Weaning off keppra protocol?

@keeg1010

Hi Kerry,

I tried posting a reply but my post needed to be scanned or something,

Anyway, to cut story short, the post stated any national carrier's safety video is a great way to get to kmow a country's culture. Ours (Singaopore Airlines) will show you more of the country, Malaysia Airlines; will reflect more of the airline in a creative way and of course British Airway's will showcase British humor. Perhaps the youtube links I posted drew some red flags so maybe it's a better idea for you to search for them instead, If you have any questions, do feel free to ask! You can see our public housing, fruit unique to this part of thr world and the street food in Singapore Airlines'. Neighbourhoods are where youll find the public housing, and over there that's where you'll finid those mom & pop stores. Singapore is an expensive place to live but affordable for a tourist if you visit those neighbourhoods.

Do come over with Keegan and your husband! You need to be here to feel those vibes yourself. And from here you can fly to other parts from south east Asia like Bali. There are so many daily flights between our 2 countries. United has 2 daily flights from SFO and this is their flagship route. Singapore Airlines (SQ) has 2x daily flights from SFO, LA, each NYC airports, once daily from Seattle and soon to begin Houston from June. Yeah, I am sure Keegan will be thrilled if all of you can stand the 15 hour flight no matter the class of travel. There's just so much to see and do in this part of Asia different from other parts of Asia.

Cheers,
Louis

@keeg1010
Hi Kerry, Good Morning!
This feeling is absolutely mutual — this community truly is something special!
To know we could offer some comfort to you and Keegan in those early days, fills my heart 💜.
Blessed to call you friend, too 😊.
Chris

@louissc
Hi Louis,
I guess maybe they didn't like the links but I will do my homework. Keegan actually does well on a plan. We flew 15 hours to Hangzou, China and he did great, except for the fact that he refusted to sleep the entire flight. My other 2 boys were out cold for the last half of the flight..LOL
How are you doing with the Briviact? Any side effects showing? Still seizure free?
Kerry

@santosha

Hi Chris,

Do let me know if you think I’m being a nuisance and spamming this forum.

Cheers,
Louis

@louissc
Hi Louis,
I'm so happy to hear you've been seizure-free and with no major side effects. Santosha, I would say! Fingers crossed that Briviact continues to bring you benefits!
Yoga has been a true gift for my life. My mother practiced it regularly and would try to bring me along to her group sessions when I was younger, but she couldn't convince me back then. Staying quiet while focusing inward was a challenge I simply wasn't ready for at that time. Then in 2018, I gave it another try. This was one year before my epilepsy diagnosis, at a time when my absences — which I now know were seizures — were increasing, and I was dealing with a great deal of anxiety, sleep problems, and mental agitation.
Yoga has calmed my mind, offered deep relaxation, and improved my sleep, but its most remarkable gift has been teaching me to truly listen to my body and its signals. Today, I can sometimes recognize my prodromes, those subtle, subjective feelings that a seizure may be approaching, sometimes hours or even days before it occurs.
For anyone who hasn't yet tried yoga, I'd recommend starting with group sessions. Yoga goes far beyond postures. It's far more of a mental practice than a physical one. Here in Brazil, more and more hospitals are offering it as a complementary therapy, particularly for patients in cancer treatment. Some private schools have also introduced it for high school students to help reduce anxiety, improve sleep, sharpen concentration, and build emotional resilience, all especially valuable during the high-pressure period of university entrance exam preparation.
From what I understand, Singapore has a rich Indian heritage, which means finding an authentic, traditional yoga studio shouldn't be a challenge. Give it a try!
You asked about the role of a neuropsychologist. This professional plays a truly valuable role in epilepsy care, addressing its cognitive, emotional, and behavioral dimensions in depth. I was first referred to mine for a cognitive assessment by the doctor who diagnosed my epilepsy. She carried it out with such care and kindness that I've continued working with her ever since. She's helped me enormously, first in accepting my epilepsy and the life changes it brought, and later in coping with the ongoing challenges of treatment and cognitive changes. I'm so grateful to have found her and wholeheartedly recommend this kind of support!
Have you had a cognitive assessment at any point in your epilepsy journey, and if so, who performed it?
Chris

@keeg1010

Hi Kerry ,

Good morning from Singapore. It’s Thursday, 0730 here and am about to start my 5th full day and after 5 nights of Briviact. Yup, so far so good. I’m staying cautiously optimistic and not let my expectations overcome me just yet.

China is an amazing country. Unfortunately, I had only been to the bigger cities like Hong Kong, Beijing and Shanghai and that’s more than 10 years ago before epilepsy. I heard from an old Chinese gentleman who’s staying at the next block things in Shanghai are now reaching Singapore’s level.

There are just so many things one can do onboard a plane nowadays. Newer ones even have Wifi! Being able to sleep onboard any flight is a blessing. I was out cold on that flight to Taiwan because nothing in the inflight entertainment interest me. My mom complained about me snoring so loud. I thought she should be used to it by now. Oh the food you can see in the safety video? They are not exactly for the health conscious.

Cheers,
Louis

@louissc
Hi Louis,
I had started to respond but it got lost somewhere so I'll try again. I am so glad to hear you are doing well with Briviact and haven't had any seizures. I'm keeping my fingers crossed for you that you continue to tolerate the medication. Like you said, so far, so good. Keep me posted!
China was definitely a wonderful experience. We learned a lot about the culture. The people there were so warm and welcoming. They were very curious about us having 3 boys. I think I have several pictures of people we never met that just wanted a picture with our boys. It was wonderful. We got to go to the markets and visit West Lake. I wanted to go to the Great Wall but we were too far away.
What website should I look at for Singapore? I'm excited to see the culture and the food! I think the vendors have the best food, especially the mom and pop shops. I definitely don't focus on healthy when I'm eating at a vendor. You just have to enjoy the little things in life and good food is one that I love.
Keep me posted!
Talk soon,
Kerry

@louissc
Hi Louis,
Not to me at all! I've always been drawn to different cultures and perspectives, and I was fortunate to have had an academic experience where students from many different backgrounds, industries, and places brought such rich and varied perspectives to our discussions.
I feel the same way about this community. The fact that members here come from so many different walks of life, each with their own unique experience of living with epilepsy, makes this group all the richer.
I believe that by exchanging our different treatment experiences and the many ways we've each learned to cope and live with epilepsy, across different journeys, places, and cultures, we only strengthen what we have here together.
Chris

@louissc @keeg1010
Like Kerry, I'm so happy for you, Louis!
That cautious optimism of yours is a wise companion on this journey — hold on to it.
In my own experience, the things I've wished for most intensely have often been the hardest to reach. My yoga teacher puts it beautifully: attachment to outcome — even the longing for a state of peace — agitates the mind and becomes its own obstacle. It's like trying to fall asleep by forcing yourself to sleep; the effort itself keeps you awake. So I try to practice this in my own life, keeping the fear of another seizure at bay rather than letting it take hold.
Has anyone else in the group experienced something similar?
Chris

@santosha
Hi Chris,
I have certainly experienced that regarding life in general but also very much so with Keegan. Thank goodness you were there during several of those times. I will never forget what you said. You told me if I'm in a plane and we're in trouble to "put my mask on first" or I'll be no use to anyone else. That was some of the best advice I've ever been given because I do tend to jump into action without thinking about the consequences it has on my health. That will stay with me for the rest of my life. I thank you, friend, for your kindness, knowledge, and positive attitude.
Love and hugs, my friend,
Kerry