My story ... so far

Share your story, questions, concerns.

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

Re: My story ... so far

Post by Chris Douglas » Mon Nov 18, 2013 2:07 am

here's something kinda strange and was wondering if anyone else has ever seen this ...

so when she seized yesterday I gave Molly two 5 mg's tablets of valium orally when she woke up and waited ... she continued to be hyper trotting nonstop ... after an hour I gave her one more 5 mg valium orally and waited ... another hour goes by and she's getting worse, more hyper, faster trotting so I gave her another 5 mg valium ... now she's had four 5 mg. tablets of valium in about 2 hours ... and still she continues to fast trot non-stop, not slowing down except to run into things and scare herself ... not drowsy, not droopy, not drunken, not slowing down whatsoever but getting worse and worse ... how can this be? ... 20 mg valium orally for a 27 lb dog seems like there should be something happening besides getting more hyper physically and more paranoid of everything around her ... :shock: ... I think if I took 20 mg of valium my lights would probably go out for a nap ...

finally had to put her in her cage and leave for work a little early cause it was getting so bad watching her and not being able to settle her down ...

anyone ever see valium have the opposite effect than what it should?

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

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

Re: My story ... so far

Post by Chris Douglas » Fri Nov 29, 2013 3:49 am

Hi all,

been a bad couple days for us ... started weds night with a seizure between 7 and 10 pm while I was at work ... came home to "suspected" seizure dog ... suspected because since she started generic keppra the seizures are soooo much milder ... then 12:52 am Thurs. morning a 2nd seizure ... and again at 7:01 am a 3rd seizure(at this point I gave her a 250 mg regular keppra I still had left over and her generic keppra timing is noon and midnight so it was kinda in the middle between dosing's of generic keppra) ... post-ictal trotting, only 1/2 blind, skittish, and scaring herself with the "suddenly seeing" thing's when she get's close to it or bump's into it ...

soooo much milder and not cluster's stacked on top of each other back to back seizures ... single and mild is sooo much better even if the span between episode's is only 11 days on generic keppra instead of 14 days on regular keppra ... not to mention so much better as far as giving it to her every 12 hours instead of every 8 hours ...

now I'm wondering if I should talk to the vet about "adding" Zonisamide to her keppra regiment ... if this added drug would help spread out the span between episodes ... or is there another option drug beside's Zonisamide without having to go down the pheno road which we're trying our best to stay off of ...

any thoughts or idea's would be greatly appreciated ... thanks in advance ...

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

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

Re: My story ... so far

Post by Chris Douglas » Fri Dec 06, 2013 1:40 am

hi,

we've added Zonisamide 50 mg twice daily to the keppra xr ... mostly cause the every 2 week seizures went to about every 11 days on Keppra xr ... so I'm hoping that somehow adding the zonisamide will stretch out the time between episodes ... here's hoping anywayzzz ...

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

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

Re: My story ... so far

Post by ShilohsMom » Mon Dec 09, 2013 9:48 am

Hoping that adding the Zonisamide will help. Let me know how it works for you. Shiloh was taken off the PB cause his liver started failing and is only on Keppra which doesn't really control the seizures as much as I would like. He usually has 3-4 a week at this point so may need to add a secondary med as well. Man, I hate this disease! Everything is so hit and miss, or med(s) will work for a while and then they start having more seizures. Hope the Zonisamide will do wonders for Molly.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: My story ... so far

Post by Chris Douglas » Mon Dec 09, 2013 3:49 pm

Hi ShilohsMom,

Molly's been on zonisamide as an "add-on" to her keppra xr since 12/5 ... just a few days before she shoulda had her next round of seizures on 12/8 ... so as of today 12/9 she's past her "due date" ... and yup, I'm "knocking wood and crossing everything I can" ... even if later today we' end up going thru the nightmare seizure's I'll still take the extra day without seizures and say zonisamide helped ... *shakin' head* ... just stuck me that it seems strange to me now how weird life has become when I sit here thinking, "please just give us even 1 extra day" and that's my measure of success that even 1 extra day can mean sooo much ...

have you and shiloh tried milk thistle to help the liver ... even after being takin' off the pb it would help bring back his liver I think ... here's hoping you guys have some measure of success ... weekly seizures really suxxxx let me know how it goes for y'all

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

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

Re: My story ... so far

Post by ShilohsMom » Tue Dec 10, 2013 9:32 am

I totally understand how one extra day can be a success. For the past month or so Shiloh's been having seizures at the beginning of the week. He hasn't had one since last Tuesday and I'm so happy about that. His last one though felt a lot more "violent" if that makes sense. He's always had grand mal but the last one seemed like it was a lot harder on him and his muscles were even more drawn up and tense. He is on milk thistle to aid in his liver function and am looking forward to seeing how his bloodwork comes back on the 23rd.

Praying for you all and Molly that she'll continue to have "one more day" without a seizure.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: My story ... so far

Post by Chris Douglas » Tue Dec 10, 2013 6:44 pm

Hi ShilohsMom,

When you find our how Shiloh's bloodwork comes back please post it ... sooner or later we'll end up going down the PB/KBR road even though we're trying our best to stay offa it and that kinda info can help sooo many ...

I can understand how one seizure can be more violent than other's .... just about the time I think it can't get any worse it proves me wrong ... even now as I think back and remember "the bad" I realize that this one was really bad in a certain way and another one was bad in a different way ... one more violent, one more vocal, another one massive number's back to back without waking up in between, ... so many different way's it is soooo bad ...

"For the past month or so Shiloh's been having seizures at the beginning of the week. He hasn't had one since last Tuesday ... " ... does that mean you past the "due-date" for a seizure? ... here's hoping that's what it means for you and Shiloh! woo hoo !!!!

we're holding our breath to make it thru today for a 2 day past "due-date" ... and it's my only day per week so that would be wonderful for both of us ...

Prayers' to you and Shiloh for more days past the 1st of the week timing ... ♥

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

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

Re: My story ... so far

Post by ShilohsMom » Wed Dec 11, 2013 4:24 pm

Chris,

Will definitely let you know how the next test comes back. I'm very optimistic considering the last results were heading in the right direction.

I really hated that he was on PB. When he was first put on it, it was my biggest fear that his liver would fail, and sure enough, 3 years later...... The good thing is that he gets his blood work done like clockwork to keep an eye on everything so if there is a problem we can catch it early. Plus the liver is amazing in that it has the ability to repair itself in some cases.

I just hate the fact that it's hard to tell if the medications are really helping when your dog is still having seizures. Not to mention that it just seems like there isn't a clear cut treatment on what works. It's so unpredictable and I always worry about giving him medication long term and the effect it has on him internally.

Yep, I would say Shiloh is "past due" for a seizure. I rejoice in every seizure free day, which I'm sure you do as well. Not sure about you, but also feel like I don't get any down time. I'm always waiting for the next one, each time he's laying by the wall and scrapes his nails, if he looks weird, when I'm at work I worry if he'll have one and hurt himself, etc. I do suspect that a seizure caused the disk in his back to be damaged, so feel the concern is valid.

How is Molly today? Is she still seizure free?

Prayers for you both as well.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: My story ... so far

Post by Chris Douglas » Thu Dec 12, 2013 3:06 am

Hi ShilohsMom,

Woo Hoo for you and Shiloh!!! ... ♥

another day seizure free here tooo ... our next bench mark is getting thru today (Thurs. 12th) ... that's the every 2 week mark she used to have while on regular keppra (before we switch to keppra xr and it went to every 10/11 days) ... and even before that since Dec. of last year she's never made it past the 2 week mark give or take a day ...

hmmm ... down time ... what's that, lol ...like you I'm always waiting, watching, and counting the days, ... listening in my sleep for the tell-tale sounds, having nightmares evolving the worst of the seizures she's already had in the past, working and worrying while not at home to help her or wondering what I'll find when I get home from work, waiting to see if when she stopped walking and stare's into space or sit's down and look's somewhere out there if there's more to come, ... or when while sitting there she slowly bends her head around to the side if she's gonna fall over and seize only to laugh at myself when she bring's her hind foot up to scratch behind her ear ... :D

and I need to thank you for somewhere in this site some time ago I read where you posted about how you felt Shiloh's back had gotten damage during a seizure, around the time of reading that Molly who is kept in a wired cage had had a seizure while I wasn't home and ended up with a wire mark cut into the top of the bridge of her nose half way between her eyes and nose. Those 2 events convinced me to find a way to get a airline crate for her. There's not near enough room in the airline crate for her to stretch out like she does while having a seizure on the open floor but now I'm not as concerned about the wire crate cutting into her or her getting a leg caught in-between the wire's and breaking a leg. So thanks for posting about the possible back damage during a seizure that got me to thinkin' ... about all the "what if's" ...

here's to more seizure free days for all of us ...

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

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

Re: My story ... so far

Post by Chris Douglas » Thu Dec 12, 2013 9:16 am

well,b so much for that, Molly had a series of 4 back to back seizure's and we're in the middle of the pacing back and forth thru the house post-ictal phase as I write this gonna be a long day after a really short night ...uugh
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

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

Re: My story ... so far

Post by ShilohsMom » Thu Dec 12, 2013 3:22 pm

Oh, I'm so sorry that Molly is having seizures and so many of them. It's so incredibly nerve-wracking and scary. My heart goes out to you right now.

Unfortunately Shiloh has had several injuries, mostly minor due to his seizures. He likes to sleep in the bathroom at night and he has hit his mouth on the toilet. He's had to have one tooth removed because he broke it at the gum line, several other teeth have been chipped. Even though I get to him as fast as I can, I still feel horrible that I didn't get there quick enough. I've taken the thing off the front door that keeps it from hitting the wall because I'm afraid he'll be laying by the door and poke either his eye or ear. I've tried to look around the house and remove stuff as best as I can that might fall on him if he was in that area, but short of creating a padded room I guess there is always the potential for harm.

Not sure if it would work for you, but instead of a crate would getting a baby gate work to confine her to a room, like a bathroom or utility room so she'd have more space?

I've thought about getting cameras for inside the house so I could monitor him, but right now that's out of my budget. I'll be off for 2 weeks at Christmas and looking forward to being able to be with him more so I can keep a closer eye on him.

Prayers to you both.

ShilohsMom
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: My story ... so far

Post by Chris Douglas » Fri Dec 13, 2013 1:36 am

wow ... what a day and it might not be over yet ... 4 or 5 seizures before I go to work ... another episode during my 1st four hours of work and another episode during my 2nd fours of work ... no telling how bad the episode's were since no one was there ... (my "x" stops in on Molly in the middle of my shift for us and reported she must of had a seizure during the 1st half of my shift and when I got home I could tell she had had another episode during my 2nd half of shift) ... then about 45 minutes after getting home she has 2 back to back seizure's and presently is pacing at the moment ... :(
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

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

Re: My story ... so far

Post by Gentle Jacob's mom » Fri Dec 13, 2013 7:01 am

Hi Chris,
I'm so sorry you and Molly are going through this. What is you vet telling you you're supposed to do about clusters? Didn't you say she knows a neurologist? I can't understand why they wouldn't work with you on this. The"controlled substance" excuse is bull! I can't imagine how this must be for you. Is it possible to give Molly Pb just when she seizes? We give Jake extra Pb after a seizure, but it's part of his daily regimen. I know some have used Keppra only after a seizure to prevent clusters so maybe you could use Pb the same way. That along with Valium might help.
Keep us posted,
Lynne

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

Re: My story ... so far

Post by ShilohsMom » Fri Dec 13, 2013 8:59 am

Chris,

So sorry to hear that you and Molly continued to have to go through this. Hoping today finds you both in a much better place.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: My story ... so far

Post by Chris Douglas » Fri Dec 13, 2013 3:14 pm

hi Lynne and ShilohsMom,

thanks,

the vet says to give her a valium rectally during a seizure, a valium orally if she can swallow safely, and extra regular keppra when she was on the regular keppra (she's on keppra xr now but I gave her a regular keppra at the mid-point between the dosing of keppra xr anyway), or bring her in ...

after seeing all the people here who have valium liquid/gel/suppositories and seeing how common valium suppositories($5.00 each) are prescribed to women for roof collapse I realize the vet has "personal issue's" and her excuse of controlled substance is just that ... an excuse ... Molly and I are at the mercy of not only the demon epilepsy but that of the vet's as well ...

She's not PB ... yet ... so I don't have any ... given time I'm sure she'll be on it

from yesterday 6 am to today right now 1:14 pm ... 14 seizures and counting ... a good nights sleep a distance memory ... and now to go to work ... :cry:

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

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