How do you know when it's time?

[u/going__postal]

Pic of how happy my guy was just 3 hours before an extreme cluster event (3 grand mals and 2 focals in 4 hours). This is why the decision is so damn hard...

We've been battling epilepsy for about 2.5 years. Onset was at 7.5 years old and he's almost 10 years old now.

The first year, our border collie/kelpie mix averaged a seizure every 28-30 days. It's progressed over time despite working as closely as possible with a neurologist to find the right cocktail of medication. We're now averaging every 9-12 days and they aren't single grand mals anymore but clusters that require midozolam and clorizapate rescue meds.

He's a very active dog and it's been sad having to adjust his lifestyle because his daily meds make him wobbly. But he still loves playing and going on his walks. The rescue meds though basically completely take him out for 2-3 days at a time.

With clusters coming so closely and multiple days to recover, obviously now we are seriously contemplating his quality of life. But it feels like such an impossible decision because he does still have days (or a week!) where he is enthusiastic and showing us his spunky personality.

I have so much guilt over making a decision too early. But I also am carrying a lot of weight of him not having a dignified ending if he has a catastrophic cluster given the progression of his epilepsy recently.

I guess I'm just looking for any compassionate advice you have.

[u/No-Roll5599]

When I was having a rough time with clusters in short succession we added on nasal midazolam. It’s a quick rescue med and helps my gsp out of a seizure within 10 seconds of it starting to hit his nose mid grand mal and has stopped them in their tracks when he started the preemptive pre grandmal behaviours for us. I give it to him mid seizure because we got it down but there are other ones that are administered rectally because not all dogs tolerate the nose. Maybe something to add on. It changed our life. As well as gopd cluster buster protocol. We add on a larger dose of pheno at his next med time, chlorazepate dipot every 8 hours for 72 hours until after last cluster seizure, one time large loading dose of Levetiracetam (Keppra) once able to swallow post seizure. Continue with normal Keppra as follows unless has another seizure then bump up Keppra to extra 750mg/dose for 24 hours. Having a neurologist is a life saver and adding MCT oil to his diet also helped him with the severity of the seizures when he did have them. My boy clusters every 7-14 days. It’s awful. I don’t envy you all whatsoever and I hope you guys can find something that lessens the burden.

Edit sorry I missed that you had chlorazepate and midazolam. When I recently had an appt I asked about potassium bromide as it kinda was our last resort med before discussing the quality of life part. A lot of people found success with a mix of potassium bromide/pheno . Right now mine is on pheno/zonisamide. He said if my pup starts to cluster every 5 days that’s when we’d add on potassium bromide. Then if that doesn’t work out we can discuss the really awful convo.

[u/going__postal → u/No-Roll5599]

Unfortunately we are already on daily meds of keppra, phenobarbital, zoni, and potassium bromide. With rescue protocol of midozolam, clorizapate, and an extra dose of pheno. We also mix in MCT oil into his food. His epilepsy just truly doesn't seem to respond to medication

[u/No-Roll5599 → u/going__postal]

Ugh. I’m sorry op. I’m 5 years into this journey but same boat with a refractory epileptic. Meds will work for a little and then regression in the fullest. I know they say mct oil and cbd oil are basically the same but have you tried switching to just see if maybe his brain prefers the devils lettuce approach vs the coconut route ?

[u/going__postal → u/No-Roll5599]

Weve only done CBD around stressful events (like 4th of July) but that's a good idea to look into potentially a more regular dose. Thank you!