Effects of Fycompa for Juvenile Myoclonic Epilepsy? Had epilepsy for over fifty years, thus been through most of the 'selection' ,WORST!

[Adlon57]

I was on Fycompa [with lamictal] from December 2016 to November 2017, my neurology notes on myself had been lost, a new neurologist using notes I had sent from myself to the epilepsy nurse, 'we' decided Fycompa with Lamictal. Started my worst period of my life. Anybody had side effects or reactions from this medication?

[EpilepsyAction1 Partner Epilepsy Action]

I'm sorry to hear about the experiences you've had. I wonder if you would find it helpful to speak to a member of the helpline team about this. You can call us on our Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.

[Adlon57 in reply to EpilepsyAction1]

Thanks I'd rather hear personal experiences from patients experiences about taking the medication Fycompa, I am terminally ill, indirectly from reactions and side effects through fifty years being on epilepsy medication, no specific time given but ABSOLUTELY no hope of getting any better, "untreatable"! On the fifty years of taking any medication for this affliction Fycompa was easily the worst, I honestly cannot see any benefit from taking this particular "medication", the side effects and reactions led to two suicide attempts, in the eleven months I was taking this I had circa two weeks sleep, I did not start getting 'decent' sleep patterns for at least three years later. The continued effects and other medical episodes indirectly caused by this "drug" meant that from Xmas 2016, when I started it, to 2024 meant that I have aged medically and mentally circa 20 years, hopefully now as I am now downsizing I can enjoy what is left of my existence 🤞

[Justmepound in reply to Adlon57]

Adlon57 your response sounds like you have had a really bad time with epilepsy (I have yet to find anyone who has enjoyed it's effects)One thing I have been greatfull for and that has helped me greatly in my mood and to overcome feelings of apathy has been attending group singing classes organised by the Parkinson's disease support nurses ( I also have PD. )

Perhaps group singing is available in your area? Other group events, eg exercises and general support, have not been as useful to me.

Good luck with getting through Christmas.

[Adlon57]

I am moving or downsizing into a new apartment, where I will be able to get out, nice flat ground to centre of town/city, I was severely restricted by my two storey semi detached, house in a housing estate, on a hill, transport restricted, am claustrophobic, I have been tested twice for PD, both negative, my father had it, unknown to me at the time, brain fog effects of epilepsy medication, [but always aware that I could inherit the condition?]

Ironically this apartment is surrounded by hospital, care centre, care home and a graveyard, complete coincidence, and now because of balance/dizzy issues due to broken skull, I cannot walk uphill, [no running around 🙄] I will be able to 'explore' this area, convenient to various areas of town which in reality of 60 years I was never really able to do!

I am a history nerd, singing never really my thing, presently up to my neck in 'boxes, boxes, boxes,' couple of days to go, very quiet seasonal time this year!