PDA

View Full Version : Eye pain related to SM?



laram
18th October 2013, 08:03 PM
I was wondering if anyone has found that eye pain is a symptom of SM?

Sammy has been on 5mg prednisone every other day for SM for 5 years. He has done amazingly well for all that time with very few symptoms despite having been in a really bad state when he was young (gabapentin wasn't enough).

About a week ago, however, I noticed him squinting his right eye quite a bit. I gave him some gabapentin that I keep in case of pain episodes and it seemed to help. He was then fine the rest of the week. But today I came home from work and both of his eyes were half closed. He was still energetic and tail-wagging but clearly in some pain. I gave him 150mg gabapentin and again it helped (though it's also made him drowsy).

I'll take him to the vet soon, but I wanted to find out if others have experienced this kind of eye pain as part of SM? Could it be a sign the SM is finally getting worse? Prior to prednisone his symptoms were scratching like crazy, chewing his paws and rubbing his head frantically.

Kate H
18th October 2013, 11:37 PM
With Aled, half-closed eyes are a definite sign of pain, together with being rather subdued. If I increase his gabapentin, his eyes almost immediately become much larger and he is far more alert and lively. Oliver has always squinted in strong light, both sun and artificial light; his main symptom of CM/SM is frequent headaches and I think he squints because his head is aching and light makes it worse. He wears a sun hat in the summer and is on new medication that really helps the headaches. On his bad days he will half close his eyes even against bright cloud light coming through the windows. Gabapentin has never seemed to touch his headaches, which are more due to pressure inside the skull produced by severely dilated ventricles, I think, rather than straight neurological pain.

Have you noticed whether Sammy's painful eye days are related to days when the air pressure goes up or down sharply? Many CM/SM dogs are affected by this, and it may be giving Sammy pain in his ventricles behind the eyes and making his eyes hurt as well.

Always something new with SM! It is, of course, a progressive disease and so will change/develop over time. I hope your vet can help Sammy.

Kate, Oliver and Aled

laram
19th October 2013, 12:53 PM
I've never noticed a connection between the weather and his symptoms before, but we did have our first freezing temperatures in Finland yesterday, so it could be related. If he is getting worse, I'm not sure what to do. I doubt that giving prednisone and gabapentin together continually is recommended, but other than upping the prednisone and seeing if he tolerates that, I don't think there's much choice.

Today he's been ok though without any gabapentin. No squinting thus far. So hopefully it isn't about the eyes themselves (I was also worried that long term prednisone could be causing eye problems). My vet's office isn't open until Monday, but it looks like we're ok till then.

laram
19th October 2013, 08:32 PM
Now he started spinning in circles with his back leg raised, despite getting gabapentin a couple of hours ago. He's never done that before. It lasted less than a minute and he seems back to normal but it was really distressing to see! :(

laram
19th October 2013, 11:33 PM
Just back from a trip to an emergency vet at 1am. He lost balance again, started lip-licking and his eyes started to look erratically from left to right, almost as though he was following something that wasn't there. She couldn't find anything else wrong with him, so we have to assume it's the SM. Nothing we can do but add omeprazole and hope it passes. He's sleeping now. I'm kindof in shock.

Update: Sammy is experiencing classic symptoms of a 'vestibular episode', except he isn't really tilting his head. Since returning from the vet, he has gotten worse. He is now unable to walk or focus his sight. It is absolutely unbearable to see him like this, gut-wrenching. I don't know what to do.

Another update: Sammy has been able to walk better today. His eyes are still flickering and he is now starting to head tilt. But otherwise he seems a bit happier than last night. I'm wondering if it might be a middle ear problem and not related to sm. The vet couldn't see any signs of bulging in the outer ear though. Has anyone experienced this before? Was a recovery possible?

Love my Cavaliers
20th October 2013, 02:26 PM
When I read your post last night my first thought was a vestibular episode, but I didn't have time to reply. Riley's SM has badly damaged her vestibular system so most of her SM symptoms are vestibular. She circles leading with her head, she frequently loses her balance - sometimes just when sitting, she sometimes has to lean against a wall for balance, she has 'vestibular episodes' in which her head whips backwards and she has nystagmus (her eyes look like Sammy's) several times a day and then won't have then again for several weeks. All of this is better since her surgery, but it's still there. BUT, she is a happy dog, like Sammy is now and she just picks herself up after an episode and keeps on going. Some dogs have vestibular episodes unrelated to SM though and they recover and it may or may not recur. For Sammy, I don't know which it might be. My guess would be, SM related. I'm glad he's feeling better. It is terrifying to watch.

Karlin
20th October 2013, 03:56 PM
Bev's given a very good answer that encompasses both 'normal' vestibular sessions and that some dogs with SM seemingly can become prone to them. I do hope he keeps improving now. The erratic movement of the eyes is a classic sign of a vestibular episode (but also can be seen with CM/SM).

laram
20th October 2013, 06:16 PM
Thank you so much for your responses! Sammy is an incredibly resilient little dog. He's so determined to keep doing everything he wants to do that he has been learning to balance again in hyper-speed. He's gone from hardly able to stand up last night to being able to walk down stairs this evening (with a harness and leash). He is still so determined, for example, to pee on every tree that if he topples over he just gets back up and tries again. And already he isn't toppling any more. I've gone from despair to amazement at his tenacity.

If these episodes are continual though, it isn't much quality of life. I just have to adjust his medication and hope for the best. I'm scared to give him gabapentin now, as yesterday's episode occurred about an hour after getting a 150mg dose. Of course it isn't necessarily cause and effect, but I'm terrified of it happening again. I'll take him for kidney/liver counts tomorrow and see if upping his prednisone is possible. And he hasn't been on omeprazole since he was young, so I'll keep him on that permanently now. Last night was really traumatic - the thought of losing Sammy was unbearable. But of course it has to be faced eventually.

Love my Cavaliers
20th October 2013, 06:49 PM
Like Sammy, Riley just picks herself up and keeps on going. When she can't jump up on furniture, she'll keep trying (she never makes it, but bless her she keeps trying). We have steps for most of the furniture now. Prednisone is the only medication that has worked for her. She was on 5 mg daily for 6 years up until recently when we felt like we could start weaning her down a bit. Maybe you could try Sammy at 5 mg/day for awhile and see if that makes a difference. Good luck and don't give up yet!!!

Karlin
20th October 2013, 07:19 PM
Oh, please don't withhold gabapentin. This is really important for pain relief for SM dogs and is extreme;y unlikely to have caused any problems. Vestibular episodes are a separate issue and if left without gabapentin for pain, I'd suspect there's actually a greater likelihood of a repeat session due to pain and stress. :thmbsup: In a decade of talking to researchers and having discussions here with others with affected dogs, I have never heard of gabapentin being linked to vestibular episodes. The chance is miniscule of it being gabapentin, which is actually originally a drug used to manage seizures.

Glad he is already doing better. Vestibular episodes likely appear worse than what the dog experiences, so please do not feel this is necessarily a lower quality of life. :flwr:

Vestibular episodes seem to be primarily treated with short term steroids and antibiotics.

Karlin
20th October 2013, 07:29 PM
This might also help:

http://www.petmd.com/blogs/fullyvetted/2011/oct/old_dog_vestibular_disease#.UmQhBe3qv8w

Karlin
20th October 2013, 07:33 PM
And also here a vet notes he has never heard of gabapentin causing seizures or being likely to have led to a vestibular episode:

http://www.justanswer.com/dog-health/5akzc-hi-dog-assume-vestibular-attack.html

Note that dog has obvious ear infections, and some serious problems.

laram
20th October 2013, 07:48 PM
I'm so confused. I read that ataxia (imbalance) can be an uncommon side-effect of neurontin. But he was on it when he was young with no problems. While I read your post, I actually heard him groaning in the hall, so I went and gave him 100mg gabapentin. He got his 5mg of prednisone last night. I don't know if I should add more prednisone tonight or not, or wait to talk to the vet in the morning.

Karlin, do you think it's possible for him to be on both regular prednisone and gabapentin? In the past, gabapentin alone wasn't enough. Now it's looking like prednisone alone isn't enough (unless a higher or daily dose helps and he tolerates it). Are the two ever used together, if only to buy time?

I've tried lyrica in the past by the way and it had surprisingly little effect.

I did also try gabapentin on its own again last year. He had surgery on his tail to remove a tumor, so he had to be taken off prednisone to heal and was put on gabapentin instead. The tail turned out to be a nightmare to heal anyway, compounded by the fact that the gabapentin wasn't enough for his headaches.

Karlin
20th October 2013, 07:55 PM
It's the combination of all the things you saw that would suggest vestibular and not a neurontin side affect, I think. A high dose of neurontin (gabapentin) could cause ataxia, but not that shifting of eyes which is considered probably THE defining symptom for vestibular episodes. Ataxia with neurontin is more due to being groggy.

That's why I'd give the regular gabapentin dose.

You can give gabapentin and steroids.

Lyrica didn't work for my Leo either at the starting dose but now he is on 50mg 2x (he weights 16 lbs) and is much better than when he was on 200mg or even 300 mg of gabapentin 3x. It may be that adjusting the dose would help. It may be too that a CSF inhibitor, if nopt being given, would really help (eg cimetidine).

I woud definitely NOT increase prednisone without medical advice. Steroids have significant side effect risks in their own right and at higher doses can cause more serious diseases (eg diabetes, Cushings, etc) and also will have stronger basic side effects like hunger, insomnia, thinning hair.skin, increased bruising. I'd only opt for steroids when all other options are depleted but they can give significant support and quality of life when appropriate. :) (I know -- I have been on them for a severe form of muscular arthritis that is now in remission and hopefully won't recur).

How much does he weigh?

laram
20th October 2013, 08:23 PM
Thank you! I'll keep up the gabapentin then and wait for the blood tests and my regular vet's opinion tomorrow regarding prednisone. Prednisone has been a miracle drug for him. He went from hanging-in-there to normal dog status within a week and has mostly stayed that way for years. He did have to be switched from 2.5mg daily to 5mg every other day though after a couple of years due to a worrying blood count (which resolved itself on the every other day dose). His coat is dry and a bit thinner and he is food-crazy, but those have been the only side-effects. I haven't done a prednisone related blood count now in a year though (there's been so much else to worry about with the tail... and mvd), so tomorrow's tests will be important.

He is about 10kg. He's a big cavalier, not over-weight at all.

I did ask the emergency vet if she thought putting him on antibiotics was a good idea just in case it is an infection. She thought not, since they are very strong. I hope they have some way tomorrow of telling if there is an infection (preferably other than a long train trip to Helsinki for a 1000e MRI).

laram
20th October 2013, 08:38 PM
Btw, is cimetidine more helpful than omeprazole? He was on omeprazole for a few months when he was young and I didn't notice a difference. When prednisone resolved everything, omeprazole was dropped - also because the vet thought it should only be prescribed short term.

I'll definitely think about trying Lyrica again. I got the impression from your post that its effects are cumulative? Gapabentin seemed to work more like a great short term pain reliever when he was young (he was better for a few hours and then bad again). Lyrica had no such immediately noticeable effects (I think he was on 25mg twice a day, along with weaning off prednisone).

Karlin
20th October 2013, 10:13 PM
Different dogs respond to different CSF inhibitors... some notice a huge difference with them, and cimetidine has far fewer possible side effects than omeprazole (though omeprazole works fine for many dogs and sometimes, better than the other options). To be honest I have never seen any major difference with CSF drugs BUT there is compelling evidence that they do potentially slow progression regardless of whether there's an obvious visible benefit so I think any dog with CM/SM should be on one, myself.

Many drugs need time to build up in the system. However I saw an immediate affect with gabapentin and also with the higher dose of Lyrica. At 25mg Lyrica had no affect for Leo and he was actually worse than on gabapentin. I decided to try it again at a higher dose and it has been much better for him than gabapentin, at a lower dose given less frequently.

Dogs coming off gabapentin (and I would guess Lyrica too as it is related) need to have the dose gradually reduced (a lot of people and vets do not realise this).

If gabapentin was only working for a few hours then probably meds needed adjusting. Most of us with SM dogs find, I think, that we need to regularly tweak the dose and/or the mix of meds the dog is taking.

At 10 kg, only 150mg 3x would be a modest dose of gabapentin -- he'd have room to go up on that and possibly come down on the steroids.

Steroids are a miracle drug in that they can immediately address inflammation and related pain but unfortunately one with a huge amount of side effects. They should only be used with caution. They often are absolutely the right thing often for short term reductions from a high dose to stabilise inflammation and pain, and also for long term use when nothing else works, but always at the lowest possible dose.

I would not hesitate to use them when there are no other choices, but there are generally some trade offs over time.

One issue is that many vets and neurologists opt for them right away as they give fast, easy results that make clients happy. But their use has many possible health implications and over time they can cause quite serious health problems. For a really painful dog that cannot be managed in other ways, the it is the right choice. But I would always recommend looking for alternatives first (as would, I know, Dr Rusbridge).

Bev is an example of a dog owner who does need to be using steroids and it sounds like you are too -- though I would wonder whether the steroids could be reduced or eliminated with a higher gabapentin dose (you could easily go up to 300mg 3x) or to Lyrica. I'd wonder if he'd do well on 200mg 3x for example and perhaps a painkiller as recommended on Clare's treatment algorithm, plus a CSF inhibitor, and enable you to get him off steroids. Or at least reduce the steroids. Though you need careful management of any NSAID painkiller given with a steroid.

laram
21st October 2013, 12:17 AM
Thank you for such comprehensive answers!

I will try Lyrica again at a higher dose. Is 50mg x 2 the maximum?

I have worried sometimes about whether I switched to prednisone too soon. I was a student at the time and gabapentin had to be made up especially in liquid form for Sammy and sent from Helsinki in 50e tiny bottles. I think 200mg per dose was the highest I ever gave him. Since his condition fluctuated so much on it anyway, prednisone seemed like a god send. Thankfully he has tolerated it really well so far. I know that many dogs don't.

At this point I'm more worried about whether permanent damage has been done to his vestibular system and whether this is now a chronic symptom that cannot be masked with drugs. But I suppose I will just have to wait and see in that regard!

Edit (forgot to mention): in the very beginning he was on Metacam which did absolutely nothing for him, so I haven't given NSAIDs another thought since. But maybe it could help in combination.

laram
22nd October 2013, 11:18 AM
Terrible news from the vet today. His eyes are now oscillating upwards in a pattern which she says indicates he has central brain damage and not vestibular damage. Blood tests and x-rays show a damaged liver (it was difficult to tell how damaged from the picture) and an enlarged heart. We almost decided to end this struggle there and then, for his sake. But I brought him home anyway on the off-chance that his brain symptoms will improve with cimetidine and that his liver will improve with tapering off prednisone. I am distraught, especially at the thought that I might have spared him liver damage if I had kept trying other drug combinations. I am also scared that the brain damage is somehow related to the liver empairment. He was doing so well in previous blood tests and apart from dry fur and a strong appetite, there were no other side-effects.

So the medications he will be on now are cimetidine, lyrica, furosemide and tapering off prednisone. He also has tramal in case of intense pain. I don't know if I'm doing the right thing keeping it going. He is walking better every day. But his eyes look really sad and his head is pulled down to the right.

Karlin
22nd October 2013, 11:32 AM
Oh, no Laura, that's a lot to deal with.

Some of these things are really expert areas -- have you been able at any time to work with a neurologist just to confirm this diagnosis on upward movement of eyes?

Is he on frusimide for his heart or SM? If for SM, it has been removed for some time from Clare's treatment algorithm because of potential issues in giving it to dogs before actual heart disease.

Cimetidine is rarely known for problems with liver toxicity, as noted on Clare's algorithm. At the same time a lot of cavaliers seem to have liver problems. Nicki is generally good on this so hopefully she wlll see this post and have some comments.

Most cavaliers will xray with a slightly large-appearing heart so this may not be anything at all to be concerned about. It depends on whether it is definitely connected to the start of heart failure -- but many of us have cavaliers live many years with heart disease.

I would think your main concern will remain the neurological signs you are seeing. Could your vet contact Clare Rusbridge or another neurologist for some advice?

I'd pull him off cimetidine under the circumstances and would not have him on frusimide unless it is was for heart conditions. Omeprazole and some other meds do the same CSF action.

I hope some others might have some comments too.

laram
22nd October 2013, 12:33 PM
Unfortunately the only vet neurologist is in Helsinki. At this point I wouldn't put him through a train journey there (10hrs there and back) unless it would really make a difference. Sammy's regular vet who I saw today is also an eye-specialist and I trust her a lot. When I told her Sammy had a vestibular episode, she was able to reply right away 'that's not a vestibular episode'. She used a device to look within the eyes and was able to describe with a good degree of certainty what she was seeing (which was actually different in each eye) and what causes it in the brain. The thing that isn't clear is what caused the brain damage in the first place and whether it can repair itself. Her theories were stroke, tumor, toxicity as a result of liver failure, or most likely fluid related to SM (in which case relieving the pressure may provide a lot of relief).

The frusimide is for the heart, as she estimated his murmur as grade 4 now. Much louder than last spring. He hasn't had symptoms though - no coughing, exercises happily.

Kate H
22nd October 2013, 09:06 PM
Hi Laura

If Sammy is not showing any symptoms of heart disease, then he shouldn't be on any medication for it - if given too early, heart medication can actually do harm - especially frusemide, which according to latest research can possibly damage the heart if given before it is actually needed (which is usually when the heart is causing build up of fluid, which isn't happening yet with Sammy); this is why most neurologists will no longer prescribe it for CM/SM, preferring cimetadine or omeprazole. Long term use of any of the diuretics can harm the liver and kidneys, so getting Sammy off frusemide and on to one of the gentler drugs might actually help. Frusemide is great, of course, when heart symptoms actually appear.

The present drowsiness could be the higher dose of gabapentin, since this is a very common side effect and should wear off in a week or so.

The eye problem could well be a symptom of CM/SM. Both my Cavaliers have got dilated ventricles (Oliver's more severe than Aled's) and the pressure this creates behind the eyes can cause light phobia. They also both have other eye problems - Oliver has dry eye, and Aled has another form of keratosis, where his tears are not good enough quality to keep the eye healthy. I presume your vet has done a test for dry eye, though it might be worth seeing an ophthalmologist (my vet didn't pick up Aled's eye problem because it needed technical equipment).

Getting the medication right seems to take over your life - I sometimes feel as if I am running an eye clinic, a neurology clinic, a clinic for the elderly (Oliver is 12), and a pharmacy! I do hope you can sort out the right mix for Sammy.

Kate, Oliver and Aled

laram
22nd October 2013, 11:22 PM
Hi Kate,

My vet is an eye specialist and was able to tell me today that his eye issue is a result of centralized brain damage rather than a localized issue or even a peripheral vestibular problem. He has other very distressing symptoms which developed very suddenly on Saturday - much as though he had a stroke. I'm just waiting now to see if he will get better or worse.

The gabapentin has acted like a sleeping pill. Perhaps it's a good thing at the moment, since he might otherwise be under stress.

I just don't know about the heart. The vet thought it was enlarged enough and the murmur was loud enough to warrant treatment. He hasn't been on treatment before due to lack of symptoms. For now, I'm going to follow her instructions, since it may also relieve fluid around the brain and the liver.

Thanks for your answer! I'm still hoping for the best, but I do need to face that he is a very ill little dog. Writing here and reading others' experiences seems to help me cope.

laram
23rd October 2013, 11:12 AM
This is turning into a dog blog!

After hardly moving from his bed all day, Sammy started playing happily last night with an empty food carton. He's also very happy when he hears me preparing to go out, though he is quite slow and wobbly and apparently would like to spend all his time sniffing the same spot. He still loves his food and was really excited when a friend came over. For those reasons I'm glad I still brought him home. Worrying signs are that he is still shaking his head a lot, his head is still pulling down to one side, and there are signs that he doesn't quite know where sounds are coming from (he hears them immediately but will look in the wrong direction).

About the furosemide: I just remembered the vet mentioning the need to bring down his blood pressure (which is also linked to brain problems like stroke) when she was writing the prescription. Is this something that may need treated even if symptoms like coughing aren't present? To be honest I don't think she actually took his blood pressure (unless she did it when I wasn't there), but at this point I'm happy to try anything that might reduce tension in the brain.

Love my Cavaliers
23rd October 2013, 03:33 PM
It must have warmed your heart to see him playing. I guess it's just day by day with Sammy now as you don't really know what's going on with him. I'm so sorry that the prednisone probably damaged his liver. Riley's been lucky in that respect as she's been on it now for over six years. You can only hope that maybe time will be a great healer. No matter what, Sammy knows he's loved and you are giving each other something you'll always remember. Hoping for more positive posts!!!

laram
23rd October 2013, 06:56 PM
Thanks! Sammy is currently sitting beside me on the sofa staring me down while I eat my pizza, waiting for a crumb to drop. He also did his usual little twirl jump when I gave him his own food. I think he might be feeling better... :) His left eye is more or less back to normal, but I don't think he can see with his right eye and he doesn't like me touching the right side of his face. I just gave him his gabapentin (150mg for now), so he'll probably be back to bed soon.

Tonight will be the first time I give him a tapered down dose of prednisone (2.5mg), so here's hoping it's a good reaction tomorrow and not a bad one...

His recovery still depends on the underlying cause. But I'm happy to have my food steeling sofa buddy back at least for now.

laram
23rd October 2013, 09:44 PM
In case anyone else ever goes through this: I found information (below) on a condition called syringobulbia, a progression of syringomyelia, which sounds like it is exactly what Sammy is suffering from. The vet said Sammy's symptoms were related to the brainstem and cranial nerve, as shown by his eye movements and lack of reflex responses around his right eye.

I doubt that the liver is involved and based on what I've read online, I'm beginning to doubt that Sammy's enzyme levels and liver size are even conclusive evidence of liver disease. I'll still reduce the prednisone though, try other combinations and see how he responds.

Syringobulbia
This occurs if the syrinx extends into the medulla of the brainstem. The cranial nerves become affected:

Facial sensory loss can occur as the trigeminal nerve becomes involved.
Vestibulocochlear nerve involvement causes vertigo and nystagmus.
Facial, palatal and laryngeal nerve palsy can occur as the VIIth, IXth, Xth and XIth cranial nerves become involved.
Weakness and atrophy of the tongue is caused by XIIth nerve involvement

Love my Cavaliers
24th October 2013, 02:06 AM
What's the prognosis for syringobulbia? Can it be kept in check or does it keep progressing? I looked on-line but couldn't find much.

laram
24th October 2013, 11:29 AM
Nearly everything I found on it was for humans and involved immediate surgery. With surgery a percentage nevertheless are eventually wheelchaired. One site mentioned that it is associated with a rapid curve progression. I did find a research article reporting on a case study from the late 1800s when surgery wasn't performed. The woman became gradually incapacitated over 7 years as more of the cranial nerves were damaged. It is apparently quite a rare progression of the disease and associated with cm.

I couldn't bring myself to lower Sammy's prednisone afterall. He started having a flare up of symptoms that sometimes happens late evening while his dose is due. He looked disorientated and started trying to scratch but not being able to balance to do so. I couldn't stand the idea of him being in anymore pain. I'll try again when he is on a higher dose of gabapentin (he is now on 450mg per day and I'm building up). The other option is to hope his liver function is not as bad as suspected and continue to give him both.

I made the decision last night to take him to the vet to be put to sleep. I cried all night, having no idea how I could possibly bring myself to make the call and take him there. Sammy has meant the world to me and he is still only 7 years old. Then this morning he scratched the door to go pee and I noticed that his head tilt was a bit better and he is walking well. I unmade my decision again. This is torture. I'm still thinking maybe he will just get better, but then I terrified that he will suddenly be in distress and there will be nothing I can do for him. I'm on an autumn teaching break this week. I can't imagine dealing with this while I'm working.

duseskiz
24th October 2013, 02:42 PM
ohhhh i am really sorry Laura :((

Kate H
24th October 2013, 07:34 PM
Have you read the thread started by GemmaMerlin? Merlin had facial paralysis, but this has improved as gabapentin began to get on top of the pain. Poor balance is a very common symptom of CM/SM. My Oliver has it but it doesn't seem to be painful, so I doubt that it is connected to his syrinx, and increased gabapentin doesn't make any difference. My personal (entirely lay and probably wrong!) theory is that balance is controlled by the cerebellum and for more than 6 years for Oliver this has been pushed by the Chiari Malformation and acting as a stopper in the top of the spinal cord, which cannot do it much good. So I wonder if the part that controls the balance has been damaged - but this idea is probably completely wrong! He has had one vestibular episode, but his terrible balance is never accompanied by the signature rapid eye movement, nausea etc. typical of vestibular problems And he has no problems with balance when he's trotting round the park!

I've not had your kind of ups and downs with either of my CM/SM dogs but I have had it with one of my Cavaliers who was in congestive heart failure for 9 months, so I have some idea how stressful it can be for you. But Cavaliers have a great enjoyment of life, even when that life is very limited by illness, and they have great powers of recovery, so I'm afraid the ups and downs with Sammy will probably continue and all you can do is learn to live with it.

Thinking of you both :hug:


Kate, Oliver and Aled

laram
24th October 2013, 08:48 PM
Thank you! This truly has been a roller-coaster week and I'm a bit of an emotional wreck now. But that's really encouraging to hear that another dog's facial paralysis actually improved with gabapentin! I will definitely read about it.

From what I've understood now (I too may be utterly wrong, but I've been reading up like crazy about every word that my vet uttered - it's a control thing - it makes me feel like I'm able to do something), there are two types of vestibular damage. The one people usually refer to as a vestibular episode is a peripheral vestibular attack. It is associated with the inner ear and only the vestibulocochlear nerve in the brain is involved. It is usually relatively harmless.

The other type is a central vestibular attack which is associated with damage at the brainstem and often involves other cranial nerves such as the trigeminal nerve - which is responsible for Sammy's lack of eye reflex. An upward rotational eye movement, which Sammy eventually developed, also indicates a central attack. This has a poorer prognosis because the cause is usually more serious and more damage can be done.

On the other hand, if no more damage is done than this, it should be livable with since the brain can compensate for quite a lot. Sammy's balance has already improved hugely - he is walking fine, his head tilt getting better and both his eyes have now almost completely stopped moving (and I think he can now see through both).

Irritation of the trigeminal nerve can be enormously painful in humans, but is actually controlled also in humans by gabapentin or lyrica amongst other possibilities.

I think there must be other types of balance problems that are not concerned with the vestibulocochlear nerve though! But based on what I've read, Sammy's is.

The literature I found on syringobulbia (and of course I don't know for sure that this is what Sammy has or even if it's possible in dogs) all describes an acute progression in humans. But in humans, acute progression is e.g. 7 years, whereas if Sammy manages even a few more happy months with all his problems, I'll be grateful.

I will ask my vet about talking to a neurologist.

I'm more hopeful now. Last night I was convinced though that I am being selfish in keeping Sammy going through all these problems, since I can't say for sure how much pain he's in. But as you said, maybe I just have to live with these ups and downs now. I do hope I'll have the wits and courage to know though when it's time to stop. I'm sorry to hear you've gone through the same thing with one of yours. I guess everyone does eventually. But I had no idea it could be this painful - I don't know how anyone has strength to get another.

laram
26th October 2013, 11:53 AM
Update: Sammy is doing really well. Yesterday he was running around almost as though nothing had happened. His head is still tilted a bit, his eyelid is still paralyzed, and he's still shaking his head sometimes. But all of those things seem to be improving every day - I could swear I even saw a slight eyelid twitch this morning when testing his reflexes.

I still haven't had the guts to reduce his prednisone. He's on 5mg every other day, and I'm still finding that on the evening when his dose is due he starts to have pain symptoms (despite the gabapentin and now lyrica, which I'm gradually switching him to). But I've ordered Denamarin online and have read some really encouraging reviews for it from people whose dogs had liver disease.

I guess the problem is now that since I don't know for sure what the cause was for all this, I don't know which medication (if not all three or none) is making him better.

I've been considering taking him down to Helsinki for an MRI scan, since that's the only thing I see that would be conclusive. It would be very expensive though - he's not insured and I've already run up a very big bill this week - and I'd have to take a couple of days off work, so I would only do it if I thought it might change his prognosis. The only way I see that happening is if my vet was wrong after all about it being a brain-stem problem and instead he has an inner ear infection and needs antibiotics. But then why would he be getting better...

Anyway, so far so good :)

Edit: Forgot to mention. The weather was getting increasingly freezing last week when Sammy was deteriorating. It has been warming up when Sammy has been improving. So I can't rule air pressure out as a cause either - though that seems a pretty ridiculous connection given how dramatic and sudden the symptoms were.

Kate H
26th October 2013, 11:24 PM
Don't underestimate the influence of air pressure. Someone wrote on here a few months ago that Clare Rusbridge had seen a Cavalier with CM/SM who was in so much pain and distress that euthanasia was being considered. Saw it again the next day and was amazed at the improvement - and the only factor that had altered was a rapid change in air pressure. We're brewing a huge storm in the UK at the moment and over the next three days the air pressure is going to drop rapidly and then go up again rapidly as the storm moves away, and even my Oliver, whose CM/SM is usually well controlled, was occasionally whimpering with pain this evening. He got his bedtime gabapentin a couple of hours early and that seems to have made him comfortable. He has severely dilated ventricles, like many Cavaliers with CM, and it seems that the pressure this creates within the skull is affected by changes in pressure from outside the skull. Human beings with CM are also affected by changes in air pressure and get migraines.

It really is a pig of a disease, but I'm glad Sammy is improving. It seems normal for it to take several months to get the medication right for a particular dog. An alternative to the long journey to Helsinki might be to talk to Clare Rusbridge on the phone. She has more experience than anyone of treating Cavaliers with CM/SM, and although sending her an MRI scan of Sammy would be the ideal, she is very good at 'long distance' consultations. She will charge you, of course, but it will be nowhere near as expensive as a long trip to Helsinki, an MRI and a couple of days off work. Someone on this forum who lived in France did this a couple of years ago when her young Cavalier was diagnosed and found it really helpful, and Clare then contacted a French neurologist and they worked on a treatment plan together. Another possibility, anyway.

All the best

Kate, Oliver and Aled

laram
28th October 2013, 12:54 AM
This may sound silly, but how do I contact Clare? I've been trying to find out online, but so far it seems that the only way may be through a referral from my vet's office to hers, if that's even possible from Finland.

Sammy has been doing really well. He's almost back to himself. I have him up to 50mg lyrica twice a day now, so this was the first evening I decreased his prednisone to 2.5mg (he usually gets 5mg every other night). I did start noticing symptoms as it approached bed time - scratching, flinching away, and, oddly enough, staring at me. I just don't know that the lyrica is doing anything for him and whether it will do anything for the neurological deficits. So I don't know that I'm doing the right thing reducing his prednisone at all. Then again if his liver is severely damaged (which is very uncertain), perhaps the prednisone has caused the neurological deficits in the first place.

And he's still on furosemide for the murmur and enlarged heart, but I don't know if that is actually a bad idea for the heart and the liver, though it may have actually helped his sm. I am just stumped. When I give him or don't give him a certain medication I don't know if I'm curing him or potentially killing him. Something caused the attack last week and now something is making it drastically better, and I don't know what that something is in either case.

RodRussell
28th October 2013, 03:35 PM
This may sound silly, but how do I contact Clare?...

Her website is http://www.fitzpatrickreferrals.co.uk/

laram
28th October 2013, 10:32 PM
Thanks - I will contact the clinic then first rather than Clare directly.

Sammy is still doing well, despite the lower prednisone dose yesterday. He was squinting a bit this evening and scratching a little, but I'm really hoping that 100mg (2 x 50mg) Lyrica will keep that from going over the edge. He is otherwise full of beans and only his head tilt, a lack of eyelid reflex and very slight in-coordination outside would show that anything has happened. On the vet's advice, I'm decreasing his furosemide from 40mg to 20mg per day now. I think it might be helping his circulation (I actually noticed yesterday that his tongue is now a healthier pink than it used to be). I'm considering adding omeprazole too for the sm.

In case anyone wonders why I am so obsessed with him, this is a (crappy iphone) picture from this evening. Could there be anything sweeter than this tail-wagging little dog? Apart from your own dogs of course! :o

http://farm4.staticflickr.com/3749/10491636615_d95f6fb2c1.jpg (http://www.flickr.com/photos/9063431@N03/10491636615/)
my sammy (http://www.flickr.com/photos/9063431@N03/10491636615/) by llmmc (http://www.flickr.com/people/9063431@N03/), on Flickr

Karlin
28th October 2013, 11:20 PM
Ahh he's lovely. So glad he is doing better.

You may find you need to keep him on preds at the same dose but see how it goes. I don't think prednisalone would have cause neurological deficits. You can always go up on the Lyrica (in discussion with your vet of course) -- 50mg 2x is still at the moderate end of the scale I think. I am not sure you'll be able to associate the recent problems with anything having happened or changed, or with meds. Unfortunately with CM/SM some of these things tend to happen over time but they can also recover well and go on.