Epilepsy - Getting it under Control?

[Tuesando]

My partner suffered encephalitis in June 2020. Lots of focal (front lobe) seizures while in hospital but seizure-free at discharge a month later. However seizures came back 2 months later. For over a year we have dealt with initially very frequent seizures. It’s now down to 1-2 every ca. 2 weeks. He is on four medications (Keppra, Lacosamide and Topiramate - and clonazapam at night) and it still isn’t fully controlled. We are currently slowly weaning him off Keppra due to its depression/suicidal side effect.

What are other peoples’ experiences with reaching a cocktail that really suppresses the seizures? It is limiting our lives significantly. How long did it take? Which drugs works? Did depresssion/side effects playa role in the makeup of the cocktail?

#keppra #lacosamide #epilepsy #topiramate

[Paula-38]

Hi Tuesando,

I had Herpes Simplex Encephalitis and Status Epilepticus at the same time way back in the 1970's just after my first birthday.

I shall now take you through my journey with Status Epilepticus which I hope will be of some help to yourself and your poor partner, I feel so sorry for him.

Two months is not a long time, it's just the beginning and it ''can'' take much longer than one year, it is still early days even if it feels like an awful long time. My Mum used to worry like that and was extremely anxious and sometimes a bit impatient but my Dad was more patient though. It can help to be patient but that can be difficult if you are really over anxious/worried sick about the situation.

Well first of all I took Mysoline, Tegretol and Diazepam until I was 10 at that time I had the flu and tonsillitis at the same time, I was being sick and I couldn't keep anything down so this triggered off what was then known as my grand mals, (I believe they call them generalised seizures now) so a gentleman at the Encephalitis Society has told me. However I was hospitalised for six weeks and that apparently the Diazepam was addictive so I had to come off it, so they switched me to Clonazepam at night like you say your partner takes, but with Phenytoin rather than the Mysoline which often made me feel as though I was going to fall (but I didn't).

In my opinion it's sometimes best to go into hospital to switch medications incase your partner has any seizures during this process like I had, I was in bed with the flu when mine were triggered off always when I picked something up like that and with a high temperature/fever and it only ever happened while I was in bed in the middle of the night.

I had several right through the the evening and in the early hours of the next day of my admission because they just stopped the Diazepam abruptly so my Dad has informed me and that I was having them nonstop until the paedetrician had to come out at midnight apparently he had been painting at home and was called out in an emergency because none of the doctors and nurses knew what to do and my Dad said they were all panicking both my parents stayed overnight and they were given a bed each. Eventually the paedatrician attatched my head to some wires and a computer I didn't know what it was for.

(But with the knowledge I have now, it must have been an EEG as I understand it).

Anyhow he did something and then they stopped after all that, but I apparently had a good long sleep afterwards but I was still worn out even when I did "come to" in the end and my parents had a good sleep too even then they were still tired but relieved. I was on a drip as well.

I have been taking this new combination for 35 years now. It took me 8 years from that admission for them to stop altogether and then none after that. When my Mum thought they were going to come back she was relieved to find out that I stopped having them even though she was always worried sick if I ran out of meds she would be panic stricken.

Now I don't have to have that worry any more , it's a good job I don't because I suffer from profound Obsessive Compulsive Disorder - OCD, anxiety paranoia and in the past I have experienced Clinical Depression too.

[Paula-38 in reply to Paula-38]

Please feel free to ask me any questions whatsoever and I will respond to them soon as I can because I enjoy helping people out which is why I'm one of the Encephalitis Society's volunteers now.

Paula_38

[Bolinha99]

My sister had encephalitis in July 2020. She also takes depakene and topiramate. The crises are back now and she will have new infusions of rituximab. We are rooting for this to help her. For your crises have been very intense.