Nadia231

Nadia231

Member From Manchester, UK
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  • Nadia231
    anyone have any updates on the Susan shore device? I have literally no hope on anything to improve T but I was wondering how that is going
    Nadia231
    Has anyone been to any T support groups? North of England, like around Manchester? I'd like to meet pplwith T, in person, I feel so isolated
    View previous comments…
    Diego LR
    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.
    Leila
    Yes, a RL support group would be nice.
    Zigs
    I'm in the north west too! I believe there's one at Aintree hospital, or was before Covid anyway
    Nadia231
    Hi folks.not been here in quite a while, trying to disconnect from more sadness and pain. My T and H are worst than 3 months ago. Unbearable
    View previous comments…
    Mo8409
    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. ❣️
    Nadia231
    @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
    Mo8409
    @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.
    S
    How have you been doing Nadia? :)
    View previous comments…
    Barry098
    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!
    S
    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?
    Nadia231
    @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
    Nadia231
    Hi folks. Has anyone tried T retraining therapy on the British NHS? Ive got my appt in 2 weeks and I don't know what to think...
    View previous comments…
    UKBloke
    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.
    Nadia231
    @Strawberryblonde I guess so. I have an initial consultation in 2 weeks and have no idea what's going to be about
    Nadia231
    @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
    Nadia231
    Hyperacusis is so bad that I can even do normal stuff w/o ear defenders. I knew this all along, it was pointless. It's so frustrating
    Nadia231
    Went to the ENT and after 3h came home (in tears) knowing that I have to buy an under the pillow device... After explaining that the 1/2
    Nadia231
    I can't be the only one who doubles or triples her daily steps just because I take the quieter but longer routes home to avoid loud streets
    View previous comments…
    Lurius
    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.
    Leila
    You should see me on my walks whenever there are people with young children or dogs approaching :)
    Lurius
    I just want to hug all of you.
    Nadia231
    Bonfire night! People stay inside, nice and safe. Even from inside my house I can't help but getting anxious about the noise.
    Damocles
    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.
    S
    So glad bonfire night is over for another year :D just new years eve to get past next!! Already dreading that one lol.
    Nadia231
    2/2 now all sounds around have increased in volume, it's like a cannot hear anything but still hear it loud. I'm so scared, what is this?
    Forever hopeful
    Perhaps you should see an doctor. Seems to be a material change.
    Nadia231
    @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
    Forever hopeful
    @Nadia231 So sorry. We don't have a national health service in the United States so access is a little bit more relaxed
    Nadia231
    1/2 I was coping so well lately with T and H. This morning at work sth weird happened inside my ears, like sudden pressure, muffled hearing
    View previous comments…
    Nadia231
    @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
    CRGC
    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
    Nadia231
    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
    Nadia231
    These clicking sounds are driving me mad. They're continuous sounds similar to a clicking pen. It stops for 20 mins and then back again
    View previous comments…
    Nadia231
    @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
    TheDanishGirl
    @NYCGuy Really? But it probably carries risk of worsening tinnitus further. I could imagine that.
    NYCGuy
    @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.
    Nadia231
    2 years after my huge spike that turned my already distressing T into a living nightmare, accompanied by an even more cruel friend (H)
    View previous comments…
    Nadia231
    Unfortunately things have not improved and T + H have just slowly worsened. Mental health has been a rollercoaster, and it still is.
    Leila
    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!
    CRGC
    Sorry to hear Nadia, I hope things get better for you
    MartinPihl
    Hi there.
    Reading your posts, we seem to have very similar T.

    How is it going with your fleeting T? I have mine 1-3 times each day, precisely with the same symptoms that you describe in your posts.

    I am also nervous about catching Covid (working as a teacher, so im basically just waiting to get it) - I hope that it still hasnt affected your T?
    Nadia231
    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!
    Damocles
    View previous comments…
    Damocles
    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.
    Damocles
    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!
    Damocles
    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. ♡
    Nadia231
    I've tested positive on covid, so scared that it might affect my T
    View previous comments…
    Damocles
    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.
    Nadia231
    @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!
    Lurius
    I'm so glad to hear you're doing better. I feared the worst but hoped for the best.
    Nadia231
    First time since big spike a year ago that I did not notice my T until 10 minutes after waking up. I couldn't believe it. Made my day!
    Nadia231
    Does anyone else get this weird symptom with their fleeting T episodes? Along with the feeling of deafness for a second, I also feel
    View previous comments…
    Nadia231
    @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.
    Steph1710
    @Nadia231 yes I do. I thought that was normal with fleeting T. :-/
    Robster
    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.
    Nadia231
    Lots of fleeting T episodes with feeling of deafness today... Very scary ones. Some of them lingered for longer than usual.
    View previous comments…
    Damocles
    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.
    Nadia231
    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...
    Wrfortiscue
    What Damocles said… you're good nadia231 no worries
    Nadia231
    Hi all, any recommendations on ear defenders? They are mainly for flying and to do some noisy house chores.
    View previous comments…
    Nadia231
    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?
    Kriszti
    Used to be tight and uncomfortable for me too, but it gradually got better as I kept wearing them.
    Robster
    I use Peltor 3M, they are a little tight but I have a big head!
    Nadia231
    In panic mode after a sudden spike+new tone... I'm at work and don't know how I'm going to get through the day
    star-affinity
    Sorry about that. :(
    Try to think/hope it will get better – that the spike is likely temporary. Easier said than done, I know...
    star-affinity
    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/
    Nadia231
    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
    Nadia231
    T sufferer for 5 years now my brother-20yo- has T as well. My anxiety is off the roof, thinking he'll have to go through all this I'm gutted
    Damocles
    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.
    Nadia231
    Just had one of the scariest episodes of fleeting T. So loud I could hear nothing but that for 40s. I'm still panicking.
    Gareth Davies
    I'm really sorry Nadia; that sounds horrible :( How are you feeling now? Any theories yet on what could be causing it?
    Nadia231
    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
    Nadia231
    6 weeks in after a spike... no improvement at all... Looks like it´ll be my new baseline. Don´t think I'll habituate to this loudness :( :(
    View previous comments…
    kingsfan
    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.
    dan
    how loud is it?
    Nadia231
    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...
    Nadia231
    Anyone from the UK? Is prednisolone the same as the prednisone you guys talk about in this forum? Can you get it without prescription?
    Steph1710
    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
    Steph1710
    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
    Nadia231
    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
    Nadia231
    1 month in after loud spike...it seems this is going to be a permanent one. Same volumen, same tones... no hopes getting back to my baseline
    View previous comments…
    Tweedleman
    take NAC and wait like 6 months imo
    Nadia231
    NAC did not do anything when I first got tinnitus. But I'm definitely giving it a go again... I'm quite desperate
    Bill Bauer
    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.
    Nadia231
    I habituated to my first tinnitus in 2 years. 3 weeks ago a very loud unmaskable spike woke me up in the middle of the night. I'm devastated
    View previous comments…
    Steph1710
    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
    Nadia231
    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.
    Steph1710
    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
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