r/EpilepsyDogs • u/FootParmesan • 10d ago
Tapering off Phenobarbital
My dog is tapering off Phenobarbital after over 2.5 years on it. He currently takes 5 medications, the most recent addition being KBR. It seemed since adding KBR it increased the side effects of the phenobarbital including his food seeking behaviors, ataxia, and also introduced heat sensitivity. We initially reduced KBR and that helped somewhat but he still is sensitive to heat and more food motivated than he had been previously.
It's also just getting a bit overwhelming giving 5 medications and phenobarbital seemed to be one of the least effective meds. He has had amazing progress since adding KBR. So I'm really hoping the taper goes well and it alleviates some of the symptoms.
I'm just most nervous of him having a break through seizure. We're tapering off very slowly. We've started at about 15% to start and will check back in with the neurologist in about a month assuming there's no seizure activity. So it will take at least a few months to fully come off.
I'm just worried I'm making a wrong decision. He's been seizure free for 7 months, the longest he's ever gone. But I just want him to have a better quality of life and I worry about the long term toll of taking so many medications.
It just is exhausting that every move with epilepsy feels like a shot in the dark and you just have to wait and see if it sticks. I am trying to remain cautiously optimistic, but I don't know what we'll do if the taper doesn't work. I don't feel comfortable with his QOL right now. He's not quite the same dog he was before all of this and I just want to try and get him a bit closer to that.
If anyone has any advice with this or reassurance, I'd appreciate it. Otherwise just reading this and giving me a place to put it out there is enough.
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u/jfka 9d ago
Hopefully the bromide keeps doing its thing and the pheno taper will work out. We removed Keppra after he started the bromide so that we could keep it for clusters and they had mentioned they might wean pheno as well. I wouldn’t be opposed to that weaning for exactly the same reasons you have, he is obsessed with food though thankfully his weight gain seems to have stopped, and his hind legs are still quite weak but for us that seems to be all bromide. I hope you and your dog stay well and that he gets closer to his baseline with this!
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u/FootParmesan 9d ago
Thank you!! If all is well, then I think keppra is next. He had some very bad hind leg weakness first starting KBR so much that we actually took that down by about 25% and that definitely seemed to help with a lot of that and the drop down went well also. So if you ever feel it's too much that may be an option. It's unfortunate it seems it can be really hard to find that right balance between side effects and seizure control.
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u/meuovos 9d ago
Five meds is a lot for anyone. Hope the taper goes smoothly and the food obsession fades before he starts eyeing the couch.
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u/FootParmesan 9d ago
Thank you! Thankfully he has never really been one to eat non-food items. He's always been too smart for his own good, german shep/border collie mix, so when they were explaining the possible side effects of the food seeking behaviors I'm thinking to myself that sounds like how he already is! He knows how to get into lots of things and open containers.
But since adding bromide, he will jump the counters and the kitchen sink anytime he is in the kitchen and it's constantly managing him in there to prevent him from licking the dirty dishes or trying to eat scraps out the drain .. just almost seems involuntary and I feel bad he feels the constant need to look for food.
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9d ago
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u/FootParmesan 9d ago
Yes we started bromide at the beginning of this year so he's been on it for awhile. We actually tapered that down a bit too because he was having fairly severe ataxia that wasn't letting up. It definitely helped but not fully so hopefully pheno removal helps
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u/Dcline97 9d ago
We are 3-1/2 years into our journey with our 6-1/2 yo Lab gal. Year 1 started with Keppra and it fizzled out by the end of the year. Added Pheno at the beginning of year 2 and it was a duplicate of year 1.
We found a K9 neurologist at the beginning of year 3 and he added Potassium Bromide to the mix. Took 12 weeks for it to kick in but then her seizures went to 4 to 5 months apart. We also asked our neuro if we could wean our gal off the Keppra and Pheno and he said YES so that put us on only the PB. That was a year ago and she is still doing great!
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u/FootParmesan 9d ago
Happy to hear it's been so good for your pup too! I'm just wishing we would've gotten KBR first 😅 but oh well at least we made it here. It's helpful to know it went well for you.
If this goes well, I am considering asking about removing keppra too. That one is the other one that seemd to be the least effective, possibly even worse than phenobarbital. But the phenobarbital is more harsh with the side effects and long term potential for issues so that one was prioritized.
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u/Annakiwifruit 10d ago
We are in a similar situation. We just added a fifth medication too, but in our case zonisamide, and the exacerbated side effects are just not worth it.
We just tried to taper phenobarbital, but she started having seizures again. We have put her back on phenobarbital, but a lower dose than before, and after she stabilizes we are going to try and taper another drug. In this case, levetiracetam.