New Diagnosed & Struggling to Read. Help? Advice?
Kinda background TLDR. We’re still doing the genetic test here this upcoming month, to find out which sporadic gene I have. But I have just gotten the HM diagnosis due to the severity of the presentation of my ER trips have been the last two months into my local neurology departments.
Long story short. In March I had two severe HM’s in one week that had me on stroke watch in the ER. In April, I had 3 HMs in 6 days back to back every other day in and out of the ER twice on Stroke Watch - that’s the Diagnosis. All clear, MRI etc.
Edit for clarity: mine present as full one sided facial droop, entire loss of speech, and loss of ability to communicate for up to a day.
Im an extremely voracious reader, I have been all my life. I read 90 books in 2023, 98 in 2024, and broke my record of 243 in 2025. I love reading. It not a brag it’s just showing how drastic this is.
I started noticing this pressure headaches in January building up to the HMs in March. In january I was reading my usually 5-7 books a week. My reading started slipping because these unusual pressure pains and spikes in my head. I started becoming unable to focus and just not reading.
When the HMs started happening I noticed that I couldn’t read. Like my concentration and focus was shot. Of course it presents like a stroke so they test like a stroke and do the full comprehension tests etc. But the further along I got and the more often that these HMs happen.. the more I notice, I’m not recovering like I thought I would.
I took me 3 weeks to finish a physical reading book I had. I couldn’t focus on it and it was during this time I had those triple attacks. It kept getting worse. I finally finished but it was a push. I keep trying to read more but I find it difficult. I read on my kindle but I track how long it takes and it takes me 2-3x as long to read than it did before.
I know for some this may seem not as bad.. but for me, reading has been my whole life. it’s all I’ve done since I was a child and could read. it’s my escape. it’s what got me through these first attacks and made it bearable. So struggling to read more than a book a week? it’s heartbreaking. it so frustrating and I feel like my brain is just wrong.
I was going to bring this up to my neurology appointment I have anyway.. but does anyone have advice? maybe just something that comforted or helped you when you first found out or it happened to you? I’m so new.. I don’t even know exactly what’s even happening to my brain. I don’t have resources or anything right now. Just meds, kinda.