@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 Since I have withdrawn this med this year, my knee seems to be healing faster.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 :-)!

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.

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

@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

Thank you

View Translation

All who want to learn MORE about EPILEPSY (treatments, etc.), please refer to the following link – https://www.medicalnewstoday.com/articles/317922?utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=MNT%20Daily%20News&utm_content=2021-11-23&apid=35635228&rvid=f92e6feed3556a5aeceddf23d440179b03e6feb9a11d7f456bdb6da5fcd75656 Will have to cut & paste in your browser. JAH, PHD

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

Vimpat

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

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…

@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

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