IntotheBlue03

The amount of docs telling me it's anxiety, imagining things, functional neurological disorder. Ears, eyes, lungs. They love gaslighting patients

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.

@Franci003 couldnt agree with u more just adding insult to injury when they pull those stunts. They’re such bastards.

Life is cruel I’m so sorry to hear that…

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 Neurofeedback clinicians to figure it out. I will swear by this science until the day I die. @Marshall @Rockman

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 to wait for that!

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 4.5mg over a week

Thank you. Did it cause any spiking initially? I'm so sorry you are having such visual issues :(

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.

Have you heard of Jennifer Brea? She had what ended up being this after searching for 7 years for answers. She has a Netflix documentary "Unrest" and here is her website. She is cured now! I hope this helps. https://jenbrea.medium.com/cci-tethered-cord-series-e1e098b5edf

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 but I was too late. Here’s to hoping Dr. Hauser in Fl can help.

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.

I'm sorry you are going through this. I hope to hear things improve for you. Stay strong.

Thank u I appreciate that

Did u have a bad experience?

When this happened...I switched vestibular therapist because I was seeing no results with the first. Second was a wealth of knowledge.

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

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.

consider CD57 - measures immune suppression

Think was the LDN

Can’t think think of it being anything else I will be on it forever

When you say it's a 1, can you hear only in silence then?

I’m sorry, they don’t know :(

I feel my therapist bailed on me too

Sorry to hear that there is no excuse for this crap

Thank u so much Deb it is back to quieter today

Did something new trigger the tinnitus? Sorry to see this

Not sure but it’s low today

I'm sorry girl! I hope you are doing better.

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.

How did you get tinnitus under control you still on prednisone that usually lowers it

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.

PS, talked to my family Dr and as expected would not do LDN for me. *shocking NOT* but my psychiatrist is open to it after talking to his colleagues he said, so may get me 12.5mg and I can cut down myself. Really hoping he comes through

@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.

Hello! I pick up my script LDN tonight. Dr gave me 50mg tabs and I plan to dilute it down. What dosage did you start with? I'm thinking 1mg to begin?

@Christiaan i got diagnosed with hydrops initially since I had a lot of dizziness on onset. Seems it was initial trauma that just mimicked hydrops for me. It’s good to rule it out for any though

@Wrfortiscue it's very hard to make accurate claims concerning hydrops, but I believe there's a recent development with MRI scans & AI that makes it easier to see what's going wrong in the inner ear/cochlea: https://www.tinnitustalk.com/threads/new-method-to-map-the-inner-ear-using-artifcial-intelligence-ai.45207/

@Christiaan thats awesome we are slowly getting there

Hi I did try this a long time ago but my theory is the adjustment won’t hold because I have too much upper cervical damage. I am hoping that once I have the PRP/Prolo treatments and stabilize that I’ll be able to hold an adjustment.

Hi @Guywithapug ! I would recommend you research Upper Cervical Chiros. NUCCA is very gentle, but it may take a long time to see results. My UCC uses a drop table and gently pushes the C1 into place, no cracking, no pain. Never tried Y-strap, that looks a bit scary to me!

Hi @IntotheBlue03 ! Let me know when you've started the prolotherapy. I'm going to call some places this week and look into it. It took a year of UCC adjustments to see results and then the second vax completely took me back to square one. I simply cannot wait another year to see results again. I hate living in pain, even more than t.