My latest treatment is controlling the seizures, which is great, but I am on two drugs and the side-effects are problematic.
I feel frustrated that I do not have access to any support as the GP has referred me to the hospital, and there are no epilepsy nurses available (because of Covid) when I’ve tried to ring the hospital. Also I speak to a different specialist (not my consultant) when I do have a ‘review’ and have not had a ‘face to face’ consultation since Covid began. Phonecalls are less satisfactory. Also I don’t know why my ‘diagnosis’ seems to change with every letter. Altogether I feel unsupported and lack the confidence to try to change that. It does not help that my memory lets me down when I do speak to someone (even if I’ve prepared beforehand) as I am asked questions I am not expecting. Nor have my seizures seemed to fit the categories they ask about. It is all very frustrating.
