophysiologist. I was referred to her by my wife's co-worker. I had my first appointment with her one week ago and she already has me set up to be seen at Stanford. She believes that I have a conduction issue with my heart...after reviewing my holter report and echocardiogram she feels that further cardiac evaluation is necessary. This was something that should have been caught by the cardiologist, but was overlooked because of my age. I am hoping that after being seen at Stanford, we will have more answers and I can be on my way back to getting healthy. Thank you Dr. Grellet. :)

Dr. Wrong Diagnosis

At this point, months have gone by and I am finally on my way to a diagnosis, but it has been a long road to get here.

I have seen my Primary Care Physician (multiple times including in Urgent Care), four Emergency Room doctors, one Urgent Care doctor (other than my PCP), and five specialists in various fields. None of them came up with any reasonable answer or diagnosis that explains what is causing my symptoms. In fact, each of them independently looked at what their specialty was and formed an opinion based on what they're comfortable with. On top of that, instead of trying to determine and treat the underlying issue, they chose to treat my symptoms. When those treatments (of my individual symptoms) didn't work and make everything better, they always resorted to panic disorder and/or anxiety. I played this game many times with each doctor I was passed off too.

I returned from SD and went to the ER two days later where I was told I had anxiety and after waiting for 5 hours, got sent home with nausea medication. Ridiculous! Dissatisfied with this, I went to my PCP. She believed that I was suffering from allergies and asthma. She gave me a breathing treatment and sent me home. About a week later, I went back in because my heart was fluttering, I was short of breath, and very lightheaded/dizzy. They hooked me up to a monitor and my HR was anywhere from 49 to 109, while I was lying in the same position...not normal. Still convinced I had allergies and asthma, my PCP gave me nose spray and an inhaler, ordered a chest X-ray, and sent me up to cardiology. The cardiologist looked at me and said, "You're how old? Oh, well I doubt there's anything wrong with your heart, but we'll set up a holter monitor and an echocardiogram to make sure." I was satisfied with that at the time and scheduled those appointments. While waiting to have them, I had a chest X-ray done that was completely normal in findings (meaning I don't have asthma). The cardiologist did the tests and told me everything turned out normal, though I never saw the reports myself. I went on to see a neurosurgeon, who did an MRI of my brain and found everything to be normal. I was then sent to an ENT because my PCP thought maybe my ears were causing my dizziness because in her mind I have allergies. He found my ears, nose, and throat to be perfectly healthy. At a loss and still feeling terrible, I stopped going to the doctor in hopes that I would just get better. I began to pursue other alternative treatments. I saw a chiropractor and an accupuncturist, which actually helped slightly for a day or so, then I was back to feeling the same.

Well, I recently ended up being taken by ambulance to the ER yet again, where they once again did nothing for me and fell back on "panic disorder." My HR was 120 and BP was 128/102. That's obviously not normal. I then followed up with my PCP who has her story and is stickin' to it...she told me it must be my asthma (that I don't have).

Frustrated that my symptoms are now interfering with my daily activities, I have reached out to people and used other resources to try to find a doctor who actually cares about their patients and is interested in correctly diagnosing them so they can get back to their life.

My Condition Post San Diego

Since I almost passed out in San Diego, I have not been the same. I am still experiencing the same symptoms and then some (lightheadedness, palpitations, fatigue, foggy head, breathing issues, etc.) and have since had four other episodes of almost passing out. I have been to the ER 4 times, Urgent Care 3 times, and I have seen countless doctors who all come back to the same idea...anxiety, panic disorder. It is disturbing really. They take one look at me and see that I am a 25 year old woman in good shape who can communicate intelligently with them and they decide there can't possibly be something physically wrong. I always hear the same thing, "You're too young for these symptoms." Wow! That's their answer...they went to school for all those years to tell me that I'm too young to feel what I'm feeling. Well from my past, I am quite aware that anything is possible at any age.

Here's a little bit about my patient history. I was born with pneumonia and weak lungs. I've broken more bones than I can count, including my knee and spine. At 16, I had my right kidney removed because it failed. At 17, I had a large osteoblastoma removed from my spine. I also come from a family with extensive health issues. Anything from diabetes and hyperthyroidism to cancer and heart disease. Regardless of my age, the odds aren't really in my favor. Though I must say, I'm much healthier than most of the people in my family. With all of the experiences I've had in the health department, I have come to realize that though age does play a role in certain diseases, there is no rule that says, "If you are 25 years old, you cannot possibly have an issue with ___________."

This brings me to my next point, I know my body very well. I'm willing to bet that I know my body better than a doctor who is an outsider attempting to look in. I know when something isn't right and I've come to the point in my life that if I don't feel well, I'm not going to let a doctor tell me I'm fine when I know differently. Your body knows when something is wrong and it will scream at you until it gets the help it needs. I'm glad I finally learned to listen.

Note for the day: Always listen to your body and trust yourself. If you don't feel well, your body is trying to tell you something...listen.

How It All Began

So this is where it begins. Where what begins, you ask? Well, where the story of how I went from being a strong, vibrant, healthy young woman to whatever it is I am now. I mean sure, I look the same...on the outside. But I am not the same, physiologically speaking. I have been suffering with some kind of condition for months now and have been written off (by more doctors than I'd like to count) as a young woman obviously suffering from stress and anxiety. (The classic rebound answer when the blood work turns out normal and a couple of scans look fine.) Needless to say, I'm ridiculously frustrated because I know myself. I am built to handle stress and for the record, I do not suffer from anxiety. Though I have felt anxious in the past, as we all have for various reasons, it is not something that I typically experience. That being said, if I was having anxiety, I would be the first to admit it. It is something that can be dealt with and treated through relaxation, therapy, and medication if necessary. I wouldn't subject myself to needless tests and useless doctors visits if I didn't feel that I needed help.

Enough ranting, here's how this all started. About 4 and a half months ago, I was in San Diego visiting my dad who was very ill in the hospital. I was driving to see him one morning and began to feel very strange. My heart began fluttering (palpitating) and I became severely lightheaded. Afraid that I was going to lose consciousness, I pulled off the road and called 911. My limbs felt incredibly heavy. My breathing became labored and erratic. My hands and feet became numb and very tingly. My entire body began to tremble as if I was freezing (though it was quite warm out) and I got the chills. I was incredibly nauseous. My head got increasingly more difficult to hold up and I was about to black out when a medic opened my car door. They took my vitals and put me in the ambulance where they kept me on a pulse ox to monitor my heart rate and oxygen. The medic told me that my heart rate was all over the place...anywhere from bradycardia (below 60) to tachycardia (above 100) within a few seconds. They brought me into the ER and gave their report to the nurse. The first thing they told them was that I was visiting my dad in the hospital and that I was under stress. (I thought to myself...I can buy that. My dad is sick, maybe I am freaking out inside and don't know it.) The nurse and doctors saw me, asked me a couple of questions, made me take some Xanax, and sent me out into the world. That was it...no tests, just take a pill, oh and the nurse told me to try listening to music because it calms you down. Wow, thanks for that! I still felt like hell, but figured they knew what they were doing and that the Xanax would help me feel better.

My sister picked me up from the hospital and we went on our way. I was still short of breath, my balance was messed up, I was lightheaded, and I felt like I couldn't lift my limbs...but I had taken Xanax, so I was sure that I would feel better. We got to the hospital shortly after and all I wanted to do was lie down, which I did on a couch near the elevator. I just wanted to sleep because I thought maybe if I slept off whatever was going on with me, I would be okay. I slept for a bit and woke up feeling as horrible as I had before, minus the heart palpitations. I went through the rest of the day feeling terrible and from what my lovely family told me...looking as bad as I felt. I hoped that once the day was over and I got some rest, I would be back to normal. Little did I know, it was only the beginning of my issues.

::As a side note, I do want to state that I have no problem with Xanax and think that it is an effective drug when prescribed and used properly by someone who does need it. I am not that person.::

Welcome...

This is a blog about my trials and tribulations through the healthcare system. I decided to put myself out there because it has become painfully obvious that I am not the only person going through what I'm going through right now. My name is Rachael. I am a 25 year old premed who was completely healthy up until about 5 months ago. This is my story...