E v e 's S t o r y
"I went to see my GP who sent me for some tests but they all came back normal."
The very first time I can remember having any symptoms I think may relate to POTS is when I was about 16 years old. I started having chest pains on and off. This went on for a year or two, it was only occasional so I never really thought much of it. They would always ease after I lay down for a while. In the end I went to see my GP who sent me for some tests but they all came back normal. We never really worried about this and they never really effected me so life went on as normal!
In 2002 I was pregnant with my first child. When I went into labour things never went as planned so I was rushed for an emergency C-Section, all went well and my baby was fine. Things were looking good. It was the next day when I was helped out of bed that I felt I couldn’t stand, I was so dizzy and struggled to make it to the bathroom, I was so weak. It took me a couple of months before I felt ‘normal’ and this was put down to pregnancy and birth/surgery etc.
Over the next few years I had symptoms on and off, sometimes lasting for weeks at a time. No cause was found so it was put down to stress. In 2006 I had my 2nd child, this time by elective C-Section. It was so much different and I felt so well.
When my daughter was about 9 months old I was ‘suprised’ by the news I was expecting again!! It was a bit of a shock, but we felt this would complete our family and were overjoyed. It was during this pregnancy that I began having constant symptoms. These affected me everyday and I was really starting to struggle. My midwife was concerned about me and had blood tests done to see if she could find anything. All tests were normal. She said that this could all possibly be due to the pregnancy and that most of the time everything settles down after the birth. So….roll on the birth….!!
"It was a day or so afterwards, when I stood up I was immediately hit with dizzyness..."
This was also an elective C-Section and apart from a few bp dips went well. It was a day or so afterwards, when I stood up I was immediately hit with dizzyness, I was shaking and felt really unwell. The only thing that made me feel better was laying down. This only lasted a few hours and was put down, once again, to having a baby. Although I did start to feel a bit better, I never felt ‘right’ and had several instances were going from sitting to standing brought on severe symptoms and then left me with weakness and fatigue for the following few weeks.
I was admitted into hospital around Aug 2008 after one of these episodes but no cause could be found and I was discharged feeling really unwell with no answers. It was 1st May 2009 that I ‘crashed’ and became severe with this, and got on the road to an official diagnosis. I was in hospital for a couple of months and battled with my dr's to confirm my diagnosis. I was eventually referred to Prof Mathias who made sense of everything that was happening to me. I was also diagnosed with hEDS by Prof Graham. It took me several years to become functional again and be able to look after my children alone but gradually I improved.
In 2013 I decided as I was to unwell to work I would go back to university instead. My course ran for 10 hours a week and I had lots of support from
my lecturers. I graduated with a first class honours degree in 2016 and I am currently studying for my Masters degree. I have recently started a part time position within my local councils Children's Services. I am still symptomatic everyday and have days were I am totally unable to function.
"...take one day at a time. Build back up slowly and don't be too hard on yourself."
I am totally aware that I can relapse severely at any time so try my best to listen to my body and pace myself. I have 3 girls, they are now 9, 10 and 14. My 14 year old has POTS and hEDS too and is very symptomatic at the moment.
My 10 year old has had a probable diagnosis of hEDS by one genetics team and then told by another she does not score high enough on the Brighton scale. Under the new diagnostic criteria she would probably now receive a diagnosis. She also has urinary voiding issues, an overactive bladder and recurrent UTI's.
My youngest daughter had surgery for a tethered spinal cord as a baby and is hypermobile. She too has a probable diagnosis of hEDS. Both my younger girls suffer with dizziness, fatigue and chest pain but our dr will not look at them for POTS due to their age. POTS definitely likes our family..... my sister and my niece have also been diagnosed and we have other family members displaying symptoms.
We are hoping that research moves forward and better treatment becomes available so our younger generations do not suffer like I have.
If I could give one piece of advice to anyone bedridden with this like I was it would be to take one day at a time. Build back up slowly and don't be too hard on yourself.