Hope you're okay ):
IntotheBlue03
Member 39 From Philadelphia PA
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Hope u are okay
Any improvements?
How are you doing now?
How have you been was thinking about you today
The QEEG doesnot lie. Made a fool out of another doc today. When a doc says it's anxiety, they don't have the skill set to treat u.
Recommend a qEEG for any1 suffering TBI Visual/auditory disturbances.Will tell u more than 100 doctors ever could. I have vertical Nystagmus
Well hoping to die in my sleep at this point.I'm out of money and time and nothing is helping. Saccadic Oscillations will be the death of me
Hi! Quick question. So, my Dr delayed the LDN and I finally got the script today! How much did you take and when you say you T went to a 1 are you bothered by it at night at all or not hearing during the day etc?
Epiphany: This is all coming from CCI that caused a TBI. So furious these idiot docs have all wasted my precious time.
Running out of options, hope you all are well. Do not know how to live like this. 24 hours of torture and disorientation.
Vestibular therapy went terrible. Don't think visual is connected to Vestibular. Lady was unbelievably cold. These people are horrific.
im sorry to hear that.
Some suggestions: salivary hormonal and lyme testing?
Did you oscillating and wine glass zing go away
Absolutely broken. Best ENT in Tri-State area says I'm a "tough case" and gives me another "I don't know". I really cannot take anymore
i may be wrong, but have you considered anti virals ?
get lyme tested? perhaps you have neurolyme?
are you still on 4.5mg? apparently a wash out and restart the ldn can help improve its effectiveness again. either that, or increase the dose of the ldn?
please let us know how you go. dont give up. you can do this and we are all here for you XXXXX
Tinnitus is making a comeback, don't think this and the visual nightmare are survivable.
Got desperate & went to Wills Eye to req dilating drops. Slowed spinning significantly. Hope OT is onto something with this acc. spasm
OT from Neuro Visual in NYC also identified severe Accommodative Spasm yesterday. Hoping new prism/progressive glasses+therapies will help
Vestibular Eval found positional vertigo in weird unusual canals. Accommodative spasm visible. Hope this helps
Hey have you had a lumbar puncture to test for many neurological degenerative conditions like neuromyelitis optica and MS?
Microdose keep you calm?
This also explains why the prednisone was effective early on.
Must add I was doing VT w/ a garbage PT 4 3 wks w/ no results. Never did the tests on me that I had last night. Wasted time=suffering.
I've had 2c multiple specialists in the same area to find decent Docs who are now talking to each other. THAT is what we are missing!
I should have never progressed to this point. The US HC system is a death sentence. Hoping I can reverse this & balance both systems soon.
No explanation except for MDing hit the 2 week point at which I was advised I should notice some improvement of some sort. Day 2 same result
That lessened eye strain seemed to allow my eyes to focus together better so I felt I could see more. Greatly reduced the Cog Fog as well.
I am now starting VT&Vision Therapy at the same time and hope this can correct this. MDing for 2 weeks & noticed less eye strain yesterday.
So just had a VT assessment w/ the best in my Area. Fell right over w/ certain Tests. Vestibular Hypofunction w/ Visual Compensation. -
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