Part#4

[kelly1258]

One day, over 14 months later, my younger daughter Jessica, who was
12, got very ill.  At first we just thought she was getting an ordinary
illness.  But soon things changed.  Se developed severe headaches and
nausea with severe stomachaches.  She ended up in the hospital twice in
a week.  We had her tested, thinking it would pass.  Then she started to
complain of arm, leg pain, dizziness, chest pain.  The doctors all
said that we should keep an eye out for the same condition Amanda had
but we never dreamed we could have another child with such a rare
ailment.  Then one day we checked her pulse.  It was all over the place.
She ended up in Miami Children’s Hospital with Gastroparesis (paralyzed
stomach).  The doctors advised us that the only children who get this
are those who suffer from diabetes and dysautonomia.  Soon after this
incident, Jessica was also diagnosed with Dysautonomia.  She developed
it at almost the exact age as her sister.  It turned out it was genetic.  She
was also very ill and missed three months of school.
   Amanda came to me and asked, “Do you remember how you used to
tell me that I had this illness for a reason?  Now Jessica won’t have to
suffer so long like me because we figured out what medicines she
should take.”  She was right.  Immediately, we put Jessica on the same
medicine as Amanda.  Within a few days of taking the higher dosage,
all of her symptoms disappeared. Jessica has now been 3 months
symptom-free.
     Now for another interesting part of the story.  One may ask how a
stay-at-home mom knew to try the higher dosage of medicine when
the leading hospitals as well as the world’s top expert did not think
to do so.  This is a part of the story that I did not think was relevant
until just recently when Jessica got sick and the same medicines
cured her.
    It goes back to about three or four years after the birth of Amanda.
I felt very ill.  I had severe gastrointestinal issues that left me 30 lbs.
lighter than I am now.  I was nauseous every day. I had pain in all of
my extremities.  I felt like I was going to pass out many times.  I was
tested and hospitalized but nothing was ever found.  I was so ill that
I would have a hard time even standing in church.  I didn’t know what
was happening. I went to a doctor and the doctor thought that
maybe my symptoms were due to the stress of having little kids and
that this was subconsciously affecting me.   I am not normally
anxious and didn’t feel like it was in my head but I was desperate and
would have tried anything.  I ended up taking Cymbalta.
    Soon thereafter my symptoms went away and for years I was fine.
I decided that since the kids were older I could take myself off the
meds (this was all before Amanda ever got sick).  The symptoms
all came back.  The doctors again couldn’t figure it out.  Every other
day I would be on the brink of passing out.  I again got hospitalized
for mysterious ailments like severe dehydration  or because I felt
like I was going to faint at any moment.
     Finally, I realized when I was on the meds I was fine but when I
was off, it was physical chaos.  I figured that my body just needed the
medicine at that time.  I expected that I would have to remain on
antidepressants. Years later, after Amanda got sick and I started
doing the research, I came across the article written by Dr Grubb
about how antidepressants healed some patients.  I began to believe
that I was one of them.  I remembered my own experience 10 years
earlier and went back to the doctor who treated me and knew
Amanda’s story. He checked my records and he saw that I had come
to see him with the exact complaints that Amanda had experienced.
When I showed him the research from Dr. Grubb, he took a chance
with my genetic theory, and the rest is now history.
   Soon after Amanda started taking the same medicines as I did,
Amanda’s symptoms disappeared.  I thought it was my theory that
had cured her, but really didn’t think much of it again.  She was better
and that was the end of it. Then, boom! My other daughter gets this
dreaded illness. It was no coincidence.  I realized that my far-fetched
theory  isn’t a theory at all.  There is obviously a genetic link here and
that is why the meds worked.  They fixed me, Amanda, and Jessica.
The research I read claims that antidepressants have only worked on
genetic forms of dysautonomia.  It also states that it is passed from
mother to daughter.  This is why antidepressants were key to our cure.
     I started researching further to try and get some idea as to where
genetics play a role.  I have read much information on the Net or
Norephrinrine transporter gene and the Dopamine Beta Hydroxide
Gene. These genes both play a part in orthostatic intolerance.  It also
makes sense that antidepressants would play a role in the production
of these chemicals.  Armed with this information, I went to the
genetics doctor.  He reviewed the record and examined Jessica and
Amanda.  He concluded that there definitely is a genetic link.  He felt
strongly that it is the NET gene.  Unfortunately, this gene is only
studied by the researchers at Vanderbilt University.  He  has recently
contacted them with this story so they can possibly consider higher
dosages of antidepressants, specifically Cymbalta, for treatment of
this form of Dysautonomia.

[cathyst]

Such an interesting story.  I was just at Vanderbilt a few weeks ago.  I have been taking Cymbalta for nerve pain, and depression.  The specifically told me to go off of Cymbalta due to POTS.  I need to find another anti-depressent.  I am not sure, but I think they said it can raise my BP.  I have been to so many drs. at great hospitals and I continually get conflicting opinions.   So frustrating!!!  So happy that you- yourself were able to figure this out.  Thank God your kids are doing better. I feel so bad for children dealing with this.  I am happy they sent the findings on to Vanderbilt.  In fact, my neuro. is at UM.  I live in Coral Springs.

[missydawnjk]

Kelly-

I was just wondering if your daughters' gastroparesis has gotten any better.  I to have  idiopathic gastroparesis and they are teeling me they think I have dysautonomia.  I have been sick for years and have been told I had fibromyalgia but I just recently had a baby and my blood pressure started going through the roof ...then it would go low.  I would get dizzy and palpitations. I had this burning attacks that would come on suddenly and the only thing that I found that helped me was effexor xr.  I dont have a definite diagnosis but I am looking for a specialist that is an expert on this disease.  I am so confused .  I feel for your daughters because you feel so alone and like you are going to die.  If you could give me any tips or a specialsit that I should see I would greatly appreciate it.

thankyou
missydawnjk