@trkuk I’m in the US. I’m a nurse at the hospital where I was treated. The only useful information I was given was by the stroke coordinator RN. She advised me to only go to the grocery store for a couple items or I’ll be overwhelmed. I didn’t think that would be true, but it’s a stressor. I found a Facebook group called SASS (Seriously Awesome Stroke Survivors) that’s based in Nashville (where I live), but they also no longer have live meetings. We did do a Zoom yoga session that was nice. This forum has been nice because so many on here are going through the same things. Even though our stories and recoveries are all different, we can relate to each other. The stroke neurologist did say recovery would be a rollercoaster, and he wasn’t kidding. He said he would’ve never known I had an event by talking to me, and that I didn’t need follow up (I saw him one month post). However, I’m going to ask to be referred to our balance center to have inner ear and eye tracking tests done. I’ll get some bouts of dizziness if I do a lot of turning and sometimes vertigo that hits out of nowhere (not as often though). It’s been almost 10 weeks, and I do feel better than I did. I have no deficits as far as memory and motor skills, and my concentration has very much improved. I had migraines before and they are continuing, along with other types that are frequent. I’ve read on here that some continue to have vertigo 2.5 years later....yikes! It’s so scary when it happens since the dizziness was my only symptom. My fistula is closed, so you’d think that would give me relief since that’s what caused the event, but it’s still so new. I’ll have a repeat angiogram in the Spring also. I’ve had a few CTs and MRIs since September, and I’m told they look good. The anxiety has been the worst part of all this, but I have gotten better. This year, even the last few months, have been hard. I had another health scare in June (blood clot caused from oral contraceptives), lost my dad in July suddenly, and then my latest incident. I have found a therapist which is helping, and last week I started an online Tai Chi course (I read it’s been helpful with other stroke patients, and also with migraines). I’m able to workout, but I try to not do too much in one day. I’m definitely grateful to have come out of this as good as I have. This all happened 5 days before my 44th birthday, and I’d had no major health issues aside from having my appendix out and the dAVF that wasn’t supposed to be aggressive. I’m so much more appreciative of life and the things I have now.

How are you? Thank you for responding, it’s helpful to be able to talk to others who have experienced this. I participate in another online group called AVMsurvivors.org and a lot of people on there are from the UK. It’s nice to “meet” you!

Hi @trkuk and @snoopyrn sorry to hear of your cerebellar stroke. I had a ruptured AVM (ArteroVenousMalformation) in my cerebellum. Basically i had a bleed in my brain about 4 years ago. It was totally repaired 3.5 years ago. My last surgical repair left me with neuropathy on the left side of my body. The cerebellum is the part of the brain that gets affected when one drinks so I have issues with balance and coordination. My vision did get affected. I have double vision for which I plan to have corrective eye surgery in a year when the surgery will be 100% covered by my medical insurance. My disability is physical and not cognitive.
Since my last surgical repair I have not seen a neurologist. Has the neurologist offered any help? I did not take medications before nor do I now. I don’t know if a medication was prescribed that helps with your stroke. What has helped your vertigo? Because of the double vision I often feel nauseous from motion sickness. Do you feel nauseous also?
At first because of the dizziness I used a wheelchair to get around. I relearned to take steps again with a walker. My brain has difficulty with depth perception so it is hard to balance or walk on grass and gravel. It is easier for me to walk on a level surfaces. Recently physical therapy has taught me to walk outdoors with a cane. I am able to do more now. My motion sickness limits my mobility. I am hoping to decrease that within a year so I can do more. Wish you both well. Toni