@keeg1010
Hi Kerry,
I did secretly wish my life ended there and then. I’m an atheist. Perhaps there’s a reason why I didn’t leave this world? I don’t know.
There are so many kind people here in this forum. All willing to share experiences and I hope I had done so in some way. I did a read up on CBDs only to realise they are illegal here, unfortunately.
Generic drugs are cheaper because they have a a little more “fillers” and less active ingredients. I understand why many stick to brand name ones. Public clinics/hospitals use generics because they are cheaper.
I live in Singapore; Taipei is a mere 4.5 hrs flight time away with no time difference. I might have considered Mayo if not for the flight time (≈15hrs direct to SFO).
My insurance coverage for this condition is gonna end soon and I gotta plan how should I navigate this. I don’t mind paying more if it works. I can enter US easily, visa free, seek treatment at Mayo if need be. For how long should I take this still more convenient route of staying in Asia before going elsewhere? I don’t know.
I’ll share here when I decide to go NTUH and finally end my local treatment. And yes, there are quite a number of popular acupuncture clinics in Singapore. TCM had a long history, and since it’a natural thus unlikely to clash with western medicine, I am considering giving it a try.
From the other thread regarding Briviact, many had shared their experiences and frankly some sounded scary. I’m to start on it tonight, 25mg first. My seizures are daily when it was once every 3-4 days, but intensity of each episode had decreased. But according to those around me, I looked noticeably more tired these past couple of weeks. I don’t know why.
I wish Keegan the best and the condition continuing to improve.
Cheers,
Louis
@louissc
Hi Louis,
I'm so sorry to hear that you felt so hopeless that you wished your life had ended right there and then. I do believe that there is a reason you are here and you still have purpose to fulfill in your life. Sharing your story is a wonderful thing, because you never know who you are going to touch with your experience or who is struggling with the same issues.
I am so sorry to hear that prescription CBD is illegal in Singapore. That really was the turning point for Keegan. Definitely keep us all posted on how things are going and if you decide to go to NTUH, as well as how Briviact works for you. I am not familiar and I haven't seen the scary posts about other peoples experience with it. I think every AED is scary and have so many side effects and you never know how you'll respond. I'm hoping that it is helpful for you. I know seizures take such a toll on your body. Whenever Keegan has one, he sleeps all day long after.
If Mayo is an option, I would definitely keep that in mind. I don't know if they do telehealth appointments but might be something worth checking into.
Just know that you are not alone. This forum is full of people who care and are willing to help in any way they can. This is a great group and a great resource and like I said before, was my lifeline when Keegan was first diagnosed.
Take care of yourself and keep in touch. Wishing you the best!
Kerry