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← Return to Weaning off keppra protocol?
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@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
Replies to "@louissc Hi Louis, I'm so sorry to hear that you felt so hopeless that you wished..."
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@keeg1010
Hi Kerry,
Thanks for the kind words! I know there are many kind souls here ever so ready to share their experiences which can be of help to someone living thousands of miles away. This is indeed a great group.
It’s s likely Mayo does telehealth, but I believe I still need to be physically present at the pharmacy to collect medication. I also prefer to meet my neurologist face to face. One frustrating thing about epilepsy is the effects of medication need time to show its level of effectiveness. It’s not paracetamol. Appointments are once 2-3 months. How many months do I have left in life to continue dealing with it? I may not even find a combi of medication which works till my death bed. Not to sound depressing here, it’s a fact I just gotta face. I keep myself upbeat by telling myself I’m already the lucky one; being able to continue eating KFC whenever I want and still walk upright. Just that a Filipino caregiver now needs to be at my side and I treat her as a friend.
MTS is challenging, to put it mildly. I couldn’t imagine what it’s like when your family first heard Keegan would have to deal with it. I wish your family the best and have more positive experiences to come.
Cheers,
Louis
P/S I realized I must have visited Arizona when I was a kid since I had been to Grand Canyon. It’s magnificent. Really.