Hi everyone! before i begin thanks for this site, skimming through posts has helped me understand better.
my story is short as its still pretty new.
for the past 10-15 years i’ve been having some memory, balance and speech issues and what i thought were heart issues I’m sure some other issues too but i forget, duh memory issues lol.
I’d forget things that just happened, forget what i’m talking about. go into rooms forget why i was there, loose thing i just put down… that sort of thing. I’d mess up my words… i’d call the microwave the lawn mower or the remote control a giraffe…
At first i thought it was from being a heavy drinker and semi drug addict in high school… then i thought maybe early onset alzheimer’s, then i thought lymes (recently tested came back mostly clean)
the past 5-8 years i’d start to loose feeling in my legs and fell more than a few times, couple times down the stairs… get extremely dizzy when standing.
Its steadily gotten worse over time.
In June I had some full blown seizures. laying on the ground flopping like a fish according to my wife totally confused no idea what was happening, where i was… who this strange women standing over me was… but somehow i knew to use Alexa to call for help between the seizures. Given it was a few one right after another she got me to the ER. I was seeing things… that felt like memories but they were not mine… it sounds weird but I still see them from time to time when i close my eyes. its probably some sort of day dream or something i saw on TV but its weird… brains are funny.
I was admitted, they put me on Keppra IV, I had another seizure over the first night but after that it seemed to calm down but i think the medicine was making me dopey. they did an EEG, X-rays and an MRI… probably other stuff too but yeah… memory issues. they said everything turned out okay but said i should see a neurologist.
Now our hospital is pretty bad. I’d probably have better luck getting a correct diagnosis by going to an elementary school nurse. (filing a complaint soon(ish)). The Hospitalist let me go after all the results came back kept me on kepra for the time being, cleared me to drive and work which shocked me. My nurse fudged it and gave me an extra day off cause there was no way i could drive there at least until i got used to the meds (20miles away)
Got an appointment with a neurologist, after the initial questions my wife answered most and such… he gave me some standard tests. counting backward buy 6’s or something that i failed horribly, (which sucks because i was great at math), basic sobriety test… failed it all except touching my nose. that sort of thing.
We got a copy of my tests on CD ( our hospital sucks, but we knew it in advance so always get a copy of stuff they do ). With in 30 seconds he said under his breath something along the lines of “how did they miss that?”
fairly large black spot in my MRI that showed up on the left side, looked through some other tests and his expression went form hopeful to depressing and confused the more he looked at the scans and results. He said the report from the radiologist doesn’t come close to what he is seeing (which is why you should always get your results not just the reports). Hes sending me for an MRA to confirm ( this friday ) he said something of the effect of, just to prepare me… due to the location it likely isn’t operable. Doing so I’d loose motor functions speech and what little is left of my short term memory. He also said it could be an error in the scan or something to that effect as MRIs don’t always interpret these sort of things correctly.
Switched my medicine to Lamgtine (or something like that) which seems to be working better, and feeling better weening off the kepra, less tired and more alert… most of the time.
I also noticed since starting taking anti seizure meds my arthritis in my knees and hands is not as bad and my back hasn’t been hurting as much… I’m starting to wonder if i might not have been having issues in my sleep (or just not noticing?)
Ever since my bout with the seizures i’ve had a constant headache… I’m not sure if its because i hit my head pretty hard and probably concussed… or if its whatever is wrong in my brain. Tylonol kinda takes ‘the edge’ off… ibuprofen seems to make it worse.
I notice it becomes worse with stress and physical activity. I was chasing my daughter around for a few minutes, fell and started shaking but never lost consciousness and had a little control. Also My department of 4 has become a department of Me most of the time, and I work in IT. Stress is rough and displayed similar symptoms but i sit on my butt 80% of the time.
I don’t remember a lot of what i typed so i’ll finish here, and say thank you. If it is an AVM and not something else… I felt like i was screwed before… but now with you guys i can see a light and hope for some semblance of a normal life.
If confirmed i’m sure i’ll have a lot of other questions. things like, if i cannot drive long term, i cannot work (we have 4 or 5 locations many miles apart) and my wife driving me in every day is not a sustainable option (shes got her own health issues) that sort of thing…