PCS Symptoms worsen when I'm up, eye stuff
 

Hello all, I've been reading the forum for a while and it is a lifesaver, I don't feel so alone. I'm 3 months into this and trying to be patient with the speed of recovery. I spend a lot of time laying down because the symptoms worsen when I'm up for long and after I'm up a while my brain is so foggy (in addition to all the other lovely symptoms) I struggle to make even simple decisions/focus. Is this typical to have the symptoms worsen when you're vertical instead of horizonal? Does anyone know why this would be the case?

The second question I have is about my eyes. I have trouble tracking in general and looking up at an angle. Also, after I've been up for a while, my vision blurs on the upper edge and I feel a slight pressure or heaviness there, anyone else had this?

Hi Becca and Welcome to NT.

Vision issues are not uncommon with brain injury. I read of a case where a man was actually left blind in one eye - but didn't know it. Did your doctor mention any signs of damage to your occipital lobe? Have you seen a neurologist? Checking your ability to track objects should have been part of the standard examination.

As for the worsening of symptoms when you get up, I'm sure more knowlegeable members will weigh in on this. It may be a vertical vs horizontal blood flow/blood pressue issue. I wonder, however, if it might have something to do with something as simple as extra physical and mental exertion.

In the first few months after I woke up, just walking around the room left me exhausted, dizzy and stuttering like mad. Three years in, pushing myself too hard, mentally of physically, aggravates my symptoms. It takes most PCS patients time to find and adapt to their new limits.

Cheers

hi bacca
 

hi becca and welcome

just before xmas I had a CT cisternogram to try to diagnose an occult CSF leak I had a CSF leak coming from my nose,

it started 2 days after my fractures lasted 12 days and now runs down the back of my throat ,

as a consequence of this I suffer from orthostatic headache, on being upright or on exertion .plus tinnitus, visual disturbances, nausea , and balance issues,

now these can also be symptom of a TBI or a combination of both and to be honest I cant tell any more,

if as part of your injury you had a thin clear liquid coming from your nose or ear it maybe worth mentioning it to your docs

but do not worry your self needlessly

Hi Becca,

I'm sorry you are going through this. This forum has been so helpful to me. I don't have much knowledge to bring, but I'll be here to listen if you need to rant. I'm glad you found this site.

What was your initial injury? What doctors have you seen? Are you on any medications?

Welcome!

Thanks Kate, sorry I missed this somehow, not too surprising I seem to miss a lot of things now. ;-) Anyhow, I was trying to finish a home improvement project in the dark (smart, I know), moving fast, coming out from under a deck, thought I was clear, wasn't, slammed my head against the corner beam. I've seen a GP who referred me to a neurologist, had a bad experience with the first one, went to another and he is great. I'm slowly seeing improvement with many of the symptoms except the dizziness, eyes and ears. We tried physical therapy for dizziness and balance for 2 months and it didn't help much. The neuro referred me to a neuro-otologist to rule out damage to my inner ear. I am still in the midst of that so I don't know anything yet. The neurologist gave me some prednisone shots in my head where I hit it and the back, where I had a lot of pain, it helped with headaches. He also tested all my hormones and some nutrients in my blood. Found out I am hypothyroid (don't know if that was there before the conk or not) and low on Vit D (haven't been in the sun much for the past 6 months). Started Vit D supplements about a month ago and it has helped with energy levels, started thyroid meds about a week and a half ago, too early to see results yet. Kind of a bad day today and I'm feeling discouraged, but if I'm objective and step back, I know I've come a long way in the past several months, I just want to be ALL better, guess patience it hard for me. I know everyone feels that way, this is frustrating stuff. Thanks to all who post and encourage, it helps a lot!