Another newbie!: Hi all Just popping in to say... - Tinnitus UK

Tinnitus UK

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Another newbie!

Pnut1 profile image
20 Replies

Hi all

Just popping in to say hi and a quick intro.

My audiologist recommended I find some good forums to join, and this one popped up on a certain search engine, and it looks quite good.

I'm physically disabled and a wheelchair user, but that's not why I'm here. I've suffered from mild deafness for approx 20 years and worsening tinnitus for a bit longer, and significantly worsening recently.

Anyway, here I am, I am interested in reading up on how other people have dealt with their deafness & tinnitus as it will help me, and I'll chip in as and when I can.

Pnut

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Pnut1
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20 Replies
Snafflesnap profile image
Snafflesnap

Hi Pnut1 I've had tinnitus since July 2021 and it has changed my life. I've taken early retirement as it made my job difficult. I now take anti depressants and resort to sleeping medication. At present its particularly loud but hopefully it may get quieter as I've had odd days where its almost silent. Regards Tim

Pnut1 profile image
Pnut1 in reply to Snafflesnap

Hi Snafflesnap. Thank you for replying, and so sorry to hear that you have tinnitus as well. It really is an awful "disease".

I can understand why you've started taking anti-depressants, it really does get you down at times, I know I've actually screamed at it (not that it helps lol). Also sorry that you have had to take early retirement (or maybe that's a good thing?).

As I've had so long putting up with it, I've tried loads of different things, and unfortunately, don't believe anyone that says there is a fix, I have seen drops that “FIX TINNITUS” on Ebay lol.

If you find it worse at nighttime, which I guess you do as you have sleeping tablets, have you tried some white noise, or river, rain thunder or sea, or even chill out music in your bedroom at night? Either just playing in your room or if that would annoy a partner, you can get "Pillow speakers" then just plug them into an MP3 player or even your mobile phone (on aeroplane mode lol).

As my tinnitus has got so bad recently, I have even had some white noise playing near me during the daytime, while watching the tv etc.

If you type "tinnitus sound therapy" into YouTube, there are loads of different sounds to try.

doglover1973 profile image
doglover1973

Hi Pnut1 Welcome 🙂 This is a great forum. It's helped me a lot over the past 15 months. I've got hearing loss & tinnitus - like you. My T got worse in July 2020. It's not easy when T gets worse because it's like starting over . I see from your reply above that you're up to speed with sound therapy. Relaxation techniques can be very helpful too. I struggled so much at first I did a short course of CBT. I completely agree there's no cure. I expect you can give some of us some good tips after 20 years!

Pnut1 profile image
Pnut1 in reply to doglover1973

Hi Doglover, thanks for the welcome. Sorry to hear that you have H & T as well. It's awful when T gets worse, It feels like you have nowhere to go, and me, I could just scream! Relaxation, wow, I am the most un-relaxed person I know, wound up like a wound up thing I get told lol. Relaxation I keep getting told will help, but I've never mastered it. Even after 20 years, with my T keep changing and recently getting so much worse, I feel like a noob myself, so maybe I could do with the tips? All the best

doglover1973 profile image
doglover1973 in reply to Pnut1

That's exactly how I felt but things do get better as you get used to the new status quo. I 'm not a very relaxed person . I worry about everything. My CBT counsellor taught me the relaxation techniques . It wasn't easy at first but they do make a difference - if you persevere. Not to T itself but to the way you deal with it . I'm calmer about T now - even though I still don't like it .

Pnut1 profile image
Pnut1 in reply to doglover1973

Problem with relaxation is that it winds me up!

Hello Pnut1 👋 Great name! Nice to meet you. I noticed mild tinnitus around 2011 but it really got louder and affected me from August 2020. I get ear pain/pressure...been to ENT. I've got sensorineural hearing loss. Moderate in medium tones, to severe in the very high tones. I think my tinnitus is linked to that.

I've googled tinnitus a lot for ideas, not tried a white noise generator but I sort of alternate between music and silence. It kind of works for me. I like the 70s and 80s music channels on TV.

This site has helped enormously. xx

Pnut1 profile image
Pnut1 in reply to

Hi Fuzzy, thanks for replying. Thanks, I actually searched the net for "forum names" lol. Wow, sounds like you have a lot going on with your hearing, but it sounds like you are getting a handle on it. The pressure in the ear is that anything to do with Meniere's disease? My GP is looking at me for that atm, and has me on some pills which are helping the sickness and dizziness I get sometimes. Funny you mention ENT, I am on an URGENT waiting list for that, I joked to my GP, so it's 1 year rather than 5 is it? Re noise generator, you don't need to buy an actual noise generator, it's just searching on YouTube for TInnitus Sound relief, then download it to an MP3 or phone or something, much cheaper.

Thanks yes at first they thought it was menieres. I might look into the noise generator. You sound cheerful, that is half the battle. Good you're on the urgent list, shocking wait times! Take care x

Pnut1 profile image
Pnut1 in reply to

It's either laugh or cry mate😀

rabbits65 profile image
rabbits65

Welcome Pnut1 ,You sound like a cheerful positive person , just what we need in this group . We are all in the same boat here with all different stories . I notice you mentioned tinnitus being a disease. Actually it’s not classed as a disease . I’ve suffered two years now and have done very weird symptoms . Humming , electrical sounds like a fan oven running. Also a lot of pressure, I cope by walking my poodles outside in the fresh air the sound of the birds and rustling trees in the breeze is a saviour. I do hope you find this group useful and friendly . You can look up old posts and there is a massive variety of interesting posts to read up on and it’s good because it doesn’t make you feel so isolated and alone .

Try and cut down your medication if you can as this can sometimes add to the noise and pressure .

Pnut1 profile image
Pnut1 in reply to rabbits65

Hi Rabbit, thanks for replying. Yes, probably not officially a "disease" as such, but to us sufferers, it really does feel like it doesn't it? Sorry to hear that you suffer as well, and I genuinely mean that, having it so bad myself, I really do feel for anyone that has T, and any non-sufferers really can't understand what it's like I think. Yes, there is so many different sounds, I always thought tinnitus was "whistling" in the ears, but I like you get so many variations now, the worst one being, the one that sounds like when someone is taking the tyre compressor off the tyre, and it is a really loud psssssttttt, over whatever other noise I have going on, grrrrr. It's nice that you have found something to help you ie walking your poodles, lovely dogs by the way, I have Bichon Frise, don't walk him, just race him on my mobility scooter 🏎️. Yes, loving this group so far, so much to read up on. and medication is a long term goal. Cheers

rabbits65 profile image
rabbits65 in reply to Pnut1

Hello again, thank you for your lovely reply. There are many books out there to read all about tinnitus and how to cope with it. I bought one book called TINNITUS. From Tyrant to Friend by Julian Cowan Hill. How to let go of the ringing in your ears.. however it seems you and I have many different sounds , fullness and pressure going on. Feel sometimes like I’m in my own “ bubble”; But I try to laugh and tell myself I am Unique. 😂 😂 😂

Beesmac profile image
Beesmac

Hello Pnut1. Welcome - we all understand exactly what you are going through and I too shout at my Tinnitus to “shut up and go away” but it doesn’t listen! I am a little different in that I have Musical Tinnitus or MES - it is the same repetitive undefined music 24/7. I have had Tinnitus and hearing loss for years which didn’t bother me but then December 2020 I suffered a bout of Labyrinthitis which has left me almost totally deaf in my right ear and the music started!!! People with normal hearing find it difficult to understand what we go through. I get good and bad days but Tinnitus Rules!! The part that upsets me most is that I lost the ability to hear higher tones so can’t even enjoy the music I used to love listening to as it sounds flat! On really bad days I take a low dose Diazepam which does help me but we are all different in what helps and what aggravates!! Nevertheless we have to crack on or we’d drive ourself nuts. Happy Easter to you and everyone on here and enjoy the sunshine x

Pnut1 profile image
Pnut1 in reply to Beesmac

Hi Beesmac, thank you for the welcome. OMG, I'm not the only one that shouts at my tinnitus? Although, I might use some slightly more fruity language than you lol. Wow, your T sounds quite in-depth, and I'm sorry to hear it, but also glad that you know what's going on, many don't! You are so right about people with "normal" hearing not understanding what we go through, or what it's like, tbh, mine has been so long now, I can't remember "silence". (must stop feeling sorry for myself). You losing your ability to listen to music/higher tones, sounds really saddening for you, but I'm sure you will compensate by finding other music that don't use such high tones? Can you guess that I have no clue what I'm talking about? Sorry. Diazepam, ahhh, yes, my GP offers it to me every now and again, but tbh, my personal preference is to avoid medication as much as possible, I am quite happy to have a good shout, scream and even cry if I have to, yes, I can admit to being a grown man and having a good cry, and it does help sometimes. As you say, crack on or we'd end up nuts, although my wife does call me that most of the time lol. Happy Easter to you as well. Take care.

Beagleears profile image
Beagleears

Hi Pnut1 great name by the way. Welcome to this forum which has lots of friendly people and good advice. I have had vertigo tinnitus hearing loss and full itchy ears since 2020 and with lockdown it was difficult to get anything sorted. Eventually had my ears cleared out as they were very blocked with ear wax but problems didn't go away. After 2 years of struggling to get my GP to help me I am now on betahistine which has really helped the vertigo. Which seems to have gone but I am still wary of it coming back as I had it every day for 2 years. Its a relief to feel balanced again. Tinnitus for me is like I'm on an aeroplane when the altitude makes your ears feel weird before they pop and the engine noise drones in the background. I also get a high pitched squealing sound. I hate it but I know there is nothing I can do about it. So I keep busy and try not to think about it which is easier now the vertigo seems to have gone. Thank goodness its spring as I have a large garden to keep me busy. I love my garden but last couple of years I have struggled with it so looking forward to getting in it this year. I get out into the countryside as much as possible. I live by a beautiful forest so it's easy for me to do that. I also use meditation and relaxation techniques to mitigate the tinnitus sounds. You seem on top of everything so I wish you well take care.

Pnut1 profile image
Pnut1 in reply to Beagleears

Hi Beagleears, thank you for the welcome. Yes, I'm beginning to see the benefits of this forum, I never expected such a great welcome. I'm really sorry to hear that you suffer with tinnitus as well, it's a bugger, and I call it a disease. I'm glad to hear that the Betahistine seems to be working for you, coincidentally I've just been put on that for Meniere's disease, and touch wood, it seems to be working. I also get the itchy ears, but it ALWAYS happens when I get new hearing aid tubes, and sometimes in between, I have thin skin in the ear canal, so the tubes irritate apparently. I was prescribed Otomize spray by the GP which did help, It's an antibacterial spray, someone else suggested Otex ear spray, but there's a caution with hearing aid tubes with that one. However, in the last 1 day, so I can't really recommend it yet, I'm just started using Earol, it's literally spray Olive Oil, helps with ear wax, but my audiologist recommended it for keeping the ears clean, and for me with itchy ears too. You sound like you live in a lovely area, the forest etc, and well done for coming to terms with relaxation and meditation etc, I'm so jealous! Anyway, wishing you all the best, and to anyone that's commented, feel free to comment again, or message anytime. Take care.

Beagleears profile image
Beagleears in reply to Pnut1

Glad you have some respite with betahistine as well.

Pnut1 profile image
Pnut1

Hi Willow-song, really sorry to hear that you also have tinnitus and that your Pfizer shot seems to have aggravated it. It is well documented that several medications can worsen tinnitus, so I see no reason why your shot did not. I had the AstraZeneca vaccines first 2x, then the Pfizer booster, but did not notice any change in my hearing or tinnitus. I'm glad you found the forum too, it seems great doesn't it? Really friendly people, oh and thank you for the welcome, and back atcha!

Pnut1 profile image
Pnut1

It would be a tough call though for me with other health conditions, possible risk to increased tinnitus, or catching Covid. I remember at the time, the hoo ha about possible blood clots if you had the Covid vaccine, but we decided, as did many that the benefits outweighed the risks. Glad to be here, and hope you have a good weekend.

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