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Today a long visit with a veterinary neurologist led us to a new medication for Charlie's seizures: zonisamide. Taken twice each day, the neurologist says it has none of the disturbing side effects of Phenobarbital, potassium bromide, and other seizure meds.

Zonisamide would be impossibly expensive if we had to buy it at most pharmacies - over $400 for one month's worth. But at Costco, which actually carries the generic that most other pharmacies don't have, it will run around $75 per month for my big dog. There maybe an even better price break for a three-months supply, but we'll learn about that after we see how it works for Charlie.

Knowing how many Goldens and their families are dealing with seizures, this post is simply to let people know about this medication, which has only recently become available in the generic form that is not prohibitively expensive. It is not one that I remember anyone on the GRF mentioning to me in the thread about Charlie's seizures, http://www.goldenretrieverforum.com...ard/85243-seizures-starting-12-years-old.html.

If anyone does know more about zonisamide, I am most interested in hearing from you.
 

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Forgot to mention dosage. Charlie will take 4 x 100 mg capsules (evidently the largest available) twice a day. He's solid 80+ pounds, so the dose might be smaller for a lighter-weight dog.

Glad to think this is useful to others. If we share what we know, maybe we'll all come out in a better place!
 

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Used it on Morgan for over a year. It can make him sleepy and will push his Pheno numbers up in a blood test. You are supposed to be able to reduce the Pheno by adding it, but that never worked for us. I think it did help with the focal seizures. Is he still having Grand Mals?
 

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Used it on Morgan for over a year. It can make him sleepy and will push his Pheno numbers up in a blood test. You are supposed to be able to reduce the Pheno by adding it, but that never worked for us. I think it did help with the focal seizures. Is he still having Grand Mals?
Thanks for sharing. I know this isn't easy for you.

We are indeed hoping to get Charlie off the Pheno altogether. In time. The Pheno simply isn't controlling the seizures, which are becoming more frequent, so we have to try something else. We increased the Pheno dosage about two weeks ago, but he had another grand mal seizure last night and multiple focal seizures daily. His Pheno dosage is just reaching what the neurologist regards as therapeutic dose, but Charlie doesn't tolerate it well and I am reluctant to increase it. I so hope the zonisamide works for my boy.

Prayers for Charlie...
 

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Zonisamide is an add on drug. I don't think it is intended to be used by itself. I am so sorry you are going through this, I wouldn't wish it on my worst enemy !!!
 

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Discussion Starter · #7 ·
I'm just going by what the neurologist said today. He seemed to believe that getting Charlie completely off Pheno was in our future. Guess it is a wait-and-see thing. Perhaps he plans to add another med and just hasn't told us yet.
 

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Today, before we begin the tapering off/down, Charlie is taking 90 mg of Pheno twice a day. The plan is to reduce it by 15 mg per dose when he starts the zonisamide, which we will get tomorrow. (It's a fairly long drive to the place where it's affordable.)

Today I spoke with our long-time vet about interaction between Pheno and thyroxine, and we have a plan to monitor Charlie's thyroid levels more aggressively as we change his seizure meds. I will also follow up with neurologist on Monday regarding zonisamide as an add-on medication and whether he intends to substitute something else for Pheno.

Thanks for caring!
 

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I am not trying to be intrusive here, but that's a lot of changes you are making in a short period of time. Upping the Pheno 2 weeks ago, now tapering and adding Zonisamide. Because I have been there already, I think you are going to have a hard time telling what is going om. I know it's hard to have his seizures not controlled, but....
Morgan was only 45 lbs and it took 150 mgs of Pheno plus Potassium Bromide to get her into a therapeutic range. Sometimes it would take over a month for her body to get used to the meds. Of course every dog is different, but I have great concern here, because his Grand Mals are still happening. If you get a chance , call me and we can talk more.
BTW I am still thirsty !;)
 

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I am not trying to be intrusive here, but that's a lot of changes you are making in a short period of time. Upping the Pheno 2 weeks ago, now tapering and adding Zonisamide. Because I have been there already, I think you are going to have a hard time telling what is going om. I know it's hard to have his seizures not controlled, but....
Morgan was only 45 lbs and it took 150 mgs of Pheno plus Potassium Bromide to get her into a therapeutic range. Sometimes it would take over a month for her body to get used to the meds. Of course every dog is different, but I have great concern here, because his Grand Mals are still happening. If you get a chance , call me and we can talk more.
BTW I am still thirsty !;)
I agree.... so much is happening with this pup right now that you won't know what works... and honestly I wouldn't be tapering anything until you got that zonisimide in his system.... our cuinn was on 200 mg of pheno twice a day... until we added in the keppra (levitaceretum) and now he is down to 100 twice a day with some breakthrough seizures but definitely more controlled. ... I am also concerned about the dosage changes and the tapering and all of that...
 

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Discussion Starter · #12 ·
Thanks for the information. I take your comments as friendly concern and not in the least intrusive. I did ask for input from people with experience with these meds, and that certainly includes you! I'll call this weekend, being mindful of the time difference. Thank you!

I don't think I want Charlie to adapt to his current dosage of Pheno, though the neurologist said is barely in the therapeutic range for a dog of his size. It just has so much negative impact on his ability to get around that it breaks my heart to watch him. I think I made it clear that his quality of life is the top priority, and a big dog who can't walk around safely or navigate the stairs on his normal route is in bad place.

I understand your concern about changing too many things at once. I'll include that subject in my next call to the neurologist.

You'll probably stay thirsty for at least the next month or so, if not longer. Remember that there is no substitute for plain water. And there is a plan in operation! :)
 

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Discussion Starter · #13 ·
Thanks, Shalva. I'm absorbing all of this input and making a list of things to discuss with Charlie's neurologist.

We appreciate all the caring responses.
 

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Costco prescription pricing

We have just come home from Costco. My vet neurologist was mistaken about the cost and so was the online estimator. For 240 of the 100 mg zonisamide capsules, the online system said the charge would be around $75. The pharmacy at the local Costco priced it at $61, dropping to $56 for members!

I joined on the spot. :D

My next move will be to price all of our other prescriptions there!
 

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thats like the keppra.... I get it at our local hannaford and to buy it would be $475 per month.... with their 7 buck a year program the price goes down to 37 dollars... which I am pleased with for us but honestly it pisses me off a bit because it shows the ridiculous mark up in the drug
 

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Discussion Starter · #16 ·
Quick update

Earlier this week I was badly worried because Charlie could barely stand and needed help getting up and down the stairs - a huge problem since there are stairs on every path to outdoors. Sometimes he seemed completely out of it, unaware of what he was doing and where he was. He would even squat and pee on the floor right in front of us, seemingly unaware of what he was doing.

I think it was a mistake to put him on the full dose of zonisamide (4 capsules twice a day) all at once, instead of building up gradually. :doh: Two days ago we reduced his dose to 3 capsules twice a day and the change has been dramatic. He is back to acting like my Charlie. Still a bit shaky on his feet, but he doesn't need help with the stairs and there have been no more episodes of peeing in the house.

On the bright side, the focal seizures seem to be almost completely gone!

Our current plan is to give Charlie a week to adjust to the zonisamide at this level and then gradually increase back to the original dose, assuming all goes well.

Every day with a seizure dog is an adventure.
 

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I'm new to the forum and I found you because my Teddy has started having seizure. Or at least we are pretty sure that's what they are. He has the drooling, and inability to stand. You can see the muscles quivering in his hind quarters and he's got the glassy look. He never has lost bowel or bladder control and they have lasted about 10 minutes from start to back to normal. I think they might be the focal kind because he doesn't seem to be affected in the front (other than the drooling). No paddling, but when he starts to come out, he flops--like he's trying to stand but can't. He's only had 3 since December but our vet recommended starting meds. She put him on the 400 of Zonisamide to start because of the limited side effects. So glad to have a place to go and read and learn. Thank you all for sharing.
 

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I'm new to the forum and I found you because my Teddy has started having seizure. Or at least we are pretty sure that's what they are. He has the drooling, and inability to stand. You can see the muscles quivering in his hind quarters and he's got the glassy look. He never has lost bowel or bladder control and they have lasted about 10 minutes from start to back to normal. I think they might be the focal kind because he doesn't seem to be affected in the front (other than the drooling). No paddling, but when he starts to come out, he flops--like he's trying to stand but can't. He's only had 3 since December but our vet recommended starting meds. She put him on the 400 of Zonisamide to start because of the limited side effects. So glad to have a place to go and read and learn. Thank you all for sharing.
Welcome to the forum! And a sad welcome to the world of canine seizures. You'll find that a lot of members have experience with seizure dogs.

Most of what I have learned about seizures is documented in a thread that I maintain faithfully: http://www.goldenretrieverforum.com...ard/85243-seizures-starting-12-years-old.html. Others have begun posting information there, too, so we have something of a support network. You are welcome to join us! The first page or two and the last couple of pages of that thread may be the most useful to you, since they contain pointers to other web sites that are good resources.

In particular, note that several of us have dogs whose seizures are closely correlated with use of topical flea and tick preventatives, especially Frontline. My vet has recommended that it should never be used on Charlie, my seizure-prone senior, again.

If you have questions or there's anything I can do to help, please let me know.

Lucy
 

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Just joined-concerned for my 6 1/2 yr old with seizures

My 6 1/2 year old Jake had his first seizure Dec. 6th. 3:30 am, starting with tremors/flopping and then violent shaking, choking sounds plus urination and release from his anal glands - it lasted about 3-4 minutes. The post-ictal stage lasted about 4-5 minutes. We thought we lost him - stiff body, eyes rolled back, slow (almost stopped) breathing. I took him to the vet the next day for all of the blood and urine tests-which came back normal. Unfortunately he experienced another Dec. 23rd - same deal. Our vet put him on zonisamide (only) which we started immediately. Although it has only been 8 days, there have been no seizures, but he is acting very different: sleepy, depressed, lack of appetite and very clingy (more than usual). I am not sure if that is from the meds or the seizures.
My husband and I are considering an MRI to rule out any tumors ($1500-1800) but didn't feel the push to do so with our vet. He is not/has not been on Frontline or other flea/tick medicine. I spoke to my breeder who has never had any offspring with seizures (7 maternal bloodlines and 3 paternal bloodlines). We are trying to rule out any exposure to toxins or chemicals but to no avail. It seems like they came on so suddenly and wish we could fiigure out why. :confused:
I am so overwhelmed but am grateful to have a forum to read, since this is the first experience ever for me and my family to have a dog with seizures. Any insight is warmly appreciated.
 

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Zonisamide is usually an add on drug, to Pheno and/or Potassium Bromide. I am surprised your vet is giving it on it's own?? Those are some of it's side effects and most times the dogs do get better after the drug has stabilized. When I was using it, it was more for focal seizures than Gran Mals, but that's been over a year, so maybe things have changed. I am so sorry you are going through this.
 
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