Hey QHraiser,
Just checking in. I’m still getting “the numb” too. In fact, it’s starting to creep down my face right now. You know that feeling. It’s the ‘oh crap. Here we go yet again’ feeling. I’m so used to it. I’m SO TIRED of it by now. Atleast we know we’re not having heart attacks. I’ve had facial and right side numbness since the start, so it doesn’t freak me out any more. But it’s still disconcerting.
Im still taking 900/600/900 mg of Gaba a day, with Nurtec to use when I get the big bad migraines. That Nurtec has been phenomenal. It really truly works for me. It’s expensive as all get out. Eight pills is $1200.00. It’s part of the triptans family, and there isn’t a generic version yet. That’s why it’s so expensive. Insurance covers it for now. And it’s my understanding that there’s coupon available for it, making it free, on the manufacturer’s website. Also, I think the FDA just approved it as a migraine Preventative. Definitely worth asking your Neuro about.
I FINALLY was able to find a new neurologist here at Univ. of Minnesota, and I’m thrilled. She’s capable, down to earth, and has a good sense of humor. It took forever to get in to see her. But the part that was nuts- that there were so many procedures and appts. on my charts that were supposed to be done but were not because it was lost during the beginning of Covid. I wasn’t even told about most of it. But she discovered it all on the first appt I had with her, and she read thru everything on my charts. a) I was supposed to have a Angio/MRI with dye as a follow up, one year after surgery to make sure the brain flow diversion was good, and hadn’t developed any bulges or problem areas. b) I was to have cognitive testing and therapy to help with memory loss and brain fog. c) EEGs done to measure for seizure activity and make sure the heavy brain fog I do get, and the numbness, isn’t actually seizures.
So I’m in middle of getting all of this done now. I hate MRI machines now. At the start of this AVM journey, I thought they were vaguely interesting. Like, ‘hey cool! That’s gonna look inside of my head! Science is cool.’ But now I hate climbing in them with their loud clanking and tight spaces. I’m not claustrophobic, but I don’t look forward to it.
I do feel like I’m in better hands with the new doc. She wants to get me off the gaba if possible because this probably contributes to my constant fatigue. She already started me on Verapamil, which is also a blood pressure med, to try and get head pressure down. I just started it, so I don’t know if it’s working yet or not. I’m not in a good spot yet physically, but I see some light in the tunnel. I’ll take whatever I can get! 
Ernie continues to be a great joy! That little white dog has gotten us out of the house and walking a lot, and just made us laugh constantly. He’s a blessing in disguise, even with all the new puppy training we’ve had to do. When he discovered barking, I thought I was gonna die from headache, or maybe laugh to death, because he was just so impressed with himself that he COULD bark! We quickly jumped on that training, and barking is a minimum now. Yay!
I wish you and everyone here, a VERY Merry Christmas! 
I know Covid is making it hard for families to get together, but I’m just glad we’re all still upright, walking and talking, and fighting our AVM fights with as much grace, and humor, and strength, as we can muster. As far as I’m concerned, we should get medals!
much love,
K8te
