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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.

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 Autoimmune disease I have I will continue to take it as long as I can get it prescribed. It’s worked wonders for chronic pain too.

Seen neurologists, neuro ophs, vestibular and vision therapists, neuro optometrists, functional neurologists, ENTs, and at the end of that long list were 2 little NFB docs who know how to administer and read qEEGs. Funny that. My neurologist says qEEGs will be taken seriously in 10 yrs. Too 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 any of my eye exams or with the 20 eye docs I’ve seen. Hoping I can now focus on the right vision and Vestibular therapies to treat this. Just took 2...

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 severe distress with my visual symptoms so I wonder if that distraction has also impacted how much I notice it. I started at 3mg and increased to...

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 down for 24 hours. They would eat their words.

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! I’ve had POTS, MCAS, IBS and hypertension for years before this and felt something bad was coming so I was looking to treat my upper cervical this year...

@LostinTX craniocervical instability. I’ve had upper cervical injuries for decades. I absolutely hate how these injuries are progressive and never stop destroying your life. I treated every other part of my spine but this with Prolo. The day I got my X-ray to start upper cervical treatment is...

@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 is on the FB CCI page now where it turns out my symptoms are all too common and deadly.

Thanks I think I may stop altogether had another epiphany last night

Did u have a bad experience?

Thank u I appreciate that

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 another “I don’t know” on the visual symptoms. Very tired and feel like everyone is just taking advantage of me for a buck in the United Slaves of America.

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

Thank u so much Deb it is back to quieter today

Not sure but it’s low today

I am waiting to be scheduled for that thanks for reminding me of what I should ask for to be tested.

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 can help with the development of new neural pathways for my vision.

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 symptoms I am struggling with every single second.

@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 well I will never go off of it at this point with whatever the hell is wrong with me.

Thanks @Christiaan I understand this to be Menieres? I’m doubtful of this but definitely Vestibular hypofunction that’s for sure.