It was just another sunny Malibu, California day back in April of 2006. My daughter and I had finished visiting Grandpa, and were on the road in front of Pepperdine University, where the sea gulls float in the air amidst the robust sea breeze. The smell of salt water permeated everything, and one could almost hear the crash of the waves, over and over again. My father had Alzheimer’s disease, so we were “regulars” at the Home. It was about 10 miles away, and we were headed home. POOF! In less than an instant of time, my truck was facing oncoming traffic as I heard a huge CRUNCH! Behind me, another truck was totaled in one large SMASH!
No one stopped. Blank, faceless people drove their cars to avoid hitting us, swerving to avoid hitting us. It was 2 pm on a Tuesday; they had nowhere to go.
I panicked and did the one thing that you are not supposed to do: get out of your car. I had to check on my daughter, my 3-year old baby, who was strapped tightly to her car seat. I was obsessive about that. I tried to stop the faceless drivers then, to help me get off the road, but they all drove by, glazed eyes. They had nowhere to go.
Our baby was fine. The driver had leaned over to stop her Chinese food from falling off the passenger seat, and lost control of her car as she pressed the gas instead of the brakes. There were no skid marks on the ground, and I never hit my head. We were ‘centrifuged’ and my brain suffered a torsion spin injury. We didn’t learn that for years. I felt fine on the scene. I watched the tow trucks take the other two cars away, wondering why they weren’t taking mine away, too. The rear axle was broken. The lady had been driving at a speed of about 90 mph.
People often stop me here and ask, “Did you get any money? Did you sue her?” Perplexed, I still fail to see the reasoning. So what if I got $70,000. I couldn’t walk; I couldn’t talk. For most of the nine years thereafter, I was bedridden.
Dysautonomia Diagnosis
I was confined to a wheelchair and couldn’t fit down a restaurant aisle. I couldn’t look at the shelves of yarn or I would throw up. The doctors thought I was malingering, until a cardiologist performed the Tilt Table Test and diagnosed me with dysautonomia. I was imbalanced and ataxic, and self-diagnosed a vertebral artery dissection. I went to Neurorehabilitation for weeks, and getting out of bed felt like I was a tremendous rock with no inertia, trying to move. Later, with the traumatic brain injury (TBI), I developed and self-diagnosed diabetes insipidus (DI), before I died of kidney failure. Even in the hospitals, the doctors asked me if I wanted valium, told me I was “too young to be a drug addict,” and asked me if I had a “psychiatric history.” The nurses would tell me to “just be a patient,” and then tell me “it’s a good thing you’re a doctor” when they tried to give me a beta-blocker to slow down my heart rate. My heart rate goes down to 35 beats/min every night. Slowing it down even more could have killed me during my sleep.
I lived on an IV PICC line for almost 4 years. What an oxymoron for an anesthesiologist to be constantly changing her own IV at home. It was a hard time. I got myself off the IV, by going down from 60 ml/hr to 59 ml/hr and so on. Finally, we pulled it out. The doctors did not realize that it could not stay in forever or I would die of an infection.
What I Learned: Fighting for Myself, Educating Others
What is the bottom line that I learned from all of this, being a doctor myself? Arguing with other doctors and surgeons for years? This is it: Women have to be knowledgeable about their own health. I had to fight for my diagnoses, each one of them, even the dysautonomia. It didn’t matter that I was a physician, my symptoms were downplayed and often ignored. Medications were offered that would have killed me. I had to fight. I had to become the expert in my own health. This was not an easy task when I was gravely ill but the choice was clear: fight back or die.
Eventually, I reached a point where I could at least write. My Stanford, USC, and Perelman University of Pennsylvania School of Medicine brain overflowed with medical information.
I did think straight on paper and in my own time (despite the doctors best attempts to convince me otherwise). So, in my trapped-in form of disarray, I learned about menopause, hormone replacement therapy (HRT), and common women’s health issues. I made it my mission to educate girls and women. Recently, I completed my fifth book, Archives of the Vagina: A Journey through Time. It starts from a girls’ First Period, and continues with thoughts Aristotle had on menstruation, other men who contributed to women’s age of consent for sexual intercourse. I pass it on to you as my life’s work to help women worldwide. If you are ill now, keep fighting.
Become the expert in your own health. Find your voice and when you can, help others find theirs too.
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This post was published originally on Hormones Matter on March 9, 2015.
Thank you for sharing your story.
So true about having to fight to keep yourself alive and educate yourself about your condition. Having doctors try to push the “Mental Health Card.”
I have a laundry list of things that went undiagnosed for a Long time. Celiac disease for 36 years, Hypothyroisdism for 9 years, Lupus and other Autoiummune.. Ehlers-Danlos Syndrome, Mast Cell, POTS/Dysautonomia, I guess a Chiari Malformation.. and More Comorbidities.
I had to write a 150 page book/ Medical history with my lab findings, photos, Medical Journal articles, Jump through Hoops and Literally Do Circus Tricks to get a Referral to a geneticist, to get a REAL Diagnosis. The geneticist that diagnosed me, told me to not let ANYONE HURT ME, especially not Doctors or Physical Therapists.
I have been fighting a lifetime to keep myself alive.
I have been called a “Difficult Patient” after almost dying on medications and having doctors want to put me on something for side effects. {I was having anaphylaxis, not side effects}
I could go on and on. It has been ridiculous. I have had doctors say the craziest Things to me.
Thank you again,
-Tammy
Dr. Amanda, how are you doing now? It’s been several years since you posted this story and I would love to know if you got your life back? Did your dysautonomia symptoms get better over time? It wold be so wonderful if you’d update us on your condition over time.
Thank you.
Terri
Dearest Terri,
Thank you for inquiring about my current status.
I’m still disabled from dysautonomia, but there is plenty of good news.
One year ago, I was dying. In desperation, I left my old life behind. It took about ten months of drastic changes to get my life back. These are the changes:
* A diet of immunonutrition (maximizing natural immune defenses with foods that are
anti-inflammatory)
* Drinking mineral water, which has trace mineral elements that hold water more in
the tissues
* Gradually going off all medications, as polypharmacy and side effects complicated my
picture (never do this without your doctor).
My Pearls of Recovery:
I fasted and prayed. God brought me back to life.
I fell in love. Selim Yeniceri brought me back to love.
I listened to music. Music decreases depression and anxiety.
I swam. I lost 30 lbs.
I watch every single word that comes out of my mouth, speaking only positive.
I educated myself, and I wrote. I’m Editor-in-Chief at http://www.saysagainspirational.com
My sixth book, The Rebel Patient ebook comes out next month.
We’re re-releasing all five of my previous books, too.
I believe in miracles. So never lose hope.
Highest Personal Regards,
Dr. Margaret Aranda
I woke from a breast surgery w chronic ocular and vestibular migraine and now am being evaluated for POTS and eds. In the meantime I consulted with a neuro endo and he put me on high dose estrogen. This helped immensely with period based migraine/dizziness that would last around 10
Days. I am required to use progesterone and I cannot tolerate it. I’ve tried creams and pills (bio) and get migraine/dizzy for days. It’s unbearable. But now I bleed non stop from unopposed estrogen. I’ve had testing and so far my lining is ok but I know I cannot continue this.
Any thoughts about if meno can cause all this? Does it exacerbate POTS? Is there an HRT that is safer?
Thank you.
I’m on dr number 18 so far…(also a tbi survivor from 13 years ago)
I am currently awaiting a Tilt Table Test to confirm the cardiologist’s suspicion of dysautonomia/Pots. I too have a difficult time tolerating my needed progesterone. 8 out of 10 times that I take my daily medicine, I have what I call a “brain slowing episode” for a lack of a clinical term for what i experience. I almost feel drunk. If I’m walking my knees slightly buckle. If someone asks a question, it takes a little extra time for me to come up with the answer. My world just slows down ever so slightly. What did you end up doing to address the need for progesterone despite the side effects? I appreciate any insight you have to offer.
Dr. Aranda,
I suffer from a rare birth defect called Chiari 1 Malformation. It took 43 years of misdiagnosis before all the pieces of the puzzle were put together by a simple MRI. I underwent decompression surgery in June of 2012. Since having this surgery I’ve had 8 other brain surgeries within 5 months time that year. Fought a round with meningitis. .had four VP shunt surgeries one of which had a staph infection in the drain tubing. Yet still to this day I walk into the ER and doctors have no idea what Chiari Malformation is. ( I’m writing this after just getting home from the ER where the treating nurse was very rude to me until she Google searched it. I accepted her apology and told her I’m used to it happening.) We have to be our own advocates. No one else is going to do it for us! We know when something is wrong with our bodies.
Dear Annette,
The best analogy is that of going shopping for shoes to match a dress you bought for a wedding. You already have the dress. Now you need the shoes. The “wedding” is the disease; the “shoes” represent the doctor(s) that are supposed to give you a diagnosis.
Do we buy the first pair of shoes we try on? Rarely. What happens if we buy a pair of shoes that are either too big or too little? We suffer. And we prolong the agony. So, don’t settle for anything less than the “right” pair of shoes!
Go “Doctor Hunting” from doctor to doctor until someone knows someone who knows someone who may have the answer. That’s how I did it. 27 doctors.I tried on 27 pairs of shoes until I found the “right ones.” There’s no other “Fast Track” way to do it. Although I will say that in my book Archives of the Vagina, I devote a Chapter to Invisible Illnesses and give the symptoms, tests, labs, results, and diagnoses to help pave the way. There.
You can also use the Stanford-X Medicine program, which lets patients ask other patients (e-patients) about their symptoms, in the hopes of getting a diagnosis. Or, join a Chronic Illness group on FaceBook to start telling your story; others will chime in very readily, as they become “e-teachers.” Hope this puts you on a good start. Dr. Aranda.
To Derrick Lonsdale,
I appreciate your comments regarding the possible role of thiamine in the Gardasil(R) vaccination neurologic sequelae that is well documented. However, my goal was not to fully explain the mechanisms of action responsible for this tragedy, but rather to give a more global account that hopefully would lead a mother or father to delve into it by researching it first, instead of blindly exposing a son or daughter to this vaccination not just once, but three times. My plea is to NOT treat this one “just like another vaccine” and to inform, educate, and provide a springing board for the general public to use on a clinical basis. But thank you for the scientific background in laying down the setting; very much appreciated. Dr. Aranda
To John Blunt: Some medical schools have actually started adding an extra Class into their Curriculum, and it is something to do with Having Empathy for your Patients. I’m not that old, and back in my days, you didn’t have to teach that, but my. How times have changed. Thank you for your comment. I also think they should add required CME credit for Compassion and for Chronic Illnesses. It would save billions of Health Care doctors. My opinion, and I’m sticking to it. Highest Personal Regards, Dr. Aranda
Sadly, there are good and bad in every profession and not least in every branch of medicine too.
But, the are the rare few who are good, analytical and attentive who do apply their learned knowledge to
patients. Unfortunately, you only come across them
from time to time and it has taken me over 50 years
to find one or two of them. What a great shame that is of course and a greater shame that so many people have to be so badly treated and misdiagnosed in the meantime by some doctors trying things out on human guinea pigs who they consider just another name and number. Maybe our medical schools need to rethink what they teach and who they teach it to. !!
Hi doctor Aranda. I know that it sounds silly, but I suggest that you look back on the thiamine posts. Post Gardasil POTS is initiated by the “stress” of vaccination (maybe with a push from thiaminase in the yeast based vaccine). I also suggest that you look up the work on the General Adaptation Syndrome by Hans Selye in the Journal of Endocrinology in 1946
Thank you for sharing this doctor’s story!
Similar stories play out again and again in doctors’ offices every day across this country. Doctors who refuse to listen to their patient’s concerns. Doctors who don’t take the time to hear your entire history. Doctors misdiagnosing. Doctors prescribing medications which are not needed or lead to other health issues. Doctors who are so busy typing into their computers, they don’t even look at you.
But why?
If you have to fight for your own diagnosis, as Dr. Aranda recommends, then what is the real purpose of even having a doctor??? And, what is a patient supposed to do when doctor after doctor refuses to listen?