Phenobarbital - experiences?

[posiepurrs]

My Jack has been on phenobarbital for close to a year now with no problems. His seizures did increase so the vets added keppra and gabapentin. No seizures since. I chose not to have the MRI done due to cost ( on a fixed income)and because 2 vets told me that it would not change the prognosis or treatment. While waiting for the phenobarbital to be compounded, I used scent therapy to stop the seizures. I simply crushed a bulb of garlic and put in a baggie. When I saw he was about to seize, I opened the baggie and put it under his nose. The strong smell would interrupt the seizure sequence. Crushed dill also works. I had read a report on research using this technique with humans to stop seizures so decided to try it with Jack. I also have read that in some animals continued, untreated seizures can affect the personality and can cause brain damage.

 

[Antonio65]

My Jack has been on phenobarbital for close to a year now with no problems. His seizures did increase so the vets added keppra and gabapentin. No seizures since.

Freya never had a seizure, but she was diagnosed with focal epilepsy all the same due to her weird (and cyclical) episodes when she seemed lost and confused.

I chose not to have the MRI done due to cost ( on a fixed income)and because 2 vets told me that it would not change the prognosis or treatment.

Same here. I chose not to have the MRI done because it wouldn't have changed anything for Freya, and I would have put her under an unnecessary stress.

I also have read that in some animals continued, untreated seizures can affect the personality and can cause brain damage.

This is true for humans as well.

 

[Antonio65]

UPDATE - 320 days

I wonder if the Phenobarbital could give stomach issues, I could thing of gastritis, for example.
In the last few weeks Freya has been vomiting a lot early in the morning, when her stomach is empty, and she throws up stomach juices. It always happens around the same time, between 7 and 8 am, it never happened before this past month.
The med instructions don't mention any stomach issues in the side effects list, but we know that those leaflets never say the truth.

This morning she threw up around 7:30 am, just juices, then at 8:00 am she took her quarter pill, a few minutes later she ate her wet meal. I saw her less motivated and interested in food than the usual. About fifteen minutes later she threw up the whole meal, so I guess she threw up the pill as well.

I was scooping the litter box when she threw up, so I said "Well, I will clean up later"... well, I was late... Giada, the other cat (who is always hungry), ate up the thrown up food and if the dissolved Phenobarbital pill was in it, then Giada ate up the pill too!

After that, Freya was looking like she was tired, disoriented and a little scared, but after a few minutes she came to my lap.

On last Thursday night, for a reason beyond my control, I was late with her pill, 21 minutes late on the usual schedule. The next day Freya was acting weird at noon, she was scared and would hide and wouldn't come close to me. This lasted about two or three hours.
I don't think this was because I was a little late with the pill.

Any opinion?

 

[fionasmom]

I don't think that the 21 minutes made a difference although I don't have any first hand experience with phenobarbital. I have known of people who played fast and loose with it and basically gave it when they got around to it; in those cases there were big problems.

It sounds like you are giving it with food, which is indicated for cats who seem to have stomach issues with it.

There is a rare liver involvement with it, but I don't know that Freya has anything like this or if it would cause gastritis or vomiting.

 

[Antonio65]

I have known of people who played fast and loose with it and basically gave it when they got around to it; in those cases there were big problems.

I, too, know a person who would give her cat the phenobarbital at random hours, and did this for years, until I told her that she should have been more consistent. Unfortunately, her cat died only a couple of months later...

It sounds like you are giving it with food, which is indicated for cats who seem to have stomach issues with it.

Actually, I give Freya the pill at very precise times of the day (I have set an alarm on my phone), but food may be given before or after the pill, depending on how I'm ready for it.

There is a rare liver involvement with it, but I don't know that Freya has anything like this or if it would cause gastritis or vomiting.

Freya had a full blood work two months ago to see if there was any liver involvement, but all was clear. She's taking a very low dosage.

 

[neely]

On last Thursday night, for a reason beyond my control, I was late with her pill, 21 minutes late on the usual schedule. The next day Freya was acting weird at noon, she was scared and would hide and wouldn't come close to me. This lasted about two or three hours. I don't think this was because I was a little late with the pill. Any opinion?

Although I haven't had a cat who took Phenobarbitol our last dog was on it for a very long time, approx. 12 years. The original dose when he started put him in what I would call a zombie state. For that reason I asked the vet for the lowest possible dose and closely monitored him. He was able to stay on that dose the remainder of the time. Fortunately it never affected his liver. I tried to be as consistent as possible and gave him the med. about the same time every day. I highly doubt giving Freya her pill 21 minutes late caused her to act weird the following day. Regarding her gastrointestinal issues, I think it is possible the Phenobarbitol could be the culprit but that is a question for your vet.

 

[Adnil95]

Hi Antonio!
I'm so late to this thread I'm sorry - actually had the same experience with Salem.
Lately she threw up a few times andI had the suspect it might be because of phenobarbital.

But just stomach juicess.. I read somewhere that prolonged usage of phenobarbital can give stomach issues (as well as face itching!).
SoI tried to experiment doing it on a full stomach and then I gave her intermittently few timeson an empty stomach and she threw -up.

Don't knowif it's the phenobarbital or the "easy pill" that I use to "attach" her full dose... But I'm doing it always on a full stomach and now I've never seen her throw up again. How is Freya now?

 

[Antonio65]

Hi Adnil95 ,

I feed my cats depending on how I manage my things in the morning and at dinner time. So, because the administration of the pills is on fixed times, sometimes the pill is given on an empty stomach, sometimes right after the meal.
The vomit always occurred early in the morning, before 7 am.

I hope that Salem can find some relief from her itch and stomach issues. That's so sad...

Freya is doing fine now. We're at day #344 today. I'm considering having the dosage slowly reduced after Christmas or, alternatively, going on till March and have another phenobarbital level in the blood test done, as suggested by the vets.
I'll ask the vets.

Thanks for asking.
All the best to Salem

 

[Antonio65]

UPDATE - 365 days

One year went by since the beginning of the therapy. Yesterday I gave Freya her 365th two doses. I wasn't sure I could do that a year ago.
I've been incredibly consistent with the times of administration of the pills, 8 am and 8 pm, with only a dozen of times in a year when I was ten to twenty minutes late. Never skipped a dose.

Two strange things happened in the past few days.
On December 11th she acted rather weird all day. She was somewhat confused in the morning, and she seemed she wasn't recognizing me in the afternoon and evening, but she was fine the days before and after, and nothing of the kind happened again.
On December 19th and 20th, Freya did something that she never did before. She curled on my lap and kneaded into my elbow and purred rather loudly. She's a very sweet cat, she loves me to bits, but she's never kneaded before.
Other than these episodes, she never showed any weird signals or behavior.j

I talked with the vets a couple of weeks ago and they told me to run another phenobarbital level test in January, just to see how things go after one year since the previous test, then we could think about gradually reducing the med and eventually suspending it and see what happens.

 

[neely]

I talked with the vets a couple of weeks ago and they told me to run another phenobarbital level test in January, just to see how things go after one year since the previous test, then we could think about gradually reducing the med and eventually suspending it and see what happens.

This is wonderful and encouraging news! All your care and perseverance have helped Freya immensely. Fingers crossed for good results when they run the phenobarbital test in January.

 

[Antonio65]

UPDATE - 400 days

Last Thursday, January 25th, was the 400th day of therapy, a great goal, I'd say.
What happened in the past few weeks was that from Jan 11th to 14th Freya had moments in the days when she was howling at walls and windows right after dinner. This would go on for no less than half an hour. Then she would calm down, come next to me on the sofa and would sleep quietly.

On January 22nd, Monday, I had an appointment at the vets to have Freya's phenobarbital level in her blood checked.
While I was there, I asked the vet to add another test, the LH test, to check again whether Freya's ovaries are still working.

The results came in yesterday.
The phenobarbital level is 17.86 µg/ml (range 15-35), so after one year nothing has changed, and this is great.
The LH test came back <1, which means that her ovaries are active.
The vets are puzzled at this result, and don't know what to say. The only thing that the vet was able to say is that I should talk to the neurologist and ask him how to wean Freya off the phenobarbital.
We'll have an appointment on Feb 19th.

I'm planning on having the LH test repeated at a different clinic after the consultation with the neurologist.
I will be relentless on this issue, I want to drive them crazy.

 

[Kflowers]

I hope you do speak to them long and often. This is so very wrong of them. You were right all along. Justice for Freya and the correct medical treatment!

 

[fionasmom]

Last Thursday, January 25th, was the 400th day of therapy, a great goal, I'd say.

Yes, it is and I hope that you are able to resolve these issues with the doctors.

 

[Antonio65]

Two days ago the vet told me that he spoke with the neurologist. The vet told him about Freya's last labs (phenobarbital blood level and LH test), and it seems that the neurologist agrees that we might look at the situation from another point of view, and he also agrees to slowly reduce the phenobarbital dosage until Freya will be free of this drug and see how she goes.

I've been told that weaning Freya off the drug will be a long process. I knew it was a long process, but I couldn't believe it was that long. At least 4 months!
The protocol requires that the daily dosage is reduced by 25% the first month, then another 25% the next month and so on.
What is unclear, and the vet couldn't help me because he was stunned at my question too, is what a 25% reduction per month means.
Would it be that the first month is 75% of the current dosage, then 50%, then 25%?
Or would it be that the first month is 75% of the current dosage, then 56% (75-25%), then 42% (56-25%), and so on? I think it is the former, because with the second option we will never reach zero, not even in 5 years!

Anyway the problem is that it will be hard to cut the pills to such low dosages. I have a precision scale, I will try when they tell it is time to start.

Meanwhile, this morning Freya had a weird episode. I was preparing my cats' breakfast (wet meal), like every morning, and noticed that Freya was slightly wobbling, but I didn't bother too much. She was also very vocal while I was preparing her dish, which is so unusual, she looked nervous and restless, she was pacing before my feet like a lion in a cage (again, unusual), and her wobbling seemed to get a little more pronounced. When the dishes were ready, she ran to her dish, which she usually doesn't do, she walks, doesn't run, and she ate her meal ravenously, another thing that she doesn't do. It was so weird that I shot a video of her eating so nervously. She ate as she had been starving for a week.
As soon as she finished her meal and turned around, she wobbled and fell on a side, she stood up again and fell on a side again, then she tried to walk, but she kind of dragged her hind legs, and was swaying from side to side. She tried to jump onto a chair, but she failed and fell backwards.

I quickly pushed her into her carrier and rushed her to the vet clinic, where the vets agreed that something was wrong. The vet palpated her on her back and she fell that there was a spot that hurt Freya. They immediately ran an X-ray and found a hematoma along her spine, under her skin. The vet said that it was a fresh thing and asked me if I had noticed any incident at home this morning.
The fact is that every single morning, when it is time for me to prepare their dishes, my cats wrestle and chase each other. It is likely that this morning Freya banged into something, like the table or a chair leg, but I didn't see anything.
The weirdest thing of all, though, was the content of Freya's GI tract. The X-ray shows some grainy material in her stomach and in all her intestine, even in her feces! All grains are the same size and shape.
The vet asked me if Freya had access to dirt from a flower pot (we don't have indoor plants) of if she eats the litter. None of them is true. Furthermore, I use vegetable litter, so the litter shouldn't even show in an X-ray. This is a mistery. I'm shocked!

Freya has been hospitalized after the emergency visit. She has been put on a IV drip, she will be seen later by another vet, I should have an update around 2 pm (CET).
The vets will collect her poop today and try to understand what that weird and mysterious material is.

In the light of this, I think that the vets might even review their decision to reduce the phenobarbital administration if they think that any neurological reason is behind the episode.

 

[Kflowers]

Poor Freya. How frightening. I'm glad you at least have some vets to hand and that they are doing something. Again, how frightening.

 

[fionasmom]

Would it be that the first month is 75% of the current dosage, then 50%, then 25%?

This is what I would think it is.

I am glad that you got Freya to the vet so quickly. The contents of her GI tract are hard to figure, but I do wonder if she is not quite able to be weaned off the pheno and that caused the other reactions you saw.

 

[Antonio65]

Freya got back home last night at 8 pm, after a whole day at the clinic on an IV drip and a pain killer for the hematoma on her back.
As soon as she arrived home, she told me she was hungry. She didn't eat anything at the clinic.
She was ravenous, voracious, like never before, and it wasn't because she was hungry. Something in her head was telling her that she had to eat fast and a lot. She had two portions for dinner (never happened before) and kept looking for food for over an hour, she would chew on anything she saw. Then, all of a sudden, she fell asleep, exhausted.
At night, past 2:30 am, she got restless again, until 7 am. She used the litter once during the night, once this morning.

Today she was a little better, less voracious, but she still can't walk properly, she fell a couple of times. She tries to jump oh higher elements, but she often fails and falls on the floor, it seems she can't realize she hasn't the full strength to do that.
She got extremely vocal. When I call her name, she replies back with a loud meow. Before yesterday, she would rarely meow back at her name. And she got extremely affectionate, she wants to stay next to me all the time.
Clearly she is not herself.

The vets said that that weaning her off the phenobarbital is now out of question, and probably we won't deal with this issue again. They even said that they would have liked to up the dosage, but not now.
The advice is to keep a close eye on Freya for a few days. A blood work will be done next week, Monday.

As for the weird material in her GI tract, I found out it was ground bones in their wet food. It's a premium quality wet food, I've been buying it for a couple of years now, and no issues arose so far, but it is likely that this last lot was defective. The fact that Freya had lots of that material in her GI tract means that it wasn't just a single can, but a few cans. I didn't realize of that, the food comes in paté, and I didn't see any unusual texture in the last few days.
It also means that Giada, the other cat, has the same material in her belly!
Anyway, I will inform the manufacturer and tell them they have lost a loyal customer.

 

[neely]

I'm just catching up with your thread but poor Freya and you have been through the ringer, (so to speak). I'm so sorry. I have no words of wisdom but special thoughts and hugs for both of you. Please keep us updated when you get the bloodwork results after next Monday.

 

[Antonio65]

We had a vet visit Tuesday, at 6 pm.
The vet said that everything was fine with Freya. I filled him in with the details of the last few days, when nothing weird or unusual happened.
The vet took some blood for labs, which came back yesterday and everything was clear but CPK which was 580 (32-371) and according to the vet, this was the sign of a muscle trauma due to the tension Freya was under during those couple of days.

The advice is to go on with the phenobarbital.
If a new weird episode occurs, we will re-check the drug level in her blood (we did this a month ago).
I will keep a close eye on her. If nothing happens, we will re-check the drug level next year.
So it sounds like we can't wean her off the medicine for another year.