Living with epilepsy - Introduce yourself & meet others

@santosha also how do you feel on lamictal I saw you were taking it. I have dizziness and get nauseous.
I can only take a low dose. Not sure if you saw my comment about the book on being vegan.
Kelly

Fellow members, my adult son has had temporal lobe epilepsy for about 20+ years and has been on about every med imaginable without any long term success. In 2021 Mayo preformed laser ablation and that helped reduce daily seizures about 20%. Then in Jan 22 he had a VNS implant. that too reduced some maybe another 25%. But occasionally he suffers from multiple seizures back to back. Mayo wants us to consider a Deep Brain Stimulator. Would to love to hear any feedback about DBS from the community. As for supplemental treatment using CBD and THC Mayo doctors have been pretty gun shy about including that in their medical plan.
My son has a medical MJ card and weekly uses one of the combination CBD and THC and despite our best tracking, we can not imperially tell you that neither any of them work 100% as many have prophesied. Epilepsy has just too many variables to draw untested conclusion. Generally speaking it does seems to lower his over-all stress and perhaps lessen the stress trigger. Too bad that some institution(like Mayo) doesn't begin a long term controlled study on the benefits of using THC and CBD.

Hi @jamessr
Lazar abalation seems scary at least it reduced it by some. I agree with you that epilepsy has so many variables and so many different diagnosis with different people to go with untested diagnosis.
I live in NM Cannabis is legal here and it’s easy to get but that goes to show they not the medical meducinal kind you have to be diagnosed for that just like you said. Best of luck to you and your son.
Kelly

Hi @heal33
Sorry for not replying before. It seems Jasmine from Nutrition & Santé (the French company I have told you about) is not present in the United States. But for sure, you have other good gluten-free brands in your country. I see that Schär, another brand I buy much, is sold in the US at Walmart. Their gluten-free products are excellent. They also have cookies. Give it a try!
You said you also have read Brave New Medicine from Dr. Cynthia Li and that you have tried some things she has suggested. What have you tried? Would you mind sharing?
After this book, I read "The End of Alzheimer's by Dr. Dale Bredesen as my mother has this disease. He also defends a gluten-free diet for Alzheimer's patients.
Have a nice weekend!
Santosha

Hi Kelly ((@kel1)
I did a vegetarian diet many many years ago (in the early nineties) for detox, well before knowing I had epilepsy (I was diagnosed with it in 2019). But I understand that in such a diet (as well as in the vegan one) it is important to be followed by a nutritionist, so as not to become deficient in vitamins and important minerals.
I can imagine how difficult it must be to follow the Keto diet. A gluten-free diet is a far easier diet to follow and does not need to be accompanied by a nutritionist, as it does not have risks. As mentioned to @heal33 my mother also does a gluten-free diet as part of her Alzheimer's treatment as recommended by her doctor of Chinese Medicine. Interesting to observe that this diet is also beneficial to this neurological disease/condition.
Thank you for your book recommendation!
Santosha

I tried Lamictal for 4 months and had to stop it because of strong insomnia I had with it. This was the first AED I tried after my epilepsy diagnosis in 2019. It did not have many side effects, but staying without sleep was driving me crazy!!!! My doctor at that time gave me medication to sleep, which helped just a bit and brought other bad side effects. I did not feel dizzy and get nauseous with Lamictal. I had this side-effect with Vimpat, having trouble eating and losing a lot of weight!
Santosha

@kel1, just to avoid any misunderstanding, my birth control pill does not cause seizures. they are caused by menstruation and hormonal variation. Therefore, I take a birth-control pill without any pause, so as not to get my period every month.
Santosha

Hi @jamessr and @kel1
I agree with you that epilepsy like other neurological diseases (i.e.such as Alzheimer's) has so many variables. I believe there is still much progress that needs to be done in the study of those neurological disorders by our conventional medicine.
It is sad to see that Medical Cannabis is still not much used to treat certain diseases. I believe it has to do with the pharma lobby, unfortunately. Though CBD has not controlled 100% my seizures, it has helped me to reduce them and I feel much better with this treatment rather than with AEDs. As I said, I prefer to have 2 seizures a month with the CBD, rather than no seizures at all, but to be unwell, sick and in bed like I was with Lamictal, Tegretol and Vimpat. In addition to CBD, I am on a gluten-free diet, which has clearly brought benefits in my seizure reduction. @jamessr has your son tried any kind of diet to see if this might be beneficial for him?
Laser ablation as well as conventional epilepsy surgery seem also scary to me, but unfortunately there is no other option for certain patients. Therefore, for those that can not control seizures with AEDs (like it is in my case), I would try any other alternatives such as diet, CBD, Chinese, Ayurveda and Integrative Medicines before going for surgery.
Best of luck to all of us!!!!
Kind regards,
Santosha

Santosha,
Guess I should look it over for more suggestions. As I mentioned she talked about the vagus nerve as one suggestion including gargling. I chew gum, hum and sometimes sing (when no one is around) which stimulate. You can also try a cold shower but don't know about that. I've heard you only have to splash water on your face (cold water). She mentions meditation which I have never really gotten much out of but don't know how to do it the right way. I think I should cut down on use of the computer as I am probably sensing the flashing light from it same as you would be a television. I think it is called photosensitive epilepsy which is not common.
Breathing is also part of the meditation which is important. Buteyko breathing may help.

Hi @heal33
Thank you for your reply. Hope you have had a nice weekend :-)!
Regarding meditation, for me it would be hard just to sit down and be able to enter a meditation state. I practice traditional hatha yoga, starting with asanas/postures and followed by pranayamas (breathing exercises), which help me to prepare myself for meditation. Many people understand yoga as a practice of postures/asanas. Yoga is much more than that (there are 8 stages in yoga practice: starting with nyama, yama and asanas and ending with samadhi). The asanas and other techniques are just tools to access more your inside and to help you to reach a meditative state. Those tools help you to focus on your body and control your mind. Even so, my mind still escapes. It is a training.
Putting my yoga experience in words would limit very much this experience. The best is to try and see if it is something for you.
Have a nice week!
Santosha