L i a n n e 's S t o r y
"I was contemplating doing the great north run!"
I’ve had Pots for three and a half years now, although I was always a “fainter” when I was younger! I was very healthy at the time of my onset, hitting the gym for 2 hours a day and monitoring calorie intake very carefully, I was contemplating doing the great north run! I have recently moved to Florida, but originally came from a town close to Durham!
My onset was very quick and pretty severe. I was on my way to Vegas of all places after I had finished my A levels. I was flying into Florida, before heading to Vegas its self. On the way I collapsed in the airport leaving for Florida, felt awful and had immense back pain. Thinking it must have been blood sugar as the paramedics tested mine and it was pretty low! So I carried on after some food and put my ill feeling down to shock. Once I stood up to leave the flight once we arrived in Florida, I collapsed again, and was taken straight through to the emergency room, and was shortly discharged with suspected dehydration.
"...now I was at the point of not being able to stand at all, without losing consciousness."
This back and forth to hospitals after collapsing continued but upon arriving at Vegas, it stepped up a notch. I collapsed the first day 8 times and A&E suggested vasovagal syncope. On the second day I collapsed 12 times ( by this point I’m positive I’m dying , I’ve never felt so awful in my life) , yet A&E discharge me again. I passed out at the taxi rank and once again I was rushed back in where they finally decided to tilt me (after inferring I was putting it on). The procedure was a little intimidating as now I was at the point of not being able to stand at all, without losing consciousness. It’s also a little more intense than the ones I’m now used too, as I was strapped to the table in a body suit at the forehead and couldn’t move anything from the neck down it was so tight.
The lab assistants paged a cardiologist immediately as I was put on a heart monitor; my heart rate was at 208 before I was even completely upright. My blood pressure couldn’t be measured. The cardiologist was stumped and paged another, it was out of pure luck the other cardiologist didn’t answer and so the head of cardiology came in. He’s studied POTs in Boston for 10 years on a research program during his fellowship. He diagnosed me and told me I needed immediate care at an autonomic institute.
A bed was arranged for me at Boston and inquiries were made about the mayo Clinic in Rochester as we were advised this was one of the best autonomic units, but my private insurance decided to bring me home and had told us they had found an expert who was in my local vicinity.
To cut a verrry long story short as I’m sure you’re all bored already, I was put in the hands of the uneducated and a geriatrician. So nine months later completely bed bound and at my breaking point, my Mam contacted Tara,
a fellow potsie from a conference she went to, who told us about Professor Mathias.
We booked and appointment for the next week, and off in an ambulance I went to St Marys. My first impression on Prof Mathias was pure amazement; he not only relieved me that he would be able to help me, but he actually knew what he was talking about (a VERY refreshing change!) He also diagnosed me with EDS III. I was to come back in a few weeks when they had space to test me.
"...only three days after my final medications were added I was walking again."
I’m sure the majority of you reading this are well aware of the autonomic tests that are involved in your two week barrage of tests! After having consultations with several cardiologists, a migraine specialist, epilepsy specialist and a rheumatologist I had a whole host of new medications which were introduced one by one. I was to go home until all tests had been read and reported on, went back into hospital three weeks later, only three days after my final medications were added I was walking again. It had been something I’d given up hope of getting back. I cried for an hour after my first shower! Not awfully sure if it was relief or anger! That’s the beginning of my story!