IntotheBlue03

@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.

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

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.

@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!

“ 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

I absolutely feel my upper cervical injuries led to IIH without a doubt. @Greg Sacramento

@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.

Hey if they can fix it it would solve alot of your issues... atleast you found a cause

@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

I hope prednisone didn’t harm u it’s only helped me. Definitely recommend MDing. @Hottopic29

@IntotheBlue03 i didn't taper wasn't given that option .. wish i did make sure you do and do it slow

Doesn't Naltrexone work on inflamation maybe a higher dose

You’re absolutely right I didn’t even consider that if I run out I probably should thank you.

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

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 :/

@LostinTX you feel anything on it i was thinking of trying.. what does your spikes sound like

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.

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

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.

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.

And the reactivity is gone?

Hi @ZFire yes the reactivity is gone and has been replaced by nightmarish Visual symptoms that are constant unfortunately.

Good luck on stem cells! I may research if they can in Mexico too

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!

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.

@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.

Sending hugs @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.

@DimLeb I’m hoping I can at least now avoid SSRIs and Benzos, rather do prism glasses and VRT (if needed) and NFB.

Glad to hear! Things are so much different when there are actually effective treatments, unlike the damned T...

@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.

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.

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.

No, I've never heard of this!

Where exactly is the t originating from?

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.

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.

But the therapist said no, you will have dizziness and balance issues just closing your eyes standing up etc. too.

@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

very hopeful for you and interested to hear how it goes!

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.

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.

Hey @DebInAustralia yes I think it has I believe you asked for the research regarding this here is what I had come across regarding the timeline for LDN to be effective:
https://ldnresearchtrust.org/content/low-dose-naltrexone-and-chronic-pain-pradeep-chopra-md

Can you elaborate on the location of your t? That sounds helpful

@DebInAustralia just wanted to add that I know there’s been LDN Tinnitus studies where participants responded sooner but I’m basing my assumption off the response time for LDN to start having effects on autoimmune conditions. I’ve read this is anywhere between 2-9 months.

I hope it’s just from my ongoing anxiety but striking out a third time is crazy

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.

@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.

@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.

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.

@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.

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!

Yea purchased :) thought they were unavailable in US.

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.

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.