IntotheBlue03

You don't sound like a basket case; I am convinced that if bad enough T will bring any human on this planet to their knees. Your posts show me you're one tough person to be able to stick through all this. I am glad you are still exploring different treatment options and getting at least minor relief in some areas. I really feel there is hope and even if it's not 'good' you will feel less awful as this year goes on

Thank u @FlatDarkEarth u r very kind and I appreciate the support from compassionate folks like u on here. The T has been low but the anxiety is out of control. I am starting NAD+IV next week and Neurofeedback w/ Dr. Starr and hope I can get some relief there. I never thought the anxiety would surpass the T. My doc believes I am now in The middle of PTSD tho from it.

Hey! "The T is low".... You should read that to yourself because that is an amazing thing to hear! T lessening is always an amazing thing. I can understand the anxiety surpassing it being frustrating. I think I'd try to take solace in the fact that T is still not understood well, but anxiety is much more understood - I know it's hell but you will get help with it.

@IntotheBlue03 as I read your last post about reverting back to a toddler I couldn’t help but think about how fragile life is…My first 6 months of T felt that overwhelming to me…both times! In fact I’m still struggling but, dealing with it progressively better as time goes by.

How strange though that a sound could have such a powerful effect on our psyches? Hang in there…I’m glad you have your Mom to give you a real hug. I’m sending you a virtual hug right now!

U can say that again @Barry098 even before the benzo use I was having tremors and full body collapses from this demon noise. Just never knew anything like it existed. Tinnitus that zaps ur brain that u can physically feel? Never knew

Hey Dear u r always a wealth of knowledge. Prior to my T onset (and still now) I have had a HUGE undiagnosed histamine problem. An ND diagnosed me with MCAS & I was on a daily regimen just to deal w/ histamine related issues (hives, etc). I’ve always wondered if my T could also be related to Histamine. I took 1/16th of it last night and have been calm most of today so we will see. LDN still going strong :)

The hydroxyzine did help mentally but my body continued to respond to my ongoing panic physically. Took some more following that but the body panic is still there. Please pray for me.

Gonna try 5mg tonight I’ll let u know how it goes.

Melotonin kicks in fast for me. About 15 mins before bed and I'm out

Use to be the case for me but the panic attacks and severe anxiety etc have taken their toll.

Maybe even sooner at about 3 months felt better

Thank u hope so having a rough night. Did u ever need anti anxiety meds? @Rockman

@Steph1710 can I just say u r beautiful and hysterical? :) Was destressing and entertaining myself by going through the photos thread and it’s nice to put faces to names.

I’ve had a million floaters in my vision since I was a kid…it has never bothered me though. I’ve tried to relate my T to the floaters in order to learn to think of it more positively but try as I might it just isn’t the same thing. Floaters are a non issue for me and T is a problem…

@Barry098 Exactly it’s definitely not the same I’ve had floaters since then as well and they never destroyed every aspect of my life like this monster has that’s for sure.

For me, visual snow is like tiny tiny almost invisible dots moving around darker surfaces. It's mild though and I don't notice most time.
Well, at least there are options to fix eye stuff, compared to what we got for inner ear.

So far so good I still have some anxiety issues but it’s the best option I have found. It lowers my T somewhat and doesn’t intoxicate or sedate and is fast acting when it comes to panic/anxiety. I plan on continuing to take it for 3 months. I was in fight or flight for 6 weeks straight.

It honestly would probably work way better if I took it as I should. I take it in quarters throughout the day as opposed to the whole pill. Generally I believe it’s prescribed as 3x50 mg pills a day. I’m just a psycho who has issues with medication lol.

Thanks UK I do but not as much as I should still working up to that with the grandaxin. Hoping I can break some of this myself as well. Hate not being able to leave the house normally.

Just have to be a bit patient. It will come. And don't try to be too brave.

Thanks @Uklawyer ur right it’s just screwing up the Drs Appts I have left to take care of. Everything else I could put off but really need to muscle through those if I can. I’m doing the mindfulness now and trying to talk to myself throughout the day and watch the language that I use. That helps here and there

Zithromycin gave me tinnitus the first time i stay away from anything Mycin if its working for you great.. apparently i was on a medicine at the time that increased its side effects 10 fold the pharmacist caught the mistake to late

That’s awesome hope that protocol keeps working for u maybe it will resolve? What a nightmare regarding ur antibiotic. So far my ears are doing good hearing wise and I am clearing up. I’m lucky as far as meds go they never seem to affect my T just sound reactivity does.

@IntotheBlue03 since you suspect your tinnitus is cervical I don't think antibiotics will be too much of a worry for you.

Blocked Eustachain tubes/middle ear fluid most likely. Will probably resolve after the cold. Seeing an ENT is a good idea, they understands things like this.

Thanks @HeavyMantra I noticed it happened and reoccurs when I blow my nose so scared it was a hearing loss event. Seems it clears to some degree after a few hours of not doing that.

Every time I have a cold or other illness, I've learned not to worry about a spike until well after the illness has cleared up.

You did everything right.

Not tooting my own horn cuz this role has always stressed me out but I’ve always been the go-to person in my family and circle of friends. Me not being available sure has been a rude awakening for them.

I remember thinking “she needs this more than I do”. Low and behold I’m $10k in the hole just from medical bills with my high deductible trash insurance. Not that $1k matters now.

That’s awesome I’m glad it’s less and less not to sound like a stalker but came across one of ur posts where it was really bothersome last Oct? Glad not so much anymore

I actually feel almost like my whole body is vibrating most of the time along with my T. It is very tiring. Every once in awhile I feel things relax and that is a nice feeling.

Sounds exhausting from here @Barry098 hope ur getting some relief tonight

My go to.. https://youtu.be/5-UWXylsgag
I also enjoy some lofi hiphop.

Thank u for sharing that I too absolutely love lofi hiphop and chill hop thanks to my reactive tinnitus music and movies are a thing of the past right now and have been for almost 2 months. Working on watching things occasionally on very low but other than that it’s mostly silence and being forced to listen to the T for me :( Hope it helps towards habituation @BrOKeN_1

So I recommend an upright Cervical MRI and a digitial motion Cervical X-ray. They’re much more helpful in pinpointing your damage. I have forward head posture and have lost my cervical curve. Probably our entire generation and down the line have forward head posture at this point. No jaw issues I can pinpoint.

What can they do for forward head posture besides PT? My forward head is from a reverse curve in my neck although it is only a grade 2 on the scale out of I think 4 or 5??

Wow U have a reverse curve? Well the theory is u lose lordosis because of cervical instability due to muscle spasm etc. PRP corrects this instability so it should restore ur curve to some degree (FHP is still a threat obviously with our lifestyles) @Mathew Gould

Ur right it’s that constant state of high distress and watching my life fall apart that has me up. Thought I might be having a heart attack earlier bc of chest pains as I was trying to work. Can’t go out on disability for my job even though I’m in the middle of a nervous breakdown w/ severe T. That euthanasia video I was surprised with REALLY didn’t help. They weren’t kidding about the state I’m in @ajc

Out of morbid curiosity, I also watched the video. Even though my anxiety has improved greatly, I still found myself creeping back into nervous break down territory. I really feel for you @IntotheBlue03 !

Obviously, its good to get information out there, but its a terrible thing to watch at 2 months in.

Its still very early days for you! I had no improvement until 5months. Hope the ENT goes well today.

Certainly don't care about silence but I do miss not having a horrible high pitched screech in my head.

@IntotheBlue03 yes mam I sure do

Im going down another rabbit hole but have u heard anything regarding the effectiveness of keppra for reactive T? (Not T volume, just reactivity exclusively) Considering it @Wrfortiscue

I have not tbh. Only thing I’ve seen is some folks recover from reactivity when hyperacusis goes down, others haven’t…

Hey @Uklawyer absolutely not, I’m definitely not in any shape to be doing any of the things I am but in this country no one cares :( I’m sure this has greatly fed into the panic cycle im trying to break.

@IntotheBlue03 I'm sorry to hear that. I understand your concerns about the future. And we do have to fight for ourselves. But people do care, even if a bureaucracy does not. It does sound (naturally) that the anxiety is playing a major part in your pathology at the moment. I do believe that if you can keep working on calming your system and letting go of some of your fears, that you can make a lot of progress.

Agreed @Uklawyer a lot is being fed by having so many doctors appts and being outside for an extended period of time so I’m having setbacks in regard to panic. Hopefully this will settle in time.

Sorry that maybe got a bit dark. I’ve had a few bad days in a row but I’m sure there are better ones ahead.

I am so happy to hear it’s a covered available treatment in the UK. I am sure you will get some relief so better days will definitely be ahead on the chronic pain front. I literally did everything u could imagine for my spinal injuries and nothing worked until PRP/Prolotherapy. I keep telling myself I can get use to the T but every second is a struggle. @makeyourownluck

Here’s to better days for both of us and hoping that a viable treatment like Susan Shores is out by the end of the year. My fragile mind state unfortunately depends on it if this reactivity doesnot let up. I pray for the day I will be able to mask. As that would be lifechanging. @makeyourownluck

Thanks been on it a week hoping to see some more results in the coming weeks. It’s definitely already helped with arthritis/stiffness as I’m much less sore in the morning. @kingsfan

@IntotheBlue03 I see you too struggle with that instant reactive tinnitus...
Can’t imagine anything more annoying., protect is my advice as you know.
Does it react to everything?

Hey @Exit yes competes with absolutely everything including my own voice. It is definitely the most tormenting factor and the one thing I wish I could change. To be able to mask for some temp relief would be amazing. How do u deal and has yours improved at all?

Hey @Freerunner I neglected to ask what was your dosage daily? Was it 50mg 3x daily or more for Grandaxin?

@IntotheBlue03 , it was 50 mg 2 times a day.

Thanks @Freerunner i hope you get relief soon I appreciate the info and feel for u from ur posts.

Excellent thank u! @Exit

However I did not have tinnitus back then, so no clue if it can effect tinnitus badly.
But then again what do not..

@Exit That’s ok thanks less worried about it affecting T and more concerned about it hopefully helping with larger autoimmune issues that I’m worried about. I feel like my T is just a symptom of a larger disease.

Sorry to hear that @Uklawyer I know they get frustrated dealing with us as I have lost people before when I was in chronic pain so I knew it was coming, just devastating a 2nd time around

Hey @Mathew Gould have u tried any somatic dry needling? While I’m not having any results it’s something to try, I found a guy in my area trained in this. Ur in my area correct?

I am going to a pain clinic in 2 weeks and I'm gonna try stuff like dry needling, acupuncture, etc or whatever they say. I"m in Rochester NY.

Hi I’m hanging in there but honestly not doing too well today. Yes please post more in the thread about those supplements. I was already considering going the TNF-a inhibition route when I stumbled upon ur post :)

Thanks much @Stacken77 i too am suffering from recent onset of reactive tinnitus and what seems like hyperacusis. Just curious how you have been doing with yours?

Thanks for asking @IntotheBlue03. I have a very severe form of reactive tinnitus with spiking to low level sound. Sometimes, too many spikes in too short of a time can cause a multi-day long spike, or raise the baseline. I believe I initially induced all this through over-protection (sound deprivation really), so I'm trying to revert it by reintroducing sound, but it's a Catch 22 since the tinnitus spikes.

@IntotheBlue03 I think we can get better. There are testimonies of reactive tinnitus improving. Even more of hyperacusis improving, so I think the odds are on our side. Just be very careful. Reintroduction of sound may not be the solution for you, we're all different. Take it easy and try to figure things out. Hugs.

@IntotheBlue03 I spike to like my 10 dB room ambience, so I'm in hearing protection literally 24/7. No masking for me lol. ;)

Unfortunately that’s where I feel I am headed. Masking hasnot worked with the exception of a couple YT tracks that caused some spikes for me as of yesterday. Forgive me if I missed this but are you High Frequency as well? I’m in the 15khz range.

@IntotheBlue03 I guess most my tones are in the high frequency spectrum, yeah. I haven't tried to put a specific frequency on them though.