Are these symptoms of idiopathic epilepsy or brain tumor?

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Marley's Dad
Posts: 8
Joined: Sun Sep 08, 2013 10:00 pm

Are these symptoms of idiopathic epilepsy or brain tumor?

Post by Marley's Dad » Mon Sep 09, 2013 8:23 pm

Hi all,
I’ve considered making this post for the last several months, but I feel compelled by anxiety and uncertainty to seek the help of this community. We have two dogs. Our younger dog, Marley, has had a rough last few years. He turned six on July 14, so he’s older than most others diagnosed. He was diagnosed with Addison’s Disease (an endocrine disorder) in May 2011. In June 2011 he survived emergency surgery for bloat. Unfortunately, in June of this year he suffered his first seizure. As this freaked my wife and me out, I took him to the emergency vet, but as is common they noted no neurological deficits on his examination. They raised the possibility of a full neuro workup with us, but at a quote of $2000, on top of the $200 dollars a month we spend on treating his Addison’s, we just couldn’t afford it.

To rule out other causes of epilepsy (such as tick-borne diseases), our vet gave him a round of doxycycline while also beginning therapy with Phenobarbital. After his doxycycline interval ended we began to taper his dose of Phenobarbital to try and eliminate the variables. Unfortunately, he seized a few days after reducing him from 1 grain to ½ grain. As Marley is a large dog (93 lbs), we were on the low side of his dose, so we were told that if he seized to increase his dose by a half grain. Eventually we had him up to two grains, and it seemed like there was mild control of his seizures. However, upon running his first Phenobarb level we found that his serum concentration was well within therapeutic levels, but his liver enzymes were very high. This is of special importance for Addison’s dogs, as steroid therapy is hard on their liver.

Our vet also told us that the neurologist at the Vet school thought that Marley may have a brain tumor given his age of presentation. I spent much of the next week researching alternative treatments that were similarly affordable to Phenobarbital, aware of the fact that the MRI still wasn’t a reasonable financial alternative. Eventually I found a compounding pharmacy in town that sells generic Keppra at an amazing rate—90 one-gram pills for $45. We started Marley on Keppra on 8/16. He had few noticeable side effects, and went 12 days on Keppra before his first seizure. That day he had two. Yesterday (9/7) he had two more, and this morning, at 1:30 and 5:30 he had two more.

I’ve tried to gird myself against the possibility that he may have a brain tumor and doesn’t have much time left, but I’m also not sure what I know and what I don’t know and how representative his symptoms are of idiopathic epilepsy, if much at all. The more I read about the symptoms of brain tumors and idiopathic epilepsy the more uncertain I am.
I’m hoping that some members in this community could let me know how common these symptoms are:

First, seizure frequency: Marley’s first seizure was June 3. The most recent was 9/7. He has had 18 total seizures in a little more than three months. The longest gap was 19 days. He’s had five days with multiple seizures, including the last three days he’s seized on (8/14, 8/28, 9/7, 9/9) of which he has seized twice each day. He’s never had more than two seizures in a single day.

Time of Seizures: All of Marley’s seizures have occurred between 9:00 pm and 5:30 am. He is always sleeping before a seizure.
Length: Marley’s seizures typically last 45 seconds to a minute. He often loses control of his bladder, but has always kept bowel control.

After seizing Marley becomes very anxious and acts ravenously hungry. I’ve had to stack several hardcover Norton Anthologies on top of our trash can to keep him out, and often that doesn’t work. The post-ictal phase usually lasts 45 minutes before he finally settles down.

Hunger and Thirst: Marley is far hungrier and thirstier than in the past, even though we’ve tapered his Phenobarb from 125.6x2 to 32.4x1 Over the last three weeks.

Behavior: He is more anxious in the past, but it’s generally late at night, and I find often related to a desire to eat-drink. He is not any more aggressive.

As you can tell, I’m worried. I wish I was in a better financial situation to know. I don’t want him to suffer for a day longer than necessary if he has a brain tumor, but I also don’t want to risk ending his life if it’s a condition we can manage by upping meds or realizing how common his symptoms are.

Thank you greatly for any and all replies.

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Kipsmom » Mon Sep 09, 2013 9:06 pm

Hi - so sorry you and Marley are having such a rough go.

I know $2000 is a lot of money for anyone to pay for the full neurological work up. We did decide to do it, just for the peace of mind in knowing what we WEREN'T dealing with. It's certainly a personal financial decision, but I just thought I would mention that we did it.

Two things to also mention. I noticed that the phenobarb reduction was pretty rapid, and that's understandable given the liver issues Marley has. We had a different reason to have to withdraw phenobarb quickly as well, and our dog Kip had multiple seizures over a period of a week from that withdrawal. Perhaps Marley will "settle down" after his body recovers from the fast phenobarb reduction? Our dog was given Keppra as a replacement for the phenobarb, and although it is a fairly successful choice for many, we really never thought it did much at all for Kip. Did your neurologist suggest any other drugs you might try, like Zonisamide or potassium bromide? Takes a long time (months) to get the bromide to be effective, but the Zonisamide is often used when you need quicker control.

The other thing is the hunger...I would hope that will get better with the removal of phenobarb. Maybe it will subside as the phenobarb leaves Marley's system. That was the thing I hated most about phenobarb with our pup - he seemed SO hungry all the time, and I always felt cruel - he often carried his stainless steel bowl around the house in his mouth!

I wish you the best with Marley. Keep us posted. Sorry this probably was not much help, but you never know when someone will make a comment that hits home.
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Chris Douglas » Mon Sep 09, 2013 10:26 pm

Hi Marley's Dad,

sorry to hear about Marley ... and everything y'all have been through ..

while I can't speak to the med's he's on or the Addison's Disease &/or liver enzymes ... I can tell you that even though my Molly is only on Keppra and valium that every since her first seizure Aug. of last year she (27 lbs.) has had the appetite of an elephant and is now totally fixated on anything she can eat ...

sits staring endlessly at the top of the frig where all the dog food/treats are now placed, goes to kitchen by herself and will stand on hind legs, hoppin' around to keep balance, while her nose is pointed straight up to the frig. top ... sniffing'

stand's with front feet on counter scoping out the counter top, hopping along the counter from one end to the other with her head tilted on it's side up over the top edge ... nose sniffing so hard I can hear it from the other room ...

stands up against the back fence trying to figure out if she can jump the fence where the garbage can is on the other side of the fence ...

1st time ever I caught her yesterday on top of kitchen table where there was a chair that hadn't been pushed in ... "my bad" ... :oops: ... these things she does never used to be a problem ...

I tooo faced that dilemma of poss. brain tumor and the cost of finding out if it is ... for what it's worth ... I didn't find out ... I just decided that if it was a brain tumor then we would know in time, on it's own, when the symptoms of a brain tumor, if that's what she has, become more obivious ... because either way I'd never be able to afford to do anything about it anywayzzz ...

if you find the right combo of meds. and the right dosing ... this could all be like some kinda "bad nightmare in the past" ...

Many Blessing to y'all and Marley ...

Chris and Molly
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Marley's Dad
Posts: 8
Joined: Sun Sep 08, 2013 10:00 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Marley's Dad » Mon Sep 09, 2013 10:45 pm

Thank you for the courteous reply. You are right that it was a rather rapid wean, and I'm wondering if that may be part of the reason behind the seizures, but if he is suffering withdrawal from the PB, I would imagine that his hunger and thirst would drop and it hasn't. I fear a tumor, sometimes so much I can barely bring myself to say or type it. He had another seizure about an hour ago. A focal seizure that progressed into a full grand mal seizure.

We've never seen a neurologist for a full workup. We actually live in Columbia, the site of MU's vet hospital, and our vet has been in contact with the attending neurologists about Marley's case. In lieu of an MRI, we have wondered what benefits a neuro exam would have diagnostically. Could it tell us much at all (I'm asking rhetorically, not you specifically)? Marley already has his electrolytes and blood chemistry checked on a regular basis to manage his Addison's.

I was ready to pick up a script for Zonisamide last month when I found out I could get Keppra so cheaply. Given that Zonisamide caused some levels of liver toxicity and lowered PB's effectiveness while PB hurt Zonisamide, I thought Keppra was a better alternative, but wasn't going to go for it at $400/month. KBr didn't seem like a viable alternative given how long it takes to reach a steady state.

I made an appointment for a neurological workup next Monday, but I'm not sure if I can continue watching him seize twice a day. I upped his Keppra to 1500 tonight. I don't know what else to do. That is about 35 mgs/kg, a high dose, but not obscene.

Marley's Dad
Posts: 8
Joined: Sun Sep 08, 2013 10:00 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Marley's Dad » Mon Sep 09, 2013 10:49 pm

Chris,

Thank you for the response. Molly's hunger, although I'm sure quite frustrating for you, is a site of possible hope for us. It's good to know that she's doing well and is nearing a month since her last episode. Resources such as this are invaluable, as they provide perspective absent from daily experience.

Well Wishes.

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Chris Douglas » Mon Sep 09, 2013 10:52 pm

hi again ...

I know this is a little "off the cuff' .... just wondering have you considered a valium (need a prescription for this) before bedtime ... or ...

melatonin(no prescription needed) before bedtime: http://www.canine-epilepsy-guardian-ang ... atonin.htm

either ... or I could say both .... are helpful for the nighttime seizures ...

post edited: also forgot to mention this 27 lb dog now has the thirst of a thousand deserts ... :lol: ...: only did this on a "day-off" from work when I could leave back door open for her to come and go as she pleased ... I filled her new 32 oz.stainless steel water dish and watched her empty it ... thinking that was more than even I could drink I went ahead and refilled it ... needless to say I not only had to pull her off it but then had to pick it up and place it on the counter to keep her from emptying it again ... now I keep watch on her and the water dish since she's soooo fixated on food and water ... :lol:
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

SpencerBhumi
Posts: 228
Joined: Sat Feb 11, 2012 9:25 am
Location: South Australia

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by SpencerBhumi » Tue Sep 10, 2013 12:11 am

Hi Marley’s Dad,

I respond respectfully acknowledging the difficulty that the Addison’s disease adds to your circumstances.

What you have described sounds a lot like idiopathic epilepsy.

If Marley had a brain tumour you might expect (and could look for) other frequent and regular neurological changes. Yes, a fit might be the first incident/indicator of a tumour but in due course other changes may become obvious with or without seizures. After so many fits I would expect to see other changes by now if a tumour was present. These changes need to be considered outside of the fitting episode as pre & post ictal behaviour can alter things for that period. A bad cluster and associated drugs to break the cluster can also cause weeks of altered performance.

Depending on the type and location of the brain tumour, as it grows and puts pressure on the surrounding brain tissue the damage to those surrounding brain cells will start to manifest the peculiar symptoms – behaviour, performance, perception, coordination etc.

Personality change (difficult to gauge with anti epileptic medication on board but significant and constant changes may be a clue, such as confusion/aggression/forgetfulness – not associated with post ictal). Mobility changes affecting half a side of the body – one sided blindness/deafness, one sided weakness as opposed to the hind leg weakness associated with anti epileptic medication. Eating/drinking/swallowing difficulties (performance of swallowing V interest in eating). These are just a few examples of altered affects of brain function.

Also with a tumour, those peculiar signs & symptoms that you can identify will probably increase in severity & frequency (with or without fitting) as the tumour grows. The anti epileptic drugs we use are aimed at stopping fitting and hopefully are working. The other abnormal symptoms may continue to develop.

Without other diseases & complications, this disease sucks and is difficult to manage in its own right. It can take a long time to juggle anti epileptic drugs at best - the right combination and the right dose of each. I see that you are only a few months into this predicament so there will be so many variables to make it all the more confusing for you.

Good luck with the neuro visit. Ask them for a more comprehensive list of signs & symptoms to look for with a tumour.

Ask your vet about supplementing with Milk Thistle for liver regeneration (with respect to Addison’s management). (I trust thyroid levels are being monitored subject to Addison’s as well as for epilepsy management).

Our thoughts are with you. Please keep us updated with your progress.

Trevor & Spencer
Grateful for the good days, weeks (months).

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Gentle Jacob's mom » Tue Sep 10, 2013 6:27 am

Hi,
I'm really sorry that on top of Addison's you have to deal with seizures. One or the other is hard enough. While it's true that when a dog starts seizing after the age of six there is a possibility of a brain tumor, there are many that don't have them. Unfortunately the only thing you can do is observe for now. We couldn't afford an MRI either, but Jake was two when he started seizing, so the vet we had at the time didn't think it was necessary either. I know of someone whose dog starting seizing at 7 and the vet suspected a tumor. The dog lived a good life for another six years. I think no matter what, the words brain tumor scares all of us that have epi dogs.
Is the Keppra from the compounding pharmacy commercial generic Keppra or compounded? If it's compounded please proceed with caution. We went through hell back in June because of it, and didn't know until then that compounded Keppra is a lot more unpredictable that commercial Keppra in that it leaves the system at very different time frames.
As far as hunger after anti seizure meds, I could write a book. It was a struggle to get Jake to eat before he started seizing. He was very picky. I miss those days. For the last five years his appetite has been out of control. He's had four (yes, four) surgeries to remove everything from the end of a corn cob to a catnip toy from his intestines. After surgery two, we started using a muzzle for him every time he went outside, but he still found a way to ingest a stick. The idea of using a muzzle had me in tears for a week, but I finally realized it was keeping him safe, and he really doesn't care if he has it on or not. Needless to say we've refinanced a few times...
Everyone here is right, the first stages of finding the right dosing is very hard. Finding out that with all the studies and opinions no one really knows what to do can make your head spin. Just get the best team you can find to help, and come here. The owners of epileptic dogs often know more than vets do about the reality of day to day life with this.
I would ask your vet for rectal valium for Marley also.

Take Care,
Lynne

Marley's Dad
Posts: 8
Joined: Sun Sep 08, 2013 10:00 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Marley's Dad » Tue Sep 10, 2013 12:30 pm

Thanks again to everyone who took the time to reply and offer advice. I'll try to address all of the responses in some regard.

I was going to add milk thistle when I considered Zonisamide, but as Marley's Addison's is well controlled, I was comfortable with weaning his PB dose, as I figured his liver enzymes would drop back to acceptable levels once he stopped taking it. The most elevated of the enzymes is alkaline phosphatase, for what it's worth.

One of the reasons why I was hopeful up until a few days ago that it wasn't a brain tumor is because, despite bouts of occasional clumsiness, which he's always had, he seems pretty well coordinated. He likes to play catch with a Frisbee and can still track it down and grab it. By no means is that a randomized, double blind study, but such behaviors left me hopeful that it was simply epilepsy. Then again, maybe I'm hoping rather than thinking.

Re: Valium: I had considered it, but given that Marley's seizures never exceeded two minutes, after the first week I wasn't overly concerned about status epilepticus. I suppose his recent episodes meet the criteria for clustering, but aside from breaking a cluster/protracted seizure, does Valium have any other benefit, and how much do you know to give to break a cluster?

Re: Keppra: The compounding pharmacy can compound medications, but the Keppra he takes is a one gram tablet. He takes the generic (Levetiracetam). I haven't asked them the purity of the tablet, as I've read that can vary according to supplier. I probably should

cleaver8
Posts: 6
Joined: Sat Feb 09, 2013 9:36 am

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by cleaver8 » Tue Sep 10, 2013 3:50 pm

Dear Marley's Dad,
I can tell how much you love your dog from your letter. It's also clear that you are trying to do your very best for him. The most I can offer you is another way to look at your problem. We also struggled with the decision to spend so much for a full neurological exam. What helped us was thinking about how much it would cost for psychological counseling to help with the anxiety and guilt if we did not proceed. Have you considered asking your neurologist for a long term payment plan? I would never criticize your decision, just wanted to suggest another way to look at your situation. Cleaver8

Marley's Dad
Posts: 8
Joined: Sun Sep 08, 2013 10:00 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Marley's Dad » Tue Sep 10, 2013 8:53 pm

Cleaver,

Payment plans are definitely something I'd considered. The biggest issue is that my wife and I have different points of view on the issue. I would sell myself five times over to pay for anything he'd need; her view is different, perhaps more practical. We have two little ones, one of whom has special needs. The future cost of her therapies when taken in conjunction with the potential financial increase of caring for Marley has her worried. I understand, but I don't agree, as I am much more of a bleeding heart.

Furthermore, given that epilepsy is a diagnosis of exclusion and I would never, even with unlimited resources, put Marley through radiation, surgery, and/or chemotherapy, I see little point in an MRI. I would much rather discuss treatment options, including medication combinations and appropriate dosages with the neurologists, but the person I spoke with on the phone when setting up the appointment wasn't as helpful as I desired, so I'm going to stop by the vet school tomorrow to see if I can speak with a neurologist directly.

Thanks for the advice regardless

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

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by cesullivan » Wed Sep 11, 2013 10:26 am

When I went to the neurologist, $250, which included meds, she did some basic neurological tests. Pushing her nose one way, then the other way, looking for consistency. Then pickup up both of her left legs and wheelbarrowing her across the room and then doing both right legs, looking to see if she had enough balance to jump across the room (which she did). Then she had her put her paws up on the counter and see if she could stand on her back legs. She also did a few other diagnostic moves that I can't remember.

After those tests, she said, you could do an MRI, but I have not seen any indication that she has any other neurological defect suggesting anything wrong with her brain other than epilepsy. A year later, Cali was still having bad seizures and we saw the neurologist again and I asked about the MRI, the neurologist said, if there was a brain tumor, she would have significant neurological defect and/or would probably not be here.

For the Keppra or other seizure meds, if you have a Costco around, call them up and check pricing, let them know it is for a dog, they have great pricing for the uninsured (puppies included). I believe you don't need to be a member to get prescriptions filled.

My other dog had elevated liver enzymes from Rimadyl. The vet suggested Denamarin and after 30 days we got her liver back in line.

And I agree on the rapid reduction of Pheno potentially triggering seizures. My neuro suggested a 25% reduction every 2 weeks.

Oh, and everything you mentioned is very familiar to my epileptic pup.

Chris & Cali
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

Marley's Dad
Posts: 8
Joined: Sun Sep 08, 2013 10:00 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Marley's Dad » Mon Sep 16, 2013 8:55 pm

I'm happy to say that Marley's had a really good week. He hasn't had a seizure since Monday night. Today he had a consultation with the neurologists at the vet school. They did a standard neuro work up on him--testing cranial nerves, gait, response to stimuli, eye movements, and so on, and he showed no deficits. They can't give me a definitive diagnosis absent an MRI, bile assay, CSF tap, and myriad of other tests, but it is encouraging that since his rapid pheno taper has stopped so have his seizures.

Hopefully all stays quiet and uneventful.

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Chris Douglas » Mon Sep 16, 2013 10:59 pm

yaaaaaay Marley!!! ... good to hear all is well and hope it stays that way ... :D :D :D :D

Chris and Molly
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Marley's Dad
Posts: 8
Joined: Sun Sep 08, 2013 10:00 pm

Re: Are these symptoms of idiopathic epilepsy or brain tumor

Post by Marley's Dad » Fri Sep 20, 2013 6:56 pm

Marley had a grand mal seizure at about 10:20 last night. That marked ten days from his previous seizure. The question I foolishly forgot to ask the neurologist on Monday was, "What constitutes control of his epilepsy?" If he has one seizure every 10-14 days, but seems fine other than the 45 minute post-ictal period afterwards, is that controlled? Does he need to have his medication upped if he's having a seizure every 10-14 days? Is it once a month, once every sixty days, longer? And would you continue to up meds if he appeared fine other than the isolated episode itself and the post-ictal period?

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