I had VM in August and was in hospital for five days. Now we are approaching December I am still getting quite a lot of times when I walk into a shop (or such) get to the till and hand them my bus pass instead of a credit card. I also get totally confused sometimes. I often go for a walk and feel disoriented and weird.
I almost always forget what I get up for when I am at home.
Talking with people is really odd as I tend to "trail off" mid sentence and forget what I was talking about. I can remember a song from the 50s up to the 80s in a flash but not what was played last.
I can walk into a place and forget why I am there. I am a bit worried :/ but will face any battles.
Have you read Starry’s thread, “Cranial Osteopathy May be helping..?” I’m having similar problems so I’m keen to know how that works out.
Firstly, though, I’m trying to remedy migraine-like neuropathic pain. Gabapentin is helping, but adding to the “stupid-head” problems - so I’m giving acupuncture a go too.
I had VM 18 months ago and I think the general consensus is that’s doctors do not prepare you or fully appreciate the neurological or cognitive impacts of VM. Neither do a lot of other people, especially when the effects are not necessarily visible.
I can fully relate to how you feel. The first time I left the house two weeks after I was discharged from hospital I went into a shop to buy something, got to the till and couldn’t remember how to open my purse to get the cash out. I knew I needed to open is somehow but my brain just wouldn’t work so I ended up bursting into tears, throwing my purse at the cashier, told her I had been poorly and asked for her help. She was great and she did but that’s when I experienced my first panic attack. Although over 18 months things have got better I still experience this a lot. I struggle to pay with any money as I find it really hard to work out how many coins I need, adding money together to get the correct amount and that can bring on a panic attack. I struggle in busy situations, like shopping centres I get really dizzy and disoriented. I struggle to problem solve and multi-task. Just simple tasks such as driving and talking to someone or unpacking shopping and my son asking me questions I have to stop and focus on one thing at a time. I also forget words and can be the same in conversations and trail off mid-sentence because I can’t remember or focus on what was being said.
I’ve had two CT scans, MRI and full extensive blood tests and all haven’t found anything. My physiotherapist discharged me after a month because he couldn’t do anything for me as I have nerve damage not muscle damage. I am now waiting to see a neurologist.
I’m sorry I haven’t got any answers to your problems but please know you’re not alone in this and others can relate to how you’re feeling.
Heather - Thank you your words are very re-assuring as I am getting a bit worried about dementia and such. I'm 67 with the life and fun of a 40 year old! I think I may keep a note on my phone to show people if/when I get stuck so they will at least be more understanding. Or maybe a piece of laminated card in my wallet. Mmmm!
I was offered cognitive training skills by my GP but didn't think I needed them. I regret saying no to that :/ Thank you Heather. D
I was 26 when I got VM with a newly turned 3 year old son and it’s hard. I understand your worries about dimentia but I would think it’s more likely neurological effects from VM. Maybe a visit back to your doctor and ask to be referred for cognitive training?
My mums suggested for me to keep a message in my purse or a wear a band with a short message on but it’s not something I’ve pursued, I’m not sure why really.
Keep going, it does get easier or more you learn certain coping strategies and mechanisms to put in place to help you. Try and be as honest as possible with people about how you’re feeling or what you’re experiencing at the time.
Mine was in July last year. It was right after a major surgery for a tumor (it wasn't my year) and unfortunately things kepts getting worse for me until I was finally diagnosed with ME in September this year.
I have just started meningitis now's alternative therapy programme after hearing good things about cranial osteopathy.
I had had a very bad deterioration in August following family stress plus virus and went back off work with very severe cognitive issues as well as physical ones PEM, dizziness, balance, reflux to name a few.
The very first proper therapy my cognitive issues improved substantially. The thinking seems to be about releasing trapped fluid in the brain. Its not at all plain sailing but i had lost all hope of recovery and at least now I have something to focus on.
There's a more detailed discussion under my thread in the Myalgic Encephalomyelitis group as Gnugoo says.
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