My son is 18yrs old and a year ago he fainted whilst at work then twice more that evening when we decided to take him to a&e
These faints came on without any warning signs
He was kept in overnight for tests
He ended up in hospital several more times over the following weeks
Fainting continued at at 2 or maybe 3 episodes a week
Finally they said he had vasal vagal syncope
EEG, ECG and all heart monitoring have came back clear
His fainting episodes increased so was piut on fludrocortisone (1/2 a tablet every morning) and sent for a tilt table test
He was then told it was not vasal vagal syncope but PoTs
His fainting episodes continued but the fludrocortisone stabilised them so they were no longer as regular
He constantly has a headache which is worse after fainting
These fainting episodes come on with no warning signs at all
He has no recollection of fainting but is slightly confused when he comes round and usaually goes for a sleep
About 4 months after his diagnoasis he ended up back in hospitsal for a week as he lost his ability to speak, it started as a stutter and ended up sounding like someone who is deaf
They could find no reason for this happening and he communicated mostly by writing things down, this lasted for around 3 weeks before his speach returned to normal
this has never happened since
Fainting episodes gradually became worse and is fludrocortisone was slowly increased
A year on he is having 4 fainting episodes a day everyday without any warning signs and is now on 4 fludrocortisone tablets a day
The confusion does not seem so bad now, or maybe he has just got use to it but he still has a constant headache
New symptoms have also developed, somedays he just feels really ill nothing spercific just ill, has trouble sleeping, gets very tired easily, easily confused, forgets things regularly, writing has deteriated, still stutters slightly sometimes, sometimes he has episodes where he just doesnt seem like he is here and his legs hurt and sometimes feel numb and dont seem to work properly and occassionally give way
He uses a wheelchair when we go out as he is safer than walking but it now helps due to getting very tired when walking
He has only seen a cardiologist twice and on our recent appointment he said he did not think it was pots as his symptoms did not fit as he faints when laying down, sitting and standing
Hed was fitted with a monitor to check his heart but there was no changes so he has been referred now by the cardiologist to see a neurologist but the appointment is not until December
I have trawelled the websites, read all the books i can find which isnt many and read some posts on this forum and he really doesnt fit to me in the PoTs category and i am really concerned and i just feel like no one is taking this seriously, everything is just a very very long waiting game
Sorry for the long post