Can anyone suggest any other medication besides Keppra for seizures?

Posted by 1710dave @1710dave, Aug 18, 2020

Can anyone suggest any other medication besides keppra for seizures.These pills are destroying my brain and body.The pill attacks my miscle so bad I cannot walk some times the pain is so bad in my legs.The pill is like a statin and it does damage to your muscle and tendons it is calls rhabdomyolysis.The doctors are no help at all, they just say all the pills have side effects and leave it at that.Hope someone has a suggestion.Thank you Dave

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@louisez79
One thing that is perhaps interesting to share with you, Louise, and @1710dave. I had some problems with one of my knees after I have fallen due to balance problems (side effect of Tegretol). I have tried many things, infiltration, physiotherapy, massage, etc. But what has been helping me the most is Pilates. In the past, my husband had severe back problems and could avoid a second surgery with the practice of Pilates.
@1710dave I also believe Vimpat, which I have taken after Tegretol, was not doing good to my body either. Since I have withdrawn this med this year, my knee seems to be healing faster.
Have a nice day :-)!

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hi santoshia – nice to hear from you today, thank you for your advice. i do have a 11/10 appt with the neuro, which i believe will be the last appt with her. if not, i am going to ask for a new neuro, one that will listen to the patient. one situation that i am currently dealing with – i do not sleep well, lucky to get 2-4 hrs of sleep per night. feels like my brain will not shut down for sleep. i have taken trazadome which works occasionally – will help to get to sleep, but then i wake up every 2 hrs, or it doesn't work at all. i will speak to the dr about this. you take care, stay healthy, and hope we will stay in touch.

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Hi @louisez79, Good Morning
Not every doctor listens to his or her patients, unfortunately. I have experienced that myself in my epilepsy journey. Hope you can find a doctor that listens to you, gives the attention you deserve, and has compassion. I understand it is important that the relationship doctor-patient becomes a partnership.
Take you too good care of yourself. As Dr. Cynthia Li mentions in her book Brave New Medicine, healing is a proactive mindset.
Have a lovely day!
Santosha

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@santosha

Hi Leonard!
The other way around. I see I have not expressed myself very well, I am sorry. I can remember my aura (simple partial seizure), as at this point I am still aware. But I can NOT remember my complex partial seizure as at this moment my awareness gets impaired. I believe I know that I have had a seizure because all my seizures start with an aura and about 95% of them evolve to complex partial seizure. If my seizures would start directly with a complex partial one, I ask myself if I would be able to know I had a seizure??? Additionally, a few times I also get a feeling of seizure risk, some hours before it I have it.
I can not tell you if yoga has decreased or not my seizures, but for sure it has helped me in many ways since I was diagnosed with epilepsy some 3 years ago. I have been practicing hatha yoga and yoga nidra since 2018. It has for sure helped me to calm down and decreased my anxiety, a symptom of my epilepsy. With yoga, I have also learned to listen more to my body and to hear what it is trying to tell me (inhabit your body) as well as to develop more my intuition (right side of my brain that has no sclerosis). Those feelings of a seizure risk I have developed with my yoga practices after learning to better listen to my body. Yoga nidra helps me much to recharge my batteries during the day. As I have already mentioned in other posts, I have sleep problems, getting tired during the day. Therefore, almost on a daily basis, I practice yoga nidra after lunch, feeling reenergized after it. It is said that 30 minutes of yoga nidra can correspond up to 2 hours of deep sleep. Interestingly, I have observed that my chances of having a seizure are higher when I do not practice my yoga nidra (bad or lack of sleep is one of my main triggers). Last not least, yoga philosophy has helped me to better deal with my epilepsy for example, to live more in the present moment rather than the past and/or the future. This has taken much off weight off my shoulders. If we observe, many times our mind is in the future trying to solve problems that do not exist yet or to anticipate problems that have not already happened. Somehow, with this way of thinking, much of my fear of a next seizure has vanished (I have refractory epilepsy with about 5 to 8 seizures a month).
Nowadays, there are many lines of yoga. Hatha and Haja yoga are traditional yoga lines with uncomplicated postures (assanas). Just a curiosity, I have heard that those complicated postures of yoga have been mostly developed in modern yoga, when India was a colony of Britain. This was a way Indian people could show the strength and vigor of their body to the British.
Curiosity, what kind of yoga have you practiced, Leonard? Could you share your experience with us?
Have a nice day!
Santosha

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@jakedduck1
Hi Leonard
Very recently this week, I came across this video and Andrews-Reiter approach to epilepsy, which has caught my attention, remembering our exchange of experiences about yoga.

"Donna Andrews and neurologist Joel Reiter believe stress can cause seizures. And the epilepsy treatment they have designed is based on that belief."
"Andrews' theory is that rage, panic and worry can create dangerously erratic neural firings in everybody, not just epileptics. In people without epilepsy, these erratic firings don't cause seizures because their seizure threshold, or ability to tolerate irregular bursts of cerebral electricity, is higher. But in epileptic patients with damaged neurons already prone to overfiring, these electrical surges can create seizures."
"Consequently, epileptics who seek treatment at the Andrews-Reiter Research Program are given training in relaxation and deep breathing."
Here is a complete article on the Andrews-Reiter approach to epilepsy: https://joshuakors.com/epilepsy
Have a nice weekend!
Santosha

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@dawn_giacabazi

@1710dave
Here’s some information that you might find helpful.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
I highly recommend contacting your insurance company to see if Mayo Clinic is in your network. I went through Mayo Clinic’s Epilepsy Center and I haven’t had a seizure since. They are fantastic. Before going through the seizure clinic, I was having seizures daily for several years tried dozens of different medications and always felt horrible. They admitted me to the seizure clinic and after 10days I was taken off all my old medications and started Trileptal which was the perfect drug for me! No crazy or weird side effects for me. But keep in mind ever patient is different what works for me may not work for you which is why their clinic is so perfect. They find what WORKS FOR YOU!
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
Time for second opinion.
Dawn 😉

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Thank you

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Great article @john1492, thank you for sharing it!
I have already been exploring some of those alternative ways of treating epilepsy, I have refractory epilepsy (Temporal Lobe with Mesial Sclerosis on the left Hippocampus).
Last year, I have started to treat myself with full-spectrum cannabis with high CBD and since the start of this year, I take pure CBD. Though my seizures continue, they have in general become much milder and I am feeling much better. Additionally, I practice yoga (hatha and nidra), which has been helping me much in terms of anxiety (an epilepsy symptom) and feeling better.
I also pay more attention to my alimentation, trying to include nutrients containing magnesium, other vitamins, and probiotics (I have read some studies showing a relation between some types of epilepsy and the gut). I also take omega 3 as a supplement.
I can for sure say that my life quality has improved much!
If anyone is interested, I am more than willing to share my experiences.
Have all a great day! 🙂
Santosha

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someone said to see a epilepsy specialist is there any difference than a regular neurologist

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@1710dave

someone said to see a epilepsy specialist is there any difference than a regular neurologist

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For sure @1710dave! I have seen a great difference between my current doctor (epileptologist) and the others (neurologists and psychiatrics) I have seen. If one has refractory epilepsy as I do, I more than recommend a neurologist specialized in epilepsy (epileptologist). I am feeling much better with my current treatment and it is clear to me that my epilepstologist is much more knowledgeable than the other doctors with whom I have treated myself before. If only I knew there is a neurologist specialized in epilepsy before…

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@1710dave
I agree with @santosha. Epileptologists receive more training than general Neurologists. However, I'd ask the Epileptologist or any other Neurologist who claims to specialize in Epilepsy.
Jake

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@santosha

Great article @john1492, thank you for sharing it!
I have already been exploring some of those alternative ways of treating epilepsy, I have refractory epilepsy (Temporal Lobe with Mesial Sclerosis on the left Hippocampus).
Last year, I have started to treat myself with full-spectrum cannabis with high CBD and since the start of this year, I take pure CBD. Though my seizures continue, they have in general become much milder and I am feeling much better. Additionally, I practice yoga (hatha and nidra), which has been helping me much in terms of anxiety (an epilepsy symptom) and feeling better.
I also pay more attention to my alimentation, trying to include nutrients containing magnesium, other vitamins, and probiotics (I have read some studies showing a relation between some types of epilepsy and the gut). I also take omega 3 as a supplement.
I can for sure say that my life quality has improved much!
If anyone is interested, I am more than willing to share my experiences.
Have all a great day! 🙂
Santosha

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Hi Everybody!
Perhaps in my last post, I gave the wrong impression that I self-treat myself. All I do is with the orientation of my epileptologist and his consensus, including yoga, alimentation, vitamins, etc.
Wishing you all a nice week!
Santosha

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