New member with questions about Zonisamide

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CJoyner
Posts: 7
Joined: Mon Oct 13, 2014 7:54 am
Location: Manassas VA

New member with questions about Zonisamide

Post by CJoyner » Mon Oct 13, 2014 9:42 am

I have a 3yr old Pitt mix. He just suffered a cluster of seizures about a week ago. We rushed him to an emergency vet and he was put on Zonisamide. 100mg 6 pills a day. He weighs about 60lbs.
It's near impossible to pill him, he has lost pretty much all appetite and much more lethargic than normal. He stumbles sometimes when walking.
So far I don't like the effects of the drug other than he isn't seizing. But I don't think I can manage 6 pills a day for the rest of his life! I don't want him on this drug. Is is possible we can reduce the dosage or get him on a different drug? Almost everything I read zonisamide is used with other drugs not just alone. Is this odd?
I will say he had new blood work being done next Saturday. At the ER vet his liver levels were slightly high. If this second round his liver levels drop back down could he be switched? I feel helpless at the mercy of my vet who thinks this is the answer. But this isn't my dog! I want my dog back :(
Shemp- 3yr male Pitt/boxer
1st seizure 7/25/14
Last seizure 10/4/14

MK's mom
Posts: 1708
Joined: Wed Mar 01, 2006 9:48 am
Location: Michigan

Re: New member with questions about Zonisamide

Post by MK's mom » Mon Oct 13, 2014 1:24 pm

My boy is on the same dosage as your dog and he isn't suffering any of those signs...he is also on phenobarbital. The vets like zonisamide because it has few side effects and doesn't hurt the liver like phenobarbitol does. If your boy continues to seize you may as well resign yourself to the fact that he will be on some kind of medication for the rest of his life.

If he's having liver issues, he might be seizing secondary to something else that is going on. Did he seem normal before his first seizure or did you notice all of this after his cluster? Depending on the dog, the post ictal effects from having seizures can last days, so that may be why he's tripping and doesn't seem himself. Also, give the zonisamide a chance to kick in, the dogs usually adjust to any medications that they start anew.
Nathan
3.5 yo Irish Setter boy
First seizure 7/26/2013
Last seizure 3/24/2014
__________________________________
MK
5 yo Irish Setter boy
First seizure 1/25/06
Last seizure 9/4/2009

Aug 17, 2004- Sept. 22, 2009
May the shamrocks fall softly sweetpea

ShilohsMom
Posts: 818
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: New member with questions about Zonisamide

Post by ShilohsMom » Mon Oct 13, 2014 1:32 pm

Welcome to the boards although I'm sorry that you're joining us under the circumstances.

Typically a vet will prescribe Phenobarbital as the first drug although if your dogs liver levels are a little high I can understand why that wouldn't be the first choice. I can certainly understand not wanting to see your dog go through this and while Shiloh hasn't been on Zonisamide as his only drug, I'm not sure about the side effects. By the time Shiloh was given Zonisamide he was already taking Keppra and Potassium Bromide and didn't have those side effects.

I would recommend talking to the vet and see what they say about why Zonisamide is the first choice and reducing the meds. I would love to get Shilohs meds reduced but the most important thing is getting the clusters under control (he had 16 seizures last month over two 3 day episodes).

Will your dog eat things like cheese, Vienna sausages, pill pockets, ground meat like hamburger, turkey? I'm lucky that Shiloh will pretty much eat anything. I can't imagine trying to get 18 pills down him everyday if he didn't want to eat!
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: New member with questions about Zonisamide

Post by Esmo » Mon Oct 13, 2014 4:00 pm

Welcome – I am sorry you have to be here, but you will find great support from the people on this board.

Maggie is on Zonisamide, but in her case, it was the second drug we tried after starting her out on Phenobarbital. She has had side effects after each the addition of each new drug (she is currently on 4 different drugs) but each time after a couple of weeks most of those subsided. Her most persistent side effects are some lethargy, usually for a couple of hours after she takes her meds and an upset tummy. I give her a powdered probiotic and ½ a Prilosec every day to help that – but let me tell you, her farts are deadly!

As far as getting pills down your boy…we have struggled with that (and appetite) with Maggie. I still have to pill her occasionally even with all our efforts (she takes 5 pills at a time 2x daily and 2 pills 3x daily – so it is fun when we have to pill her!). We have to keep changing things up as she loses interest in whatever we are doing after a time. We have had luck (for a time) with each of these – Velveeta Cheese, Nathan’s kosher hot dogs and currently sliced turkey lunch meat. Sliced deli ham worked for a bit, but she is off that now. Chicken breast meat works too. We never got too far with pill pockets. One thing that has helped is I have become more matter of fact about pilling her, which surprisingly makes it easier on both of us. She doesn't like it, but she seems resigned when we have to do it - at least I am not chasing her through the house to try and catch and hold her and it doesn't take two of us anymore.

About food…we are regulars at the pet food store in our town. We have tried everything we can think of – but are working most on trying to minimize grain. Our challenge again, is Maggie will eat one thing for a time and then turn up her nose. She is really liking scrambled eggs so she gets two of those in the morning with some sausage mixed in – this works for getting the supplements she takes into her. We alternate between Stella’s freeze dried biscuits (she likes Duck, Duck Goose) and Evangers Grain Free canned food – varying the flavors. She really liked the beef but it is looking like we will have to change that up again. I even went through a time of making her homemade food, but she stopped eating that once I had 3 weeks of meals in the freezer.

It can be frustrating to manage and there have been times I’ve been sitting on the kitchen floor in tears because she won’t eat or won’t take her meds – but somehow or another we are muddling through. You will find the new normal, and most of the time it isn’t so bad (unless it is being horrible) :)
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

CJoyner
Posts: 7
Joined: Mon Oct 13, 2014 7:54 am
Location: Manassas VA

Re: New member with questions about Zonisamide

Post by CJoyner » Mon Oct 13, 2014 4:14 pm

First, thank you for responding! It can feel very lonely dealing with all this for the first time. Needless to say I'm overwhelmed:(
Shemp had his first seizure end of July at a kennel. Bloodwork came back fine and he had no other symptoms. Untill last week he was at a kennel for the night and they called us to say he had a seizure. We chalked it up to stress, like the first one, but once we got him home he had 5 more seizures in a 24 hour period. I will say that the first day he took 9pills untill the seizures stopped. And I'm sure that's why he seemed so "drunk" he was even having accidents in the house. But he since then has normaled out, but just seems so sad and lathargic with no interest in food (which worries me)
Unfortunately he's a chewer not a gobbler so he finds the pills in pretty much anything I put them in. I can't pill him, he just locks his pitbull jaw and it ends up stressing us both out :(
Does zonisamide come in a liquid form? How would I be giving him that if it was an option?
Is zonisamide supposed to be used on its own with out any other drug?
I will say that he seems the most normal when it's close to giving him the second dose of pills after 12 hours, which makes me think the dosage is too high?
Shemp- 3yr male Pitt/boxer
1st seizure 7/25/14
Last seizure 10/4/14

scratch
Posts: 6
Joined: Tue Aug 12, 2014 2:39 pm

Re: New member with questions about Zonisamide

Post by scratch » Mon Oct 13, 2014 5:46 pm

I also have a 3 year old epileptic bull terrier named CB. He's been off daily meds for about 7 months now. I still deal with his seizure cycle which typically occurs once a month with clusters than can last up to 24 hours after initial onset. He did go 6 weeks without any seizure activity on his last occurrence with approx 5 GM over a 10 hour period. I decided against daily meds because of the nasty side effects and he did not respond to PB treatment. I can say in our case there have been advantages to not medicating him daily. The biggest is that he is healthy and happy 29 days out of the month. I can tell you within a day or two when he is nearing his threshold do to behavior changes in him and the odor of his breath. At that time, I will give him an inhibitor to tap him down for a day or two. Medical cannabis works best for us to delay onset or break his cluster cycles. My vet wanted to try Zonisamide as a stand alone in lieu of PB but I wanted to see how his disease manifested itself over time.

CJoyner
Posts: 7
Joined: Mon Oct 13, 2014 7:54 am
Location: Manassas VA

Re: New member with questions about Zonisamide

Post by CJoyner » Mon Oct 13, 2014 6:26 pm

Wow! I have so many questions for you! Is canibus the only thing you use once he has the seizures? How do you administer it? Edibles?
I'm afraid a vet will advise me against this, but I hate medicating my dog. If I knew that the seizures would only happen like in CB's case I would take him off immediatly. I just don't know how we determine this.
I do have him scheduled with a vet appointment on Saturday. How does your vet feel about this approach?
(This response makes me so happy by the way.)
Shemp- 3yr male Pitt/boxer
1st seizure 7/25/14
Last seizure 10/4/14

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: New member with questions about Zonisamide

Post by cesullivan » Mon Oct 13, 2014 7:16 pm

Hi,
Cali's vet's first drug for her was Zonisamide. Started with 200mg 2xs/day then upped to 400, 2xs/day. Although, it didn't work for her, the vet said they are using it first line because it is working on so many of their seizure dogs and it doesn't have the liver toxicity of some of the other meds. It took 2 years to find Cali's correct combo (16 months seizure free after adding Potassium bromide, and getting rid of all the other meds, and adding back in Phenobarbital).

It took her quite a while to get used to all the meds. She was a stumbing drunk for several months (she was on max levels of 3 meds).

It does get better, give your pup some time.

As far as dosing the pills, mine are labs, so I just put on top of their food and they chow them down. I do have one finky pill taker who locks her jaws and I found the only trick that worked for her. I get a can of wet dog food, good consistency. I line up 6 meatballs. Meatball #3 and 4 contain the pills. I hand her the first meatball, immediately pick up the second, direct to the third and forth and get the pills in and shove in the 5th before she realized she took the pills. And finish off with the 6th and she is fat and happy.

I hope something works.
Chris, Cali, Bandit and Jim
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

MK's mom
Posts: 1708
Joined: Wed Mar 01, 2006 9:48 am
Location: Michigan

Re: New member with questions about Zonisamide

Post by MK's mom » Tue Oct 14, 2014 6:37 am

Please be very careful in taking your dogs off of antiseizure medication. If you have clusterers it's even more dangerous because if you cannot stop those seizures they can go into status and die. Every seizure they have can cause brain damage, too, so even though you hate the side effects of the drugs, the damage from the seizures can be worse.
Nathan
3.5 yo Irish Setter boy
First seizure 7/26/2013
Last seizure 3/24/2014
__________________________________
MK
5 yo Irish Setter boy
First seizure 1/25/06
Last seizure 9/4/2009

Aug 17, 2004- Sept. 22, 2009
May the shamrocks fall softly sweetpea

CJoyner
Posts: 7
Joined: Mon Oct 13, 2014 7:54 am
Location: Manassas VA

Re: New member with questions about Zonisamide

Post by CJoyner » Tue Oct 14, 2014 7:36 am

Oh, I don't plan on taking him off unless my vet was ok with it. It's just nice to get feedback from other people. I would love to treat him holistically. But in reality I know that's probably not an option.
Shemp- 3yr male Pitt/boxer
1st seizure 7/25/14
Last seizure 10/4/14

MK's mom
Posts: 1708
Joined: Wed Mar 01, 2006 9:48 am
Location: Michigan

Re: New member with questions about Zonisamide

Post by MK's mom » Tue Oct 14, 2014 9:42 am

A gal in my office has a dog (a bulldog breed) who was clustering. She's on Pb and KBr, but they were able to get success by lowering those two drugs and using holistic medications, too. They went to a veterinarian who practices western and holistic medicine and she tailored the medicinal regime to their particular dog and so far, no seizures in two years. I will take my boy there if he starts seizing again, it's worth the try.

Some dogs are refractory to their meds, I had another epi boy like that and no matter what we tried it didn't work for very long. Pneumonia took him though, it wasn't the epilepsy although I strongly believe his medication played a major role.
Nathan
3.5 yo Irish Setter boy
First seizure 7/26/2013
Last seizure 3/24/2014
__________________________________
MK
5 yo Irish Setter boy
First seizure 1/25/06
Last seizure 9/4/2009

Aug 17, 2004- Sept. 22, 2009
May the shamrocks fall softly sweetpea

scratch
Posts: 6
Joined: Tue Aug 12, 2014 2:39 pm

Re: New member with questions about Zonisamide

Post by scratch » Tue Oct 14, 2014 12:13 pm

CJoyner wrote:Wow! I have so many questions for you! Is canibus the only thing you use once he has the seizures? How do you administer it? Edibles?
I'm afraid a vet will advise me against this, but I hate medicating my dog. If I knew that the seizures would only happen like in CB's case I would take him off immediatly. I just don't know how we determine this.
I do have him scheduled with a vet appointment on Saturday. How does your vet feel about this approach?
(This response makes me so happy by the way.)
Some background info on my dog. He started clustering three months after his first GM and prior to this only had one seizure occuring monthly before his first cluster event. I took him to the vet and they did all the requisite blood panels to diagnose him with idiopathic epilepsy. He was put on PB 65mg x 2 daily after an overnite E/R visit after his first cluster episode. He did not achieve any seizure control under these meds and we had to deal with a host of the nasty side effects of the medication. The vet recommended that we try Zonisamide as a stand alone daily med and I decided to step back from all daily meds at this time after weening him off the PB. The philosophy of sedating a canine 24/7 with the hope of gaining some form of seizure control did not seem to be the most enlightened approach to managing what was a monthly event in my case. He has been off daily pharma meds for six months now and just went six weeks without any episodes. The number of his seizures was down and the duration of seizures from first to last was cut in half.

Medical cannabis is now my go to cluster buster. I typically use .40 gram per five hour interval until the clusters have stopped. That is roughly the size of a marble of dried flower. I crush up the bud and put in on a quarter slice of bread with peanut butter on it. I only medicate him when I see the warning signs that a seizure is near or after onset. I get a great read on this due to behavior changes in him leading up to when he is nearing his seizure threshold. A day or more prior to an event he gets more clingy and will burrow his head under the couch pillows or the pillows on my bed if I am there. He may get a rapid short breathing pattern like he is anxious and his breath always exhibits that seizure smell. He may get some brief facial ticks and/or leg tremors and will always scratch or shake his head more often.

I do not personally use cannabis and the medicine was donated by a friend for trial purposes who has a state approved MMJ card.

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: New member with questions about Zonisamide

Post by cesullivan » Tue Oct 14, 2014 11:08 pm

I also did holistic meds for Cali...while she on the other meds.
The holistic vet prescribed Nervoheel, Neurexan, NutriCalm and some liquid that I don't remember the name of. They mixed it there and I had to keep it in the fridge. Cali took these four holistic meds while taking zonisamide, keppra and phenobarbital (neurologist was okay with it). Nothing worked, cluster seizures every 2 weeks...until we added Potassium bromide and that was Cali's savior.

It's hard to find out which will work for your dog. But I can tell you, with Cali being 16 months seizure free, I'm so happy I stuck with the trying EVERYTHING.

I asked my neuro about cannabis and she said she had clients who used it on their dogs and would swear by it. Her issue was there wasn't enough research and it can be deadly to dogs if they consume too much.

There was a local vet who was researching it after giving to his own cancer dog...but sadly he passed away before I could get more information from him.

Chris
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

MK's mom
Posts: 1708
Joined: Wed Mar 01, 2006 9:48 am
Location: Michigan

Re: New member with questions about Zonisamide

Post by MK's mom » Wed Oct 15, 2014 6:35 am

Chris,

That's great that your kid has gotten SIXTEEN months seizure free especially after being a clusterer! My boy is at nearly 7 months and although I'm keenly aware that his streak can break, reading your post has given me such hope. It's so sad how many of the pups out there never get a reprieve, wish it was easier to find that magic dosage for each one of them.
Nathan
3.5 yo Irish Setter boy
First seizure 7/26/2013
Last seizure 3/24/2014
__________________________________
MK
5 yo Irish Setter boy
First seizure 1/25/06
Last seizure 9/4/2009

Aug 17, 2004- Sept. 22, 2009
May the shamrocks fall softly sweetpea

CJoyner
Posts: 7
Joined: Mon Oct 13, 2014 7:54 am
Location: Manassas VA

Re: New member with questions about Zonisamide

Post by CJoyner » Wed Oct 15, 2014 6:45 am

Since I'm new to all this. Does clustering mean multiple seizures in a day? Or multiple one after another. Shemp had 6 in a day, does this mean clustering?
It will be 2 weeks since his last seizure on Saturday. I have so many questions on where I am with this. Is not having a seizure in two weeks a good indicator that zonisamide might be the drug for him? Shemp is a very high anxiety/stressed dog. I get worried about him barking at other dogs at the window and stressing himself out that it might trigger another one. But I think I'm just being paranoid.
On a side note if my fiancé straddles him, holds his head and we throw the three pills in and I throw some water into his mouth quickly we get the pills down. It feels a bit like waterboarding, and we get wet, but it's the quickest way so far. He finds them in any food I put them in. Or chews them out of the pill pockets. I have yet to try the meatball trick....
I can't tell you how nice it is to just be able to talk about it with other people though. Thank you.
Shemp- 3yr male Pitt/boxer
1st seizure 7/25/14
Last seizure 10/4/14

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