DeanD

@ErikaS - thanks for the reply. I think possibly vagus but the ENT and Neurologist I have spoken to are clueless on the subject and they're not pursuing it. I have tried 3 neurologists and 3 ENTs. In the US I just went to Urgent Care, not a specialised consultant.
I've spent close to $4000 in the past month alone on consultants and test, and just getting lost.

@ErikaS - I went for an allergy test and it came back with lots of things, I'm ruling them out, it's making some difference but depends what it does over time. At the moment its as much as the tightness in throat and breathing issues after swallowing as much as the swallowing - particularly the tongue.
Ruling out iron, B12 and mast cell tomorrow.
Had MRI recently, came back clear.

@ErikaS - it's great you don't need to come on here much anymore and getting on with your life :)

@Kiyomi - thanks, Ive been fighting this dysphagia for a year now. Seen 20 consultants, every test, nothing shown so they won't offer treatment. Zero compassion. Lost 50kg.Liquid food only at best. It's a nightmare.

Really sorry @DeanD you’re one of the posters I think of regularly as you’re going through the hell that is reactive tinnitus and all your other stuff. I’m in a bad place with my reactive tinnitus and dysacusis, now 9 months later and expected some improvements but if anything it’s worse and the mental toll it’s starting to take is not good.

Thinking of you mate. I’m hoping the shore device works for reactive t, if I’m as bad in another 12 months and it’s out, I’m considering flying to America im that desperate.

@HopeForAll96 - not great unfortunately. No mine never really did go down to be honest. People certainly get more used to it after a period of time, and some it does reduce, it just hasn't as of yet for me.

@Jammer - my hospital will only do a closed MRI, but this is due to budget constraints. My other option is to pay privately for an open MRI and have the hospital review the results. I assumed it would provide the same resolution but perhaps not based on your answer.

@Jammer - I have no GP, and no doctor to speak to. I either go along with the NHS standard MRI scan - or pay privately to speak to a consultant and carry out a private open MRI (cost about £1000 or $1200)

I had an MRI in December to see if I had a stroke due to a hypertensive emergency. It was loud and it spiked my T, but I have since recovered to approximately baseline level. No stroke was found. This is n=1 advice.

@Heal82 - what noise do you have? I have a cracking (like whip crack) every time I swallow, and has been this way for over a year now. An ENT said it happens as the soft palette lifts when I swallow - but why the noise happens he had no clue (and considered one of the best ear ENT surgeons in the world).

It sounds like someone's banging on my ear drums directly

@Heal82 - sounds like a possible tempor tympani muscle contracting, or myoclonus, this sounds like a fluttering or maybe a banging on the ear. Mine is more a crackle, like rice krispies crackling in the ear every time I swallow or voluntarily lift my soft palette, or tense the eustachian tubes

@Cmspgran - its slowly getting better thanks. My main issue is my throat getting worse.
Yeah I know a lot of people who have had it. Could have caught anywhere really.
I did, I am glad I went. Only 3 days solo trip but it was enough to know I can fly, and I would do it again.
Db on plane no greater really than in a car.
My throat problem the biggest hindrence.

That’s really great to hear, is your reactive T improving? I’m in a right muddle, moved onto carbamazepine and it definitely helped lessen the reactive Morse tones but then created an additional electrical zap which was probably more annoying. Stuck now to know what to do best!

@Cmspgran - unfortunately no, the reactiveness isnt showing any sign of improving. I haven't taken any medication since January, so I can't blame that any more unfortunately.

Take it easy, enjoy!

Keep on keeping at what you love!

Great to hear @DeanD was wondering how you’ve been getting on, struggling at the minute be good to catch up and hear all about your trip when you return.

Not cool. This is torture.

Hey @hopefuldede - thanks for sharing this, really thoughtful of you :) - I've wondered about long Covid but tbh I had Covid in Feb 22 and didn't really get rough, and when it went I had no issues whatsoever until the Microsuction in Oct 22 and then the throat issues Feb 23.
I think as I never got long Covid symptoms, I'm not sure I have this, plus I am sure they have tested for MAST in one of my 87 blood tests! lol

@hopefuldede - How are you doing?

Hi @ErikaS - thanks for checking in :) - I've been staying away for a bit, and only back doing some flying research. I went away for a few days in a cottage - 8 hours driving - and whilst there I had two really good days. T turned to hissing for the majority. Now I'm back and it's back to being really bad. T tone is harsher and louder I think.

@ErikaS - I have booked three flights for the next four months - and spontaneously considering a 4 hour flight this weekend - crazy I know! I am not enjoying things at the minute, and became very down again. I'm not enjoying life rn but it's bringing me down being restricted.
No decision on meds, have decided not to take any for the moment.
How are you doing?

@gameover - that's really awful, and ANOTHER real case study as to why Michael Leigh should not run his mouth off promoting everyone do this as a type of 'treatment' when he doesn't have a clue what he is talking about. It can help some people but it is no treatment. I hope no one else is damaged by his stupidity.
My new tone or change in tone never did settle down after the rain, it's been seven weeks now.

@gameover - I don't actually think it's the ears that are damaged, and why ENTs and audiologists don't understand.
T is in the brain, but it's the changes to the firing rates of neurons, which are much further up stream than the physical.
I don't think noise is damaging our ears, but it is deteriorating protective mechanisms we have to dampen tinnitus or increasing the neurons responsible for the sound.

Yeah, it would be strange if that damaged the ears. OTOH, that incident resulted in changed T that really felt like coming from the ears, rather than inside the head, so I am not sure. I improved further from that spike, though my situation varies wildly. Some days are pretty good, some are horrid.

@cjbhab - yes, and maskers have given many people their life back. Totally get it, and totally worth a couple of thousand or more - maskers are great for the very reasons you mention, but that isn't TRT.

@cjbhab Your feedback on the maskers is the most positive I've seen. If I had acted sooner, I could have gotten some that were about 1/2 covered by the insurance before I lost it.

@cjbhab - would you consider your tinnitus to be variable and ever changing, or generally quite static and at the same volume and pitch?
I read today that variable tinnitus usually has better success rates using sound therapy for suppression than fixed tinnitus - but wondered what yours was?

Omg I commend you for even leaving the house let alone going to a bar with your worsening! I hope you are able to enjoy and not get exponentially worse.

@ErikaS - I'd been staying homebound recently and just noticed things getting worse. T was a 20 out of 10 when I got back. Sleep has returned it to its 'usual' 9 out of 10 in loudness.
With this and the FND I'd been close to the edge as of late, sometimes just need to be normal - just for a little while - to feel alive

Quiet to heal or noise to desensitise. Wish there were some guidance on the best approach to follow for reactivity that isn't stupid TRT.
(I am against it purely due to ridiculous cult like pushers who claim it doesn't work without the counselling aspect - and if that's a requirement then it simply doesn't work).

@DeanD I am so sorry to hear this. I think you would be safe trying Gabapentin. I understand your hesitation with the other drug due to it being an antidepressant, so if I were you I would ask for a trial of Gabapentin, starting low and increasing.

@ErikaS - thank you, I am considering gabapentin. My neurologist may prescribe but either Id have to say Ive taken the Nortriptyline or lie and say I did but didnt have an impact or take it first. I def feel its nerve and brain activity I need to calm.

@DeanD You could always say you just want to give the gabapetin a try before starting an AD med!

Source?

Can you post a link?

I’ve always got extreme dry mouth after about 3 days on that stuff.

It was ineffective for depression & anxiety for me at 50 mg for two months, just had side effects like dry mouth, higher heart rate, occasional acid reflux type of pain, even occasional chest pains. So I slowly weaned off over months. It didn't seem to ever affect my tinnitus or insomnia.

Or maybe it's the enjoyment of the food taking the mind off the T?

I have had this too since the beginning. I also have thought it may be our brain focusing on the pleasure of eating, from taste to stomach getting food.

@ErikaS - I have been doing a little research on this and found that chewing may stimulate nerves and muscles around the jaw which can activate potassium channels. Perhaps this action gives slight temporary fluctuations to the performance of potassium channels calming the neurons for a short while - until, annoyingly, balance is restored.
All very theoretical but a possible pattern there

@hopefuldede - I'll be nervous but not ridiculously anxious for the procedure, so don't see a diazepam helping me much - whereas maybe a shot of whiskey and a paracetamol will take a bit more of an edge off (?)
Just wish they'd knock me out and do it!

Shot of whiskey is a great idea. I have to have two glasses of wine before any flight - takes the edge off

I usually just have them put me under completely.

Thanks @ErikaS :)
@hopefuldede - surprisingly I woke up with no real hangover (no idea why but I'll take it!) - although I did wake up wondering where on earth I was! I'm not used to staying in hotels anymore lol

@DeanD wow you’ve come such a long way bro! Impressive!! Did you use pro in the bar/club? I’m assuming you did lol nice man!

@Sammy0225 - thanks mate! - Must admit a few months ago I didn't think there was a chance of that. Tbh a few days ago I didn't think I'd manage it but guess I kind of forced myself.
Yes I wore my custom molded plugs. Did briefly take them off on the rooftop bar and it didn't really feel overly loud, but put them back in as a precaution. Was happy to say I did it but I did spike a bit after due to the reactivity.

Usually goes away quickly for me but I have had more and more of them. A little longer in length too.
Only once it lasted about and hour and it scared the hell out of me. I am sorry to hear and hope it goes away soon.

My tinnitus sound that falls in my sudden hearing loss range is very somatic. All the other crazy crap (mid frequency tones, electric beeping, swirls, etc) doesn’t seem to be. Currently sitting on my couch in quiet home and someone started an electric tool next door. Tinnitus immediately reacts by picking up speed, intensity, and intrusiveness.

That also happens when I get out of bed in the AM to let the dog out and go right back to my bed to lay down. Hardly any sound other than getting up, walking, opening and closing door quietly, then going and laying back down. It is truly unbelievable.

@ErikaS The very odd time my T is soft in the am however noise or no noise after 10 to 15 minutes of being awake it goes back to loud. It must settle when I sleep.

Only have my EEG with reactive T, no EEG done before it :(

@ErikaS - you do wonder sometimes whether two EEGs the same day, before and after noise, in someone with reactive tinnitus may show brain changes and where.
Maybe it's been done, but I have researched like crazy and can't find anything published

Teams doesn't already have live captions? I swear I was using them 2 years ago at my last job

@kingsfan - MS Teams has them, but they can only be switched on your side if the meeting organizer switches them on their side. Even switched on no one else sees them unless the user activates them.
Why they are not on by default is just stupid.
1:1 calls, the captions are default on, but meetings they are default off.

@kingsfan I spoke to Microsoft Accessibility support about how embarrassing it is keep having to ask meeting organizers to switch them on just for me - they said 'sorry, it's just how it works'.
Great job Microsoft Accessibility team!
Desperate for 3rd party software that can display captions from any software or website used when audio is playing

@4Grace - sorry I have only just seen this. Yeah with my ear plugs my tinnitus louder and more intense. How do I handle it - good question, I got in to the mindset of its loud tinnitus or stuck homebound still listening to it. Yes it may increase 20% more but I can do more. Distractions are good.
Conversations are difficult though when out. Often I can't hear people as I am hard of hearing at the best of times lol

@4Grace - I found things can still be enjoyable again. Ive got back in to things I thought I never would, and look forward to doing them again.
I was up til 1am last night engrossed in a hobby and didnt realise the time!
We have good days and bad. On good days I try and enjoy things more, on bad days I claw through til bedtime on the hope tomorrow will be better.

@DeanD - Thank you. First post. sounds so nice. I have had all days of clawing through until bed time hoping that the next day will be better. Hearing protection makes mine so much louder I cannot explain, now I think I am bound to home and running out of steam.

Oh, can it be used as a speakerphone? It doesn't look like it has a microphone?

Ahh sorry I see what you mean, no it can't Im afraid

It doesnt have a microphone

I wonder if increased heart rate is playing a part

@Hardwell mine seems to become louder after being strenuous.

@Hardwell - I kinda used 'countryside' a bit loosely to paint a picture of quietness, when in reality it was walking to the end of my road, which is small and between fields. I'd slowly walked for around 3 mins, so not heartrate I don't think for me. Happens when I'm out driving too. I don't leave my house without wearing headphones to give some protection - as earplugs are difficult now

@hopefuldede - those trips sound great, be just the thing you need!

@hopefuldede - how did the EMG go?

Hey Dean - all clear! I was nervous as hell getting it done. Going through a shitty spike tonight though was out running today and one of my buddies screamed for no reason right beside me. Doing some self talk here telling myself it will pass shortly.

@ZFire Hey

Same thing for me as well, @DeanD. The tinnitus overrides the fridge and freezer noise, making it extremely difficult to hear even in a quiet setting. I can still hear whirling sound of the freezer, but it intermingles with my tinnitus heavily.

This is where it confuses me when we talk about loudness of one’s T. Some occasions the fridge masks my T, but most of the time I hear it over the fridge. Although I can still hear the fridge clearly