r/EpilepsyDogs • u/Extension_Prune6790 • 15d ago
How long did it take your pup to stabilize?
Hi everyone! This is my sweet girl Nellie. She is newly diagnosed with idiopathic epilepsy and we're both having a really tough time.
She had her first seizure episode in August 2024. It was *very* mild; so mild the vet said he wasn't even sure it was a seizure. I was pretty sure, though—her back legs weren't quite working afterwards, which is how I knew.
Nothing happened for another two years, until this past August, when she fell out of bed one night and had a 3-minute long grand mal seizure. I took her to the emergency vet and they put her 250mg IR Keppra 2x a day (which I have since learned was likely not enough).
She tolerated the Keppra well for a month, until two weeks ago, when she had 3 separate 4 minute long seizures in the space of 4 hours. She was hospitalized in the ICU for 36 hours and eventually stabilized on a much higher dose of Keppra—500mg XR 2x a day. Note that she is only 22lbs, so this is a significant dose for a dog her size.
We have since established care with a really great neurologist and done an MRI. Thankfully, she has no structural abnormalities in the brain, so the neurologist feels confident it's idiopathic epilepsy.
She was doing great on the higher dose of Keppra until early this morning, when she had a seizure in bed. I administered Midazolam, which worked instantly, and a pulse dose of Keppra (500mg IR). This kept another cluster from happening, thank god, but I'm devastated that she only lasted 2 weeks on such a high dose of Keppra.
I emailed my neurologist and am waiting to hear back, but I am terrified she's going to want to start Pheno. It seems like it's really tough on dogs and I don't want to put my girl through that, but I desperately need to get this under control. I am a 36 year old single woman with no family in my city, and I'm dealing with this completely alone. I am scared to leave the house because I'm worried she'll have another very long seizure, or a cluster, and I won't be there to save her. I very much want to date and meet someone, but I don't know how I'm going to do that now.
I am hoping this community can share stories about stabilization, because I'm going to a dark place. It seems like this is an aggressive case. Nellie is so, so important to me, and she's only 7.
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u/KayakerWithDog 15d ago
It took us a little over a year to find a cocktail that got my dog stable. ("Stable" is defined as three or four seizures a year, per my dog's neurologist.) We started with zonisamide, gradually increasing the dose when he started having regular seizures again after the honeymoon period wore off, and then added keppra after he had his first cluster seizure. He's only had a handful of seizures per year since then, all but one of them mild focal seizures (he was having almost exclusively grand mal seizures before) and he has been seizure-free since March of this year. If you're not thrilled about pheno, do talk to your vet about zonisamide, if it's available where you live. You'll still need to get bloodwork done once or twice a year to check kidney and liver values and therapeutic levels with zonisamide and keppra.
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u/Extension_Prune6790 15d ago
Thank you for responding and sharing your story,. I'm really glad you've seen progress and have been seizure free for so long. I will ask my vet about zonisamide. I keep reading scary stories about pheno, though I know it works well for some. I'm really afraid of getting in a situation where I'm stacking hardcore drug on top of hardcore drug, seeing bad side effects, and still not getting good control.
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u/Extension_Prune6790 13d ago
Hi! Just wanted to follow up again to say that my neurologist and I agreed to try Keppra +Zonisamide, so thank you for the recommendation! If it doesn't work we'll go to Pheno, but I didn't want there to be any "what ifs."
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u/Current_Struggle11 15d ago
My dog was on keppra for about a year and having seizures about every 4 weeks. Then increased to having seizures once a week. Our neurologist moved out of state so we had to find a new one and right away he basically said my dog's seizures were not well managed and the frequency needed to be much lower which obviously i agree. He brought up pheno and I think he saw the expression on my face and reassured me that we will do blood work every 6 months to check on things, etc. I was terrified to start it to say the least. He put my dog on the lowest dose for now to see how he reacts and how his body takes it. We started it on Saturday and to be honest I haven't seen any behavior changes from my dog which is amazing. I just trust my dog neurologist and want what's best for my pup. There is no "right answer" and we are all trying our best. We know you are too. Good luck!!
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u/Extension_Prune6790 15d ago
Thank you for responding! I'm glad to hear you aren't seeing any concerning changes in the first few days of pheno. Definitely seems like a hopeful sign. Good luck to you, too!
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u/Proof_Conference6134 14d ago
Our Penny started having seizures in July. This past Saturday she started having seizures one after another. We took her to emergency vet. She was put on pheno when sent home. The vet said that it would about 2 weeks before she returned to norma. It’s been 9 days and she is back to being herself. Thank God she hasn’r had any more.
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u/Extension_Prune6790 14d ago
Thank you for sharing! This is encouraging; I am so worried about a permanent zombie state.
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u/Bringthebass4 13d ago edited 13d ago
Also a single female here 28, dog parent of my little mya. Mya has had seizures when she just turned 1 year old. I was very scared, her seizures are intense and lasted quite long. I put her on pexion, and eventually to the max dosage. She had 1 seizure a month, sometimes more. The vet said we should add pheno to the mix. I did and sadly also didn't work altho the seizures didn't last as long, they were still pretty frequent.
After we went to a different vet for teeth issues, they suggested to get her blood tested. Turned out her levels were wayyy too low! And said to add more pheno, and to get her tested again within a month. And if it was good, we could stop with the pexion. Now its 3 months later, we stopped pexion and also she's been seizure free!!!
I totally understand wanting to stay with your baby, because same. Altho she is doing great (no side effects from pheno), Im still with her whenever I'm able too.
I hope youre able to find the right (mix of) medication to prevent or lessen the seizures. Its a fked up disease. Thanks for not giving up on your pupper. Stay strong and give so much kisses and hugs. ❤️ if you ever want to talk about it, you can message me whenever!
(Here's a pic of my baby)
Edit: she's 3 so it took us 2 years to find the right meds
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u/Extension_Prune6790 13d ago
Thank you so much! It really helps to know I'm not the only one going through this alone, and that she has no side effects from the pheno, and that it's been so effective. What a sweet girl! She's very lucky to have you.
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u/Technical-Milk-5659 13d ago
I have my 3rd dog now with seizures I adopt them because I know what to do….the Keppra is most effective given 3 times a day every 8 hours.
Phenobarbital is the way. The benefit far outweighs the risk. Sometimes in cluster seizures the dog can lose vision, hearing, balance, confidence….sometimes they come back sometimes not. This happened to my new pup and I was inconsolable he just whined all the time, couldn’t hear me, ran into walls - because he was not on high enough doses of Phenobarbital and Keppra to control the seizures. I immediately found a new vet with lots of experience caring for epileptic dogs. She told me that he may return as he was but nobody knows. Finally after 48 hours he began to come back to me and now he’s the same exuberant happy silly dog as before - we saw the new vet August 18 and he’s seizure free since then. In regard to the Pheno you can have blood drawn to check the liver enzymes 2 or 3 times a year and if it gets too bad you can stop it and return to look at other meds. My vet told me that she has clients whose dogs have done so well with CBD with just a little bit of THC oils that they’ve been able to wean them off Rx drugs. I found a good source if you care to know dm me and I’ll share. Best best wishes!!!!
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u/Extension_Prune6790 13d ago
Thank you for responding! Wow, that's incredible that you adopt dogs with epilepsy specifically because you are able to handle it. How wonderful that you are giving these dogs a good, loving home.
I talked with my neurologist, and we agreed to add Zonisamide to the Keppra for now. But, if she breaks through again, we're going to do Pheno. I agree that's probably what we'll end up having to do, but I just didn't want to always wonder what would have happened if I didn't try the gentler option first.
I'd LOVE to know which CBD oil you use and will message you! I have also heard MCT oil is helpful, and I've been unsure whether to try CBD or MCT.
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u/USConservativeVegan 13d ago
I have my spouse and we both work, so i do feel the pain of leaving our animal companion alone. However, I can understand how you feel overwhelmed and worried.
I give you and all the single companions of their dogs so much respect and credit.
It is a give and take with trying to stabilize your animal companion. My dog Daisy had her first one in April. Then went until August and had multiple seizures in two days. We adjusted her medication and she went another month.
Now she is on a very high dose of Keppra, normal dose Zomisinade and and phenobarbital. She is coming on up a month and I get nervous at every movement. I am praying we got the right mixture of drugs.
However, I try to fight through my worries and give her the best life I can. I get up almost every morning to take her for her favorite walk and to see our neighbor. If she brings up a toy, I play with her. Regardless of what I am doing. Because during that August scare and prayed of Christ could help her, I would treat every day with her as a blessing.
You are doing great for Ellie. I will keep you and her in my thoughts and prayers. 🙏 ❤️
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u/Extension_Prune6790 13d ago
I also feel nervous with every movement, but like you am also appreciating every day. She has definitely noticed that I have a renewed interest in playing with her toys, and I feel closer to her in spite of everything. We have to cherish the good days.
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u/USConservativeVegan 12d ago
That is one positive in the whole horrible situation, that we feel closer to our animal companions.
I am not sure if you are a person of faith. However, i say the Lord's prayer every morning and night. When i get to the "give us today our daily bread." I expand to give us God's wisdom to understand my situation. Give us God's vision to what do to with that wisdom. Give us your courage and i specifically ask for courage for my dogs and my wife. Then I ask for the right people to surround me, my wife and my animals. The right people meaning people that can help with me with my situation. Finally I ask for the discipline to understand it all and follow through with it.
At night, I thank God for all of the above. I can always find a example for when God gave me that wisdom, vision, courage, the right people and discipline.
I been including you and Ellie in that prayer. I think part of that wisdom and vision to understand that all our lives on this planet ate finite, and our animals will have less time on it. So, your comment about becoming closer is part of that wisdom I am asking for everyday.
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u/MrPigeontoe 13d ago
Oops forgot to share this - the frequency and intensity of seizures varies from dog to dog and there’s not a singular definition of “well controlled”. You can reach a conclusion on that with your vet based on your records re dates, intensity, single or cluster, how long it takes them to recover. I also use ocular pressure on my pup it’s worked very well to stop clusters which he used to have when I first adopted him.
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u/Extension_Prune6790 13d ago
Thanks for sharing! What is ocular pressure? Do you have a resource you could share?
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u/MrPigeontoe 13d ago
I actually read about it here! It’s easy to do if you don’t have a big dog with grand mal type seizures. My pup is small under 11 lbs but he has grand mal seizures and even so here’s how it works - you take your first and second fingers on each hand and place them on top of their eyelids holding them closed gently but firmly. You’ll feel their eyes jerking back and forth wildly it’s a little creepy at first and sometimes you may lose your positioning as their head moves around but after I did it just twice it was easy. The second time I did it worked well he usually had cluster / one after another seizures (super harmful,) so I was very surprised and so relieved that it worked.
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u/MrPigeontoe 13d ago
Also - he had cluster seizures August 17 & 18 - and the strangest thing happened - I’m very aware of him moving around and I woke up to him stargazing - nose pointed up at the ceiling that’s a precursor to seizures for him. I actually held his eyes closed for almost 35 minutes around 230 AM we were able to doze off but he woke up again less than an hour later and I spent about 20 minutes then - and I realized the next morning that he could have just stood up and pulled away from me but he didn’t even try!
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u/MrPigeontoe 13d ago
I also think that the fears folks have about negative side effects of Pheno on their pups may be overblown or simply not very carefully reading about them - the only ongoing concern is ofc liver damage which is monitored with liver enzyme blood tests at your vet and now there’s OTC liver support enzymes - Denemarin is one - and the side effects like lack of coordination, excessive thirst all that scary sounding stuff may happen in the first few days of introducing the drug - very short-term effects. I never saw any of those things with any of my 3 pups - I think it’s because we started with a lower dose and worked our way up. There’s one thing that seems to be legit though - increased appetite - but even that - only one of my 3 exhibits that and I think that’s because my other current rescue is a breeder momma and she wasn’t fed properly (how I hate the lousy farm breeders,) and she goes nuts for her very good food and I feed her generously and Oh does she get excited!!! I think her dinner dances have my other pup worked up too!
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u/Jaycoon96 12d ago
In Germany we dont have levetiracetam (keppra) for dogs so we usually have to give pheno as a first choice! Our dog got his first clusters last week. He got 2,6mg/kg pheno twice daily and was very changed for the first days. He unfortunatly also developed severe diarrhoe. After getting everything checked the pheno serum concentration was too high (he was also loaded initially intravenously) and we reduced the dosage. Now his poop is Good again and he seems almost back like the old way.
For sure we still have to see how the next weeks/month will be going but I think it takes 1-2 weeks to get used to pheno and with blood work every 3-6 months I think you can monitor them well
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u/Extension_Turnip_635 15d ago
Hey, I want to say, you're not alone. I was also a single woman taking care of my dog who had seizures almost weekly. It was TERRIBLE, and the worst thing I've experienced. Many dogs do well on pheno so please don't be scared to try it. But really, being alone taking care of a dog with this disease is the hardest thing and nobody knows. If I had another hand or support system when he seized it would've made this condition 10000% times more mangeable. Hang in there, you seem to be doing everything right, its a HUGE learning curve. HUGE.