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Thanks @ThomasF i know ur right they’re just so hard to find. Waiting on Dr. Shores device and praying it brings relief for all of u/us.
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.
Hi all, Just checking in on the consensus of what we will see when the study is unblinded. Are any of you not expecting to see the results until...
Hello All, Still suffering but for anyone who may find this thread, I just want to re-emphasize the value of having a qEEG done when you are...
Thanks @Uklawyer. I am quite disappointed in this as I don’t see why the two can’t be decoupled on separate tracks (FDA and peer review). It seems...
Hey @Uklawyer, Nice to hear from you. Are the rumors true that they won’t be releasing the preliminary results until after the peer review?...
Hi all, Hate to bother everyone but very much struggling still between my severe visual issues and spiking tinnitus currently. Can anyone...
Hey @LostinTX no worries glad to help nope I never had any issues with LDN whatsoever and still don’t. I think it’s helping with an undiagnosed...
Seen neurologists, neuro ophs, vestibular and vision therapists, neuro optometrists, functional neurologists, ENTs, and at the end of that long...
Thank u both kindly there is hope as I’ve now had my 5th qEEG with another HCP who found Vertical Nystagmus again despite it not being found on...
Recommend a qEEG for any1 suffering TBI Visual/auditory disturbances.Will tell u more than 100 doctors ever could. I have vertical Nystagmus
Thank you kindly I greatly appreciate your compassion and kind words. I would make this longer but it’s difficult for me to type nowadays. Thank...
I agree with you but you misread my post. I wasnt responding to the OP, I was responding to @Marshall. I sympathize with the OP since I’ve been...
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 I was taking the LDN for a good 1 1/2 months before I noticed a change. I’m hardly bothered by it at all and any spikes are minimal but I am in...
Wish this was the case for TBI. I’m suffering severe visual symptoms where my eyes never stop moving and I can’t focus on anything for more than a...
Ty @stepe1519 I appreciate that people have no idea the terror and torment we endure. Wish we could trade places with all the people putting us...
Thank u so much @LostinTX! I came across her a little while ago but am now connecting the dots on CCI. So helpful really appreciate the share!...
@LostinTX craniocervical instability. I’ve had upper cervical injuries for decades. I absolutely hate how these injuries are progressive and never...
@stepe1519 very good u win the prize:) Diagnosed CCI in Feb but I was so distraught with tinnitus at the time I didn’t connect the dots. My home...
Epiphany: This is all coming from CCI that caused a TBI. So furious these idiot docs have all wasted my precious time.
Thanks I think I may stop altogether had another epiphany last night
Did u have a bad experience?
Hi Matt, I’ve done TONS of physical therapy over the years. What I need is upper cervical PRP, which has been delayed another 2 months to my...
Hey @Uklawyer. So nice to hear from you. Unfortunately, no, I am severely struggling every second of the day and hoping something will bring me...
Thank u I appreciate that
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.
Thanks Deb yes been tested for Lyme and working with a functional Med doc who just did some saliva testing im poor in everything but of course...
Can’t think think of it being anything else I will be on it forever
Yes both have been gone for some time now but the Tinnitus remains a 1
Sorry to hear that there is no excuse for this crap
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
Thank u so much Deb it is back to quieter today
Not sure but it’s low today
Tinnitus is making a comeback, don’t think this and the visual nightmare are survivable.
Man I didn’t know how much worse everything was going to get smh. Microdosing has helped with anxiety though.
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
I am waiting to be scheduled for that thanks for reminding me of what I should ask for to be tested.
Thank you. Nope, no answers after almost 5 months of evolving torture. I am so tired of the I don’t knows, conventional medicine has failed me and...
Nope, I never knew what a panic attack or severe anxiety was. This has been a mind altering experience, no pun intended.
Instead of going away, it morphed into a neurological monster that is now destroying my vision in a slow torturous methodical way. I would take...
Honestly I don’t know but I’d take the severe tinnitus over this disabling horrific eye condition any day. I started Low Dose Naltrexone 2 months ago.
It helps greatly but my problem is physiological. My brain doesn’t know where my body is in space with this awful vision problem. I’m hoping MDing...
Hope so. It is killing me daily but if it’s truly TBI, it should heal with this protocol.
It reduced on its own or appeared to. I’ve been doing Low Dose Naltrexone for months. However I’d take it back in an instant to stop these visual...
You are too kind @Jerad, thank you! That helped a lot. My tinnitus is under control, but it’s still present at a “1” so in case it comes roaring...
Can someone catch me up on where we are with this? Has nothing been unblinded/reported? I am having serious visual issues so reading through this...
@LostinTX Wow that’s amazing now THAT is a good therapist! The ones that specialize seem to really care and be involved. I hope u get the LDN as...
Hi all, Back with more updates to document my case. I had a vestibular assessment with an expert in our area who specializes in vestibular...
This also explains why the prednisone was effective early on.
Thanks @Christiaan I understand this to be Menieres? I’m doubtful of this but definitely Vestibular hypofunction that’s for sure.
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.
