Last weekend, I was at my parent’s
house not watching the super bowl, and my mom brought out a pile of pictures
she was going through. She handed me a picture that gave me a punch in the gut.
This is a picture from when my parents took my husband, my sister, and I to
Hawai’i a few years ago:
What It Is:
This is the present. I was diagnosed
with dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome) in May
2012 when I did my first Tilt Table Test. Dysautonomia and POTS are very rare
conditions and are very rarely diagnosed. It’s
estimated that 500,000 people are diagnosed with POTS. There is no pamphlet or
brochure for this condition and most of the doctors and specialists out there
have never heard of it. There are no specific medications for dysautonomia.
Many with the condition will hear from doctors that your symptoms are "all
in your head." It's an almost universal experience. This is why it took me
over a year to get diagnosed. It’s been almost 3 years and I’m still trying to
get a more complete diagnosis. Once you get a diagnosis, a cardiologist and a
neurologist are the first lines of defense in the battle.
I am no medical professional (though
I would argue I may deserve an honorary medical degree at some point), but as
far as I know a Tilt Table Test (TTT) is the only way to get a definitive
diagnosis for POTS. The test sounds simple: you are strapped to a table while
lying horizontally. Your blood pressure and heart rate are monitored
continually and they lift you slowly up to vertical while still strapped to the
table. My heart rate immediately increased almost 80 beats. 72 at horizontal to
145 at vertical. It was unpleasant. If your heart rate increases by 30 beats,
you have a definitive diagnosis of POTS. I was earning extra credit with the 80
beats. POTS is subset of dysautonomia, which means a dysfunction of the
Autonomic Nervous System. Not everyone with dysautonomia has POTS. There are a
variety of subsets. Dysautonomia is is referred to as an "umbrella term." It is
important to find out which subset you have to get more focused treatment.
The ANS controls all of the functions your body preforms automatically: breathing, heart rate, blood pressure, digestion, body temperature, sweating, etc. "Autonomic Dysfunction" means the body is no longer able to self-regulate these functions. Normally, when you stand your body is able to adapt to gravity and maintain blood flow to your essential organs. The words “postural orthostatic” and “tachycardia” mean that upon standing the blood pools in the legs, your blood pressure drops, and your body goes into overdrive to maintain blood flow to your brain. This is why fainting (syncope) is often associated with dysautonomia and POTS. This condition can be result of nerve damage so the nerves (your direct line of communication in the body) are no longer working as the connection between the brain and the body. It’s like the body just suddenly forgot how to be a body (you had ONE job!). I explain to people that it’s like my “wi fi” was turned off and I swear I paid my internet bill.
Symptoms typically related to dysautonomia include dizzinesss, excessive fatigue, GI problems (including gastroparesis and dumping syndrome), blood pooling, syncope, brain fog, difficulty sweating and maintaining body temperature regulation, tachycardia, bladder problems, hypovolemia, etc. Symptoms manifest uniquely for each individual, which makes diagnosis that much more challenging.
Dysautonomia is not a disease; it is
a symptom and a condition. The real struggle is not getting the diagnosis. It’s
finding the cause. The Elusive Cause is more difficult to track down than
Sasquatch and for most people The Cause is never confirmed. My doctor at
Stanford believes The Cause for me is likely a conglomeration of genetic
predisposition, multiple neck injuries (in gymnastics and a car accident), and
other factors. The Cause is still elusive for me because my doctors couldn’t
tell me why I had sudden onset of the condition. Most of the time people
acquire dysautonomia after a major illness, often a viral illness. Recent research
shows that dysautonomia also has an autoimmune component. It seems most
dysautomoniacs (if not all) have a variety of other illnesses and conditions.
As one of my doctors said to me with much appreciated empathy “Some people are
just lucky.” Dysautonomia is incredibly unique for each individual and presents
differently. It can be severely disabling to the point that some are unable to
work. I was unable to work the first year and I work now but with varying
levels of success.
There are very few physicians who have heard about this condition
and only a handful in the world who are experts on the subject. If you get a
diagnosis, I recommend seeking one of these individuals out at a specialty,
research hospital. That was the best thing I ever did. I am now treated by an
expert at Stanford University. There is autonomic testing which can help narrow
a diagnosis but only a few places in the US that I am aware of have the
facilities to perform these tests. Many of these tests were created at the Mayo
Clinic. I’ve heard that’s one of the best places to go for autonomic
dysfunction.
There are no replacement surgeries for the nervous system. It
can’t be grown on a rat and transplanted into your body. You’re stuck with that
lemon. And here’s the kicker: there is no cure either. The only option at this
point for dysautonomiacs is treatment of symptoms. But there is hope. Sometimes
the condition improves on its own and sometimes it doesn’t. There is medication
used off-label to treat dysautonomia/POTS and there are non-pharmaceutical
options (my favorite kind) to manage the symptoms as well. Treatment for
dysautonomia often involves medication that raises blood pressure such as
Midodrine or Florinef, an increase in salt intake, exercise to build strength
and avoid deconditioning, and other medications to manage the wide range of
symptoms patients have related to the condition. I take a calcium channel
blocker (Verapamil) to lower my heart rate, Florinef to help my body hold on to
salt and raise my blood pressure, and salt pills. It seems that more
people and medical professionals are becoming aware of this condition.
There are a few great websites that
explain POTS and dysautonomia that are indispensable to understanding the
condition and finding treatment:
The most important thing to remember
is that there is hope and dysautonomia may be part your life but it cannot take
away your humanity, your values, and your spirit. There are resources to manage
the condition so that you can live the best life possible.
Arming yourself with information is
essential in the battle because you will often have to be the expert when
talking to doctors, and taking ownership of your health is imperative. I
stepped through the looking glass, but I came out the other side a warrior.
I had the same thing happen to me,my daughter pulled out a photo and said look how fresh you look there.......(of course it was pre illness) my answer was "Well I didn't feel like crap all the time then did I"......I totally get how you feel when you see your former self, it's like the person in the picture died some time ago..... sending UK love xx
ReplyDeleteThank you Jennifer! This is supposed to be an "invisible illness" but you can definitely see the cost and I know our friends and family can too. I try not to dwell on those old pictures and focus on trying to still be fabulous. Thanks for commenting :)
DeleteThanks for sharing my infographic, and helping to raise awareness of Dysautonomia! <3
ReplyDeleteIf you're interested, I also have an easy-to-understand explanation of what Dysautonomia is, for sharing with non-medical friends and family. You can find it at http://reflectionsofabear.com/2015/09/02/what-is-dysautonomia/
xx S.
P.S. For some reason, I can't see any of your pictures in this post unless I click on them? In the post themselves, they just look like empty white boxes...
I found your this post while searching for some related information on blog search...Its a good post..keep posting and update the information.
ReplyDeleteCirca
A wheelchair is best used by those who should not or cannot put weight on their lower limbs or those who cannot walk. The wheelchair can be the right mobility aid for those with more serious disabilities or who need to travel over greater distances. Best Wheelchair UK
ReplyDelete