Nadia231

According to U of M website
a possible June release. Don't hold your breath.

The FDA approval process needs to complete first, and then who knows how much longer it might take for wide scale availability in the US and even longer elsewhere. Here is a thread with the latest discussion on it: https://www.tinnitustalk.com/threads/new-university-of-michigan-tinnitus-discovery-%E2%80%94-signal-timing.2805/

I am hoping by the time I get my appointment at the T clinic in Philly which is a 6-8month wait from now it will be close enough on the horizon that I can talk to the audiologist about it.

Hi Nadia, I am also a Spanish living in the UK, but in London. I also have H & severe T. Also struggling a lot with these conditions.

Yes, a RL support group would be nice.

I’m in the north west too! I believe there’s one at Aintree hospital, or was before Covid anyway

Hi @Nadia231 Do you have any type of hearing loss? How long have you had it? I'm sorry you're having a hard time. ❣️

@Mo8409 I only have a mild hearing loss in my r. Ear. But its not causing me any issues, my hearing is good. My T started really really mild in 2015 just in my left ear, and has been getting worse progressively. Now I have H and very loud T in both ears

@Nadia231 I'm so sorry to hear that! I hear that happening quite often :( I hope it goes back down with time. I'm sure it's frustrating to deal with.

Mine is the same way. I manage ok for a few weeks then suddenly for no apparent reason it amplifies and becomes unbearable. Hang in there @Nadia231 at lest we know there will be manageable times ahead!

Sorry to hear you are going through such a shitty time with your T right now @Nadia231 Does this happen often were you get a sort of reprieve then it ramps up?

@Strawberryblonde I don't really get any improvements as such, I just keep habituating to louder and louder tones and when I am mentally more stable and accepting my T it becomes worse again. So I'm at a point now where it's just a huge pile of new tones that keep stacking up. And the H does not let me do anything. Thanks for asking

Interesting. Are they referring to it as TRT? I have an optional NHS pathway into CBT, which may or may not be the same thing. Would need to compare protocols.

@Strawberryblonde I guess so. I have an initial consultation in 2 weeks and have no idea what's going to be about

@UKBloke I think that's what the doctor said to me. I'll wait and see, but I expect nothing from it. I said to him I have severe hyperacusis. If they are going to teach me how to meditate while listening to some sounds... I'm f**ed

I don't go at all unless there's an emergency. Loudest place I will go is the grocery store and only in the morning, when there's no people.

You should see me on my walks whenever there are people with young children or dogs approaching :)

I just want to hug all of you.

In my every window double glazed, every vent sealed, apartment right now, @Nadia231, and got my X5As on as I type this.

Sounds like World War 3 has arrived early here.

So glad bonfire night is over for another year :D just new years eve to get past next!! Already dreading that one lol.

Perhaps you should see an doctor. Seems to be a material change.

@Forever hopeful I'm calling my GP tomorrow morning. The British NHS doesn't work well though... It could be weeks or months until I can see an ENT

@Nadia231 So sorry. We don’t have a national health service in the United States so access is a little bit more relaxed

@CRGC nothing at all, I was at work in a silent room for hours working on my PC. Nothing has happened this week either. I'm devastated. I'm locked up in my bedroom right now. Just opening a drawer is unbearable

Sorry to hear…hang in there! Do you feel like you’re experiencing sudden hearing loss? If that’s the case call a doctor! Tell them it’s an emergency. If not, could be a sensitivity spike. Hope you get it under control <3

No hearing loss I think, actually everything sounds louder. It started with ear fullness and pressure, followed by a weird sensation in my head and the hyperacisis spike

@NYCGuy what can the do? What type of surgery? Most ENTs Ive been to are absolutely clueless about every single symptom I describe to them

@NYCGuy Really? But it probably carries risk of worsening tinnitus further. I could imagine that.

@Nadia231 @TheDanishGirl Very few know, there are two groups in facebook called tonic tensor tympani / middle ear myoclonus. I will doctor santos in Boston and the best in Europe is Manohar Bance . There are risk of causing Tinnitus or even going deaf, but so far 95% the times there are no problems. Is very important that doctor do it with laser and also not via the eardrum, so very few knows about it.

Unfortunately things have not improved and T + H have just slowly worsened. Mental health has been a rollercoaster, and it still is.

Oh yeah, you don't know the meaning of true suffering until you've had a run in with hyperacusis. I hope your tormentors have calmed down a little with time!

Sorry to hear Nadia, I hope things get better for you

Hi there, my fleeting T has not been very active lately, I'm associating that with my level of stress. I'm more calmed now.

I'm also a teacher and was basically waiting for it. My T has not changed, but I did notice some strange symptoms while I was ill, mainly related to my ETD (popping, cracking, spasms) like a common cold.
I hope you are well!

So pleased to hear this @Nadia231!

I'm not sure how long it will take for the sense of taste and smell to return (I never suffered this symptom), but from people I know, I've been told it can take up to 2 months; so just be patient with that.

The good thing is, you are now going to have developed anti-bodies (aka. natural immunity) 700 times more protective than any COVID "vaccine" you might have gotten!

So that is also a win!

Anyways, I'm doing well, thank you for asking.

Very busy at the moment (studying, working, exercising), so not finding much time to check TT, but taking a break tonight just to make sure you're all doing okay. ♡

That's good @Nadia231, sounds like you're over the worst of it. I expect you should be feeling 100% again soon.

Just keep doing the healthy things, and maybe try some steam inhalation (with Olbas oil) for the ears. The funny feeling could be fluid trapped in your eustachian tubes.

@Damocles that sounds good, I will definitely give it a go. I got some Quercetin as you suggested (+my usual NAC, b12, D, magnesium), so let's see if all that gives my inmune system a good boost!

I'm so glad to hear you're doing better. I feared the worst but hoped for the best.

That's what I'M talkin' about @Nadia231!

Starting to acclimatise.

Nice work!

@Damocles you're very right about all the paranoia that comes with T, but I've had T since 2015 which progressively got worse with the years... So any new weird symptoms just scare me so much. But I'll take your advice. Worrying won't solve it anyway.

@Nadia231 yes I do. I thought that was normal with fleeting T. :-/

It's very common with fleeting T. My hearing drops out for a split second, followed by louder than normal T for a few seconds. Happens to me most days, kind of use to it now.

Of course it could just be random. Some days I get it a lot (although, not to the extreme I've related above) and other days not at all.

Don't worry about it though. Just another symptom we all seem to share in common. By the time you've had tinnitus as long as some of us have, this sort of thing doesn't even seem worth mentioning.

I don't drink coffee or anything with caffeine and can't really identify the cause... As long as the don't stay, I'm fine.. I just get really scared when I get one...

What Damocles said… you’re good nadia231 no worries

Hi guys, I bought the x5a peltors and the noise cancelling is great but they are too tight? I thought I bought the wrong size but apparently that's the standard. They really hurt and I'm desperate to take them off, is that normal?

Used to be tight and uncomfortable for me too, but it gradually got better as I kept wearing them.

I use Peltor 3M, they are a little tight but I have a big head!

Hahaha, this comment just made my day. I know, Sira is way too cute!

The cat is so cute!!

Sorry about that. :(
Try to think/hope it will get better – that the spike is likely temporary. Easier said than done, I know...

Do you have some sort of speaker where you can have a low volume but distracting sound on?

Here are many options: https://mynoise.net/

Thanks for your words. I will look into that.. I think is more the fear of it becoming permanent, like it usually happens for me

Sorry to hear this @Nadia231.

At least he'll have you to help guide him through it.

Just having someone that understands, let alone someone who cares and can offer advice, is a treasure one cannot put a price on.

I’m really sorry Nadia; that sounds horrible :( How are you feeling now? Any theories yet on what could be causing it?

No theories... I get fleeting T constantly, and I know what it is and that it goes away after a few secs. This one was so loud and long that it really scared me. Thanks for your comment

I hope you feel better. I'm a 2 weeks into a spike..well a new tone.. and it's been rough as well. Just remember you're not alone. We'll all get through this together.

how loud is it?

It is quite loud. I hear it now over the TV, outside as well like at the park when it's quiet... And the hyperacusis is quite bad too...

Hi Nadia. Prednisone has to be converted to Prednisolone in the liver before it can work. So actually Prednisolone is better. :) well no difference really. I'm in the UK in case you're wondering.

Steph <3

Oh I forgot to add that you can't get hold of it without a prescription. It's not a drug to messed about with. I was extremely lucky to have a doctor who prescribed it to me after I told him about its potential help towards the on set of tinnitus. X

Oh Thanks for the info, I just asked because when I google: "prednisone UK" it always directs me to "prednisolone" so I thought it was a different thing in the UK. I will ask my ENT to prescribe some to see if it helps with my spike

take NAC and wait like 6 months imo

NAC did not do anything when I first got tinnitus. But I'm definitely giving it a go again... I'm quite desperate

Give it another month. If it doesn't begin fading after two months, perhaps your fears are justified. After just one month there is still hope.

To be honest Nadia, I just decided to get on with life as normal. Felt like killing myself to begin with, but as I got through the days, it slowly became better again. You just have to push forward even though it seems impossible. x x

Thanks for the comment. I really know that is the way to go.. But I just can't right now... I was so habituated to my normal tinnitus... And now I have this loud one in both ears all day. I will try my best.

If it makes you feel not so alone, I’ve got a head cold right now, which has ramped up my T. I know it probably feels it Nadia, but you’re not alone. <3 I’m lying in bed now wishing I could go back to before when I didn’t have to sleep with sound on. I certainly miss the silence x