Not happy with Misty

[MomObvious]

I have no doggie medical advice to get you I just wanted to say I'm sorry you and Misty are going thur this. If you honestly believe a medication increase (on Gabapentin) would help I would find a vet/neuro who was at least willing to let me give it a try. Clare Rusbridge's approach has been medical proven to help. If that is your "Mommy gut" feeling then fight for it. YOU are Misty's best advocate!!!! She cannot speak for herself, if your gut is telling you something follow it. I realize sometime that means swmming upstream but... Also, I think when it comes to the "Mommy gut" feeling manners are out the door. I mean you don't have to be rude just insistent. One of my biggest "Mommy gut" issues was a problem with one of my children, and I did have to get rude to get it done, thankfully it was not a medical issue however had I not advocated for him he would be a different person today and not in a good way.



Sending love and good wishes, please keep us updated.

Melissa

[murphy's mum]

I have spent so much time trying to decide whether I am being paranoid and imagining ordinary behaviour is abnormal or whether I am being neglectful for not acting on the vague uneasiness I feel.

This is how I feel.

It's funny how these amazing little dogs can remind us just how "normal" they are at heart. We went a walk up the river to try and clear our heads. The start of the walk takes us through a field that has a huge gorse bush thicket, with a very large rabbit warren under it. Misty loves walking here as she goes crazy chasing the rabbits. Due to the time of night it was the rabbits were out in force, the pair of them took off after them, and disappeared around the back of the thicket. Well.... Misty came tearing back with a dead baby bunny in her mouth. For a heart stopping moment I thought she'd actually gone and caught it. On closer inspection it was obvious she hadn't, as something had been snacking on it. After we persuaded her that she wasn't getting it for supper, we continued to the river, where they both spent a good half hour splashing in the shallows.

Watching her playing in the river with Murphy, fetching sticks, it was easy to see how happy she can be. I believe her good moments are still outweighing the bad ones, and I think as long as they do we'll be okay.

[Kate H]

We do the same - push a nagging headache out of our consciousness because we're absorbed in doing something else. I'm just thankful that there are so many things that Oliver still enjoys that help him to 'switch off' from his headaches. It may simply be that gabapentin isn't the right or best drug for Misty; Oliver has been on it for nearly 5 years, up to the maximum dose of 200mg x 3, but it has never completely dealt with his headaches. For a lot of dogs, Lyrica seems to work better; the present RVC trial that Oliver has been on is testing a possible new drug - recognising that CM/SM is a complex condition with a wide range of symptoms, that dogs differ in their response to drugs, and that we badly need a wider choice of treatments.

Oliver scratches a lot when he goes bananas seeing his harness and knowing he's going for a walk - I think excitement creates tension that affects the pressure in the ventricles and that makes him scratch his head. Like Misty, he has never yelped, but he does whimper gently in his sleep when he's got a headache, and gets restless, moving from place to place trying to get comfortable. If Misty's finding jumping less easy, she might find steps helpful - they aren't expensive and Oliver never even tries to jump now, which is probably best for them.

Kate, Oliver and Aled

[murphy's mum]

I was following Oliver's progress in the trial. It's super that the new drug has worked for him.

Maria did say she believes the pain in Misty is down to the CM, causing a constant pain. When Misty gets her read rubs from me it's over the eyes I rub, she will come back time and time again, and keep nudging me when I stop, until she just lies comfortably.

Does Oliver have problems hearing? Misty seems as though her hearing is worse on her "bad" days, but I wasn't sure if it's just her ignoring me, so never gave it too much thought.

[Kate H]

Oliver's headaches are definitely from his CM rather than SM, he has seriously enlarged ventricles (x 3). So his headaches seem to be from pressure/tension, rather than nerve damage (which causes much SM pain), which may be why gabapentin hasn't worked terribly well. Yes, Oliver was diagnosed as very deaf in one ear about 3 years ago (when he was 7, though I had been picking up signs for at least a year before that), and when he had his latest BAER test on 1 May, that ear was slightly better but both ears were pretty bad. The lady who did the test was interested in his dilated ventricles and did wonder whether there might be a connection. The first indication was that if he was lying in his bed on his 'good' side, ie with his deaf ear uppermost, he wouldn't hear me coming into the room.

Incidentally, I found with Oliver that lying flat on his tummy with his head pressed to the floor (the Cavalier Prayer Position!) almost always brought on a headache - I think the pressure from the floor goes up through their face and hits the pressure in the skull. I have found that rolling him gently on to his side always helps, as it moves the pressure slightly away from the front of the skull and stops the jaw pushing against the floor. I think the researchers are increasingly recognising that CM is very much a problem in its own right, not just a cause of SM. Makes you wonder how many dogs with CM and dilated ventricles, but not SM, are putting up with unrecognised headaches.

I do hope you can tweak Misty's medication to deal with the headaches.

Kate, Oliver and Aled

[Sabby]

My Ebony has symptomatic CM and she is on Gabapentin 100mg x3 and on Zitac and if she needs it I give her Previcox. I have read so many posts and there are so many Cavaliers on higher doses of gabapentin or like Karlin said there is always Lyrica to try. My Harley is on Lyrica. My Ebony was on Trocoxil for a while and she came of it with no problems.
I am normally not a person that speaks up but since my dogs have been ill I have seen a change in me and I tell my vet exactly what I expect and what I want. I am sorry when it comes to my dog’s well being I just see red. I would politely tell your Neuro that you think that it is time and that it wouldn’t hurt to try Clares ideas after all you are the paying customer. You still have so many options left.

[pippa]

No advice but thinking of you and Misty and so glad she had a good time with you and 'bunny'

[Karlin]

I think you just have to be firm and say you want to try a higher dose. Or try Lyrica (though I'd do higher gabapentin first as it is cheaper). And bring in Clare's protocol and ask why they feel raising the dose won;t work when she is on the *starting* dose and could take double that, and still fit Clare's recommendation:

Start gabapentin at 10-20mg/kg orally 2-3 times daily (typically a 8-12kg CKCS would be started on 100mg capsule twice daily) with or without NSAIDS

So she could easily be taking 200mg three times a day. I'd probably try 150 but that means splitting capsules. I used to get the 600mg tablets instead, and use a pill cutter to divide them into 4 150mg pieces. Easier than capsules. But eventually had to move Leo to 200mg 3x. I used trocoxil too for a bit but eventually didn't see too much difference so just give metacam or tramadol on scratchy days (eg weather change days).

Here's the full document. As you can see there are all sorts of different things to try and ALL of them are suggested before starting steroids. I don't get why some neuros give prednisalone or prednisone before trying other options -- I'd be saving it for when nothing else is working or if I had a dog that didn't respond to other meds or had difficulty with other meds. Side effects from long term steroids are generally greater and more risky than on anything else. They are great short term and can give relief when nothing else can longterm too -- and are necessary for some conditions. But 'd never want to use them unless necessary.

http://www.veterinary-neurologist.co.../treatalgo.pdf

I do understand of course that different neuros may take different approaches but Clare has likely treated many more cavaliers with SM, over far more years, and is one of the primary researchers on the condition and has tried many combinations of meds for this. I've never heard that raising gabapentin levels doesn't work -- and there are loads of us here who know otherwise from practice. That said it doesn;t work well for all dogs and does not stop progression so worsening symptoms may mean some progression too which means meds need adjusting. All part of the challenge of this condition for owners and adds to the worry that we get too used to gradual increases in symptoms to notice them sometimes and then we aren't sure what we are seeing, if anything at all. We have all been there.

[murphy's mum]

I think part of the problem is that our usual Neuro has been out of the country on study leave. She's back on Wednesday, so I'm going to call in then, she's been away for 3 weeks, and this has all been going on for three weeks

I have to admit Misty has had a good couple of days, but whether that is down to the Tramadol, or just a coincidental two good days, well it's too early to say. It's just nice to see her so relaxed while she's sleeping, and yet she was really on her toes when we went a walk around the forest

[Karlin]

I think certain places have their own approaches sometimes too -- and it can be useful at times to challenge that and push a little. It can be really frustrating. Everyone is mostly experimenting with approaches but most generally base treatment on Clare's protocol and if they aren't, I would want to know the reasoning if it were my dog. Maybe there are good reasons behind the decisions! Or alternatives to consider. But generally the approach seems a bit odd especially if it left you so worried and implied there weren't many things to try. Sometimes it is really finding the correct balance of some of the things a person is already using, or adding in something additional. It isn't as if the choices are really limited as some drugs work better than others for different dogs, and in different combos.