Marilee,

Welcome to NT. Sorry for your struggles.

My first suggestion would be to find an upper cervical chiropractor. Your right side weakness may be related to an upper neck injury.

You mentioned a history of sleep disorders. Do you have sleep apnea? If so, are you being properly treated for it?

Sleep apnea and PCS can combine to cause a miserable cluster of symptoms.
The terrible headaches, unbelievable fatigue, nightmares and disturbed sleep, foggy brain can all be both PCS and sleep apnea.

The recommendation to get a good vestibular check out is also worthwhile. Not all ENT's are equal. Try to find one with experience with PCS vestibular issues. Search this forum for other vestibular posts. There have been many.

The 'lots of medicine' sounds like your neurologist is taking shots in the dark. Not many drugs will help with PCS.

You said: < I’m very sensitive to noise – I haven’t had a lot of success being in large groups of people / in public. Going to the neurologist is a major undertaking – all the stimulation and long way to walk in that enormous building can make me sick for days. Last time I was down for 8 days afterward.

Ringing in my ears. Some days I wake up with blurred vision. Reading and using the pc for more than an hour or so generally brings on the headaches. Light sensitivity. I spend a lot of time resting and/or sleeping >

These are all classic symptoms. Have you tried dark glasses and foam ear plugs? At least for the time being, you will benefit from reducing the sensory stimulation both auditorily and visually.

Have you started a journal? It will be helpful. Also, make notes to take to your doctor's appointments.

You might ask for some help at your appointments. Even to the point of asking for a volunteer to push you in a wheel chair to your doctor's office. Then, use the ear plugs and keep you eyes down or even closed. This may sound extreme but your ability to communicate with your doctor is important.

I tell people that I have an auditory processing disorder. They will usually accommodate me. Your sensitivity is a processing disorder. Combine auditory and visual disorders and you get overwhelmed and exhausted. Been there, done that.

Women can be extra sensitive to concussions during the low progesterone part of their cycle. This is right after their period. Also, hormones can get whacked way out of balance by PCS.

Regarding reading, you might experiment to see if you tolerate different types of reading better than others. For me, fiction easily overwhelms me. More technical or analytical writing is easier for me.

Also, a page covered with print may be visually overwhelming. Try using a blank sheet of paper to cover parts of the page that you are not reading. I have to do this when filling out forms. If there are too many empty boxes or lines to fill in, I get lost with all of the blank spaces.

I am interested in what meds your neuro has tried to help you with.

Let us know how you are doing.

My best to you.