IntotheBlue03

IntotheBlue03

Member 39 From Philadelphia PA
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  • 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.
    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! :)
    View previous comments…
    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.
    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!
    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.
    IntotheBlue03
    Need everyone's thoughts and prayers at this point. The visual and cognitive symptoms are unbearable everyday.
    View previous comments…
    LilSass
    Stay strong! I understand the frustration you're going through. Sometimes it seems like it will never get better, but there is hope. It can be really difficult living just to get through the day, especially when you see other healthy people who are busy making plans. Saying prayers <3
    IntotheBlue03
    Thank u so much @FlatDarkEarth every second is a struggle and I'm sorry to hear about what ur enduring mentally. May we all have peace and recover as soon as possible.
    IntotheBlue03
    @LilSass thank u kindly u said it it's the worst when u see healthy people going about their day and every second of yours is despair. Really praying I can find the right help that I need. It's unacceptable that we fall into these black holes with no help. Neurological conditions are such a nightmare!
    Greg Sacramento
    @IntotheBlue03 No indications of Venous Sinus Stenosis/IIH is noted on your MRI report. From MRI notations that you posted; brain is fine. You have an alar and other neck injuries. Correct head posture, staying calm and my other mentions are needed.
    View previous comments…
    IntotheBlue03
    " The left transverse and sigmoid sinuses are dominant. The right transverse sinus is diminutive with focal narrowing in the transverse/sigmoid sinus junction. Possible mild narrowing at the left transverse/sigmoid sinus junction.
    Focal filling defect in the distal right transverse sinus, likely an arachnoid granulation." @Greg Sacramento
    IntotheBlue03
    I absolutely feel my upper cervical injuries led to IIH without a doubt. @Greg Sacramento
    Steph1710
    @IntotheBlue03 I have the same issues! Can't be bothered to write it all out. I'm waiting for a stent, but because of NHS, I will probably die of old age before it's done lol.
    IntotheBlue03
    Seems Tinnitus/Ear Fullness/Hearing Loss/Visual& Cog Fog Probs go together with Venous Sinus Stenosis/IIH! What a nightmare condition
    Hottopic29
    Hey if they can fix it it would solve alot of your issues... atleast you found a cause
    IntotheBlue03
    Back and struggling with Partially Empty Sella reported on Brain MRI. Anyone else/thoughts?
    View previous comments…
    Hottopic29
    @IntotheBlue03 i always read my own results and get worked up .. dont get to stressed there is lots of conditions and things that can be treated and resolve on their own .. i think prednisone did something to my brain im going to see doctor about it im sure it altered something
    IntotheBlue03
    I hope prednisone didn't harm u it's only helped me. Definitely recommend MDing. @Hottopic29
    Hottopic29
    @IntotheBlue03 i didn't taper wasn't given that option .. wish i did make sure you do and do it slow
    IntotheBlue03
    80mg of Prednisone reduced my visual symptoms 50%-75% yesterday and today I'm on to something! Brain MRI here I come!
    Hottopic29
    Doesn't Naltrexone work on inflamation maybe a higher dose
    IntotheBlue03
    You're absolutely right I didn't even consider that if I run out I probably should thank you.
    IntotheBlue03
    Began MDing today. Wish me luck, really hope I get some relief visually.
    View previous comments…
    IntotheBlue03
    Hey @LostinTX i did 50mg too the first day absolutely no side effects except I felt calmer which could be placebo I'll be doing 100mg tonight. Pretty confident I won't notice anything then either. Adding 1000mg lions mane+200mg Niacin on Paul protocol
    LostinTX
    I have tried Lion's Mane twice before and spiked me both times. Gave it to my husband to finish. I also read about the Paul Stamet's stack hoping it would help :/
    Hottopic29
    @LostinTX you feel anything on it i was thinking of trying.. what does your spikes sound like
    Hottopic29
    What time you trying the 100mg im curious to was about to order some online pill form they sell in canada the calm one has psilocybin Ashwagandha and Reishi in 100mg tablet .. kinda nervous about other ingredients..
    IntotheBlue03
    So because I'm in the USA where greed and profit keep anything naturally good for u illegal I've had to go the underground route. I think ur safe with CA sources since it's technically legal there. I couldn't order anything because of customs.
    DebInAustralia
    Hi Lovely, how do you manage to focus on reading and writing? Sounds awful. I presume your t is no longer an issue? are you still on the LDN?
    IntotheBlue03
    Hi Dear It's pretty terrible honestly I'm getting less resistant to it by the day. I'm constantly having to refocus every 5 seconds so u can imagine my life is in chaos again even without T. It is still constant but very low and I don't notice it as much with this new disaster I am dealing with. Still on LDN
    IntotheBlue03
    I also met with Dirk de Ridder, nice guy but we didn't address the T as I wanted his thoughts on what I'm currently dealing with.
    IntotheBlue03
    What kind of hell on earth is Saccadic Intrusions? You can't focus on anything in your vision. It's nightmarish. Calling the tinnitus back
    View previous comments…
    IntotheBlue03
    It's very low but I suspect it was caused by an underlying disease at this point like MS, etc. It was severe for 3 mo now the visual and mental symptoms I'm dealing with are severe.
    ZFire
    And the reactivity is gone?
    IntotheBlue03
    Hi @ZFire yes the reactivity is gone and has been replaced by nightmarish Visual symptoms that are constant unfortunately.
    IntotheBlue03
    Any1 else know vestibular conditions cause severe anxiety bc it's a physiological response of the brain not knowing where u r in space?
    View previous comments…
    LostinTX
    Good luck on stem cells! I may research if they can in Mexico too
    IntotheBlue03
    Oh goodness what is cerebral small vessel disease? Sounds terrible! Yes these chronic torturous diseases are all monsters I never knew existed. I will keep u posted and in my prayers as well!
    IntotheBlue03
    Yes this sensation of feeling like I can't really think or see is just unbearable I hope I don't have MS but need a diagnosis soon as far as what's causing this.
    IntotheBlue03
    Symptoms reduced 60% w/ Prism Glasses+Trial Lens Clip. No more feeling like I'm swimming under water completely. Thankful.
    IntotheBlue03
    Devastating Diagnosis but the right 1 finally. Vestibular Ocular Reflex Dysfunction. Another learn to live with it nightmare. I am crushed.
    View previous comments…
    IntotheBlue03
    @Damocles Yes agreed I had heard of the VSS link but not this nightmare disorder. I'm having a really hard time seeing a path forward with it.
    Exit
    IntotheBlue03
    Great news all, finally found a godsend of a FCOVD Optometrist. I now have prism glasses fitted with a trial lens clip that reduced my symptoms by 60%. I no longer feel like I'm swimming under water 24/7. I start vestibular and vision therapy next week. Thank fucking Science because I no longer believe in God.
    IntotheBlue03
    Had an FCOVD Exam, def Brain2Eye issue. Put on a prism that stopped all movement. Tears. Hope this nightmare is coming to a close.
    View previous comments…
    IntotheBlue03
    @DimLeb I'm hoping I can at least now avoid SSRIs and Benzos, rather do prism glasses and VRT (if needed) and NFB.
    D
    Glad to hear! Things are so much different when there are actually effective treatments, unlike the damned T...
    IntotheBlue03
    @DimLeb I hear u and I'm attending the March Stat with Susan Shore hoping to hear the latest on what's going on there. I will post everything I hear right here. I'm hoping I don't have anything more serious going on and that these treatments work, wish me luck! All of this neurological nightmare back to back has really shaken me up.
    IntotheBlue03
    Received a diagnosis of PPPD. Devastated. Treatment sounds difficult and long. :(
    D
    That sucks but at least there's treatment... I read that Vitamin D and calcium are good for that. The tinnitus is better now though? Could you share what tests led to the PPPD diagnosis? Been having some very minor balance myself.
    IntotheBlue03
    Hi @DimLeb honestly it seemed more like a process of elimination after I failed for epley and finally seeing my ENT after 3 other HCPs. I hope treatment works it seems like another vague condition that is difficult to treat.
    IntotheBlue03
    After 60 mg of Prednisone had visual stabilization 12 hours later. Tossed&turned in sleep & noticed Disorientation returning. Worse today.
    IntotheBlue03
    Still blown away that a qEEG can show the exact location of Tinnitus perception in your brain. Is this common knowledge on TT?
    blamingeverything
    No, I've never heard of this!
    DebInAustralia
    Where exactly is the t originating from?
    IntotheBlue03
    The center of my brain however now that it's quieter I hear it more towards the right rear side of my head and the qEEG captured that in red. I'll have to post it just to share.
    IntotheBlue03
    Neuro Oph says no nystagmus & nothing is wrong. Relieved but devastated at the same time. The world rocks like a boat as I move my head/eyes
    View previous comments…
    LostinTX
    PT for the vertigo. Although I think honestly it just went away with time. The nystagmus left also. It scared me with the dizziness sitting up closing my eyes. I was like wtf I was told this was only with movements.
    LostinTX
    But the therapist said no, you will have dizziness and balance issues just closing your eyes standing up etc. too.
    IntotheBlue03
    @LostinTX @GoatSheep Ty both it's really good to know it might take multiple visits and that it can go away in time this has scared me to death have my maneuver scheduled for tomorrow afternoon, wish me luck! T is bad enough all this comorbid crap has to go lol
    IntotheBlue03
    Anxiety still down and I'm in a hospital across town. I'm upset but no panic attacks. Hope NF is the answer to my panic & nystagmus.
    blamingeverything
    very hopeful for you and interested to hear how it goes!
    blamingeverything
    by the way, we got tinnitus around the same time. it sounds like your anxiety has been worse than mine, but I am happy to report my loudness has subsided from the 8/10 horror that was January to an electrical hiss. A tolerable one that I will continue to try to mitigate.
    IntotheBlue03
    I am so happy to hear that for u @blamingeverything! My anxiety is better but what's really bothering me now is the eye symptoms/brain fog. I'm not clear on if the SGB I had caused it or if it was there prior to a certain degree but the neuro oph had nothing to tell me. I guess no news is good news but I can't help but feel something very bad is happening. Really hope NF can address the nystagmus.
    IntotheBlue03
    Could Be Placebo effect but anxiety down 50% as I move through my day after 1st full session of Neurofeedback. Last 2 sessions were practice
    IntotheBlue03
    Absolutely in Tears as I type this. Highly recommend Neurofeedback. Their QEEG is very impressive.
    IntotheBlue03
    T still low but don't recommend the SGB. Brain Fog/Haze more severe now. Doc says it's a rare side effect. 2022 just keeps getting worse.
    IntotheBlue03
    I hope it's just from my ongoing anxiety but striking out a third time is crazy
    IntotheBlue03
    Tinnitus continues to be low/nonreactive 2 days off KPin. However, mental anxiety/brain fog is debilitating. SGB suppressing physical panic
    View previous comments…
    R
    Was your decrease in T sudden or gradual? so it went from loud to low. Do you think the cervical treatment helped?Hopefully it goes away.
    IntotheBlue03
    @Reed19 definitely gradual and I'm not sure it's permanent as I am now 3 days off Kpin with NAD+ Therapy. I'm also in a high anxiety state w/ eye issues so not sure if there's a compensatory factor there.
    IntotheBlue03
    @Reed19 Will keep u posted I actually had an SGB instead of an upper cervical Rx to suppress fight or flight response so I'm not sure about it's effect on T but I def do not recommend the procedure. I also should mention I've been on LDN for 2 mo and that doesn't seem to show any effect for users until 2 mo in so that could also be a factor.
    IntotheBlue03
    Brain Fog still lingering. Is this Derealization compounded over the past few months & not from the SGB I just had?
    Damocles
    I have no experience with SGB, but I think it is perfectly possible your weeks long adrenaline rush may have contributed to this.

    To put it bluntly: your brain's been through a lot.
    IntotheBlue03
    @Damocles Totally agree and while the SGB is addressing some of the physical panic symptoms I'm once again going through severe anxiety. Wish I knew wtf was wrong. This only got better where I had 2 good days last week when I took a very slow 0.5mg dose of Clonazepam and both times the following days I felt fairly normal before it ramped up again.
    IntotheBlue03
    Whether this is withdrawal or not I really want to find some supplements to take instead or in conjunction to a horrible taper if I have to have one. To be fair I did have the brain fog before the SGB and the pinpointed pupils. However from what I understand benzo withdrawal should not cause pinpointed pupils where severe anxiety can? This has really snowballed into a bigger nightmare than I could have ever imagined!
    IntotheBlue03
    So I bit the bullet today and had a Stellate Ganglion Block at the urging of my Prolo guy. A little brain fog but no panic at all.
    IntotheBlue03
    80% calm today after stopping Grandaxin & only had .5mg Clonazepam last nite. My symptoms matched Akathisia. Another layer of hell anyone?
    View previous comments…
    Bambam0
    Yea purchased :) thought they were unavailable in US.
    IntotheBlue03
    Ur correct I purchased through cosmic nootropic. I'm hoping it was just a side effect as opposed to withdrawal I took it for 3 weeks irregularly & I did have the same panic symptoms before starting just not as severe.
    IntotheBlue03
    It was only halfway effective for my panic so it's possible my panic was just continuing to increase while using it. It's also somewhat of a stimulant & differs structurally from other benzos.
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