# FOPS (feline orofacial pain syndrome) BURMESE



## Suzyscotland (Aug 30, 2013)

Hello,

I hope some of you may be able to help. 

My pride and joy, murph, is a 12 year old blue burmese. He has always been in excellent health and a typical happy, confident, lively and utterly adored burmese. 

He started significantly clawing at his face last friday night and caused alot of facial/internal mouth damage. i cut his claws right down and got him to the vet first thing. Vet queried dental issues so that day, his teeth were checked in the op theatre and two possible offending teeth were extracted. The vet said he had not seen such damage caused by a cat to itself and felt he may have feline orofacial pain syndrome which is rare but a genetic issue in burmese especially. Murph was sent away with metacam as we hoped it was the two teeth but was told to return ASAP without cat if episodes of face clawing did not resolve.

Next morning, I was back at the vet and collected some Phenobarbital (canine anti-epileptic) which he gets twice a day along with metacam (I am aware of risks). Apparently this may help reduce FOPS episodes within seven days. 

He is utterly zonked out on the phenobarbital, sleeping all the time and when he is awake, he wobbles and walks into things. When he eats or drinks he has an episode within five minutes, but the phenobarbital appears to be shorting the duration of attacks. It seems a double edged sword as this medication markedly increases appetite and thirst but cats with FOPS usually struggle to eat as mouth movement can trigger an episode. They must be so painful for him and his eyes say how uncomfortable he is. He allows me to cradle him and hold his front paws to prevent Causing further damage. he does have a buster collar which he wears at night and when i have to go out. Following an episode, he suddenly falls into a really deep sleep in my arms..exhaustion? I can't believe my beautiful, happy boy is now a shell of who he was. 
There is research going on at present, so his DNA is being sent to the researcher in London..
Any of you had experience of this condition? 
I am more than aware, if the anti-epileptic does not help within seven days, murph's quality of life will have to be considered...gutted..I'm gutted...I'm gutted....any suggestions to manage this cruel condition? 
Thanks so much 
Suzy.


----------



## flora696 (Jan 5, 2012)

Hello, 
I'm sorry to hear about Murph and what an awful condition, I am unable to help you but I really hope you get some good advice and something can be done for your poor boy xx


----------



## spid (Nov 4, 2008)

So sorry to hear what you are going through and I hope there is some help for you and your boy. Hugs.


----------



## nightkitten (Jun 15, 2012)

I am sorry to read about your poor boy. 

I know nothing about this condition but you said that mouth movements can trigger an episode. This got me asking myself what you are feeding. I could imagine that if you are feeding dry the mouth movements are worse than if you are feeding wet? So could feeding wet food only maybe help him a little (if you are not feeding wet anyway)?


----------



## Suzyscotland (Aug 30, 2013)

Thank you the kind words for murphy. He continues to be completely passed out as he has been all day again only rising to get water, food or to use litterbox. He has had three episodes today all after drinking and medication being given orally which is an improvement on six yesterday. 

Re food: his appetite has increased ten fold since starting the anti-epileptic meds. He usually gets royal cannin dry kibble but he clearly prefers very mashed up wet food at the moment..which is very unusual for him. Vet said add water to his biscuits but he refused. He is eating very slowly but is clearing his dish..again not his usual eating style. I am happy to repot he has just had a meal and no episode followed! The good thing, if i can say "good" is he is not associating feeding with the pain as there is usually a minute or so gap post feeding before he has one. apparently, some cats develop anorexia due to realising food equals severe pain. so, after his food tonight, i do not know who was more relieved..murph or me. Perhaps meds are slowly helping. 

The awful thing about FOPS is any mouth movement such as yawning, talking, drinking, eating and grooming can apparently trigger an attack. I had never heard of this condition either but most, when their cats are clawing their mouths and wretching in pain, assume it is dental pain and few vets (so I was told) are unfamiliar with this syndrome due to its rarity and prevalence in Burmese. The pain seems to come from the tounge as this is where cats mainly cause significant damage if not wearing buster collar and trimmed claws. And episodes can last between a few minutes or hours. murph's attacks last for a few minutes but he is in obvious distress and severe pain during those minutes..my heart sinks for undiagnosed cats. it is meant to be the equilivant of human conditions called trigeminal neuralgia. I've been doing lots of reading via access to medical/vet research academic papers (via my job) but research is sparse and ongoing. 

Many cats are put down due to no change with medication as quality of life for these poor animals reads as being horrendous, being in constant pain, zombiefied from the meds and miserable. The vet says, and research, that the best outcome will be seen within seven days of taking anti-epileptic meds..the meds are off licence for cats as it is meant for dogs due to risk of renal failure in cats. Murphy bloods are being taken on Monday to monitor this. 

Time to go and groom my sleeping beauty again as he is unable to do this yet but, he did have a quick lick of his paw and sweep over mouth following his meal..and no attack...another positive first! 

My two siamese young girls are being very loving and caring towards him. Incredible how cats can change behaviour when they sense one of their family is unwell. I'm even more surprised that my usual ASBO siamese millycat is being mother towards him. 

Apologies for my "war and peace" length post, but I think sharing information is a good thing..so more of us are aware of possible issues that may cause our fur babies ill health and us distress. I've learned a lot from this site, although old account password is long forgotten.


----------



## GuybrushJustin (Jun 24, 2013)

I'm sorry to hear about Murphy. This sounds very familiar to me - my Mum had a Burmese cat that started this exact behaviour (though I don't recall the term FOPS being used). Back then (over 10 years ago), there was less known about it and little could be done, but it was known as a genetic condition particularly affecting Burmese. Interestingly, given your username, my mum's cat was bred in Scotland, so it could be a genetic condition affecting a particular line of Burmese bred in the area.

It sounds like he's getting the best possible attention. I do hope he gets better.


----------



## Aurelie (Apr 10, 2012)

I remember reading about this when researching Burmese before getting Nancy and thinking what a distressing syndrome this must be for the cat. I hope you continue to see some improvement in poor Murphy and will keep my fingers crossed for you.


----------



## Suzyscotland (Aug 30, 2013)

Thanks again for your words and comments. 

I think you may be right in regards to FOPS being a genetic issue but i do find it odd it appearing at 12years old. Some of Murph's blood which my Vet took to screen has been sent along with his pedigree history to a Vet in London (claire rushbridge?) whom is undertaking FOPS research at present focussing on the genetic link as you say. She needs the blood for DNA. Can i ask how your mother's burmese was treated? 

Murph was back at vet this morning for a review. Vet feels the medication has yet to fully take effect but thankfully his tongue wounds are healing well (severely torn). 

The episodes are still happening after eating but he does not appear to be reacting as severely as before. He, thankfully, continues not to make the connection with eating and pain. He appears a bit more "murph-like" and even wobbled into the garden with me to sit in the sun at 0730hrs, albeit for two minutes then flaked out...again positive progress. He is still rather "out of it" and continues to sleep a horrendous amount compared to pre FOPS but is more "with-it" than last week. Again this apparently takes a while for his system to adjust. I am relieved he is not experiencing the pain constantly which was a great fear as undoubtedly there would only be one outcome. 

Am back to Vet on Friday to consider whether a referral to Edinburgh Vet School would be beneficial although i am reluctant to put him through a lot of intrusive treatment when there is utterly no guarantee of relief for him. My Vet was aware of a case where the Burmese had all it's teeth removed but this made no difference although it wouldn't considering it is nerve pain. 

Will update then.

thanks again.


----------



## Amtchim (Sep 7, 2013)

Hello, 
My burmese cat Kuria suffers from the same condition.

He was born in the UK but his owner took him to Canada where I adopted him.
4 years ago he had his first episode where he ripped his tongue and part of his face but we were eventually able to control the pain and the seizures (after much research, as no one has heard about this condition in Canada).

We used gabapentin in a solution and it did control the seizures. To relieve the pain we used Valium.

I though this was over... but it happened again in June and now yesterday.
At this point he cannot eat because even salivating causes an episode and he has lost quite a bit of weight.

I am so sad to see my little cat in such pain and i am starting to consider euthanasia.
Really sorry to read that someone else is going through this... Maybe we can share ideas and solutions?


----------



## Bekibee (Jan 29, 2014)

I took on an elderly Burmese boy who has fops.
After talking with the previous owner it's clear this condition has been causing him problems since about the age of 12. He is nearly 16 now.
He has sporadic episodes of this and the previous owner went to vets who did not diagnose this. He had most of his teeth removed. 
He has a sensitive belly so only ever eats hypo biscuits and turkey pate so I think the pate sometimes gets stuck and this may trigger.
Now I have metacam at home and give him as and when he is struggling.
He was fine this time for 8 weeks with no real outbreak.
But on Saturday he started again and has been doing this for 5 days on and off.
I give him probably a little more painkiller than I should but he is in immense pain.
I don't want to try the anti epileptic drug because of the way it would affect him and he has been through a lot as of late.
My concern is the damage he is doing to his thumb and now to his leg. It's like he is scraping his leg with his only upper canine. 
He looks as if he is trying to pull it out.
I wrap him in a blanket when I'm with him and he grabs the blanket with his teeth and pulls on it as hard as he can.
I can't hold his feet still, I've tried and have been accidentally ripped open by the sheer force of his movements. 
I've contacted the researcher and have the paperwork and swabs to send back once I've got the parents pedigree details from the previous owner.
I'm worried as I have two other Burmese who are not displaying any fops behaviour but if they do I'll know to get them insured for life! 
The referral to the fops researcher is a whopping £250 for one appointment and it's miles away from me.
It's such a shame vets and specialist charge this and expect cats to travel. 
More research is needed but if insurance doesn't cover it - how are people supposed to get there for more data to be collected and help gained for these poor cats.
I really want to know if anyone has a cat that has wounded its law or leg - how can you stop that? What's the best solution to washing it? Or should I leave it ?


----------



## maryrottawa (Apr 21, 2014)

Hi, all -

For your information and any information you can give me ---

My cat is a Russian blue cross - I found this page searching orofacial pain.

He is 4 years old with sudden onset of pain when trying to eat beginning last fall. Took him to my vet - transient improvement with SoluMedrol (methylprednisolone). He was a feral kitten - no hope of catching him to take him back to my vet when symptoms recurred a few days later but I was desperate to do something to ease his pain. A litter mate of his (born indoors) has recurrent sneezing / nasal discharge for the last year or so - seems like a feline herpes virus problem and mostly has been well with lysine supplements. I tried adding powdered lysine to lactose-free milk (hoping he might drink if he was afraid to eat) and to a mix of canned cat food and warm water. He has had weeks at a time when he is apparently fine with only the rare moment of suddenly snarling and seeming to try to swallow but he also has flares lasting days to a week or so when he is fearful approaching the food or milk / water dishes. I have tried adding some vitamin D to the mix and even tried adding a small amount of weak antiihistamine. Still a work in progress.

This is very much, as someone posted, like trigeminal neuralgia in humans and I am increasing coming to believe that that, too, may be herpes virus- related.Interesting that gabapentin has been useful. 

Has anyone identified the specific genetic issue?

Mary


----------



## nickijg (Nov 2, 2014)

Hi, how did you get on with murph? My cat misty is going through the exact same thing, and I don't k ow what to do for the best. Shall I have her out down? It's heartbreaking to see her in pain, and yet there are times when awake that a hint of the old misty comes out. But she's not herself most of the time, in pain having episodes and hiding away. Really don't know what to do for the best.


----------



## Suzyscotland (Aug 30, 2013)

Nickijp:

It has been a while since i last posted on here regarding Murph and his fops. 

I took him to Edinburgh Vet School to be assessed by a feline specialist. He agreed with my vet in regards to treatment - the canine anti-epileptic and metacam. Very soon after this assessment, Murph's symptoms started to reduce then all of a sudden completely stopped. He had this condition for a month. I took him back to vet who was unable to offer any explanation for this. We continued his medication for a further month then gradually reduced it until he was medication free. One year on, he continues to have no further episodes and is back to being his usual happy, loving, chatty and playful self. 

I certainly could not answer your question regarding putting your cat down...if i was you i would take the advice of your vet. I was very close to requesting euthanasia but thankfully my boy made an incredible recovery. If he had not, i am in no doubt he would have been put down due to his distress and pain...it is no way for a cat to live...a miserable existence. I significantly battled with the thought of having him put down but i had to remind myself to put my feelings to one side and do what would be the best for him...not me. Please discuss with your vet but it may be worthwhile asking your vet to try your cat on the medication regime Murph was on...this was also deemed to be the best treatment by the specialist at Edinburgh Vet School which is one of the UK's leading treatment centres. 

My heart goes out to you and your cat...i know how painful it is to watch and feeling helpless to do anything but it must be even more awful for the cats whom experience this awful condition. 

Please keep us up to date with how things go.....best of luck..xxx


----------



## Suzyscotland (Aug 30, 2013)

I also meant to add....

- Edinburgh Vet School advised stress is a huge trigger of fops. I initially could not think of anything that would potentially cause Murph worry or stress. Then one day, i saw my neighbour's new cat shouting obscenities at Murphy through my dining room window. Murph returned the foul language. He was on the outside windowsill and Murphy was on the inside window ledge. I bought some opaque film that can be placed over windows to prevent each cat seeing the other through the glass. I obviously do not know if this was the trigger but his symptoms did reduce shortly afterwards. Oddly, they get on well when in direct contact...perhaps through glass, being unable to smell each other, they immediately deemed the other to be an intruder. It may be worth having a think of any changes, no matter how small or daft, that could potentially be upsetting your cat. 

- apparently the research into genetics is continuing. Murph's bloods and pedigree history was sent to a researcher in England. This researcher is only looking at Burmese genetics and associated fops. I do not know when she will have the findings of this research. Once i am aware, i will post on here.


----------



## History_65 (Jul 26, 2016)

Suzyscotland said:


> Nickijp:
> 
> It has been a while since i last posted on here regarding Murph and his fops.
> 
> ...


Thanks so much for posting. Especially after the positive outcome!

My 9 year old chocolate Burmese Maisie seems to have developed FOPS immediately after dental surgery last Friday. (One canine and 7 other teeth removed from top, bottom, right and left). An hour or so after getting her home, she started frantically clawing at her face with both paws. Luckily I had clipped her claws in advance (she's fine with me doing that) and there was no damage to her face. I physically held her paws away and she soon zonked out completely and went to sleep. I phoned emergency vet and got a buster collar but that was a failure as she has a small head. So spent much of the weekend holding her paws and soothing her while episodes played out.

On Monday (yesterday) she was put on Phenolyptil 6.25MG twice daily in addition to the Loxicom once daily and antibiotics for her surgery. She's a bit zonked out but still herself. I don't know if either of those meds are high risk?

So we are currently 4 days in, one day into pheno, and I am obviously worried about the eventual outcome. Episodes still fairly frequent (worse this evening than this morning) but nothing like as frantic. They are brief and sometimes she can go for a couple of hours without one. But I can't leave her alone and work full time, so bit of a problem!

I wonder if anything came off the research that was mentioned? And also if Murph continued to be well after his recovery?

I'll post this in its own thread as it's a long time since you posted and you may not be active on here any more. But thanks for posting as you did.


----------



## tiffythetyphoon (Jan 14, 2017)

hi all. i don't have a cat but just wanted to give you some info on FOPS or Trigeminl Neuralgia. i was at physio yesterday and she wanted to know why i take so many tablets, i told her i have Trigeminal Neuralgia and she told me she had Burmese cat that had this and was treated with Amitriptyline, worked for a while because with all meds your body gets used to them, she tried another tablets but didn't say the name, eventually the cat passed as the meds affected his kidneys. Burmese cats are prone to this disease.

so, i have Trigeminal Neuralgia which is known as 'the suicide disease' and quite rightly so. i am so sorry for anyone who has a pet with this it is the worst known pain to mankind and the medical world. although it is a nerve in the brain that misfires it is commonly brought on by dental work, BUT is nothing to do with the teeth, PLEASE DO NOT HAVE YOUR CATS TEETH PULLED OUT as it will NOT make a jot of difference, the trigeminal nerves run along the teeth and in the face and not just the teeth it strikes, its in the eyes, nose, migraines, piercing earache all over the head basically. we have remission times but these get shorter and shorter and the attacks get worse and worse and there is no cure for it, we can have treatments but they can either work or not work or make it worse, if they do work its usually only for a short time, then they turn to brain surgery which can result in the same above, you could end up with something called Anesthesia Dolorosa which is worse! i'm lucky, i have this on BOTH sides of my face!! the migraines are vile and not a normal migraine, i have the lightening strikes in my teeth, top and bottom set or they thump and you don't know when they are going to strike, some cannot eat, brush the teeth, wash their hair, go out, even the slight touch or breeze can set off and attack. theres no point in going to A&E because they cannot treat it and most docs don't even know about this disease! someone mentioned herpes being connected, Trigeminal Neuralgia Type 2 is from that which is different from classic, it is a constant dull throb in teeth and burning in the face which there really is no treatment for. There is no painkiller in the world that can help this, no morphine, nothing, it has to be treated with anti epilepsy meds. they say TN is rare, its not, more and more people are being diagnosed every day and we are sent to Neurologists and have MRI scans to have a look at the nerve, sometime there can be tumours on the nerve pressing it. unfortunately, i have mapped the rest of my short life out. unfortuantely, we have no kind of euthanasia.

i do not mean to come on here and scare you or anything else, i just want to tell you how your pet is feeling, i know how this will sound but please, please think of the pain your pet is in, believe me its the worst pain in the world and even on meds we still get attacks! please consider the quality of life it has which is zero. please think of euthanasia, god forbid if my dog ever gets this, i will have him put to sleep in a heartbeat because i know how bad this is.

thanks for reading. and once again, i don't mean to upset anyone.


----------



## Rosemarie Loft (Jan 9, 2017)

tiffythetyphoon said:


> hi all. i don't have a cat but just wanted to give you some info on FOPS or Trigeminl Neuralgia. i was at physio yesterday and she wanted to know why i take so many tablets, i told her i have Trigeminal Neuralgia and she told me she had Burmese cat that had this and was treated with Amitriptyline, worked for a while because with all meds your body gets used to them, she tried another tablets but didn't say the name, eventually the cat passed as the meds affected his kidneys. Burmese cats are prone to this disease.
> 
> so, i have Trigeminal Neuralgia which is known as 'the suicide disease' and quite rightly so. i am so sorry for anyone who has a pet with this it is the worst known pain to mankind and the medical world. although it is a nerve in the brain that misfires it is commonly brought on by dental work, BUT is nothing to do with the teeth, PLEASE DO NOT HAVE YOUR CATS TEETH PULLED OUT as it will NOT make a jot of difference, the trigeminal nerves run along the teeth and in the face and not just the teeth it strikes, its in the eyes, nose, migraines, piercing earache all over the head basically. we have remission times but these get shorter and shorter and the attacks get worse and worse and there is no cure for it, we can have treatments but they can either work or not work or make it worse, if they do work its usually only for a short time, then they turn to brain surgery which can result in the same above, you could end up with something called Anesthesia Dolorosa which is worse! i'm lucky, i have this on BOTH sides of my face!! the migraines are vile and not a normal migraine, i have the lightening strikes in my teeth, top and bottom set or they thump and you don't know when they are going to strike, some cannot eat, brush the teeth, wash their hair, go out, even the slight touch or breeze can set off and attack. theres no point in going to A&E because they cannot treat it and most docs don't even know about this disease! someone mentioned herpes being connected, Trigeminal Neuralgia Type 2 is from that which is different from classic, it is a constant dull throb in teeth and burning in the face which there really is no treatment for. There is no painkiller in the world that can help this, no morphine, nothing, it has to be treated with anti epilepsy meds. they say TN is rare, its not, more and more people are being diagnosed every day and we are sent to Neurologists and have MRI scans to have a look at the nerve, sometime there can be tumours on the nerve pressing it. unfortunately, i have mapped the rest of my short life out. unfortuantely, we have no kind of euthanasia.
> 
> ...


I had to reply to this. I sympathise with your own pain but it's important not to assume the same for cats. My own Burmese had severe FOPS for about four weeks. It was so bad that the vet had to cut her claws right down and bandage her up tightly to prevent her doing increasingly serious damage to her face. Her reactions were so strong she couldn't be held and caused us some quite severe damage too. Yet after four weeks it stopped. She was in complete remission for 15 and a half years. By complete remission, I mean complete and with no drugs. Then it started out of the blue when she was approaching her 16th birthday, with everything else in her working perfectly. We recognised the signs from those years ago and started treatment quickly. She's on a very, very tiny dose of epiphen twice a day, and after two weeks of attacks, for the past ten days there has not been a single sign of it happening. She is happy, calm, purrs, plays, is interested in life, relaxed and today spent the afternoon quietly sunbathing in the window before coming to find us for dinner.

An edit and update: our Burmese continues to be symptom-free after nearly a month.


----------



## racammann (Mar 20, 2011)

I have a burmese cat who is 22 months old. She has had several short episodes of face clawing but since they only lasted a few minutes each and no damage was done. I presumed she just had something stuck in her mouth and managed to clear it on her own.
Then last night I came home from work and found her in great distress, clawing at her mouth, opening her mouth really wide, sticking her tongue right out and getting both paws in there and ripping her mouth to shreds, making herself bleed all from her chin and gums and the roof of her mouth. Took her straight to the vets who injected her with painkillers and an anti inflammatory. Took her home and tried to persuade her to eat some soft food (she licked the jelly off but wasn't interested in chewing the meat), trimmed her claws and put a buster collar on and left her to chill out overnight. Today she's back to normal. Collar is off and she's had a good wash without any reoccurance of symptoms. Although it hasn't been formally diagnosed by a vet, I'm now suspecting it was an episode of FOPS which breaks my heart. She must have been in so much pain. I sincerely hope she doesn't have another attack any time soon, it was heartbreaking to watch. Time will tell....


----------



## Rosemarie Loft (Jan 9, 2017)

Please don't panic. It's possible all will be well. Our Hestia (blue Burmese, described in my earlier posts) has now been completely symptom free for six months after a horrible month where she did exactly as you are describing for a month. To be honest, we don't know if they are in pain, but they are clearly stressed and shocked by what happens. I found that cradling Hestia shortened the episodes and I was able to hold her front paws to stop the worst of the damage. We could see in her eyes when the attack was subsiding in a couple of minutes. We also bandaged her paws (the vet bandage that is self adhesive) to help prevent damage to face and paws. Our vet prescribed the following regime (Hestia weighs 4 kilos exactly): morning, Gabapentin 5 ml, Epiphen 0.15 ml (teeny amount); same in the evening; bedtime, 4 units Metacam in case there was an underlying problem (which was reduced to 3, then 2). Two days in with the Epiphen the episodes started to subside; four days later they left and have not returned. Do we know if the medication is the reason? No, but it's a big coincidence and as the vet says, if it's working and doing her no harm, he's inclined to keep her on it. Gabapentin comes in suspension (liquid) form, which is much easier, but very expensive (about £140/bottle). For us (and PetPlan, huzzah!) it's worth it not to have to put her through pills which she hates. Hestia is a happy, relaxed, playful girl again, with a lovely strong appetite, rolling for her tummy rubs and playing with her toys. One of our vets is a Burmese fan and has had his own with FOPS so was able to have long discussions with us about options. I don't know that the same regime will work for you, but thought I would share it with you to share with your vet if the episodes continue. Don't be too worried about any short-term lethargy in your lovely Burmese: we saw that our Hestia was a bit stunned by it all and took a few weeks to get back to normal. One last thing - not all vets have seen FOPS before, so if you can and she's not doing herself too much damage, see if you can record it on your phone to take with you to help diagnosis. Hope all works well: don't panic if it doesn't go away immediately. The month that Hestia presented her symptoms was long and hard, but she's happy and strong now.


----------



## Jackie Mayes (Oct 30, 2017)

I just wanted to share my experience as this forum has been so helpful. My Henry is a part Norwegian Forest cat aged 18 who I adopted last August. In January this year he started pawing at his mouth. Off to the vets and diagnosis was gingivitis and a couple of bad teeth. Dental x-rays also showed retained roots. All offending teeth and roots were removed and all was good for a couple of months. The next issue was a raw patch on his neck. On the right side where he had been pawing. This looked suspicious so we completed a number of different treatments including creams and ultimately was cleared by using Ermidra to keep moisturised. Two months later and he is pawing again with horrid sucking noises and tongue movements. Back to the vets and all remaining rear teeth removed and he then had a course of laser therapy on his mouth. He also had a short period on Metacam. This was successful for a time. Then in August we were back to pawing. More laser therapy but this time it aggravated the situation so we stopped after three sessions. More Metacam but this time it was not working so we had a referral to a neurologist and a top veterinary dental surgeon in Alton, Hampshire. By now I was well on the way to believing this was FOPS. There was stress in the home as his best friend had been diagnosed with a bladder tumour and was undergoing chemotherapy. Best guess from the specialists was indeed FOPS and he was put on Gaberpentin. This helped a bit in that he put on weight but was still pawing. Thursday last week was awful. He did not eat or drink all day and was clawing rather than just pawing at his mouth. Very distressing for both of us. That us when I found this forum and when I took him to the vets on Friday I said about the experience of the lady in Edinburgh and asked for a combination of phenobarbital and Metacam. I am pleased to report that I woke this morning to my handsome boy lying beside my bed rather than being in hiding. He came downstairs and asked for breakfast and has eaten well with just a few sucking noises but no pawing. My vet said he has had very poor results using Gaberpentin for pain issues which is worth noting. Fingers crossed that after a long journey we just might be getting there. Thank you to those that posted their experiences as this has been a great help in knowing we are not alone. Sorry this is long but hopefully might help someone else.


----------



## Mandamushkin (Oct 31, 2017)

Jackie Mayes said:


> I just wanted to share my experience as this forum has been so helpful. My Henry is a part Norwegian Forest cat aged 18 who I adopted last August. In January this year he started pawing at his mouth. Off to the vets and diagnosis was gingivitis and a couple of bad teeth. Dental x-rays also showed retained roots. All offending teeth and roots were removed and all was good for a couple of months. The next issue was a raw patch on his neck. On the right side where he had been pawing. This looked suspicious so we completed a number of different treatments including creams and ultimately was cleared by using Ermidra to keep moisturised. Two months later and he is pawing again with horrid sucking noises and tongue movements. Back to the vets and all remaining rear teeth removed and he then had a course of laser therapy on his mouth. He also had a short period on Metacam. This was successful for a time. Then in August we were back to pawing. More laser therapy but this time it aggravated the situation so we stopped after three sessions. More Metacam but this time it was not working so we had a referral to a neurologist and a top veterinary dental surgeon in Alton, Hampshire. By now I was well on the way to believing this was FOPS. There was stress in the home as his best friend had been diagnosed with a bladder tumour and was undergoing chemotherapy. Best guess from the specialists was indeed FOPS and he was put on Gaberpentin. This helped a bit in that he put on weight but was still pawing. Thursday last week was awful. He did not eat or drink all day and was clawing rather than just pawing at his mouth. Very distressing for both of us. That us when I found this forum and when I took him to the vets on Friday I said about the experience of the lady in Edinburgh and asked for a combination of phenobarbital and Metacam. I am pleased to report that I woke this morning to my handsome boy lying beside my bed rather than being in hiding. He came downstairs and asked for breakfast and has eaten well with just a few sucking noises but no pawing. My vet said he has had very poor results using Gaberpentin for pain issues which is worth noting. Fingers crossed that after a long journey we just might be getting there. Thank you to those that posted their experiences as this has been a great help in knowing we are not alone. Sorry this is long but hopefully might help someone else.


Hi Jackie, thank you for your post, I hope you don't mind me contacting you? I hope your Henry is doing okay today? I have a cat with FOPS and it has been an ongoing nightmare since March of this year. I have only had him since October last year (10 years old - now 11) I adopted him and his brother who weren't being looked after properly and took them in before winter as they lived outside. Following tooth surgery in March it all kicked off and started with him mutilating and ripping off his lips. More teeth removed, they broke his jaw etc, etc Long story short, he is currently on 60mls Gabapentin (30 morning, and 30 night) liquid version and a small quantity of epiphen (dog Epilepsy drug). I was intrigued to hear about your comment about Gabapentin not being good for pain issues. My cat is a happy, playful boy full of life but he still has around 4 episodes a day that last 20 - 50 seconds each time. He meows for his breakfast in the morning so its sets one off, and he does it the other three times a day that I have to give him the medication - he can go nuts and breaks my heart. The vets wanted to prescribe some kind of human epileptic medicine but I said no as they told me there is little research on what side effects it can cause to cats and I don't want that. I am aware that both of the drugs he is currently on especially the epiphen can cause liver problems. Has the vet said anything to you about possible side affects of the phenobarbital? I don't think you can use Metacam for prolonged use as this can cause liver/kidney failure? I would really, really be interested to hear how you cat is doing and if the vets knew how long medication would be for? I am guessing if it cures it in the short term or at least puts him in remission it wouldn't be for long? I am willing to try anything for my baby. I may have only had him for a year but we love him so much and breaks our hearts to see him this way. Any advice would be truly appreciated - it would be great to know how Henry is doing and I can then approach my vet too as Tiki is due blood tests very soon to make sure the drugs aren't causing other problems (I am in Dorset). I can't thank you enough for posting this, it is such a relief to hear we aren't the only ones. (sorry mine is a long post too!!!!) Kind regards, Mandy


----------



## Jackie Mayes (Oct 30, 2017)

I know this thread is for Burmese cats but wanted to add in Henry's story so that others who have non Burmese cats who stumble across this thread know that it can affect other breeds. I am slowly getting my boy back. The gabapentin knocked him so much he spent most of his time in hiding. Yesterday evening he spent curled up beside me.


Mandamushkin said:


> Hi Jackie, thank you for your post, I hope you don't mind me contacting you? I hope your Henry is doing okay today? I have a cat with FOPS and it has been an ongoing nightmare since March of this year. I have only had him since October last year (10 years old - now 11) I adopted him and his brother who weren't being looked after properly and took them in before winter as they lived outside. Following tooth surgery in March it all kicked off and started with him mutilating and ripping off his lips. More teeth removed, they broke his jaw etc, etc Long story short, he is currently on 60mls Gabapentin (30 morning, and 30 night) liquid version and a small quantity of epiphen (dog Epilepsy drug). I was intrigued to hear about your comment about Gabapentin not being good for pain issues. My cat is a happy, playful boy full of life but he still has around 4 episodes a day that last 20 - 50 seconds each time. He meows for his breakfast in the morning so its sets one off, and he does it the other three times a day that I have to give him the medication - he can go nuts and breaks my heart. The vets wanted to prescribe some kind of human epileptic medicine but I said no as they told me there is little research on what side effects it can cause to cats and I don't want that. I am aware that both of the drugs he is currently on especially the epiphen can cause liver problems. Has the vet said anything to you about possible side affects of the phenobarbital? I don't think you can use Metacam for prolonged use as this can cause liver/kidney failure? I would really, really be interested to hear how you cat is doing and if the vets knew how long medication would be for? I am guessing if it cures it in the short term or at least puts him in remission it wouldn't be for long? I am willing to try anything for my baby. I may have only had him for a year but we love him so much and breaks our hearts to see him this way. Any advice would be truly appreciated - it would be great to know how Henry is doing and I can then approach my vet too as Tiki is due blood tests very soon to make sure the drugs aren't causing other problems (I am in Dorset). I can't thank you enough for posting this, it is such a relief to hear we aren't the only ones. (sorry mine is a long post too!!!!) Kind regards, Mandy


Hi Mandy

So sorry you are going through this. I have had a lot of cats over the years as I adopt the oldies and honestly this is the worst problem I have experienced. Epiphen is the generic name for phenobarbital so you are already on that. We are using pills rather than liquid as Henry is obliging about pills. We are currently slowly reducing the gabapentin and as of today my 6 kilo boy had 12.5mg this morning alongside 7.5mg of phenobarbital. This evening he had a further 7.5mg phenobarbital plus a 5 kilo dose of Metacam. My vet believes in starting with low doses of medications as they are brain altering as used for epilepsy. A little pawing tonight and sucking noises but nothing too dramatic. Also by reducing the gabapentin I am getting my boy back in that he is currently curled up beside me. When he was on 25mg gabapentin twice a day as recommended by the specialists he was constantly in hiding and although eating more was still pawing many times a day. Long term use of any drug is bad although I had a cat on low dose Metacam for five years for arthritis and this had no adverse effect on her kidneys. She died aged 18. Currently the plan with my vet is we will have a check up after three weeks unless anything untoward happens. My vet worried about gabapentin as said one of his doggie patients that was prescribed it by a specialist for arthritis is still having problems walking but now it is impossible to tell if it is the arthritis or the gabapentin that is causing this. I noticed Henry's walking was odd on the high dose. Unfortunately I feel no one really knows much about this illness and treatment is very much trial and error based on best guess. Each cat seems to be different for example Henry has rarely caused himself any damage. I believe the idea is to break the cycle and you have been experiencing this almost as long as we have. All I can say is that Henry is the best he has been in a long time but we have had periods of respite during the year so I am not counting on this right now. I have also bought a feliway diffuser. Something I have never used before but thought it might be worth a try as there is a train of thought that this can be kicked off by stress. Early days for us on this regime as we only started Friday but so far promising. My vet said he dies have another medication available but it is horribly expensive £400 (yes that's right) a month for an average sized dog. I wish you luck with Tiki. They steal our hearts so quickly. I will post updates here as we progress. So sorry for you and your boy


----------



## Mandamushkin (Oct 31, 2017)

Jackie Mayes said:


> I know this thread is for Burmese cats but wanted to add in Henry's story so that others who have non Burmese cats who stumble across this thread know that it can affect other breeds. I am slowly getting my boy back. The gabapentin knocked him so much he spent most of his time in hiding. Yesterday evening he spent curled up beside me.
> 
> Hi Mandy
> 
> So sorry you are going through this. I have had a lot of cats over the years as I adopt the oldies and honestly this is the worst problem I have experienced. Epiphen is the generic name for phenobarbital so you are already on that. We are using pills rather than liquid as Henry is obliging about pills. We are currently slowly reducing the gabapentin and as of today my 6 kilo boy had 12.5mg this morning alongside 7.5mg of phenobarbital. This evening he had a further 7.5mg phenobarbital plus a 5 kilo dose of Metacam. My vet believes in starting with low doses of medications as they are brain altering as used for epilepsy. A little pawing tonight and sucking noises but nothing too dramatic. Also by reducing the gabapentin I am getting my boy back in that he is currently curled up beside me. When he was on 25mg gabapentin twice a day as recommended by the specialists he was constantly in hiding and although eating more was still pawing many times a day. Long term use of any drug is bad although I had a cat on low dose Metacam for five years for arthritis and this had no adverse effect on her kidneys. She died aged 18. Currently the plan with my vet is we will have a check up after three weeks unless anything untoward happens. My vet worried about gabapentin as said one of his doggie patients that was prescribed it by a specialist for arthritis is still having problems walking but now it is impossible to tell if it is the arthritis or the gabapentin that is causing this. I noticed Henry's walking was odd on the high dose. Unfortunately I feel no one really knows much about this illness and treatment is very much trial and error based on best guess. Each cat seems to be different for example Henry has rarely caused himself any damage. I believe the idea is to break the cycle and you have been experiencing this almost as long as we have. All I can say is that Henry is the best he has been in a long time but we have had periods of respite during the year so I am not counting on this right now. I have also bought a feliway diffuser. Something I have never used before but thought it might be worth a try as there is a train of thought that this can be kicked off by stress. Early days for us on this regime as we only started Friday but so far promising. My vet said he dies have another medication available but it is horribly expensive £400 (yes that's right) a month for an average sized dog. I wish you luck with Tiki. They steal our hearts so quickly. I will post updates here as we progress. So sorry for you and your boy


Thank you so much for getting back to me, it's nice to know we aren't the only ones going through this. The vets did have Tiki on the tablets but the vets couldn't get them again. We had an awful time too at first, they told me to give him 50mg of Gabapentin in the morning (a whole pill) then the same in the evening. It was the saddest thing you have ever seen. He couldn't move and I seriously considered having to say goodbye as this would have been no life for a cat. I had a bit of a fit hence the change in dose but I think he is getting used to the smaller dose now and it's not working as well. As well as that the liquid has just cost over £250. I don't mind but if it's not working there is no point! I will speak to the vet as his dose of phenobarbital is extremely low compared to yours. I am not sure how much Tiki weighs now as the gabapentin is making him put weight on but he was nearly 6kg and prescribed only 2mg of epiphen. I tried also tried the felliway and it didn't seem to make an awful lot of a difference to him but he is quite highly strung. I am not actually sure what breed Tiki is as he was inherited. He is a marble tabby silverish colour but he definitely has another breed (or two) in him. I am so glad I did adopt him as I don't think he would have made it if he still lived with the other people. What a sad condition this is for both them and us. I can't thank you enough for posting back to me and I hope you and Henry find a solution soon, I will let you know if any improvement once I have seen my vet again. Once again, thank you


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Thank you so much for getting back to me, it's nice to know we aren't the only ones going through this. The vets did have Tiki on the tablets but the vets couldn't get them again. We had an awful time too at first, they told me to give him 50mg of Gabapentin in the morning (a whole pill) then the same in the evening. It was the saddest thing you have ever seen. He couldn't move and I seriously considered having to say goodbye as this would have been no life for a cat. I had a bit of a fit hence the change in dose but I think he is getting used to the smaller dose now and it's not working as well. As well as that the liquid has just cost over £250. I don't mind but if it's not working there is no point! I will speak to the vet as his dose of phenobarbital is extremely low compared to yours. I am not sure how much Tiki weighs now as the gabapentin is making him put weight on but he was nearly 6kg and prescribed only 2mg of epiphen. I tried also tried the felliway and it didn't seem to make an awful lot of a difference to him but he is quite highly strung. I am not actually sure what breed Tiki is as he was inherited. He is a marble tabby silverish colour but he definitely has another breed (or two) in him. I am so glad I did adopt him as I don't think he would have made it if he still lived with the other people. What a sad condition this is for both them and us. I can't thank you enough for posting back to me and I hope you and Henry find a solution soon, I will let you know if any improvement once I have seen my vet again. Once again, thank you


Likewise I am glad I adopted Henry last year as his previous owner had not taken him to the vets in years and did not even know what his brother died of.

In terms of medication as Henry seems to be perfect in the morning I am considering splitting the gabapentin dosage between night and morning and see how we get on. High gabapentin certainly knocked Henry out and he was so miserable. However with a low dose combined with phenobarbital we do seem to be hitting a sweet spot so a little playing around over the next couple of days is probably worth trying. My vet wanted me to eliminate gabapentin altogether over the next week so a smaller night and morning dose is heading in that direction anyway and will be interesting to see if this helps. I will keep you posted on progress but it normally takes 2 or 3 days to know the affect of changes to dosages of these medications. Also if your vet cannot get gabapentin pills then get a prescription from him and this can be filled at Boots pharmacy. I was told this by a Boots pharmacist this week when I was purchasing lactalose also for Henry as he is constipated. (This has been prescribed by the vet in the past so I have a record of dose required). She also said they would probably be cheaper.


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Thank you so much for getting back to me, it's nice to know we aren't the only ones going through this. The vets did have Tiki on the tablets but the vets couldn't get them again. We had an awful time too at first, they told me to give him 50mg of Gabapentin in the morning (a whole pill) then the same in the evening. It was the saddest thing you have ever seen. He couldn't move and I seriously considered having to say goodbye as this would have been no life for a cat. I had a bit of a fit hence the change in dose but I think he is getting used to the smaller dose now and it's not working as well. As well as that the liquid has just cost over £250. I don't mind but if it's not working there is no point! I will speak to the vet as his dose of phenobarbital is extremely low compared to yours. I am not sure how much Tiki weighs now as the gabapentin is making him put weight on but he was nearly 6kg and prescribed only 2mg of epiphen. I tried also tried the felliway and it didn't seem to make an awful lot of a difference to him but he is quite highly strung. I am not actually sure what breed Tiki is as he was inherited. He is a marble tabby silverish colour but he definitely has another breed (or two) in him. I am so glad I did adopt him as I don't think he would have made it if he still lived with the other people. What a sad condition this is for both them and us. I can't thank you enough for posting back to me and I hope you and Henry find a solution soon, I will let you know if any improvement once I have seen my vet again. Once again, thank you


Good luck with Tiki and I do hope my experiences help. Especially if we get Henry's medication right it is something to talk to your vet about


----------



## Mandamushkin (Oct 31, 2017)

Jackie Mayes said:


> Good luck with Tiki and I do hope my experiences help. Especially if we get Henry's medication right it is something to talk to your vet about


Hi Jackie, Henry is absolutely gorgeous. What a little fluff ball  Tiki's brother (not blood) is a ginger siberian so looks really similar to Henry. I also have two cats at work, a tabby called Pusskers who is 22 and Maise who is a norweigan forest cat who is 7. Both my home cats and work make my life complete. You have been so amazing with helping me, like you said, the vets know so little about this condition that everything is so hit and miss. You have made me feel a lot more positive for both our health and Tiki's. As he is only 11 he hopefully has a good few years left with us and I don't want him to carry on going through this. I am going to the vets on Monday to see the vet that has been dealing with it all since March. I hope you don't mind me asking you a few more questions? Does Henry stay on the medication, or when it subsides does he get weened off? Is Henry on Epiphen or is it another type of phenobarbital? Tiki is on the epiphen liquid and he absolutely hates it, which stresses him out and makes him paw/claw his face again. Thank you so much for the advice about the tablets too, would never have thought about that! Just shows what talking to other people can do  I hope Henry is still on the mend, and you can enjoy your cuddles again. Hugest thank you's for firstly posting on here in the first place and for all of the help and advice you have been able to give me this week. Thank you from the bottom of our hearts and Tiki sends his love to Henry x


----------



## Mandamushkin (Oct 31, 2017)

Tiki


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Tiki


What a handsome boy.

It is such early days for us that I don't know what the long term medication regime will be. I think the gabapentin dose Tiki is on is way too high. If you want to phase this out it must be phased out gradually. Henry went to the specialists on 18th September and that is when he was put on 25mg three times a day. I did a lot of reading and thought this was too high so followed one veterinary report and started him on 12.5mg twice a day. After three weeks I had to increase to 25mg twice a day as it was not helping. Henry went into hiding at this point and the pawing continued. Thursday last week was awful. Now we are less than a week into the phenobarbital (yes Epiphen) and Metacam regime and it is like a miracle. He is almost back to normal. He did not paw last night so I have decided I will remove the gabapentin and so only gave him 6.25mg this morning. The Epiphen we have are 30mg pills which I cut up and he has just 7.5mg each night and morning along with a 5 kilo dose of Metacam at night. The difference in 6 days is incredible and I would absolutely recommend you push your vet towards this. No guarantees but has to be worth it. No idea right now how long he will be in this but hopefully will know more when I see my vet in 2 weeks.

Good luck and give Tiki a hug.


----------



## Mandamushkin (Oct 31, 2017)

Jackie Mayes said:


> What a handsome boy.
> 
> It is such early days for us that I don't know what the long term medication regime will be. I think the gabapentin dose Tiki is on is way too high. If you want to phase this out it must be phased out gradually. Henry went to the specialists on 18th September and that is when he was put on 25mg three times a day. I did a lot of reading and thought this was too high so followed one veterinary report and started him on 12.5mg twice a day. After three weeks I had to increase to 25mg twice a day as it was not helping. Henry went into hiding at this point and the pawing continued. Thursday last week was awful. Now we are less than a week into the phenobarbital (yes Epiphen) and Metacam regime and it is like a miracle. He is almost back to normal. He did not paw last night so I have decided I will remove the gabapentin and so only gave him 6.25mg this morning. The Epiphen we have are 30mg pills which I cut up and he has just 7.5mg each night and morning along with a 5 kilo dose of Metacam at night. The difference in 6 days is incredible and I would absolutely recommend you push your vet towards this. No guarantees but has to be worth it. No idea right now how long he will be in this but hopefully will know more when I see my vet in 2 weeks.
> 
> Good luck and give Tiki a hug.


Thank you  what an absolute beauty Henry is! Thank you again, I will try anything and as you have had such brilliant results I am more than happy to give it a go. That seems to be the thing with Gapapentin, I questioned the dose too after we thought he was seriously going to die after having 100mg in one day. I stayed up with him all night as was convinced I was going to lose him. Thats how I got the vet to lower the dose as I went crazy! He was on 50ml a day but it just doesnt work anymore. Last night he was a nightmare and I resorted to putting an elizabethan collar back on him as I was worried about the damage. He finally settled down after around two hours but this is the worst he has been for weeks. Anyway I am seeing the vet Monday so will keep you posted, and likewise I would love for you to let me know how Henry is. Lets hope our experiences may be able to help other people and their babies in the long term. Thank you for all of your wonderful advice.


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Thank you  what an absolute beauty Henry is! Thank you again, I will try anything and as you have had such brilliant results I am more than happy to give it a go. That seems to be the thing with Gapapentin, I questioned the dose too after we thought he was seriously going to die after having 100mg in one day. I stayed up with him all night as was convinced I was going to lose him. Thats how I got the vet to lower the dose as I went crazy! He was on 50ml a day but it just doesnt work anymore. Last night he was a nightmare and I resorted to putting an elizabethan collar back on him as I was worried about the damage. He finally settled down after around two hours but this is the worst he has been for weeks. Anyway I am seeing the vet Monday so will keep you posted, and likewise I would love for you to let me know how Henry is. Lets hope our experiences may be able to help other people and their babies in the long term. Thank you for all of your wonderful advice.


So to be clear. Right now Henry is on 7.5mg 1/4 of 30mg pill) night and morning of Epiphen as close to 12 hours apart as possible. In the evening he also has 5 kilo dose of Metacam. The gabapentin really does not come into this now as it is so low as I slowly decrease so that it can be stopped.

The gabapentin must be reduced gradually or you risk seizure.

I cannot guarantee this will work for you but as we have been through similar experiences for so many months it has to be worth a shot.

Not sure what sort of relationship you have with your vet but if it is a good one maybe you could get an email address and send over a link to our conversations. My vet is great and open to email updates. Everyone is working a bit in the dark on this so input from our experiences may help.


----------



## Jackie Mayes (Oct 30, 2017)

Henry is absolutely back to being Henry in just one week of phenobarbital combined with Metacam. For the first time in over two months he has been able to eat his favourite food with no awkward mouth movements and no discomfort. He has not been pawing at all for 2 days now. I am just so thrilled to have my boy back after such a tumultuous 10 months.


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Thank you  what an absolute beauty Henry is! Thank you again, I will try anything and as you have had such brilliant results I am more than happy to give it a go. That seems to be the thing with Gapapentin, I questioned the dose too after we thought he was seriously going to die after having 100mg in one day. I stayed up with him all night as was convinced I was going to lose him. Thats how I got the vet to lower the dose as I went crazy! He was on 50ml a day but it just doesnt work anymore. Last night he was a nightmare and I resorted to putting an elizabethan collar back on him as I was worried about the damage. He finally settled down after around two hours but this is the worst he has been for weeks. Anyway I am seeing the vet Monday so will keep you posted, and likewise I would love for you to let me know how Henry is. Lets hope our experiences may be able to help other people and their babies in the long term. Thank you for all of your wonderful advice.


Hi. Just wondering how you got on with the vet today. Pleased to report that Henry is still doing well and 100% back to normal.


----------



## Mandamushkin (Oct 31, 2017)

Jackie Mayes said:


> Hi. Just wondering how you got on with the vet today. Pleased to report that Henry is still doing well and 100% back to normal.


Hi Jackie, So sorry for the late reply. I didn't get any email notifications and I only just logged on to see how Henry is? Seems like he is doing really well, you must be so happy  The vet cancelled my appointment on Monday due to an emergency so I am going tonight at 6.15. Must admit it has been a really hard week as loads of people have been letting of fireworks and it is stressing Tiki out so he is attacking his little face more. Quite relieved to be going to the vets at last tonight as it's causing so much stress :-( I really so happy for you and Henry, after 10 months it must be such a relief!!!! I will let you know how it goes at the vets tonight. Fingers crossed you have hit a solution for Henry. Thank you again for asking after my little Tiki and sending cuddles for Henry xxxxxx


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Hi Jackie, So sorry for the late reply. I didn't get any email notifications and I only just logged on to see how Henry is? Seems like he is doing really well, you must be so happy  The vet cancelled my appointment on Monday due to an emergency so I am going tonight at 6.15. Must admit it has been a really hard week as loads of people have been letting of fireworks and it is stressing Tiki out so he is attacking his little face more. Quite relieved to be going to the vets at last tonight as it's causing so much stress :-( I really so happy for you and Henry, after 10 months it must be such a relief!!!! I will let you know how it goes at the vets tonight. Fingers crossed you have hit a solution for Henry. Thank you again for asking after my little Tiki and sending cuddles for Henry xxxxxx


I do so hope that your vet listens to Henry's experiences and the miraculous improvement. I really hope that this works for Tiki. Get the vet to write out how to reduce the gabapentin as will take some time the dose poor Tiki is on. Good luck.


----------



## Mandamushkin (Oct 31, 2017)

Jackie Mayes said:


> I do so hope that your vet listens to Henry's experiences and the miraculous improvement. I really hope that this works for Tiki. Get the vet to write out how to reduce the gabapentin as will take some time the dose poor Tiki is on. Good luck.


Morning Jackie, I saw the vet last night and explained the situation. He has told me to do exactly the same with the Epiphen 2ml dose once a day and the gabapentin still twice a day at the same dose but he has introduced a 6kilo dose of Loxicom in the evening. Tiki now weighs 6.20 kilos up 0.60 kilo since the meds started. He has said to do it for a week, if no change then add another 2ml dose of epiphen in the evening and then start reducing the gabapentin. Complicated instructions on reducing like you have said!! He said the dose of 2ml epiphen liquid he is on once a day is the equivalent to just over a 7mg of a tablet. He did think Tiki was on the epiphen twice a day but remembered he reduced it to once a day when he introduced the gabapentin. I guess we will go from here and see what happens over the next week. He said that Tiki had an adverse reaction to Metacam before but he was fine on Loxicom. Think they mostly do the same thing. Feel a bit happier but it's now a waiting game as you know. Will keep you posted on how we get on. I really can't thank you enough for all of your help, you have been wonderful. Apparently Tiki has a very severe case and hasn't gone into remission once since March but I am keeping everything crossed we get there like you have. Lets hope between us we may be able to help other people and their babies. How is Henry now? Hope he is still doing well and it is lovely to have you proper baby back  Please, please keep in touch. Thank you from the bottom of mine and Tiki's hearts xxx


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Morning Jackie, I saw the vet last night and explained the situation. He has told me to do exactly the same with the Epiphen 2ml dose once a day and the gabapentin still twice a day at the same dose but he has introduced a 6kilo dose of Loxicom in the evening. Tiki now weighs 6.20 kilos up 0.60 kilo since the meds started. He has said to do it for a week, if no change then add another 2ml dose of epiphen in the evening and then start reducing the gabapentin. Complicated instructions on reducing like you have said!! He said the dose of 2ml epiphen liquid he is on once a day is the equivalent to just over a 7mg of a tablet. He did think Tiki was on the epiphen twice a day but remembered he reduced it to once a day when he introduced the gabapentin. I guess we will go from here and see what happens over the next week. He said that Tiki had an adverse reaction to Metacam before but he was fine on Loxicom. Think they mostly do the same thing. Feel a bit happier but it's now a waiting game as you know. Will keep you posted on how we get on. I really can't thank you enough for all of your help, you have been wonderful. Apparently Tiki has a very severe case and hasn't gone into remission once since March but I am keeping everything crossed we get there like you have. Lets hope between us we may be able to help other people and their babies. How is Henry now? Hope he is still doing well and it is lovely to have you proper baby back  Please, please keep in touch. Thank you from the bottom of mine and Tiki's hearts xxx


To be honest Henry put on weight whilst just on the gabapentin but his symptoms did not start consistently improving until we introduced epiphen twice a day combined with metacam. In fact looking back during the last 10 months although we had good days we never had days without a little awkwardness around the mouth and pawing. He only did damage to himself on two occasions. He is still doing perfectly on current meds. Good luck and hugs to Tiki xx


----------



## Jackie Mayes (Oct 30, 2017)

I just wanted to post an update on Henry. He had a check up at the vets on Friday and three weeks after starting the regime of 7.5mg Epiphen twice a day and a 5kg dose of Metacam once a day all is very good. His gums are no longer inflamed and swollen and he can eat anything without discomfort. The vet said we will review medication at the end of three months. The Epiphen has been reduced to 6mg twice a day and the Metacam to a 4kg dose. No bad effects. He currently weighs 6.22kg.


----------



## Mandamushkin (Oct 31, 2017)

Jackie Mayes said:


> I just wanted to post an update on Henry. He had a check up at the vets on Friday and three weeks after starting the regime of 7.5mg Epiphen twice a day and a 5kg dose of Metacam once a day all is very good. His gums are no longer inflamed and swollen and he can eat anything without discomfort. The vet said we will review medication at the end of three months. The Epiphen has been reduced to 6mg twice a day and the Metacam to a 4kg dose. No bad effects. He currently weighs 6.22kg.


Hi Jackie, aww thats absolutely wonderful news - you must be so happy  Fingers crossed that Henry stays improving and ends up with no meds! No such luck with Tiki I am afraid :-( The Loxicom started making him worse, so much so he started pawing constantly. I tried increasing the Epiphen to twice a day and it still continued. Last night I withdrew the Loxicom dose and went back to the 0.20ml dose of gabapentin and he was a whole lot better. He is now on 0.20ml gabapentin morning and night as well as the same dose for epiphen. He still pawed for a little bit but was so much happier. Will monitor over the next couple of days and see but looks like it is a trip back to the vets for us. He was on 0.10ml gabapentin morning and night, 0.20ml epiphen the same and 6kg dose of loxicom. The vets think he has a really severe case of this awful syndrome and it's very sad. Least he was a bit happier last night. I will carry on like this for a week and if better reduce the gabapentin again! Thanks so much for the update on Henry, give him a cuddle from Tiki. Take care, kind regards Mandy x


----------



## Jackie Mayes (Oct 30, 2017)

Mandamushkin said:


> Hi Jackie, aww thats absolutely wonderful news - you must be so happy  Fingers crossed that Henry stays improving and ends up with no meds! No such luck with Tiki I am afraid :-( The Loxicom started making him worse, so much so he started pawing constantly. I tried increasing the Epiphen to twice a day and it still continued. Last night I withdrew the Loxicom dose and went back to the 0.20ml dose of gabapentin and he was a whole lot better. He is now on 0.20ml gabapentin morning and night as well as the same dose for epiphen. He still pawed for a little bit but was so much happier. Will monitor over the next couple of days and see but looks like it is a trip back to the vets for us. He was on 0.10ml gabapentin morning and night, 0.20ml epiphen the same and 6kg dose of loxicom. The vets think he has a really severe case of this awful syndrome and it's very sad. Least he was a bit happier last night. I will carry on like this for a week and if better reduce the gabapentin again! Thanks so much for the update on Henry, give him a cuddle from Tiki. Take care, kind regards Mandy x


I am so sorry to hear that Tiki is still not getting better. I so hoped my miracle could become your miracle too. If you have insurance then perhaps a referral to a specialist. I do not have insurance but asked for a referral. I went to Lumbry Park in Alton and had a one hour consultation with their neurologist, Henry had an examination by a leading veterinary dental surgeon, a CT scan, seven dental X-rays, and an ECG. Total bill was just under £1800 including gabapentin (96 pills) and the general anaesthetic. The dental specialist was Matthew Oxford and he offers services in a number of locations. OK they didn't actually cure him but at least eliminated other potential causes and got us on the right track. I do hope you find a solution. The only difference between your treatment and mine is that we are using pills and you are using all liquid suspension as far as I am aware. Could it be that there is a difference in how the medication works because of the composition of the liquid. Also liquid is ridiculously more expensive than pills. My check up in Friday cost just £40 for a 20 minute consultation and full examination plus 28 epiphen pills.


----------



## Jenni Davies (Dec 29, 2017)

Hi

I have just found this forum - I hoped never to again have to deal with this painful and cruel condition. I originally adopted two Burmese half sisters aged 8 and 6 (Emi and Tutherun). At the age of 17.5 (in 2011) Emi developed the exagerrated tongue movements and pawing at her mouth. We took her to the vets who could find nothing physically wrong with her or what was left of her teeth (she lost most of them at 8) - 3 more futile visits to the vets and we finally saw a vet who immediately recognised what was wrong. She was given phenobarbitone but because it caused liver failure and made her so ill, we had to make the heartbreaking decision to relieve her suffering after 6 weeks. We thought it was an unfortunate thing but - no. At 17, her half sister started with the same symptoms - back to the vets who knew now what it was. She was put on opioids and we kept her going for about 4 months before we had to make the same decision for her. At this point, we had already introduced a brother and sister Burmese from a different breeder and different blood line. They are now 5 and have been fine apart from Milo losing 9 teeth at the age of 3 - with no problems. Recently, Hattie, had to lose 8 teeth due to dental disease (we know that Burmese are prone to this and took every possible precaution with Milo and Hattie, including Hills Science Plan T/D kibbles which have helped). Within a week of the extractions, Hattie has developed the symptoms of this dread condition and we are devastated. She is only 5 and an absolute sweetheart. We know from previous experience what to expect. To say we are devastated is an understatement. We have been in contact with the breeder to see if any of their half siblings have problems - nothing, so it doesn't appear that this is genetic. However, I understand now that dental extraction can cause this as well. If only we had known. We don't want to medicate her if we can avoid it but even though we have been through this before, we would welcome any advice, alternative therapies, etc that others have found useful. I have had to rule out anything that requires her mouth to be touched as she won't let us near. She has always loved playing 'Fetch' but this seems to be the worst thing which sets off the pain so we try to limit this - much to her grief - it is what she lives for! Any advice or help would be greatly appreciated as we really don't want her to go through what our other two girls did - it is heartbreaking.


----------



## Hestia (Jul 20, 2017)

The best I can do is to echo the regime that others have found effective. My Burmese, Hestia, is on 2mg of Epiphen twice a day plus 5 of Gabapentin. She takes both as liquid at that level until her episodes subside, with Metacam at night. After 2 weeks she is starting to come out of her attacks and they are now at the stage of a snuggle distracting her out of it, followed by a long purr and a snooze. I don't know if it's unique to Hestia but she also loves a hot pad when she is feeling a bit erk. She re-presented with FOPS just over a year ago and it was a long month until she suddenly quietened. This time it's subsiding at about 2 weeks. A new vet suggested steroids but our experience was that it got worse and when our normal vet came back from hols, it was to reaffirm the original treatment topped up with a single antibiotic in case she had an underlying infection in her teeth. It is great to see her interested in life, food and cuddles even though she is having minor episodes once or twice a day. My vet not only understands the condition but owned Burmese with it, so lived with it at home and understands the personal distress.

What else helped last year? A quiet room away from the other cats during the day with a close litter tray when she felt worn out. Taped paws for the worst week. We found a good way to hold her and calm her through the worst with a tea towel that she could bite instead of her paws. Then one day she just didn't need them, followed my other half to his bathroom and rolled on the floor for a tummy rub...

A study last year seemed to suggest that less than 15% of cats can't get this under control, so I do hope that you have already had your quota, so to speak (I don't mean that flippantly). I am sure that with your past experience you must be feeling very anxious and worried.

Finally, if you have PetPlan, they will cover the treatment which helps the additional cost of liquid Gabapentin (£150 a bottle is what we are charged, for 6 months and worth every penny).

Best wishes.


----------



## Jenni Davies (Dec 29, 2017)

Hestia said:


> The best I can do is to echo the regime that others have found effective. My Burmese, Hestia, is on 2mg of Epiphen twice a day plus 5 of Gabapentin. She takes both as liquid at that level until her episodes subside, with Metacam at night. After 2 weeks she is starting to come out of her attacks and they are now at the stage of a snuggle distracting her out of it, followed by a long purr and a snooze. I don't know if it's unique to Hestia but she also loves a hot pad when she is feeling a bit erk. She re-presented with FOPS just over a year ago and it was a long month until she suddenly quietened. This time it's subsiding at about 2 weeks. A new vet suggested steroids but our experience was that it got worse and when our normal vet came back from hols, it was to reaffirm the original treatment topped up with a single antibiotic in case she had an underlying infection in her teeth. It is great to see her interested in life, food and cuddles even though she is having minor episodes once or twice a day. My vet not only understands the condition but owned Burmese with it, so lived with it at home and understands the personal distress.
> 
> What else helped last year? A quiet room away from the other cats during the day with a close litter tray when she felt worn out. Taped paws for the worst week. We found a good way to hold her and calm her through the worst with a tea towel that she could bite instead of her paws. Then one day she just didn't need them, followed my other half to his bathroom and rolled on the floor for a tummy rub...
> 
> ...


Hi Hestia

Thank you so much for your reply. It gives us hope that with Hattie, we may get remission. The 2 older girls never did and we had to make the awful decision of euthanasia when they became badly affected and developed side effects from the medication. We are hoping Hattie will come through this - it has been a month now and started immediately after her extractions. It does seem to have calmed down slightly since then but it is still happening. In between the 'attacks' she is her usual lovely self and is currently curled up asleep next to me (her second favourite occupation). But she is now nasty tempered with her brother and our other little female Burmese (again different breeder and different blood line). We are going to give her another week to see if the symptoms abate more but if not, will be back at the vets to talk options for her - euthanasia not being one of them at the moment. However, we cannot and will not let her suffer but as most people on this forum have found, you have to go with what is happening, how bad the symptoms are. We really don't want her to end up as a zombie cat on meds if we can get her through this any other way.


----------



## Jackie Mayes (Oct 30, 2017)

Although it did not cure Henry for a time I was injecting Metacam as he could not bear anything in his mouth. Henry went to a specialist neurologist and had a CT scan as well as a battery of neurological tests all of which showed nothing that could be causing the pawing. Gabapentin helped a bit but honestly after 10 months of trial and error the only solution was epiphen 7.5mg twice a day along with a 5kg dose of Metacam. We used pills not liquid. We started that regime on 27th October and I am pleased to report that he is now on approximately 6mg epiphen (as best I can divide the pills) once a day only and we have stopped Metacam. I am hoping to stop all medication in the next month as he seems cured.


----------



## Hestia (Jul 20, 2017)

Jenni Davies said:


> Hi Hestia
> 
> Thank you so much for your reply. It gives us hope that with Hattie, we may get remission. The 2 older girls never did and we had to make the awful decision of euthanasia when they became badly affected and developed side effects from the medication. We are hoping Hattie will come through this - it has been a month now and started immediately after her extractions. It does seem to have calmed down slightly since then but it is still happening. In between the 'attacks' she is her usual lovely self and is currently curled up asleep next to me (her second favourite occupation). But she is now nasty tempered with her brother and our other little female Burmese (again different breeder and different blood line). We are going to give her another week to see if the symptoms abate more but if not, will be back at the vets to talk options for her - euthanasia not being one of them at the moment. However, we cannot and will not let her suffer but as most people on this forum have found, you have to go with what is happening, how bad the symptoms are. We really don't want her to end up as a zombie cat on meds if we can get her through this any other way.


I know what you mean. Hest was given a sedative to try and even wet herself! We took her off that straight away. I don't think your Hattie is grumpy with the others: she's probably feeling vulnerable, which is why we gave Hest her own room and space while she was recovering. She's now got two Snowshoe hench kitties... and we all send you much love and wishes for remission.


----------



## Jenni Davies (Dec 29, 2017)

Hestia said:


> I know what you mean. Hest was given a sedative to try and even wet herself! We took her off that straight away. I don't think your Hattie is grumpy with the others: she's probably feeling vulnerable, which is why we gave Hest her own room and space while she was recovering. She's now got two Snowshoe hench kitties... and we all send you much love and wishes for remission.


Thank you, Hestia and Jackie. I know that Epiphen is phenobarbitone and we are very reluctant to give her that as it was the med prescribed for Emi, our first cat to develop FOPS. She died within 6 weeks as it caused kidney failure and all the awful symptoms from that. Tutherun fared slightly better and was prescribed opioids and lasted 4-5 months before we had to make the decision for her. They were both 17 when they developed it so had lived a much longer life than expected. It is just so heartbreaking to see a 5 year old with it. Here's hoping that she will go into remission and it won't recur but we will just have to take it as it comes. Thanks for the love and good wishes - I will keep you updated as to what happens with Hattie. Unfortunately, Milo is taking it really badly as we are trying to give her space and he hates being separated from her and has taken to weeing all over the conservatory in his stress. So we are in a cleft stick as he is a big tom (6.5 KG) and loves to wrestle her, which she just can't deal with at the moment. Keeping fingers crossed for remission, but if not, then effective meds that help and don't turn her into a zombie.


----------



## Jackie Mayes (Oct 30, 2017)

Jenni Davies said:


> Thank you, Hestia and Jackie. I know that Epiphen is phenobarbitone and we are very reluctant to give her that as it was the med prescribed for Emi, our first cat to develop FOPS. She died within 6 weeks as it caused kidney failure and all the awful symptoms from that. Tutherun fared slightly better and was prescribed opioids and lasted 4-5 months before we had to make the decision for her. They were both 17 when they developed it so had lived a much longer life than expected. It is just so heartbreaking to see a 5 year old with it. Here's hoping that she will go into remission and it won't recur but we will just have to take it as it comes. Thanks for the love and good wishes - I will keep you updated as to what happens with Hattie. Unfortunately, Milo is taking it really badly as we are trying to give her space and he hates being separated from her and has taken to weeing all over the conservatory in his stress. So we are in a cleft stick as he is a big tom (6.5 KG) and loves to wrestle her, which she just can't deal with at the moment. Keeping fingers crossed for remission, but if not, then effective meds that help and don't turn her into a zombie.


I do wish you all the best. This is a terrible illness. Henry is now 18 and the gabapentin did make him listless and go into hiding but he could eat more. I also plugged in feliway diffusers to reduce the stress level. During the course of 10 months we tried everything. My vet does laser therapy and this helped for a time so might be worth looking at as you may have more luck than we did. With the odd chewing movements Henry's gums became swollen and inflamed. We also tried a course of antibiotics. Only the final treatment had any long term success though. Good luck and thinking of you.


----------



## Hestia (Jul 20, 2017)

I thought I would do an update for fellow owners of cats with FOPS. It's been over 18 months now since Hestia developed the syndrome as a mature cat (she had it once as a kitten when teething but nothing for nearly 16 years). She's well past her 17th birthday now and looking like the 7 year old cat she believes that she is. Every three months or so she has a small attack and each one is getting weaker in intensity than when it first came back (she no longer hurts herself and it's more head shaking and gentle pawing). After ten days or so, she is then completely clear and happy again. When her attacks are on, the Epiphen goes up to 2mg and when she is clear it goes right down to 1mg - we never completely stop it as we found out that withdrawal can trigger some attacks. We took the view that, at 17, her happiness and comfort was more important than anything else. She is doing well on it and doesn't seem to have an adverse affects - as we discussed with our vet, exactly what is 'long term usage' when you are 17? In addition, she had 5mg of Gabapentin in suspension which has the added benefit of easing her stiff little legs. So we now have a happy Burmese (this morning it was a treat of roasted salmon flakes with her feed and a roll in the sun, both of which are her idea of bliss), who runs about, plays with her toys, beats up our Maine Coon boy (that breed title often gets edited out when this gets posted...!), is worshipped by her Snowshoe hench kitties and loves going for walks in the garden. My only problem was a locum vet who saw her around Christmas and gave her a steroid injection: we took our eye off things there as our normal vet and a subsequent one has said that the evidence is that steroids make the condition worse and her Christmas episode was definitely longer than her normal two weeks. As vets get to know FOPS and more is published, so long as we have to look after cats with the syndrome, treatment and control is getting better. Hestia is getting more confident herself in dealing with things and often all it takes is a little rub on the chin to calm and reassure her and the tics stop. It's not that she's always been a 'mild' sufferer: we've been through the horrors of torn gums, blood, fear in the eyes and fingers ripped to pieces by a cat in the throes of an attack. Hestia looks like she is planning a bit of a future yet.


----------



## chillminx (Nov 22, 2010)

Thank you for the update. I am pleased to hear that Hestia's condition is being controlled and giving her a good quality of life in her Autumn years.


----------



## Jackie Mayes (Oct 30, 2017)

I would also like to update. Henry came off the Epiphen and Metacam regime fully on January 27th under the guidance of our vet. To date we have had no repeat episodes. After 10 months of struggling last year with trying everything this is such as relief as he heads towards his 19th birthday at the end of this month. There is hope out there, you just need to find the right mix for YOUR cat. Each and every one seems very slightly different. Good luck to all of you out there going through this.


----------



## Hestia (Jul 20, 2017)

Jackie Mayes said:


> I would also like to update. Henry came off the Epiphen and Metacam regime fully on January 27th under the guidance of our vet. To date we have had no repeat episodes. After 10 months of struggling last year with trying everything this is such as relief as he heads towards his 19th birthday at the end of this month. There is hope out there, you just need to find the right mix for YOUR cat. Each and every one seems very slightly different. Good luck to all of you out there going through this.


Hooray for Henry! So glad that he is also having a great time. If it does come back at all, don't despair, you know how to deal with it now (but let's hope he stays clear).


----------



## Astrid Marie (May 22, 2018)

Hi, I know this is an old forum but I'm really hoping someone is still logging in because I could use your help. 

I have a short haired domestic who is 9 years old going on 10 in March. In the middle of September I noticed she would occasionally paw at her mouth and it almost looked like she was gagging or something was stuck in her mouth. Specifically her left side. Or her mouth area would twitch after an episode. Almost like she can still feel the urge to start the mouth movement again. 

I have spent almost 1k at the vet in the past month. Between him sedating her to look in her mouth, blood work, trying GI meds, and prednisone. And he still has come up with nothing. Her mouth looks great, her blood was good ( minus high cholesterol that I saw on the copy) and shes still eating and drinking ( he had us switch to only wet food). We have exhausted every possibility except cancer at this point. He saw two very small white spots on the back/ side tongue but he said it was asymmetrical so he doesn't know if it's a part of her anatomy or not because cancer isn't typically asymmetrical. But suggested a biopsy because at this point we still have no real answers. 

Then I found this syndrome last night while thinking I should try to research for answers one more time. Astrid does not mutilate her face or tongue;however she has the identical tongue movement and occasionally will paw at one side of her face out of discomfort. But I saw a youtube video of a cat with FOPS and it looked like my fur baby. My question to everyone here is that possible: for the cat not to be mutilating their tongue but still showing the same mouth movement? 

Thank you so much, any advice or thoughts would be appreciated. It is horrible for my fiance and I to watch her in so much pain and discomfort and we can't fix it.


----------



## chillminx (Nov 22, 2010)

Hello @Astrid Marie -

The mouth movements and pawing of the mouth you describe are very typical of a dental problem. Dental pain is often worse after eating.

Has Astrid had a dental x-ray to check for problems below the gum line?

FOPS is characterised by severe pain and mutilation of the tongue and sometimes includes mutilation of the lips.

Here is a link to an excellent article from the Fitzpatrick Referrals vet explaining about FOPS. (Noel Fitzpatrick is the brilliant TV Supervet)

https://www.fitzpatrickreferrals.co.uk/neurology/feline-orofacial-pain-syndrome-fops/

Fitzpatricks are based in Surrey, England. If you are in the UK and located anywhere near that area, it may be worth you asking your vet for a referral. It may be the best next step.

p.s. You may not get many replies on this thread as the original posters have not been seen on the forum for over a year. It might be better to start a new thread of your own on the topic.


----------



## Astrid Marie (May 22, 2018)

Thank you for your response! My vet has sedated her and looked in her mouth. Everything is perfect with her mouth. For her age, he said he was very impressed with her teeth and gums. I can request an xray;however, nothing has indicted it is a dental problem at this time. I

It looks like the exact behavior minus chewing/pawing her tongue up. Thank you for your response also. I have read that article but I am not in the UK. I just want to get her help amd find out what's wrong. Thank you so much again


----------



## Astrid Marie (May 22, 2018)

I'm going to post a link of the video


----------



## Mandamushkin (Oct 31, 2017)

Astrid Marie said:


> I'm going to post a link of the video


H


Astrid Marie said:


> I'm going to post a link of the video





Astrid Marie said:


> Thank you for your response! My vet has sedated her and looked in her mouth. Everything is perfect with her mouth. For her age, he said he was very impressed with her teeth and gums. I can request an xray;however, nothing has indicted it is a dental problem at this time. I
> 
> It looks like the exact behavior minus chewing/pawing her tongue up. Thank you for your response also. I have read that article but I am not in the UK. I just want to get her help amd find out what's wrong. Thank you so much again


Hi Astrid, I have previous been a member of this forum with my cat who developed FOPS following dental surgery. He firstly mutilated his face and ripped his lips off. Following trial long various medicines his episodes did decrease and looked very much like the video you posted. I would go as far to say he did exactly the same. He was on Epiphen twice a day 2ml morning and night 12 hours apart and gabapentin also twice a day. 2.5ml in morning and 3ml evening. Unfortunately he never went into remission after two and a half years but he was an extremely happy boy. Like I said he did continue to have mild episodes even with drugs. I unfortunately lost him in July to a blood clot that paralysed him. Wether or not this was caused by meds we don't know. Epiphen is a dog epilepsy med and gabapentin a human neurological with pain killer. I would advise having X-rays first to rule out a nerve or root problem. We followed all guidance and advice prior to the fops diagnosis being made. Hope this helps and good luck xx


----------

