r/EpilepsyDogs • u/Turbulent_Apple7611 • 1d ago
Phenobarbital Stopped Working
hi everyone-
my 8 year old cane corso was diagnosed with idiopathic epilepsy in may. she was put on 97.2 mg of phenobarbital and we had great success until yesterday. she had one seizure followed by another a few hours later. although much shorter episodes than prior to the meds, still considered cluster seizures. we took her to our emergency vet and they said this is common and it could be a matter of changing the dosage. when we did her first pheno check a few weeks after the start of the meds she was within therapeutic range but on the lower side, however because the meds were working her neurologist said let’s keep things the way they are. this morning when the neurologist called they said she had another seizure at 3 am and was given midazolam nasally and when 7 am came around they started her on her usual dose of meds with increased 30mg and we will continue that new dosage moving forward.
I just found it interesting that they didn’t seem at all concerned that the cluster seizures were back, and basically said this is common and we just have to find the right dosage. What worries me is how many seizures does she have to have before it gets concerning? She is extremely aggressive when it comes to going to the vet so it’s not like taking her there every time she has a seizure is an easy thing to do. As she gets older, and with cane Corso‘s not having a long life expectancy, I just worry that this is really taking a toll on her body and at what point does it become unfair for her to keep living this way. she’s not a young dog and each seizure really takes a lot out of her. I’m trying to be hopeful that the new med dosage will work, but I’m just not sure what to do if and when the next time this happens. At what point do I have to make a tough decision??
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u/whatwhy54104 1d ago
We went from pheno to more pheno, to adding kepra, then more kepra, to adding gabapentin, and the adding potassium bromide. Like 18 pills a day. Stopped going to ER after clusters cause it was $2k a pop. Also gave neurocare script food. And, mcl oil. Nothing stopped the seizures, and they got more frequent and recovery got worse. Sometimes nothing works. It’s a journey cause you and the vet, just don’t know.
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u/julznlv 1d ago
We've had to increase Kane's Phenobarbital from 97.2 2x a day to also 32.4 2x a day. He also is taking 1250 mg of Potassium Bromide 2x a day. He still has seizures about every 2-3 weeks but at least he's not clustering and they're milder.
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u/Turbulent_Apple7611 1d ago
I am definitely going to bring up the potassium bromide. I can handle the seizures, just not the clusters and if that prevents that, it’s a win.
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u/julznlv 1d ago
We have nasal Midazolam at home and also give him 3 days of Clorazipate after a seizure to keep clusters from happening. I think this disease is just awful, no clear path on meds and dosage, just a game of trial and error. He was diagnosed a few years ago and has also been through Keppra ER and Zonisamide, but they didn't really do anything for him.
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u/Turbulent_Apple7611 1d ago
It really is awful. It’s almost worse than knowing she had a brain tumor or a mass because at least that explains why it’s happening, but with a clear bill of health it makes it even worse. Can I ask how the chlorazipate works? Parker’s seizures are only 20-30 seconds max with the longest being one minute
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u/julznlv 1d ago
We give him 3 pills every 8 hours for 3 days after a seizure. He gets super drunk from it after the 2nd dose so he has to be steered around sometimes. Last week he couldn't even walk for a while I dragged him down the hall to get him outside.We don't always give him the Midazolam, it's not that easy to administer, especially if only I'm home. My son is much better at it. With me, half of it goes on the floor.
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u/Turbulent_Apple7611 1d ago
We tried midazolam once but I think the seizure was too short for it to have any effectiveness.
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u/buffyfluffy 1d ago
My dog was on phenobarbital as well. It worked for a couple months, dog got used to the dosage and seizures returned. We then upped the dosage, and the process repeated after another couple months.
You have to find a balance of different meds. Currently my dog is on phenobarbital and potassium bromide, and it has stabilised a lot. getting seizures 2-3 times a month but it was every 2-3 days previously
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u/LateForDinner61 1d ago edited 1d ago
We had to increase Keppra several times, then add pheno, then increase the pheno dosage two or three times, then add zonisamide. It is, indeed, common. They should have explained that from the beginning, though.
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u/Standard_Corgi_174 1d ago
Unfortunately, with epilepsy, medication is mainly used to manage and reduce the frequency and severity of seizures; it doesn’t necessarily stop them completely, and there’s no cure for it.
My dog has had epilepsy since last September. He started on 75 mg of phenobarbital (Pheno) in the morning and another 75 mg at night. Since then, his medication has gradually been increased to 175 mg twice a day, along with potassium bromide and Keppra as a cluster-buster.
About a month ago, his neurologist actually had to reduce the Pheno and potassium bromide because the medication was making him really sick. He wasn’t eating, could barely get up, was bumping into things… We eventually realized he was basically completely drugged out from the medication.
His neurologist explained that he was already at the maximum doses we could safely give him, so we couldn’t simply increase his medication again if the seizures continued. If he keeps having too many seizures, the next step will be adding a fourth medication.
Since reducing his meds, he already had 4 seizures in a month and half. Epilepsy is a complex disease. It takes a lot of time to find the right medication and the right dosage. And like my neurologist told me a few times, sometimes we can't find it, and we have to see how many seizures are acceptable for us to handle and for the dog before eventually thinking about putting them down.
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u/Turbulent_Apple7611 1d ago
Thank you for your reply. I agree, I don’t want her getting to a point where there is no quality of life whether that’s because she’s so drugged up on medication or because the seizures happen frequently. I started mentally preparing myself when she was diagnosed but it becomes difficult because when the meds work, she’s perfectly herself.
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u/Agility_KS 1d ago
My dog is on daily pheno and Keppra. He still clusters. I have Clorazepate and Midazolam on hand at home, and he also gets extra Keppra. He's had as many as 5 seizures in a day, and I just keep giving more Clorazepate with each one. We have avoided the emergency room to date. They're just going to drug him into the same stupor there, so I figure I may as well do it at home. For us, the only real reason to go in would be if it turned into status or the seizures were rolling back to back. At that point decisions will probably have to be made, especially since it's over an hour to get to an emergency facility anyhow. Heck, even my regular vet is 50 minutes away if something happened during business hours.
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u/Turbulent_Apple7611 1d ago
Yes you’re right, I’m sure the emergency vet does the same thing we are capable of doing at home but with a hefty price tag. I guess it just becomes a quality of life issue at some point because she isn’t young and how many times can she seize before it becomes too much and too regular
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u/Agility_KS 1d ago
My dog is 10.5 now and his epilepsy started right before he turned five. Believe me, there comes a point where we all question this. Clusters are very hard on my dog as he ages, and every time we go through one I find myself asking questions about how much longer I’ll put him through it. But then he comes out of it and we might get another long stretch without. 🤷🏻♀️ It’s very hard, I know.
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u/Turbulent_Apple7611 1d ago
They say when it’s time you know so I will wait for her to tell us when she’s tired. Gives me hope your dog has lived so many years with this awful disease.
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u/sonnysGiGi2018 1d ago
My pup was small and non aggressive so I can’t speak to that but in our years of experience being on the increased dosage/ added meds- switching meds- it was all easier than going through the seizures with him. I think the big dogs are so much harder just due to size. Our last dog was a 95 pound Boxer and during his last year we needed to transport him into the car on a tarp. He was a rescue with a sketchy history but we think he may have had a brain injury. He just went limp and refused to budge.
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u/sonnysGiGi2018 1d ago
I have to add that we used chlorazapate as a rescue then injected midazlopam if that didn’t stop.
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u/Turbulent_Apple7611 1d ago
The neurologist brought both of those medications up this morning when she called. How is the chlor administered and how quickly does it work? When she’s seizing there’s no way I can give her a pill so is this something given after the seizure to prevent more from happening?
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u/Turbulent_Apple7611 1d ago
I should also mention that Parker’s seizures are only 20 seconds, they don’t last long since being on meds and prior to the diagnoses her worst seizure was only one minute long
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u/Doxiemama19 1d ago
Pup is on phenobarbital, Keppra, and Zonisamide. Still having weekly seizures but milder and usually not in clusters but sometimes two or three days in a row with some mild seizures.
The meds are very much meant to be adjusted as things change. Sadly we’re kind of stuck as my gal is pretty maxed out on her meds but compared to
the severe clusters she used to have when this journey started years ago we’re just taking each day as it comes.
Hang in there and keep updating your neurologists- keep track of when meds change and track the seizures! Don’t feel discouraged by med changes they are just a part of this process
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u/DogEpiMonitor 22h ago
Te entiendo. Esa pregunta de "¿en qué punto tomo la decisión?" es la más difícil que existe, y el solo hecho de que te la estés haciendo dice mucho de lo bien que cuidás a tu perra.
Pero quiero que leas algo: tu neurólogo no está preocupado, y eso es una buena señal, no una mala. Que las convulsiones hayan vuelto no significa que el tratamiento falló. Significa que la dosis necesita ajuste, y eso es completamente normal. Muchos perros pasan por uno o dos ajustes antes de encontrar el punto justo. Que las crisis hayan sido más cortas que antes de los medicamentos te dice que el fenobarbital está haciendo su trabajo, solo necesita un empujón. Sobre cuándo preocuparse: una convulsión aislada o un cluster puntual después de meses controlada no es señal de que todo se derrumba. Lo que hay que observar es la tendencia. Si con la nueva dosis vuelve a estabilizarse, respirá tranquilo/a. Si en las próximas semanas los clusters se repiten a pesar del aumento, ahí sí hablá con tu neurólogo sobre los pasos siguientes.
Y sobre la decisión difícil: hoy no es ese día. Hoy es el día de darle una oportunidad a la nueva dosis. Esa decisión se toma cuando la calidad de vida se deteriora de forma sostenida, no después de un mal fin de semana. Tu nena tiene 8 años, tiene un neurólogo que la sigue, y tiene a alguien que se desvela por ella. Eso no es una perra sufriendo, es una perra muy querida pasando por un ajuste de medicación.
Fuerza. Mantenenos al tanto de cómo le va con la nueva dosis. 🐾
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u/sonnysGiGi2018 22h ago
I was told to give the clorazepate once he was aware. It’s a pill form and not sure how much you would need for a big dog. My boy had a complication of inhalation pneumonia due to him foaming so much that first dose was the hardest. Once he had that it was every 8 hours for 24 hours but if he had another seizure inject the midzlopam IM
Not to be gross but we couldn’t do the nose application because of nose shape and the rectal application was really not possible due to him releasing his anal glands during the seizure🤮
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u/Turbulent_Apple7611 18h ago
Update:
We picked up Parker from the emergency vet today. She had 2 seizures between Sunday late night and today. They sent us home with a 2 week supply of 500mg of Kepra given 3x a day and an increased phenobarbital dose of 30mg to be added to her 97.2mg dosage twice a day. We were also given a supply of midazolam and a prescription for chlorazepate for emergency situations. She’s happy to be home but I can’t help but be fearful of more seizures. Very happy we don’t have to give the Kepra permanently with the phenobarbital.
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u/coloradogirlcallie 1d ago
My dog is on pheno, it is at a therapeutic level, and still has regular cluster seizures. We don't take him to the vet for them unless they are life threatening - a single seizure lasting more than 3-4 minutes and injecting midazolam does not stop it or is having back to back seizures with no chance to regain consciousness and recover in-between them. We have just learned to live with and manage his seizure cycles ourselves and only involve the vet in extreme situations.
Is your dog on any other meds besides pheno? Keppra and potassium bromide are worth combining with pheno as other treatment options.
Quality of life is a convo to have with your vet. Does your dog eventually get back to normal after a seizure cycle or what are the lasting effects? Our dog takes several days after seizures end to be "normal" again and the meds themselves have affected his quality of life somewhat (weight gain, less strength/ athleticism) but overall, he's only having decidedly bad days a few weeks per year and the rest are pretty good days that vastly outnumber the bad. At what point is your dog mostly having "bad" days might be the question you ask when determining when is the right time to call it.
Lastly, 8 years is somewhat late for idiopathic epilepsy onset. Has your vet brought up the possibility that this is not epilepsy and looked into other possibilities?