IntotheBlue03
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Jun 19, 2022 at 9:53 AM
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Gender:
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Birthday:
Sep 23, 1985 (Age: 36)
Location:
Philadelphia PA
Occupation:
Pharma

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IntotheBlue03

Member, Female, 36, from Philadelphia PA

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. May 18, 2022

IntotheBlue03 was last seen:
Jun 19, 2022 at 9:53 AM
    1. DebInAustralia
      DebInAustralia
      Any improvements?
      1. NYCGuy and Wrfortiscue like this.
    2. LostinTX
      LostinTX
      How are you doing now?
      1. ThomasF, NYCGuy and Wrfortiscue like this.
    3. Hottopic29
      Hottopic29
      How have you been was thinking about you today
      1. ZFire likes this.
    4. IntotheBlue03
      IntotheBlue03
      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.
      1. View previous comments...
      2. Franci003
        Franci003
        The amount of docs telling me it's anxiety, imagining things, functional neurological disorder. Ears, eyes, lungs. They love gaslighting patients
        May 18, 2022
      3. IntotheBlue03
        IntotheBlue03
        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.
        May 26, 2022
        LostinTX likes this.
      4. IntotheBlue03
        IntotheBlue03
        @Franci003 couldnt agree with u more just adding insult to injury when they pull those stunts. They’re such bastards.
        May 26, 2022
        LostinTX and Franci003 like this.
    5. IntotheBlue03
      IntotheBlue03
      Recommend a qEEG for any1 suffering TBI Visual/auditory disturbances.Will tell u more than 100 doctors ever could. I have vertical Nystagmus
      1. LostinTX and Marshall like this.
    6. IntotheBlue03
      IntotheBlue03
      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
      1. Marshall likes this.
      2. View previous comments...
      3. Marshall
        Marshall
        Life is cruel I’m so sorry to hear that…
        May 4, 2022
        IntotheBlue03 likes this.
      4. IntotheBlue03
        IntotheBlue03
        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
        May 7, 2022
        LostinTX, Marshall and Rockman like this.
      5. IntotheBlue03
        IntotheBlue03
        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!
        May 7, 2022
        LilSass and Rockman like this.
    7. LostinTX
      LostinTX
      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?
      1. NYCGuy likes this.
      2. View previous comments...
      3. IntotheBlue03
        IntotheBlue03
        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
        May 2, 2022
      4. LostinTX
        LostinTX
        Thank you. Did it cause any spiking initially? I'm so sorry you are having such visual issues :(
        May 4, 2022
      5. IntotheBlue03
        IntotheBlue03
        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.
        May 7, 2022
    8. IntotheBlue03
      IntotheBlue03
      Epiphany: This is all coming from CCI that caused a TBI. So furious these idiot docs have all wasted my precious time.
      1. Wrfortiscue, Jerad and JPGL like this.
      2. View previous comments...
      3. LostinTX
        LostinTX
        Apr 26, 2022
        Hottopic29 and stepe1519 like this.
      4. IntotheBlue03
        IntotheBlue03
        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.
        Apr 27, 2022
        LostinTX and LilSass like this.
      5. IntotheBlue03
        IntotheBlue03
        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.
        Apr 27, 2022
        LostinTX and LilSass like this.
    9. IntotheBlue03
      IntotheBlue03
      Running out of options, hope you all are well. Do not know how to live like this. 24 hours of torture and disorientation.
      1. ThomasF
        ThomasF
        I'm sorry you are going through this. I hope to hear things improve for you. Stay strong.
        Apr 22, 2022
        IntotheBlue03 likes this.
      2. IntotheBlue03
        IntotheBlue03
        Thank u I appreciate that
        Apr 22, 2022
    10. IntotheBlue03
      IntotheBlue03
      Vestibular therapy went terrible. Don’t think visual is connected to Vestibular. Lady was unbelievably cold. These people are horrific.
      1. LostinTX and LilSass like this.
      2. View previous comments...
      3. IntotheBlue03
        IntotheBlue03
        Did u have a bad experience?
        Apr 23, 2022
      4. LostinTX
        LostinTX
        When this happened...I switched vestibular therapist because I was seeing no results with the first. Second was a wealth of knowledge.
        Apr 24, 2022
        IntotheBlue03 likes this.
      5. IntotheBlue03
        IntotheBlue03
        Thanks I think I may stop altogether had another epiphany last night
        Apr 24, 2022
        LostinTX likes this.
    11. DebInAustralia
      DebInAustralia
      im sorry to hear that.

      Some suggestions: salivary hormonal and lyme testing?
      1. IntotheBlue03
        IntotheBlue03
        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.
        Apr 21, 2022
        LilSass likes this.
      2. DebInAustralia
        DebInAustralia
        consider CD57 - measures immune suppression
        Apr 23, 2022
    12. Hottopic29
      Hottopic29
      Did you oscillating and wine glass zing go away
      1. View previous comments...
      2. Hottopic29
        Hottopic29
        Think was the LDN
        Apr 21, 2022
      3. IntotheBlue03
        IntotheBlue03
        Can’t think think of it being anything else I will be on it forever
        Apr 21, 2022
      4. LostinTX
        LostinTX
        When you say it's a 1, can you hear only in silence then?
        Apr 23, 2022
    13. IntotheBlue03
      IntotheBlue03
      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
      1. LilSass and Wrfortiscue like this.
      2. Wrfortiscue
        Wrfortiscue
        I’m sorry, they don’t know :(

        I feel my therapist bailed on me too
        Apr 21, 2022
        IntotheBlue03 likes this.
      3. IntotheBlue03
        IntotheBlue03
        Sorry to hear that there is no excuse for this crap
        Apr 21, 2022
    14. DebInAustralia
      DebInAustralia
      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
      1. Wrfortiscue and IntotheBlue03 like this.
      2. IntotheBlue03
        IntotheBlue03
        Thank u so much Deb it is back to quieter today
        Apr 19, 2022
        Wrfortiscue likes this.
    15. IntotheBlue03
      IntotheBlue03
      Tinnitus is making a comeback, don’t think this and the visual nightmare are survivable.
      1. Wrfortiscue likes this.
      2. Jerad
        Jerad
        Did something new trigger the tinnitus? Sorry to see this
        Apr 19, 2022
        IntotheBlue03 and Wrfortiscue like this.
      3. IntotheBlue03
        IntotheBlue03
        Not sure but it’s low today
        Apr 19, 2022
        Wrfortiscue and Jerad like this.
      4. LostinTX
        LostinTX
        I'm sorry girl! I hope you are doing better.
        Apr 20, 2022
        Wrfortiscue likes this.
    16. IntotheBlue03
      IntotheBlue03
      Got desperate & went to Wills Eye to req dilating drops. Slowed spinning significantly. Hope OT is onto something with this acc. spasm
      1. LostinTX and Jerad like this.
    17. IntotheBlue03
      IntotheBlue03
      OT from Neuro Visual in NYC also identified severe Accommodative Spasm yesterday. Hoping new prism/progressive glasses+therapies will help
    18. IntotheBlue03
      IntotheBlue03
      Vestibular Eval found positional vertigo in weird unusual canals. Accommodative spasm visible. Hope this helps
    19. Oceanick
      Oceanick
      Hey have you had a lumbar puncture to test for many neurological degenerative conditions like neuromyelitis optica and MS?
      1. Wrfortiscue likes this.
      2. IntotheBlue03
        IntotheBlue03
        I am waiting to be scheduled for that thanks for reminding me of what I should ask for to be tested.
        Apr 16, 2022
        Wrfortiscue likes this.
    20. Hottopic29
      Hottopic29
      Microdose keep you calm?
      1. Wrfortiscue likes this.
      2. IntotheBlue03
        IntotheBlue03
        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.
        Apr 13, 2022
    21. IntotheBlue03
      IntotheBlue03
      This also explains why the prednisone was effective early on.
      1. Hottopic29
        Hottopic29
        How did you get tinnitus under control you still on prednisone that usually lowers it
        Apr 12, 2022
      2. IntotheBlue03
        IntotheBlue03
        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.
        Apr 12, 2022
    22. IntotheBlue03
      IntotheBlue03
      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.
      1. Hottopic29 and Wrfortiscue like this.
      2. View previous comments...
      3. LostinTX
        LostinTX
        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
        Apr 10, 2022
        IntotheBlue03 likes this.
      4. IntotheBlue03
        IntotheBlue03
        @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.
        Apr 11, 2022
        LostinTX likes this.
      5. LostinTX
        LostinTX
        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?
        Apr 13, 2022
    23. IntotheBlue03
      IntotheBlue03
      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!
    24. IntotheBlue03
      IntotheBlue03
      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.
    25. IntotheBlue03
      IntotheBlue03
      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
    26. IntotheBlue03
      IntotheBlue03
      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.
      1. LostinTX likes this.
    27. IntotheBlue03
      IntotheBlue03
      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.
      1. LostinTX likes this.
    28. IntotheBlue03
      IntotheBlue03
      So just had a VT assessment w/ the best in my Area. Fell right over w/ certain Tests. Vestibular Hypofunction w/ Visual Compensation.
    29. IntotheBlue03
      IntotheBlue03
      I can’t tell u all after suffering severe Tinnitus how I would go back to it in a minute to escape this visual/cognitive hell.
      1. Wrfortiscue and Daniel Lion like this.
      2. View previous comments...
      3. Wrfortiscue
        Wrfortiscue
        @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
        Apr 11, 2022
        Christiaan likes this.
      4. Christiaan
        Christiaan
        Apr 11, 2022
        Wrfortiscue likes this.
      5. Wrfortiscue
        Wrfortiscue
        Apr 11, 2022
        Christiaan likes this.
    30. LilSass
      LilSass
      Hi @IntotheBlue03 ! Have you tried an upper cervical chiro? It can be a slow process, but I found great success with my chronic neck pain/migraines. Until I had the second vax that is. There are a few options to have your C1 corrected, including NUCCA, Atlasprofilax, etc. Please let me know how prolotherapy goes for you as I am looking into trying that as well. Hope things get better soon! :)
      1. Guywithapug, Wrfortiscue and Damocles like this.
      2. View previous comments...
      3. IntotheBlue03
        IntotheBlue03
        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.
        Apr 9, 2022
      4. LilSass
        LilSass
        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!
        Apr 21, 2022
        Guywithapug likes this.
      5. LilSass
        LilSass
        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.
        Apr 21, 2022
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  • About

    Gender:
    Female
    Birthday:
    Sep 23, 1985 (Age: 36)
    Location:
    Philadelphia PA
    Occupation:
    Pharma
    Tinnitus Since:
    12/2021
    Cause of Tinnitus:
    Cervical/TBD
    Trying to stay alive. That’s it.