Joanna: The only way is up!!
I have always been tall and slim and I grew up frequently having crippling 'growing pains' that caused sleepless nights, and dizzy spells that lead to fainting and black outs. After years of suffering throughout spring/summer with dizzy spells, fainting and bad headaches I was referred to a specialist at the age of 16 where I was diagnosed with PoTS after extensive tests.
I was then put on the steroid 'Fludrocortisone' in 2012 aged 18 when my symptoms worsened. I took one tablet a day. This seemed to help my symptoms marginally but as a side effect made me gain over a stone in weight.
I started university studying Nursing in Greenwich in September 2012 but due to the nature of the role; the artificial heat in the wards, the busy days and constant standing and moving around, it resulted in me having frequent black outs. I made the decision to leave in December 2012. This devastated me, I felt as though my health condition was controlling my life and stopping me from doing the one thing I wanted to do, and knew I could do well.
However, after a month or two off I picked myself up and started looking for work. February 2012 was when I landed myself my first proper full time job for an insurance company. After 4 months working full time I became very unwell. My PoTS symptoms were worse than before and I was unable to hold down a job. I was fed up of being unreliable, constantly having to call in sick and letting people down on a daily basis. It was at this point I went back to my GP and he upped my dose of Fludrocortisone. My body didn't react well to this and It was at this point when I became severely unwell, left my job and spent the majority of the summer of 2013 in bed. I had severe sickness, bad headaches that involved me sitting all day in darkness, severe joint pains in my arms and legs which left me screwed up in a ball on my bed trying to tense my muscles to get rid of the pain, bad chest pains, awful brain fog and I was constantly tired. I was then put on a beta-blocker to see if this improved my symptoms at all. This had the opposite effect and I ended up in hospital on more than one occasion. Finally after trial and error and 8 months spent in bed I was put on Midodrine.
After a few months on Midodrine my symptoms were better, I was less tired and was able to function enough to spend a couple of days out a week, just getting out the house helped so much.
Small amounts of exercise have also helped me along the way. Isometric exercises help me the most. I have a gym membership which I try and use twice a week. I find I am able to use the bikes for around 40 minutes on a medium pace without it having adverse effects on my health. My leg pains are now virtually non-existent. I just wish I'd listened sooner!
Midodrine has improved my life more than I could ever explain to anyone. 5 years on from being diagnosed with PoTS I am at a place in my life where I can say I am truly happy, and am comfortably managing my condition. I am still on midodrine. I work 21 hours a week with ease and am currently looking for full time work. Ok - it may not be my chosen career path but working and getting independence in an office is a million times better than the place I was in when I left uni two years ago.
Don't let your symptoms ruin your life! I am proof that there is hope. With the right medication, plenty of water and salt, small amounts of exercise, frequent breaks and a brilliant support network around you, it can be managed!
Josey :) x