Epilepsy and Osteoarthritis - how do you cope?

Trish9556

Hi all

I was born with Temporal Lobe Epilepsy 69 years ago and throughout my childhood I was given an increasing cocktail of Phenobarbitone, Mysolin, Ospolot, Dexadrine and a host of other drugs to help me through the thousands of grand mal seizures I had. Jump to age 19 and I was admitted to hospital, petrified after being told I had days left to live and being very poorly due to mismanagement of the cocktail of drugs I had been given for 19 years by my medical team.

After being taken off of all those drugs and having to do cold turkey in hospital as they needed to get the drugs out of my system quickly my seizures gradually ceased and I went into remission which is where I have been for the last 40 odd years - there has been the odd blip which i can count on one hand and all minor.

Jump forward to my sons 40th birthday party and my body decided I should have the worst seizure I have ever had, 5 paramedics keeping me alive and a helicopter en route which luckily was cancelled.

So today, sat here with a hip about to celebrate it's first birthday, two dodgy wrists and the other hip complaining increasingly loudly I am absolutely petrified about future seizures, falling and injuring myself even more than my OA is doing and being told to start taking a cocktail of drugs just for the Epilepsy as well as all the other stuff I have to take for Asthma, bronchiecstasis and pain relief.

I cried myself through my GP appointment, she was very sympathetic but seemed to think I should start meds sooner rather than later due to Neurology not being able to see me until July.

I'm petrified, it's taking me so long to get over this seizure, my husband wants me to sit in one place and not move in case I hurt myself, I need to try and get back to a normal life but the Epilepsy and OA are not a marriage made in heaven and I'm just wandering how everybody else copes….I'm assuming there is somebody else like me that has both and like me has no warning of seizures happening so i am unable to get myself into a safe place. I know I should buck myself up and get on with it but this one hurts more than the rest.

Can anyone offer me any real life help or advice? Please? Sorry this is so long

Trish