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Life after epilepsy

Posted: Mon Aug 27, 2018 10:05 pm
by SpencerBhumi
It is a year now since Spencer died. He was the last of our four pets to leave us (all of them within a year) so this last 12 months has been a quiet pet-free recovery for us.

Many years ago my plan was to buy Spencer’s mum after she had weaned her pups.
During our visits Spencer made himself known to us, endearingly invading our hearts, and he came home with us too. Mother & son were a treat to own. At age 4.5 years he developed idiopathic epilepsy and we struggled for another 7 years chasing this disease: in one way or another you all understand what that is like. His breeder, a responsible & caring breeder, was as grieved as us to hear of Spencer’s struggles and she offered to give us a new dog when spencer died.

What do I not miss about having pets (and especially an epi-dog)…? NOT!
Not having to vacuum and mop daily. Not having to wash pet bedding daily. Not being tied to a strict twice daily medication routine. Not refilling the water bucket many times a day. Not handing out thousands of dollars in health care where it could be better enjoyed. Not not-sleeping properly for 7 years and stirring to the slightest suspicious epi-dog noise. Not watching a beautiful creature stumbling around between ‘drugged-up and post ictal’. Not watching over his shoulder for any and every potential trigger that is going to set him back.
Whilst we have had a refreshing break I really have missed the pets!
I do not miss epilepsy for a second but I have not forgotten it. And I have not walked away from it unscathed.

The breeder recently contacted me and offered me another dog that she was unable to keep.
With 5.5yo Hudson rehomed we are now a pet house again! So it is back to vacuuming, feeding, toileting, exercising, training, and all the fun stuff you do with a healthy pet: slobbery kisses, nudging the lead for a walk, faithfully at one’s side at all times, eager to learn new tricks, eager to receive training treats, a couch buddy (…so looking forward to camping and the summer beaches).

Seven years of canine epilepsy with Spencer affected me.
My ears prick at the slightest sound of scrabbling feet (a normal dog just getting up off the floor). I watch patiently at the lightly twitching legs of Hudson dreaming. My slumber is easily disturbed by the humph of a sleeping dog just repositioning himself. I wait patiently for a glazed stare to pass (after the distant sound of a cat fight diminishes). I wonder if this normal dog is actually drinking enough water and why he doesn’t frequently flood the bedding.
I can still vividly see the sad emptiness & longing in Spencer’s face as he swaggered around in his drug induced stupor, with his never satisfied drug induced hunger. His ‘special’ affection & longing for company will always be with me.

My thoughts still go out to all of you epi-dog carers. It grieves me every time I read of a new member coming to join this group, and my memory & feelings are pricked with every lament raised on this forum.
Where I can, I will still try to help you – where I can’t, know that I am keeping you in my prayers.

I would like to publicly acknowledge how much Lynne has helped me over the years. Lynne’s wise & patient replies to us all helped me a great deal, and Lynne continues to inspire me even after the death of our dogs. There are many other members I wish to thank (too many to list) who have also encouraged me but I would like to thank Vivian, Colleen & Eley’s Mom for your good support condolences. (We have not heard from Barb in many years but my appreciation is extended to her too for all of her love and wisdom to us in my early years here).

Epilepsy sucks! This forum is great – it is you members who make it so great! Thank you everyone.
Continue to care for one another and continue to be loving and patient with your epi-dogs.

Grateful for the good days, weeks (months).
In memory of Spencer 7-12-05 – 22-8-17

Re: Life after epilepsy

Posted: Tue Aug 28, 2018 9:09 pm
by jaragr
We are the same way. Every time our Jack is just getting comfy we are watching him like a hawk. Every bump in the night we're listening. A good nights sleep doesn't come very often. This dog is our life - we never leave overnight, we don't take vacations. We have other pets too, so we prefer to be home with them. All the dogs are old, but we cherish every day with them.

Re: Life after epilepsy

Posted: Wed Aug 29, 2018 9:15 am
by GentleJacob's Mom
Hi Trevor,
First thank you so much for your kind words. Everyone here, definitely including you, inspired me and gave the strength to get up every morning and fight for Jake for over 11 years. I will never forget the comfort, guidance and friendships I found here. After Jake died it continued. I don't think most here realize how just coming here and helping when I can has helped me to heal somehow. Maybe it's because it keeps him with me just a little longer.
I knew Jake was slowing down and I knew in my gut this disease most likely was going to take him in the end and I tried to prepare myself as much as I could. But not even I knew the level of grief I was going to face. It has been one of the hardest years of my life without him. I had to focus on our surviving dog Chaco because she fell into a grief I'd never seen in a dog before and we were so afraid we were going to lose her. We've lost animals over the years but I didn't know what to do for her. Little by little she and I and our other furkids learned to exist all over again without Jake and eventually we adopted another dog. Of course our kiddos hated him at first because they were so used to laid back, take it as it comes, Jake. Bodhi was a very very scared, abused dog that needed a home right away so we took the leap. We've had some serious hurdles, but now you would never know he's the same dog. I tell everyone the Tao of Jake is alive and well here.
Like you, every sound, scratch, or tremble alerts me, and when Bodhi doesn't wake up right away, or has dreams I hold my breath. I'm not sure that will ever leave me. I heard something yesterday that really stuck with me. Even when you hit a moment of grief and you feel overwhelmed, like it won't go away, remember it's a moment, and look to those around you to create another one to help pull you through.
I've held onto the fact that Jake doesn't have to fight this disgusting disease anymore, how much he made me a better and stronger person, and I do my very best to honor the very special spirit he was and feel so honored to have had him.
I think of all of you every day and hope so much that sooner rather than later we'll all hear that there's been a breakthrough in canine epilepsy that will take this disease down where it belongs.

My very best to all of you,

Re: Life after epilepsy

Posted: Thu Aug 30, 2018 8:16 am
by ShilohsMom
Oh Spencer, thank you for the kind words and I'd be lying if I said I wasn't wiping a tear (or two) from my eyes. I have always appreciated your sound advice and support. I'm so happy that you have found another dog to love and that will love you. I pray that you will have many happy and healthy years together.

Like you and Lynne, I still have that little part of me that is on guard at the slightest noise or odd behavior. After 2 1/2 years it has become more subtle but it's still there. While I wouldn't wish epilepsy on anyone I do think there were things it taught me and feel that I'm a better doggie mom/person because of it. It taught me to be more patient and understanding. It taught me you can't have too many carpet cleaners :D It taught me to take each good day as a blessing and to appreciate what I do have while I have it. It taught me that I'm much stronger than what I gave myself credit for. It also gave me a new friend and people who I became connected to through our common need to give & receive support. But most of all it taught me a truer meaning of unconditional love.

Re: Life after epilepsy

Posted: Thu Aug 30, 2018 2:55 pm
by xxcesarxx
I read this post, stopped reading only to cry for minutes. I miss my baby, i think about him everyday and I ask God to take care of him, I know he's up there waiting for me.

Re: Life after epilepsy

Posted: Fri Feb 08, 2019 4:36 am
by Orli
Is there life after epilepsy? Yes and no. 1 April 2011 my Pereg had her first GM, Four years to the date on 1 April 2015 she had her last GM and my wonderful vet came at 1am to give her peace. She was only six-years and three-months old.

I could not bear to be without "My little dog, a heartbeat at my feet" [Edith Wharton] so I had - needed another heartbeat, and she was born just a few weeks later. She was named even before I knew she had been born - TIKVA - which means Hope. Hope that the Monster would never come back. Pereg was a rescue puppy of no known origin so there was no way of knowing that epilepsy was in her background.

Tikva is a cross - Dachshund dam and Minpin sire - accidental mating. And both breeds have the Monster as known health problems. She is now three-years and nine-months old, but I still hope and pray that the Monster will never visit her.

But I am still on seizure watch. The slightest sound, even if she moves in her sleep, wakes me at night. Even during the day I am still on seizure watch and my heart leaps, ready to go to her. It is only very recently that I sometimes forget and call her Pereg and not Tikva. And the freezer I bought for Pereg's meat I still call Pereg's freezer although of course what is in it now is for Tikva.

I still use Pereg's picture as my avatar on the dog forum to which I belong. I had a hand-drawn graphic picture of her, done from photographs, which is framed and on my wall. Done in black an white but her special tag "I Have Epilepsy" was drawn in colour, with all details on the back.

None of us can ever forget, of miss, our epi dogs. They were our life as long as they were with us. That alarm clock going off three times a day for Pereg's meds - long thrown out now but those hours are fixed in my mind. 7am - 3pm - 11pm. 65mg Pb TID for a not very big girl. And three-monthly blood tests...

I loved Pereg and I miss her and I am convinced she sent Tikva to me. And oh how I love Tikva, who came to me when she was three-weeks-old and had to be bottle fed every few hours day and night. But just as that alarm clock made sure I gave Pereg her meds [and cleaned up after she had a GM], so Tikva's eep eep when she wanted a bottle, I had a reason to get up each morning.

Maybe what I will say now might help someone. I am old, disabled and wheelchair-bound. But looking after a severely epi dog not only gave me a reason to get up, but a reason for living. And almost before I was able to throw that alarm clock away, Tikva gave me a reason to get up and a reason for living.

Pereg loved life but the Monster took it from her and I know that she is in peace. There was nothing I, or my wonderful Vet, could do to help her any more. And every night when I say my prayers, I remember my beloved epi girl, and pray that the Monster never visits Tikva.

So yes, there is life after epilepsy.


Re: Life after epilepsy

Posted: Fri Feb 08, 2019 6:39 pm
by GentleJacob's Mom
Hi Orli,
I'm so glad you posted. I've thought of you many times and wondered how you are. I remember you and Pereg and how hard you fought for her. I do hope you know you did everything you could for her.
I do share the pain of losing such a special dog. We also have adopted another dog who needed us and he's filled our lives with his goofiness and love but I still miss Jake so much. He was our calm. When the other furkids would get out of control all he had to do was walk into the room and somehow they calmed down. I didn't realize it until after he was gone, but it seems he was helping me out all along. This pain we share comes and goes doesn't it? For some reason for the last few days it's come back again, but I know it will pass and most likely because of something goofy our new pup is doing.
I don't think the sounds of seizures ever leave us, but I have noticed when I wake up and realize that everything is okay, that is when I'm so thankful that Jake doesn't have to fight this anymore.
I'm so happy that your Tikva is bringing you so much joy. You have earned that. I really do understand naming a puppy before you find them. I had a dog named Kiva that I named before I met her. Kiva's are places of worship for Native Americans and the name fit her perfectly.
I do hope you're doing well. Thank you for sharing with us how you are doing and I hope you and Tikva continue to have a happy life together.
Please take care,

Re: Life after epilepsy

Posted: Wed Mar 13, 2019 6:52 am
by Chris Douglas
I feel a lil' like a stalker cause I only come here occasionally and never post but this topic "life after epilepsy" really got my attention. Before I get into that I'd like to give a "shout-out" to Ellen, Collen, Lynne, Cynthia, Trevor, and anyone else who I'm sure I've forgotten the names of who all were instrumental in helping me to keep any resemblance of sanity during my life with and after epilepsy so very long ago.
Alrighty then the subject of life after. I always thought of life after as a time period after you start to deal with an issue and are still dealing with it. Like epilepsy for instance once it begins and we're trying our best to deal with it. This can go on for years ... and years. Some of you have or will deal with it for a lot longer than I did. Mine only lasted a couple of years. Most of which in the beginning was unfortunately before I found this wonderful site and the many helping, understanding, and patient members here. For me at this point in my life I've come to learn what ShilohsMom said, "It taught me to be more patient and understanding. It taught me you can't have too many carpet cleaners :D It taught me to take each good day as a blessing and to appreciate what I do have while I have it. It taught me that I'm much stronger than what I gave myself credit for." This too is also apart of "life after" because life after is also the time after you are no longer dealing with epilepsy. This day and all the many days, years, maybe decades "after" to come.
It's been five years now for me during my "life after" epilepsy and what I have also learned is that my experiences of "life during" epilepsy will never leave me. Some good ... some bad. Good like what ShilohsMom mentioned ... and bad like p.t.s.d.. When "life after" handed me more incidences I was forced to seek help to deal with that. That's when I learned that while p.t.s.d. can be cause by a single incident in our life more often than not it's an accumulation of trauma events thru out our lifetime. Thankfully that's where the "It taught me that I'm much stronger than what I gave myself credit for." comes in.
I would just close this out by saying to all those out there dealing with "life after while still dealing with" epilepsy, ... You can do this ... You are stronger than you think you are and the members of this site will help you get thru it!

Re: Life after epilepsy

Posted: Thu Mar 14, 2019 6:46 am
by GentleJacob's Mom
Hi Chris,
I'm so glad you posted. I've thought about you many times since you lost Molly, and I'm glad to hear you're doing better. I said many times while our Jake fought this disease that it's so easy to put the trauma you go through watching them seize on the back burner because you have to, but our trauma is very real. Watching a beloved companion, pet or person, go through a seizure is traumatic and it lasts long after they're gone. I still jump when I hear a scratching noise at night and I don't know that that will ever change. Jake died in my arms and I still can't talk about it for the most part but I'm getting there. But we now have another goofball that keeps us on our toes 24/7, so life has moved on and as you said the good with some of the bad hanging around. I also remember what you went through after Molly died and can only imagine the strength it took to get back on your feet. You were so determined so your strength was always there.

Take care of yourself, and continued good luck.

Re: Life after epilepsy

Posted: Fri Mar 15, 2019 10:19 am
by Chris Douglas
Hi Lynne
Sooo good to hear from you. Aaaww dang, I'm sooo sorry to hear you lost Jake. I can only imagine how hard it must of been to loose him and in your arms. There are sooo many moments in time during our lives that will always be there. Even the ones on the back burner visit me in my sleep.

Not long after I got resettled Miss Molly developed dementia. It was a slow downhill ride. After about a year n half of dealing with that and I finally I had to take her in. That was the start of a 48 hr of hell. 1st taking miss molly in, then 2 hour later I got a Liquor Control Board violation at work for selling a can of beer to an undercover 18 y.r old working with the liquor control board, and the day after next I got robbed while working at the mini mart. I quit that job 4 days later with nothing to go to, no other job lined up, and was out of work with no income for 3 months. That's where the professional help came in but after a few Dr. appointments I just told him I couldn't see him again cause I needed to find work. Rather be working n crazy but paying rent than sane, no job, n homeless. The after waiting for 3 months for the courts to make a decision I had for a job cleaning rooms at a Best Western.

The violation cost me $1,000.00 in fine, fees, court cost, a mandated on-line course for a "servers license", 24 hrs community service, and a years probation. 15 months total before it was all said and done. Only had my life back 14 or so months now. The community service turned out to be digging snow out from around all the fire hydrants. So I worked days cleaning rooms and nights shoveling snow in -15°. Somewhere between 50 and 75 home lost water from the towns broken pipes and were without water for several months. Here's a pic of digging out a fire hydrant just as the sun goes down and it gets really really cold ... aaahh ... a lil' funny add-on: the pic was taken by the judges wife. They were driving by n saw me doing my community service. She jsut had to get out n take a pic. while he stayed in the SUV and didn't acknowledge anything ... lmao


After deciding maybe cleaning rooms wasn't for me ... lol ... actually also decided the job would fit a younger person better. I took a job at a Safeways where I still working.

I was wondering about Ellen. I haven't seen anything posted from her for a very long time. I hope every things o.k. Glad you doing better and have found a new goofball to keep you entertained. You should post a pic in the gallery. I went there and looked at some older post from back then and even though they wasn't the best of times the friendships here were.

Take care,
and thanks for responding

Re: Life after epilepsy

Posted: Fri Mar 15, 2019 1:29 pm
by ShilohsMom
Oh my gosh, it's so good to see you Chris! Lynne had said you had recently posted and had to come check it out. I'm not on here much anymore. Not sure if it's because so many years have passed since losing Shiloh and I feel disconnected or what but do occasionally get to lurk. I've thought about you over the years and have wondered how you've been doing. I'm so sorry that you'd had such a rough time of it and praying that times are getting easier for you. Even though you're doing community service in the pic you look great!!!!

Re: Life after epilepsy

Posted: Sat Mar 16, 2019 8:02 am
by Chris Douglas
Hi Colleen
aaahh maan ... sooo sorry to hear you lost Shiloh. I remember thinking that had happened back in 15' cause of a posting on FB from the Wally Foundation about you donating Shilohs meds. only to find out everything was o.k. ... you were just donating un-needed meds. ... lol ... I actually think that FB posting from Wally Foundation is what brought me back here ... that and facing my demons which is a good thing.

Thanks for the compliment on the pic. I'm guessing it was somewhere between 0 and 10 above at the time so between being half froze (I'm a "hot-house-plant" ... hate winter)and getting my pic taken by the judges wife with the judge himself sitting in the car it was rather awkward. Not to mention that for someone like me who's never been in any kinda trouble before ... well ... lets just say I was "out of my element and worried sick about what was to become of me ... worry is my middle name after all ... :shock: :shock: :shock: :shock:

I've done my share of lurking too. Guess that part of our lives never really leaves us. So how are you and are you now in that part of "Life after Epilepsy" where your no longer dealing with Epilepsy? Have you found that your past Life "with" Epilepsy has made you a different person than what you might have been had you never experienced it?

Also been wondering if anyone knows about Ellen ...
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 :-(

Was hoping she still might be coming here ... or lurking like some of us ... :lol: :lol: :lol: :lol:

well, anywayzzzz, sure good to hear from you and I'm so sorry to hear about Shiloh. Like the sayin' goes, "If love could of saved them they woulda lived forever" and every now n again I think of the line that "I wish the rainbow bridge had visiting hours"

take care and thanks for posting!

Re: Life after epilepsy

Posted: Wed Mar 20, 2019 5:39 pm
by SpencerBhumi
Hi Chris, It is wonderful to hear from you.

It is great to hear from ALL of you again.

Dear Chris, I’m sorry to hear that ‘doing it hard’ was relentless upon you, but it shows your resilience and toughness of character. I truly hope you can catch a break and recoup that lost joy in life. And I’m sorry Chris & others; I lost your contact details in a computer crash so have not been able to keep in touch. But please know that I have been thinking of you.

This is a bit like a reunion of survivors. I often think of you all – it is funny what and when will trigger my memories on Spencer and on how you all supported me (& so many others), which then leads me to wonder how you are all going. I would really love to meet all of you in person because you are all such amazing and wonderful people (all of the epidog members here are amazing people) but we live in a big busy world so I guess I’ll have to make do with heartfelt memories and gratitude, and trust that we are all surviving well. (Barb [seebr5640] this includes you also - if I shout this out loud enough I hope you will hear me wherever you are). If I ever get the chance to head overseas I will seek you all out in the hope of sharing a coffee with you.

Chris and others, if you would like to PM your contact details to me I would love to keep in touch (by email, Facebook or however). If not, know that I am keeping you in my memories and my prayers.

(PS Chris, the photo is great – if under different circumstances you could just give it a happier title).

Thanks for being amazing people.
Wishing you all well.

In memory of Spencer 7-12-05 – 22-8-17

Re: Life after epilepsy

Posted: Fri Mar 22, 2019 5:25 am
by Chris Douglas
Hey Trevor,
it's soooo good hearing from you. I think of you often and all the support you gave ... as did so many here. lol, and the movie Red Dog ... a movie about a survivor dog and a meeting of the Epilepsy Survivor's Guild ... a lil' funny in a strange sorta way.

Sorry to hear about Spencer. Was it the demon epilepsy or old age ... he was doing soooo good last I knew, but that was sooo long ago and things change. So how are you doing? or what are you doing? Whichever applies ... lol ... are you kicked back, retired, and enjoying the good life down under ... I still think of the those absolutely stunning pic's you posted. The landscape there is sooo diverse ... much like this country from what I've seen in pic's since I've never traveled before. I hope you get to someday come across the pond and should you ever end up in my lil' podunk of a town coffee's on me.

I only stop by once in a blue moon but was intrigued by the subject of life after epilepsy. If as they say "men are from mars and women are from venus" I wonder if we process trauma differently as well. You have always appeared to me to be a very calm and sensible guy. What are your thoughts about putting traumatic events on back burners and p.t.s.d.? Are the ways we deal with it(or don't deal with it) gender specific? ... just thinkin' out loud ... lmao

Thanks for the compliment on the photo. I could say something lofty like "It was the best of times, it was the worst of times, (A Tale of Two Cities) but truth be told I was just surviving one moment at a time ... and as long as it's below 60° or 70° since I'm a "hot-house" plant it'd be hard for me to feign anything but a fake smile ... lol

Guess you might have noticed in my previous posts I was hoping to see Ellen on here ... but alas it was not meant to be ... well, at least not so far anywayzzzz. I never had any contact with her except here but her kindness made me a better person for which I am deeply grateful. Perhaps if she ever comes here again she'll see this ... or ... maybe someone else will and pass it along to her.

So glad you posted Trevor
take care and prayers up for all ...

Re: Life after epilepsy

Posted: Fri Mar 22, 2019 10:05 am
by ShilohsMom
Hi Chris,

I lost Izzie (my Labradoodle) in 2014. She had gotten acute Leukemia which was incredibly fast and there wasn't anything they could do. Then in 2016 I had to let Shiloh go. He'd had a cluster of seizures and they gave him a couple massive doses of PB of which he never recovered. I still have Rylie who just turned 13 and a couple years ago added Sophie who is almost 4. Life is different and think Shiloh's epilepsy has made me more patient and understanding of issues animals and people can have that aren't visable to the human eye. Reminds me that everyone has a story.

Love the Wally Foundation and what they do for people. Shiloh's meds changed so much it was a great place to donate what he couldn't use to.

Every picture tells a story and think the wife of a judge taking your picture sure added some humor to yours. What are the odds of that happening?

Hope to hear from you and you aren't a stranger. If you'd like to stay in touch outside of forums please feel free to reach out to me through Facebook or if you'd like to email, PM and I'll send you my address.

Prayers for the very best to come for you.