Anyone taper off Primidone?

Posted by rosa66 @rosa66, Jun 5, 2022

How did you do it? Side effects?
Started Primidone April 2021 for essential tremor. Taking 50 mg/am and 50 mg/pm.
At the same time tapered off an antidepressant which has caused terrible discontinuation syndrome.
BUT drugs.com show many of my symptoms could be from Primidone!
Worsening depression/anxiety, agitation, insomnia, lack of appetite, etc.
Anyone else experience this?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Hello @rosa66. I am wondering if you have consulted your doctor about your interest in tapering? Is it your intention to taper off both drugs or the one that seems to be causing you more side effects?

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@amandajro

Hello @rosa66. I am wondering if you have consulted your doctor about your interest in tapering? Is it your intention to taper off both drugs or the one that seems to be causing you more side effects?

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I have. Am 9 months off a too rapid taper of Paxil and declining. I’ve read that Primidone can have side effects like increased depression and anxiety which is ruining my life.
I wish the neuro had told me pros and cons b4 prescribing. I’m also 66 with osteoporosis and it is not recommended according to drugs.com and Mayo 🙁
They also put me in ambien and Ativan the past 6 weeks and I’m getting worse. So scared about getting off them all

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Hi @rosa66
I’ve not heard of Primidone. But I’m tappering off of Keppra at a very slow process. I haven’t had a seizure, but the side effects we weren’t expecting. Depression/anxiety/my body being ice cold/ the smell of the drug leaving me/ you name it.
I wish my neurologist would have told me the bad side effects of it but I think she was more concerned about not having a seizure but the affects of it leaving me are harder if I’m being honest.
Just like Primidone. I’ve not heard of that but good luck I hope my post helped you because tappering off any epileptic drug and stressful.
Kelly

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@kel1

Hi @rosa66
I’ve not heard of Primidone. But I’m tappering off of Keppra at a very slow process. I haven’t had a seizure, but the side effects we weren’t expecting. Depression/anxiety/my body being ice cold/ the smell of the drug leaving me/ you name it.
I wish my neurologist would have told me the bad side effects of it but I think she was more concerned about not having a seizure but the affects of it leaving me are harder if I’m being honest.
Just like Primidone. I’ve not heard of that but good luck I hope my post helped you because tappering off any epileptic drug and stressful.
Kelly

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@kel1 have you tried acupuncture to see if it helps you with the bad side-effects of getting off Keppra? Hatha yoga is something that helps me much in controlling my anxiety.
It seems that many doctors are more worried about our seizures than our general well-being. At least, this is the impression I got from some doctors while I was being treated with AED. With many doctors, it seemed that being seizure-free was more important than my overall well-being (sleeping well, in a good mood, active, etc.).
Stay strong Kelly!!!! Wishing you the best of luck in tappering off Keppra!
Have a nice weekend!
Santosha

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Hi @santosha sorry it took so long to respond. I haven’t tried acupuncture. But I’m a fan of meditation and yoga and what not. That’s what the book I recommended suggests with a healthier diet and all. You’re right doctors only prescribe the drugs to stop the meds but they never truly and how we’re doing or how we’re feeling on the emotional side. It’s only how we’re doing/feeling too alter the drugs.
So I agree with you.
It’s ironic because i talk yo my primary doctor and he was able to talk about mt emotions see how I was doing and what not then he tappered me off keppra he cared differently than my neurologist so did my pharmacist. It’s weird.
I think they only care more about the drugs they prescribe so they don’t do anything wrong.
Hope your weeks going well.
Kelly

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@kel1

Hi @santosha sorry it took so long to respond. I haven’t tried acupuncture. But I’m a fan of meditation and yoga and what not. That’s what the book I recommended suggests with a healthier diet and all. You’re right doctors only prescribe the drugs to stop the meds but they never truly and how we’re doing or how we’re feeling on the emotional side. It’s only how we’re doing/feeling too alter the drugs.
So I agree with you.
It’s ironic because i talk yo my primary doctor and he was able to talk about mt emotions see how I was doing and what not then he tappered me off keppra he cared differently than my neurologist so did my pharmacist. It’s weird.
I think they only care more about the drugs they prescribe so they don’t do anything wrong.
Hope your weeks going well.
Kelly

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No worries @kel1, it has been a busy week over here as well.

Allow me to share one extract of a poem called Herd Keeper from Alberto Caiero.

"I try to undress myself of what I learned
I try to forget the way of remembering that I was taught,
And scrape off the ink with which my senses have been painted,
Unbox my true emotions,
Unwrap myself and be me… not Alberto Caeiro,
But a human animal that Nature produced"

This poem extract was mentioned in one of my yoga lessons this week to define what is true yoga. For me, it goes beyond that. With my epilepsy experience, I have gone through such a process of undressing and unwrapping myself. I somehow got reborn. This extract of Alberto Caiero's poem has touched very deeply inside. Perhaps it also inspires you and others in this group?

Have a lovely day 🙂
Santosha

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@santosha

No worries @kel1, it has been a busy week over here as well.

Allow me to share one extract of a poem called Herd Keeper from Alberto Caiero.

"I try to undress myself of what I learned
I try to forget the way of remembering that I was taught,
And scrape off the ink with which my senses have been painted,
Unbox my true emotions,
Unwrap myself and be me… not Alberto Caeiro,
But a human animal that Nature produced"

This poem extract was mentioned in one of my yoga lessons this week to define what is true yoga. For me, it goes beyond that. With my epilepsy experience, I have gone through such a process of undressing and unwrapping myself. I somehow got reborn. This extract of Alberto Caiero's poem has touched very deeply inside. Perhaps it also inspires you and others in this group?

Have a lovely day 🙂
Santosha

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Hi @santosha

I love the poem. I’ll send some of mine from my meditation books soon. It helped a lot what your posted. It gave me a new light about my epilepsy and that it doesn’t control me or own me and I’m still me.
Thank you for sharing it.
Btw I tried yoga lol never worked but now I do meditation it’s a lot easier
Kelly

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@kel1

Hi @santosha

I love the poem. I’ll send some of mine from my meditation books soon. It helped a lot what your posted. It gave me a new light about my epilepsy and that it doesn’t control me or own me and I’m still me.
Thank you for sharing it.
Btw I tried yoga lol never worked but now I do meditation it’s a lot easier
Kelly

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Hi @kel1
Thank you for your kind words. Happy to know that my posts have helped you 🙂 🙂 🙂
What kind of yoga have you tried, if I may ask you? So many lines of yoga have been invented in our era, some yoga lines that I would not really call yoga.
I practice traditional yoga: Hatha Yoga. The postures (that we call asanas) are just one tool we use in yoga practices to connect with ourselves and facilitate meditation. Traditional yoga has 8 limbs:
1. YAMA – Restraints, moral disciplines or moral vows
2. NIYAMA – Positive duties or observances
3. ASANA – Posture
4. PRANAYAMA – Breathing Techniques
5. PRATYAHARA – Sense withdrawal
6. DHARANA – Focused Concentration
7. DHYANA – Meditative Absorption
8. SAMADHI – Bliss or Enlightenment
Dharana, Dhyana, and Samadhi are the core of a yogi’s meditation practice. So yoga (hatha yoga) is also meditation.
Have a great week! Santosha

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Hi @santosha

I’ve tried YAMA yoga. Also ASANA and PRANAYAMA the breathing excercises. However mine might be different than what yours is. My breathing exercises are called fire breaths or rapid breaths where you don’t breath for 50-100 breaths and then let it out. It’s from Queen Aufua the author I mentioned. It takes practice it made me light headed the first few times but it actually helped me calm down with my med reducing. So far I’ve made it to 80 rapid breaths.
It’s a very calming experience.
I have more tips from that book if you want.
Have a great week
Kelly

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@kel1

Hi @santosha

I’ve tried YAMA yoga. Also ASANA and PRANAYAMA the breathing excercises. However mine might be different than what yours is. My breathing exercises are called fire breaths or rapid breaths where you don’t breath for 50-100 breaths and then let it out. It’s from Queen Aufua the author I mentioned. It takes practice it made me light headed the first few times but it actually helped me calm down with my med reducing. So far I’ve made it to 80 rapid breaths.
It’s a very calming experience.
I have more tips from that book if you want.
Have a great week
Kelly

Jump to this post

Hi @kel1
Yama yoga is quite new to me, I imagine this yoga type/line focuses much on yamas and nyamas and Patanjali philosophy, correct? I could not find much about it on the internet, got interested.
I just know kapalabhati as rapid breaths. Important that this line of yoga calms you down.
Wishing you still a good Sunday evening and a good start to the coming week!
Santosha

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