Phenobarbital - experiences?

[Antonio65]

Following a vet visit yesterday, the vet thought to agree with a previous diagnosis from a neurologist where he said that my Freya might have a focal epilepsy of idiopathic nature. The neurologist saw Freya in May, after a strange episode at home, and prescribed a therapy with Phenobarbital (1.7mg/kg), then evaluate her dosage with a blood test after a few weeks.
On that occasion, I got a prescription for this drug from this neurologist, I bought the med, but never gave it to Freya, because I was scared of its side effects, and also because I did not believe Freya had epilepsy or other primary neurological conditions. She never had the typical symptoms of an epilepsy or seizures. But according to the neurologist, epilepsy can have many different aspects.

Freya seems to be prone to unusual behavorial episodes, she had many occurrences in the last 18 months, something that I tend to link to a possible incomplete spay. A few months ago, I asked my vets to run a hormonal test (LH test - Luteinizing Hormone) to confirm my theory, and the test came back positive, that is, according to the test, Freya had an incomplete surgery and she might still have an ovarian remnant, so my theory might be confirmed.
Despite this positive result and other evidence, my vets think it isn't really possible that the surgery went wrong, and they are trying to minimize the importance of these previous tests and evidence. I need to add that Freya never showed any typical signs of heat even before the surgery at the age of 10 months, so it is impossible to clearly tell if she's in heat.

So, yesterday this vet reiterated that Freya's issues have a neurological basis, and I should start this therapy with Phenobarbital now. The therapy would last not less than 6 months, in order to assess the efficacy and necessity of the therapy (this might make me understand that the vet isn't totally sure about the diagnosis). She told me that failing in following her recommendations would pose severe risks to Freya, even sudden death.
Also, she urged me to have an MRI scan done as soon as possible, which I would really like to avoid. This MRI scan was also recommended by the neurologist in May, but of course I didn't do it.

Nonetheless, after all these words, yesterday the vet thought to have a new LH test done, so she took some blood from Freya and sent it to an external lab for testing. If she's so sure that the surgery was fine, and no possible ovarian remnant is still in place, then why would she run such a test?

I'm still very hesitant about administering this drug, as I said because of its severe side effects, and also because I don't think that epilepsy is what my Freya has.

Anyway, I would like to read from other users that had used or are still using this drug, what side effects they noticed. Any comments, experiences, and opinions are welcome. What would you do?

 

[FeebysOwner]

While you wait to hear from others about phenobarbital use, maybe you would like to look through previous posts, if you haven't already done so?
Search Results for Query: phenobarbital | TheCatSite

Personally speaking, since you are unsure of the epilepsy/seizures, and the vets think an MRI might help to determine one way or the other, at this point I think you should go through with it. Not sure what your hesitancy is, but what better way to help in trying to identify what is going on with Freya? Perhaps, they will see something that would indicate phenobarbital would not be the appropriate treatment? That would be a win-win for you. Otherwise, if irregularities are identified that would suggest epilepsy/seizures, then at least you have something tangible to work with in terms of trying to help Freya. And you can always ask about alternatives to phenobarbital.

As far as the LH test - it would be best to ask the vet what their view is on the importance of re-running it given the previous results. It is better to hear what they have to say than to make assumptions about why they think it needs to be re-run. It is possible that they want a second result to ensure the first was not a false-positive. As is the case with most any tests, none are 100% guaranteed to reap accurate results every time.

 

[Antonio65]

While you wait to hear from others about phenobarbital use, maybe you would like to look through previous posts, if you haven't already done so?
Search Results for Query: phenobarbital | TheCatSite

Hi FeebysOwner , yes, before posting my new thread I had looked into those previous threads, but couldn't find what I'm looking for, especially in terms of side effects in the middle to long term.

Personally speaking, since you are unsure of the epilepsy/seizures, and the vets think an MRI might help to determine one way or the other, at this point I think you should go through with it. Not sure what your hesitancy is, but what better way to help in trying to identify what is going on with Freya? Perhaps, they will see something that would indicate phenobarbital would not be the appropriate treatment? That would be a win-win for you. Otherwise, if irregularities are identified that would suggest epilepsy/seizures, then at least you have something tangible to work with in terms of trying to help Freya. And you can always ask about alternatives to phenobarbital.

This sounds wise, but my hesitancy is in the heavy sedation and contrast fluids injection that Freya should go through, and I wouldn't like to experience such an ordeal. She looks so frail and petit to me, I would like to spare her this thing. I'm so afraid that she wouldn't return herself after the sedation.

As far as the LH test - it would be best to ask the vet what their view is on the importance of re-running it given the previous results. It is better to hear what they have to say than to make assumptions about why they think it needs to be re-run. It is possible that they want a second result to ensure the first was not a false-positive. As is the case with most any tests, none are 100% guaranteed to reap accurate results every time.

Alright, but the vet said that she would rule this thing out, she doesn't think that anything was wrong with the spay, so if she's so sure of this, why does she need to retest Freya for something that she said is non-diagnostic?
In my head, something doesn't add up.

 

[Kflowers]

Why don't you ask the vet why the Phenobarbital therapy would only last 6 months. Is that to see if it helps her, as some medications take time to solidify in their results. Is it see how well she does and if she doesn't do as well as expected is there another medication that will be offered instead? Usually, vets and doctors start with the mildest and gentlest of medications and work up. I do know there are more than this one treatment for epilepsy and that some people and animals respond differently to different medications.

We had a dog with epilepsy. She was on the Phenobarbital therapy. It stopped the seizures - hers were grand mal, not the milder ones Freya has --and made her calmer and more relaxed than before.

The dog was a Doberman- rottweiler mix. She lived to be 12, a good age for such a large dog, before developing inoperable cancer. Both her breeds have a tendency to cancer since breeders didn't focus on health.

 

[Antonio65]

Why don't you ask the vet why the Phenobarbital therapy would only last 6 months.

Well, she said at least (not only) six months to see if the situation changes, if Freya has less or no episodes in that time frame.

Usually, vets and doctors start with the mildest and gentlest of medications and work up. I do know there are more than this one treatment for epilepsy and that some people and animals respond differently to different medications.

Actually, the neurologist told me to start with a very low dose, 1.7 mg/kg, rather than the classic 2.5 mg/kg. This would be even easier for me, because I could break the tablet in four (the tablet has a crossed score, easy to berak it in four), rather than in three.

We had a dog with epilepsy. She was on the Phenobarbital therapy. It stopped the seizures - hers were grand mal, not the milder ones Freya has --and made her calmer and more relaxed than before.

I would hate to see my Freya more lethargic and less playful. It wouldn't be normal to me to see her quiet instead of a energetic kitty.

 

[Kflowers]

I never said our dog was lethargic, I said it made her calm. There is a huge difference between lethargic and calm, just as there is a difference between excited and seizures. With the medicine rather than being frantic when people came to the door, she barked and bounced to let us know someone was there. It was a 'there's a guest here' rather than 'someone is there trying to kill us'. Perhaps you've never seen a terrified dog or child, but there is a difference between terror and excitement. It kept her from reaching the frantic point of throwing herself against the door when someone knocked on it. It's not a matter of lethargy, more a matter of tone. Of course, our dog took a larger dose since she had grand mal seizures, which are dangerous to the dog and everyone around her with every occurrence. The medicine gave her a full life where she could go places without fear of her having a seizure, choking or slamming herself against a wall, a car, or a person, or biting them in her semi-conscious state. It meant she lived the number of years expected for her breed without epilepsy.

Of course, in the end it's up to you whether or not you accept the vet's suggestions. But remember this vet is giving you the same advice the specialist did, this is your second opinion. Since Freya's seizures don't endanger anyone else, you aren't in the position where you must do something to stop them. Since her seizures just make her stare into space, she isn't likely to bite through her tongue or smash her head on the tile floor. That is a critical difference to be considered.

 

[Antonio65]

This morning at 9 am, I received an unexpected phone call from the vet at the clinic. She called me to say that the LH test report had just come in, and it was negative. This means, according to the test and the vet, that Freya should be perfectly and fully spayed. This is contrast with the test we ran in May, and when I asked the vet how we should read these two reports, she said that we could run a third test to see which is true.
I don't like this method at all. What does that mean? She is either successfully spayed or not.

Then she asked me if I had started the therapy with the Phenobarbital, I said no, because I had just found a note from the neurologist where he said that the recommended dosage was lower than the one this vet advised me about last Monday, so I'd rather stick to this.

I told her that I was thinking it was wiser to run the MRI first and see if the scan would indicate the necessity to start such a drug, like FeebysOwner advised me in her post, but she said that this is unwise, because Freya could experience worse crises before the MRI is done. She said, though, that she understands my hesitancy in this step, so she said that she could even suggest to try with the homeopathy, though she doesn't believe in it, and she thinks that this approach might be easier for me to accept.
I do not believe in homeopathy either, but as far as I know several people had excellent results with it, so I might even give it a try.

Then we talked about the MRI.
The neurologist advised me about a facility for this scan, but this vet told me that I should go to a much better facility, which is about 230 miles (instead of 100 miles of the other facility), because they have the best neurologist around, and I would have the best answer possible on the Freya's issue. I was thrilled about this chance and started thinking about it.
So I looked it up on Google, and found several dozens of horrific reviews on it, with many many pets who died at the facility or the huge number of useless tests the owners had to pay just to increase the vet bill, and I have understood that this isn't what I want to do, and these reviews just reinforced my doubts on having an MRI done.

So, I think I will start the Phenobarbital tomorrow, and I hope Freya does not have any side effect.

 

[Kflowers]

I do suggest that you avoid touching Freya when she's having a seizure. People have reported, and animals' reactions seem to indicate, that they are not aware of the people and animals around them during a seizure. Animals seem to feel they are being attacked if touched. I remember your report of the first incident with Freya, when you tried to catch her in the hallway, and she tore you up. From the other things you've said, if you don't try to touch her, she seems to just stay put. However, if you feel you must contain her, use a thick quilt or blanket and put her somewhere she can't fall -- like a nest on the floor rather than on a bed.

 

[Antonio65]

I never said our dog was lethargic, I said it made her calm. There is a huge difference between lethargic and calm, just as there is a difference between excited and seizures.

And I never said that your dog was lethargic.
I just said that among the many effects of this drug on pets there are ataxia and lethargy, as it is stated in the instruction sheet in the package. And this is what I wouldn't like to see in Freya. She's already experienced the ataxia in these past days, and I didn't like to see her that way.

Of course, in the end it's up to you whether or not you accept the vet's suggestions. But remember this vet is giving you the same advice the specialist did, this is your second opinion. Since Freya's seizures don't endanger anyone else, you aren't in the position where you must do something to stop them. Since her seizures just make her stare into space, she isn't likely to bite through her tongue or smash her head on the tile floor. That is a critical difference to be considered.

And this is what I'm considering. Since her seizures are just periods when she's spaced out, and do not endanger her life, only her behavior, I would consider whether giving her this drug is advisable.

 

[Kflowers]

yes, yes, I was merely answering the question you asked --
Anyway, I would like to read from other users that had used or are still using this drug, what side effects they noticed. Any comments, experiences, and opinions are welcome. What would you do?

I responded when it seemed you thought I was saying it made the dog lethargic. This is our experience with the phenobarbital, that you asked to see.

 

[Antonio65]

I do suggest that you avoid touching Freya when she's having a seizure. People have reported, and animals' reactions seem to indicate, that they are not aware of the people and animals around them during a seizure. Animals seem to feel they are being attacked if touched. I remember your report of the first incident with Freya, when you tried to catch her in the hallway, and she tore you up. From the other things you've said, if you don't try to touch her, she seems to just stay put. However, if you feel you must contain her, use a thick quilt or blanket and put her somewhere she can't fall -- like a nest on the floor rather than on a bed.

Apart from the very first episode, she has never had such a severe crisis anymore.
What happens is just that she seems confused about the place she's in, she feels out of place, she might not remember where her dishes are, or which her favorite toy is. Sometimes it seems she can't even recognize her name, and when I call her she does not respond, but she recognizes her feline friend and still sleeps along with her. And that's all. Nothing dangerous happens to her or the others around her.

Last week, though she was in a difficult moment, it was her to come to me and look for help, and wanted to be cuddled and reassured.

 

[Kflowers]

I'm very glad to hear she hasn't had such a frightening experience after that first one. Perhaps her mind connected through to the scents that were safe - you, the house - and that helps calm her.

that second MRI places sounds frightening.

 

[FeebysOwner]

Since her seizures are just periods when she's spaced out, and do not endanger her life, only her behavior, I would consider whether giving her this drug is advisable.

What happens is just that she seems confused about the place she's in, she feels out of place, she might not remember where her dishes are, or which her favorite toy is. Sometimes it seems she can't even recognize her name, and when I call her she does not respond, but she recognizes her feline friend and still sleeps along with her. And that's all. Nothing dangerous happens to her or the others around her. Last week, though she was in a difficult moment, it was her to come to me and look for help and wanted to be cuddled and reassured.

Maybe she only appears 'spaced out' to you, but you can't possibly know how it actually feels to her. Just because nothing violent happens doesn't mean it doesn't hurt her quality of life to go through those bouts.

If you do start the phenobarbital, let us know how it goes.

 

[Antonio65]

If you do start the phenobarbital, let us know how it goes.

I will start tomorrow morning, at 8 am, then 8 pm, and so on.
The dose won't be as the neurologist said. He prescribed 1.7 mg/kg, but because of the pill size it will be 1.8 mg/kg.

The vet asked me to evaluate the phenobarbital blood concentration after 4 weeks, at the eleventh hour (like she said). I'm curious to see if they can a blood sample at 7 am sharp

 

[Antonio65]

Two weeks into this therapy, and I want to list what I have noticed in these past days.

The first week went by quietly, Freya took her quarter pills twice daily, always at the same time sharp. I set an alarm on my phone, so I can't miss it.

At the beginning of the second week I found that Freya was having less and less appetite. She would leave something in her dish at every meal, and she rarely does that. Also, she started being less active, not lethargic, but apathetic. She stopped playing at all, even her favorite toy mouse that she would chase relentlessly from morning to night wasn't interesting anymore. I tried to entice her in the play, but rather than chasing the mouse and taking it back to my feet so that we could play over and over, she would just weakly try to grab it, provided that it was passing by her paw.
She spent the whole past week sleeping, she was sleeping all day. I mean, cats do sleep a lot, but she was sleeping all day long, she wouldn't even come to the dish unless I pushed her to her food. Her eyes were like void, all that was going on around her was like in a movie to her, she was like detached from this world.
She was very weak, she couldn't even jump onto the sofa, she would fall backwards. She would also lose her balance when I tried to play with her. She walks slowly, she moves slowly. She was dazed, far from the active and hectic cat that I knew.

Anyway I am aware that these are the side effects of this drug. The sheet in the package says it can last "some days", but "some" is not a number, so I don't know if it's 5 days, 15 days, 55 days.

Yesterday she was just the same, but around midday she started licking her... under-tail parts... obsessively, compulsively, almost violently, for at least two hours. The noise she would produce with her rough tongue on her private parts could be heard across the souse. Then she started licking and biting the base of her tail, she would bite her skin as something was really bothering her. The skin on her back was twitching every now and then. She started licking and biting all legs too, front and rear. This went on all night till bedtime.
Yesterday she hardly ate something, much less than half of her usual amount of food. She threw up three times, some stomach juices and some hair. Never happened before.

This morning she didn't want to eat, she ate something (half a meal) at noon.
The sheet in the package says that a common side effect is an increased thirst (false), an increased appetite (false), an increased use of the litter box (false).

She's more alert today, but she's still licking, biting and scratching all over. It seems something like a slight hyperesthesia to me, but it isn't listed in the side effects on the sheet, and I didn't find anything on the internet.
She nearly hasn't stopped licking and biting all over since this morning, and while I'm typing now, she's on my legs, nervously biting her heels and paws, and licking all over, head to tail, repeatedly and nervously. She's driving me crazy! I'm desperately trying to stop her, but it's pointless.

So, briefly, two weeks into the therapy and she's feeling weak, dazed, apathetic, uninterested in her toys. She has a diminished appetite. She's licking, biting and scratching all over, all day.

Two more weeks before the follow up vet visit. Hopefully things do not go worse than this.

 

[Antonio65]

We've just finished the third week of the therapy. Today we begin the fourth one.

Another weird symptom Freya had on last Thursday was a wild itch, so wild that she couldn't stop scratching or licking or nibbling herself.
It began on last Wednesday in the afteroon, with an unstoppable need for licking herself all over. It was a desperate need for licking and nibbling, it was crazy. This went on for at least five days, during which she could hardly sleep because she had to lick herself, nibble her skin nervously all the time. She would groom so much and for so a long time all day that she would throw up huge hairballs, something that she had never done before. During the weekend, she started scratching furiously all over. I would find hair tufts all over the house.
In brief, she spent a few days overgrooming and scratching herself, she couldn't sleep.

I checked the sheet in the package, itchiness wasn't mentioned at all, but after a few researches on the web I found that some cats experience this.
This lasted throughout late Monday.

Since Tuesday, she stopped licking and scratching, but she's dazed again, listless, apathetic, uninterested in play or else. She sleeps a lot.

We have the blood test booked for the Phenobarbital level next Thursday, at 7 pm.
I will tell the vets what happened so far.

 

[Antonio65]

New update.
We're starting the fifth week of treatment.

Yesterday at 7 pm we had the first checkup at the clinic. The vet wanted to run a blood test to see the level of Barbital in Freya's blood. The blood had to be sampled at the 11th hour.
She wanted to be filled in about the last four weeks and I told her everything.
What's been shocking is that the vet didn't know anything about the itch as a reaction to the drug, she said this was the first time in her career when she heard that a pet treated with Phenobarbital had this reaction, so she looked it up on the web and found one or two articles that say this side effect can be detected in about 3% of treated patients. She said it is such a low number that probably it isn't considered important. To me, 3% is a huge number, so it should have been clearly reported in the instruction sheet in the package. The vet said that she would have reported my experience to the relevant office at the manufacturer, I told her it was useless now, because I learned it by myself.
The vet took a blood sample for the test, and wanted to include a full chemistry as well, even if the protocol would ask for a full chemistry after 6 months of treatment.
The vet said that given the big number of side effects seen on Freya in the last four weeks, it is possible that the dosage is too high, so it would be nice to see what the blood level is and adjust it accordingly.
I told her that it is impossible that the dosage is too high, because we started at 1.8 mg/kg when the recommended dose is 2.5 mg/kg.
The results for this blood sample should be available Monday.

In the last week Freya returned quite to her old self. She isn't playing as much as she used to do, but she's more alert and active, she can stand on her legs and can jump without falling backwards.

The new symptom I have noticed is an increased drive for food. She eats her meals more voraciously, and is getting a little more aggressive towards food in general, even ours on the table at meal times. This happened before, when she was very young, and was a real nuisance, she would put her mouth and paws into every pot, dish, jar, whatever was available, to try and steal some food. It was something that was driving us crazy, and one vet advised us on the acupuncture, and we had five sessions of acupuncture which fixed the issue. Now it seems we're back to square one!

I know that polyphagy is one of the most common side effects of Phenobarbital. The vet told me to give Freya more meals during the day, but I don't want to resort to this, because I should feed Giada more often as well, or she could get jealous, and Giada is already a bit overweight.

The vet also wanted me to switch to a new diet, which I don't want to do either. I am feeding them some mono protein wet foods, and grain free dry food, both high quality, and I wouldn't like to switch to something less good only for the sake of Freya's appetite.
The vet agreed with my point of view.
On the other hand, I have to say I am a little disappointed with the vet herself. Her lack of knowledge on this particular side effect and her pressure on me to switch to a new diet were something I didn't like.

Last night and today Freya ate less than she did in the last week, and today she looks more sedated.
Let's see in the next few days.

 

[Antonio65]

Update.
We're in the sixth week of treatment.

Freya is back to an unnatural quietness. Nearly no play, poor interest in food, lots of sleeping or watching the world around from her spot on the sofa.
That increased drive for food has disappeared, it only lasted a few days.
Now she's become a slow eater, and sometimes she doesn't even finish her meals. This morning I checked on her and she took 8 minutes to eat her wet food (1.5 oz of wet food), and she even left something in the dish. Usually she would eat the same amount of food in about 3 minutes, like the other cat Giada does.
I think that she's getting bored and tired of being at her dish for such a long time, and then she gives up.

Another thing, on a few occasions, especially in the morning, her upper left eyelid is lowered, and her left eye is slightly closed. She doesn't have anything in her eye, and during the day she can even be normal.

What I have surely noticed is that the new symptoms only show up on Thursdays, and last about a week, only to be replaced by something else the next Thursday.
We started the therapy on a Thursday, so I find it weird that symptoms are so "compartimentalized".

Vets are useless, they do not have answers, and the vet who visited Freya last week didn't even know about itch as one of the least common side effects

The blood work done last week says that everything is fine, the Phenobarbital level in Freya's blood is correct (18 µg/ml with a range of 15-35 µg/ml).
Liver levels are fine, but I had no doubt about it, since we were only 4 weeks into the therapy, but the vet insisted on having them done.

 

[Antonio65]

Update.
Just started the seventh week of treatment.

The past week Freya looked mostly great. She was active, playful, loving, and with a very good appetite. There were moments of apathy, but they were compensed for by moments of high energy. So I thought that she was getting used and stabilized. I though that the worst had gone.

As from yesterday, Thursday, she started being more lethargic, quite despondent, uninterested in nearly everything. She didn't want to eat all day, apart from some bites of wet food at 7 pm, which she threw up a few minutes later, and a few kibbles at 11 pm, which she threw up 15 minutes later.
She had also puked stomach juices 5 times along the day, I found the first one early in the morning, something in the afternoon, and again this morning.
She drank a lot of water in the last 24h, and this morning I found the water bowl completely dry, I filled it up again and she drank 20 ml right away.

This morning she ate only half of her usual meal, then she curled in a corner, with her eyes squint, she looks absent.
Hopefully, she doesn't keep throwing up today and over the weekend.

Also, yesterday she would scratch both her ears a lot, furiously and almost relentlessly. I checked them both, and as far as I could see, her ears are clean. She scratched herself so furiously that she injured one ear and she has a bald spot on it.

I have the feeling that she hasn't been too well since the beginning of the therapy. Also, I don't understand why a few of the symptoms I see aren't listed in the sheet inside the package.
Furthermore, I don't understand why all new symptoms or conditions always start on a Thursday.

Next follow up visit is on Feb 20th, I wonder what can still happen in three weeks!

 

[NekoM]

I went online to check what studies have been carried out on its effectiveness on Cats and it’s only been studied once back in 2014 which involved 30 cats and found it was 50% effective” it also lowers the effectiveness of any other prescribed medications.All studies are reported to the US National Library of Medicine btw. So what ever side effects your reporting your vet doesn’t have a lot to go by.
I don’t feel qualified to suggest anything - phenobarbital given to cats sounded a bit odd.