16th February 2015, 06:31 PM
So sorry that you are having such a rollercoaster with Ziggy, but glad he seems better at the moment. I would second what Karlin has said about medication - most neurologists don't now prescribe frusemide, not only because it can damage the kidneys but because used long-term it can eventually damage the heart. And the logical place to go if a large dose of gabapentin isn't really working is Lyrica.
To be honest, if Stephanie was my neurologist I would want a second opinion - which you have every right to ask for - and see if you couldn't take Ziggy to see Clare Rusbridge in Surrey. Clare is the leading researcher into CM/SM, and such a caring person, with a huge experience of treating Cavaliers. She doesn't come cheap, so I hope Ziggy is insured! But I don't think that simply increasing gabapentin and adding frusemide is going to get to the bottom of the sort of pain Ziggy is experiencing. Red eyes can be indications of headaches due to pressure behind the eyes from enlarged ventricles (the spaces at the front of the brain), and in my experience with Oliver gabapentin doesn't really touch it.
If you look in the In Memoriam section of the forum you will see my tributes to Oliver and Aled, who have both been put to sleep in the last 10 days
16th February 2015, 06:45 PM
PS If Ziggy has another bad pain episode, video it. Then if he doesn't show signs at the vet's, you can show it and say this is how he was. Vets need to see what they are dealing with.
One way or another, I hope you can make Ziggy much more comfortable
16th February 2015, 08:56 PM
PPS (Sorry!) It might be a good idea to start keeping an eye on air pressure. A lot of people find that their Cavaliers with CM/SM have bad days when the pressure goes sharply up or down, and lately it's been going up and down like a yo-yo. At the moment, for example, in our area it's around 1038, which is 28 millibars above the norm of 1010 - a huge rise. You can check the pressure on the BBC weather site, or get an app - if you find that Ziggy's pain episodes are related to sharp ups or downs in air pressure, you may be able to look ahead and give him extra painkillers like tramadol or metacam when the pressure changes. It seems to work!
I shall NOT send you a PPPS!
16th February 2015, 10:44 PM
Im so so sorry to hear about Oliver and Aled, Kate, such a difficult time to go through, must be really hard.
Having met both of them at the meet up, they were brilliant, as all Cavs are. Such sad news. Lovely tributes you did for both of them, didnt know Oliver was a PAT dog!
You've provided them the best home and in return they were excellent companions.
Ziggy is on the following meds as of now:
Gabapentin 100mg - 3 capsules in the morning, lunch and evening.
Amitriptyline 10mg - 2 tablets, one for morning and one for bed.
Omeprazone 10mg - One capsule given once every day.
We managed to video his last episode and we showed it to Stephanie which helped quite a bit.
On the second opinion front, we totally agree. Stephanie is leaving to go back to France this week anyway so we will be forwarded to one of her colleagues who have given us more satisfactory results in the past. Given the doses of the medications he's on, would that be why he hasn't been tried on other meds? Or is that just a question of opinion of the Neuro?
RE to the weather, I was monitoring it around the time he was having his episodes and the changes in air pressure were fairly minor, so it might not be that but still cant rule the possibility out I suppose.
We might ask for James or Sebastian when we get the results so we can have a talk with either or of them two as they have mentioned similar medications as others have mentioned here, so that sounds like a good option.
Il keep you posted!
PS: Ziggy still seems OK which is good!
All the best, Kate
17th February 2015, 10:22 AM
I've found Sebastien helpful - though he treated Aled for myoclonus not for CM/SM. I remember you saying that he was helpful on the phone when Stephanie was away. If '3 capsules' of gabapentin means one three times a day, that is the minimum starting dose, and probably far from adequate for a dog with Ziggy's pain episodes.
Glad Ziggy is still OK - hopefully a change of neurologist will help to keep him that way.
All the best
8th March 2015, 04:32 PM
Sorry for the delay in progress update, the family has been knocked by a sickness bug and numerous other things, all begging to return to normal now!
We are now with someone else at Willows and he seems to have a pretty good idea of where we are at and said to ring him any time. We have had ziggy on 3 capsules 3 times a day (so thats 3 for breakfast, lunch and dinner) currently, they said we can keep putting it up so long as its not sedating him (which currently it isnt) . To make it easier for Ziggy, we have changed the Gabapentin pills from 100mg to 300mg, so rather than having to get him to scoff 3 capsules, he only has to scoff one. Also, I have noticed the 300mg gabapentin seems to be more effective? I cant say its made any massive difference, but he certainly seems to be sleeping a little more peacefully after the 300mg pills, which is interesting. Maybe its sedating him a little more than the 100mg per capsule? Anyway, that aside he has been fairly ok, I cant say Ive been overly happy with him but we havent had to change to the Frusimide which is a good starting point I suppose. When we get time, Il ring up the new Neuro (Il get his name, unsure exactly what is name is) and see if/why not other gabapentin alternatives like you mentioned earlier as that seems to be the route a lot of other Cavs are going down.
Anyway, I hope your all ok!
Il keep you posted
12th March 2015, 10:11 AM
Hi James, Hope the family are better, there seem to be a lot of coughs and colds and tummy bugs around at the moment, perhaps because the winter has been pretty mild, with no really cold weather to kill off the bugs.
Glad to hear Ziggy is no worse, even if he's not much better, and that you have changed neurologist (is the new one Sebastien?). Us CM/SM folk forget that there are a lot of other neurological diseases out there and even neurologists can't be expert in all of them, and your previous neurologist did seem to be floundering a bit. Perhaps now you'll be able to get Ziggy more comfortable.
The Companion Club had a very good Health Seminar last October; the main speaker was the leading CM/SM researcher and neurologist, Clare Rusbridge. Her talk has been put on DVD and you might find it helpful to buy a copy (price £6) from the Cavalier Matters online shop (http://cavalier-gift-shop.org/compan.../prod_684.html) - it will bring you up to date with the latest thinking on CM/SM and treatments. If you prefer, you could borrow my copy, just send me your address.
My favourite quote from Clare's talk (bearing in mind that both gabapentin and lyrica are human drugs): 'We never use anything on our dogs until it has been thoroughly tested on humans'!
You can't really think that far ahead for Ziggy, but we're having another Cavalier Weekend at Copt Oak, 11-12 July and it would be great if you could come over for a few hours as you did last year.