How to avoid side effects of drugs.

Posted by jaspal @jaspal, Apr 5 1:01am

Hello everyone, Had a series of seizures in 2022 after I was still recovering from Covid. Been thru painfull times. Being just 18 yrs (male) docs put me on sodium Valporate. It worked, but in about in about 6 months time, my liver was declared fatty (Non-alcohlic). My pancreas accumulated sludge. Was on liquid diet for about a month to recover. And, had to switch medicine. Doc put me on 1000mg levepsy (Levetiracetam). Now, again its effecting my moods. Going thru huge swings and severe headaches (migraine?). This is forcing me to think - switching medicines every 3-4 months should be a useful trick to avoid (or minimize) side-effects. But doc clearly refused and suggested me to stick to this only. would be thankful if you can share Any experiences ? or advise in the matter? Regards.

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@jaspal
I wouldn't switch seizure medicines as a preventative for side effects. All seizure medication's have significant potential side effects so you may just be trading some side effects for others or perhaps they'll be worse with another medication.
You also run the risk of increasing the possibility of breakthrough seizures, increased frequency, or intensity.
Also, I doubt any physician would be willing to go along with your plan. If you are consistently switching, your medication's driving may become an issue unless you live in a country where anyone with an epilepsy diagnosis has been banned from driving for live.
I'm not sure if you're taking an extended release medication but sometimes those help to decrease side effects but if the mood issues are bothering you, you probably should switch medication. Have you ever discussed the medication Lamictal with your physician?
Whatever medication you settle on, you should always make sure that your refills are from the same manufacturer.
How often were you having seizures?
One member here on connect stopped using anti-convulsant medication's and switched to a gluten-free diet which I believe decreased her seizures by 60% and also does yoga and meditation I believe. Her seizures have decreased significantly without the side effects of the seizure medication.
Take care,
Jake

REPLY

Hi @jaspal
What Jake (@jakedduck1) has shared is true, unfortunately. All AEDs have potential side effects. Some people can tolerate them better, others not.
As it is known, 1/3 of people with epilepsy have refractory epilepsy or drug-resistant epilepsy. Here is a link with more information on that: https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy
Has your doctor considered this possibility in your situation? If I may ask, what kind of epilepsy do you have? I ask that because there are certain types of epilepsy with a higher refractory percentage, like the temporal lobe, especially the mesial temporal lobe epilepsy (with sclerosis on one part of the temporal lobe).
I am one of those with refractory epilepsy, having mesial temporal lobe epilepsy. I have tried 5 AEDs (including extended release) and got worse, either in terms of seizures or hard side effects. I have so with the help of one epileptologist stopped with AEDs, switching to medical cannabis (pure CBD) in 2021. It did not control 100% of my seizures, but then with the help of iets, trigger management, exercising, and yoga, I have reduced them much. As Jake has well mentioned, just by taking gluten out of my diet (January 2022), I have reduced my seizures by 60%, having an average of 2 or 3 partial seizures per month. Gluten causes gut inflammation to every person, to some more, to others less. Here is a link explaining more about that: https://drperlmutter.com/epilepsy-gluten-sensitivity/
Based on these good results, I have since then been working on a lifestyle change, including a healthy diet (since last November I have been on an anti-inflammatory diet with low carb and sugar and it seems to be helpful), lots of exercising (Pilates and brisk walk) and yoga (I practice hatha yoga and also yoga nidra), trigger management and supplementation (Vitamins B, Omega 3, CoQ10, etc. )
Lifestyle change requires some effort. To be successful at those changes and maintain them, one has to start slowly, changing one thing at a time. To be more clear on what I am trying to express here, earlier this year I went to a nutritionist to give me support on my diet and supplements and she has put me on a very rigid diet, changing too many things at the same time and I could not keep it. It is also important to make one change at a time in your lifestyle so that you know the contribution of each change in your seizures. Anxious to reduce even more my seizures, I have made more than one change at a time and now I do not know what has been helping me in my seizure reduction. It was a mistake!
I hope to have helped you a bit.
Wishing you and all here a nice weekend!
Take care!
Chris (@santosha)

REPLY
@jakedduck1

@jaspal
I wouldn't switch seizure medicines as a preventative for side effects. All seizure medication's have significant potential side effects so you may just be trading some side effects for others or perhaps they'll be worse with another medication.
You also run the risk of increasing the possibility of breakthrough seizures, increased frequency, or intensity.
Also, I doubt any physician would be willing to go along with your plan. If you are consistently switching, your medication's driving may become an issue unless you live in a country where anyone with an epilepsy diagnosis has been banned from driving for live.
I'm not sure if you're taking an extended release medication but sometimes those help to decrease side effects but if the mood issues are bothering you, you probably should switch medication. Have you ever discussed the medication Lamictal with your physician?
Whatever medication you settle on, you should always make sure that your refills are from the same manufacturer.
How often were you having seizures?
One member here on connect stopped using anti-convulsant medication's and switched to a gluten-free diet which I believe decreased her seizures by 60% and also does yoga and meditation I believe. Her seizures have decreased significantly without the side effects of the seizure medication.
Take care,
Jake

Jump to this post

Thanks very much @Jake for elaborate answer.

very true, if the side-effects are totally recoverable then definitely, no point switching; but was wondering if switching would limit the amount of harm a drug does on given organ (like my liver , although largely recovered, is now said to be still susceptible/ prone to ....)

quite rightly, and as my docs also say, all epilepsy drugs have some side effects and there are few risks in unnecessary switching.

yes my medicine is not ER, shall talk to doctor on my next visit. have also started regular Yoga.

Whats so different about Lamictal ?

thanks again and Best wishes.

REPLY
@santosha

Hi @jaspal
What Jake (@jakedduck1) has shared is true, unfortunately. All AEDs have potential side effects. Some people can tolerate them better, others not.
As it is known, 1/3 of people with epilepsy have refractory epilepsy or drug-resistant epilepsy. Here is a link with more information on that: https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy
Has your doctor considered this possibility in your situation? If I may ask, what kind of epilepsy do you have? I ask that because there are certain types of epilepsy with a higher refractory percentage, like the temporal lobe, especially the mesial temporal lobe epilepsy (with sclerosis on one part of the temporal lobe).
I am one of those with refractory epilepsy, having mesial temporal lobe epilepsy. I have tried 5 AEDs (including extended release) and got worse, either in terms of seizures or hard side effects. I have so with the help of one epileptologist stopped with AEDs, switching to medical cannabis (pure CBD) in 2021. It did not control 100% of my seizures, but then with the help of iets, trigger management, exercising, and yoga, I have reduced them much. As Jake has well mentioned, just by taking gluten out of my diet (January 2022), I have reduced my seizures by 60%, having an average of 2 or 3 partial seizures per month. Gluten causes gut inflammation to every person, to some more, to others less. Here is a link explaining more about that: https://drperlmutter.com/epilepsy-gluten-sensitivity/
Based on these good results, I have since then been working on a lifestyle change, including a healthy diet (since last November I have been on an anti-inflammatory diet with low carb and sugar and it seems to be helpful), lots of exercising (Pilates and brisk walk) and yoga (I practice hatha yoga and also yoga nidra), trigger management and supplementation (Vitamins B, Omega 3, CoQ10, etc. )
Lifestyle change requires some effort. To be successful at those changes and maintain them, one has to start slowly, changing one thing at a time. To be more clear on what I am trying to express here, earlier this year I went to a nutritionist to give me support on my diet and supplements and she has put me on a very rigid diet, changing too many things at the same time and I could not keep it. It is also important to make one change at a time in your lifestyle so that you know the contribution of each change in your seizures. Anxious to reduce even more my seizures, I have made more than one change at a time and now I do not know what has been helping me in my seizure reduction. It was a mistake!
I hope to have helped you a bit.
Wishing you and all here a nice weekend!
Take care!
Chris (@santosha)

Jump to this post

Thanks Chris.

Pained to know about refractory nature of your problem. Anyway, best wishes, on your diet and lifestyle changes. Your recovery is quite encouraging and Hope you can totally get rid of the problem.

Mine is grand-mal with no anatomical malformations. I guess glutten free and yoga is the way to go..

best wishes everyone !

REPLY
@jaspal

Thanks very much @Jake for elaborate answer.

very true, if the side-effects are totally recoverable then definitely, no point switching; but was wondering if switching would limit the amount of harm a drug does on given organ (like my liver , although largely recovered, is now said to be still susceptible/ prone to ....)

quite rightly, and as my docs also say, all epilepsy drugs have some side effects and there are few risks in unnecessary switching.

yes my medicine is not ER, shall talk to doctor on my next visit. have also started regular Yoga.

Whats so different about Lamictal ?

thanks again and Best wishes.

Jump to this post

Hi @jaspal
What I have heard and experienced with Lamictal is that it is one AED with fewer side effects. Indeed, I had much fewer side effects with this AED than with the 4 others I tried. I had a bit of skin rash at the beginning (it disappeared later) and insomnia. I had to stop with Lamictal because of insomnia.
Chris (@santosha)

REPLY
@jaspal

Thanks Chris.

Pained to know about refractory nature of your problem. Anyway, best wishes, on your diet and lifestyle changes. Your recovery is quite encouraging and Hope you can totally get rid of the problem.

Mine is grand-mal with no anatomical malformations. I guess glutten free and yoga is the way to go..

best wishes everyone !

Jump to this post

Thank you for your kind words @jaspal
I try not to put many expectations on being completely seizure-free. My battle is mostly to be feeling well and have a "normal" life.
Thankfully you do not have anatomical malformations!!! God bless you!!!
Give it a try to stay at first 1 month gluten-free. This is what I did in November 2021, reducing my seizures to 4. In December 2021, I went back to my regular diet at that time, it was Christmas time and my seizures rose again back to 13 in that month.
As to yoga, here in the Western, yoga was much modernized and transformed many times into something that is not truly yoga. Keep in mind that yoga should be a mental exercise. The postures (asanas) are the first tool to help you bring your mind into the present moment and focus on what you are doing to reduce your mind's rumination. Postures should always be comfortable!!!
Best wishes to you!
Chris (@santosha)

REPLY

Thanks . Shall surely try gluten free.

Yes, yoga is much more than just stretches and exercises... Its the mind that matters most.

Many times i feel its the 'thinking type' personality that is the major culprit. anyway can't change personality type so easily...

best wishes !

REPLY

@jaspal
If you can, do please share with us your gluten-free experience in the future. Today, we thankfully have many options, including gluten-free bread, pasta, and many other products (made for example out of rice flour). One advice: always read the labels of the food products you are buying at the supermarket. There are some products you would never imagine that do contain gluten such as mustard, ketchup, mayonnaise and many others.
Wishing you success in this trial!
Have all a nice weekend!!!
Chris (@santosha)

REPLY
@santosha

Hi @jaspal
What Jake (@jakedduck1) has shared is true, unfortunately. All AEDs have potential side effects. Some people can tolerate them better, others not.
As it is known, 1/3 of people with epilepsy have refractory epilepsy or drug-resistant epilepsy. Here is a link with more information on that: https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy
Has your doctor considered this possibility in your situation? If I may ask, what kind of epilepsy do you have? I ask that because there are certain types of epilepsy with a higher refractory percentage, like the temporal lobe, especially the mesial temporal lobe epilepsy (with sclerosis on one part of the temporal lobe).
I am one of those with refractory epilepsy, having mesial temporal lobe epilepsy. I have tried 5 AEDs (including extended release) and got worse, either in terms of seizures or hard side effects. I have so with the help of one epileptologist stopped with AEDs, switching to medical cannabis (pure CBD) in 2021. It did not control 100% of my seizures, but then with the help of iets, trigger management, exercising, and yoga, I have reduced them much. As Jake has well mentioned, just by taking gluten out of my diet (January 2022), I have reduced my seizures by 60%, having an average of 2 or 3 partial seizures per month. Gluten causes gut inflammation to every person, to some more, to others less. Here is a link explaining more about that: https://drperlmutter.com/epilepsy-gluten-sensitivity/
Based on these good results, I have since then been working on a lifestyle change, including a healthy diet (since last November I have been on an anti-inflammatory diet with low carb and sugar and it seems to be helpful), lots of exercising (Pilates and brisk walk) and yoga (I practice hatha yoga and also yoga nidra), trigger management and supplementation (Vitamins B, Omega 3, CoQ10, etc. )
Lifestyle change requires some effort. To be successful at those changes and maintain them, one has to start slowly, changing one thing at a time. To be more clear on what I am trying to express here, earlier this year I went to a nutritionist to give me support on my diet and supplements and she has put me on a very rigid diet, changing too many things at the same time and I could not keep it. It is also important to make one change at a time in your lifestyle so that you know the contribution of each change in your seizures. Anxious to reduce even more my seizures, I have made more than one change at a time and now I do not know what has been helping me in my seizure reduction. It was a mistake!
I hope to have helped you a bit.
Wishing you and all here a nice weekend!
Take care!
Chris (@santosha)

Jump to this post

I'm super refractory with daily episodes of focal impaired awareness seizures. I have an RNS, which at least gives you something to talk about. It's been a few days since I finished tapering off Hellpakote. I'm not even sure why they put me on that med. Anyways, I remain on Lamictal, Aptiom, Clonazepam, with rescue meds like Valtoco and Ativan, but they do nada, nothing. Surgery? Nope, not ready to give up. As a left dominant with left foci (amygdalae), there are new things emerging: stem cells, a new RNS device created at ICHAN Mt. Sinai, promising drugs with UM. It's an endless quest, maybe for nothing.

REPLY

Hi Guys,
I just watched this video on uric acid by Dr. David Perlmutter. Have you had this measured by your doctor? To have a uric acid below 5,5 is important for our neurological health and overall health. Learn more in this video: https://www.youtube.com/watch?v=QZ6jPCcFNa8
@jaspal, he makes a brief mention of gluten in this video as well.
Chris (@santosha)

REPLY
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