not coping: Hi everyone, I was... - British Tinnitus ...

British Tinnitus Association

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not coping

meglloyyd96
meglloyyd96

Hi everyone, I was diagnosed with T 7 months and until the last month or so it's been manageable, the noise I hear is like a screech/squak, However the last few weeks it has been unbearable.. I am sleeping maybe 2-3 hours a night and the lack of sleep is driving me up the wall! The noise is constant all day everyday and gets louder at night time, I am a full time teacher as well as a masters students and it is getting to the point that I can't concentrate on anything. on initial diagnosis I was given medicated ear spray which has done nothing, I have now been referred to ENT which could be months.. and as a last resort they have prescribed me citalopram which is something I am not massively keen on taking. My GP has said there is nothing more they can do for me as they have all-ready sent the referral and if I need additional help I should go to a and e... sorry I feel like i'm moaning but I dont know anyone who has T and I feel that my family/partner are not sure what to do/say , Any advice I will be eternally grateful for!

-Meg

34 Replies

Meg. Take a deep breath! You're in good company. I've been thru the 2 - 3 hours a night stage. It's awful. You have all my sympathy. Just hang in there. There are things you can do. I'll leave the advice to those who've had tinnitus for longer. I've not reached a year yet.. Your family won't know what to say. Mine didn't - and still don't - but you'll find solace here.

Thankyou :) Im glad I found this forum through the BTA! I have been reading through some of the posts and it has been so helpful, I just feel like my GP cant be bothered yno! and I think my family think I am being quite dramatic! but i just want to cry all day long just so frustarted with everything..

Angel_D
Angel_D in reply to meglloyyd96

It's a very frustrating condition to have. It sounds like you have a lot of stress on your plate with being a teacher and a student. Probably not helping!

meglloyyd96
meglloyyd96 in reply to Angel_D

Excatly! I know it was tough to take on but didn’t realise I would feel like this a few months in! Just trying to find ways to manage!

Oh meglloyyd you have my sympathy. Something like one in six of us, of the UK population, has T and most of us have gradually got to grips with it - well, mostly.

My T sits in the corner ready to pounce on me if I’m a bit down. Most of the time I tell it that I AM In charge of my life and not IT.

Your doctors may be a bit dismissive as they’ve nothing to offer you - other than antidepressants. Those around you haven’t experienced it so don’t know what you’re going through.

But take heart. You’ve started your journey by reading the BTA website and some of the posts here. Habituation sort of happens all on its own. Like, say, traffic noise when you’re walking down the road, it’s there but you don’t notice it.

You WILL find a way to deal with it all. Taking antidepressants might help you along the way.

Thankyou so much! I am feeling better today after reading all of your kind replies, I had 5 hours last night as-well which has helped! Just some trial and error at the minute☺️

That's very good news. Just take one night at a time .. You'll get there 👍

Hi Meg, so sorry your having these probs with T, but yr in the right place. I got T after a severe bout of sinusitis, was really bad, prescribed Escitalopram, awesome, as is Citalopram, it just stops the stress you feel from T. Once the stress eases it starts to get easier to deal with and u notice it less and less. Will help you to sleep too. Take care, hxx

Ahh Thankyou! That’s helpful, hopefully the citalopram will make some sort of difference!

Hi Meg, as you have now discovered, you are not alone.

When GPs cannot fix a patient, many consider their job done and quickly become dismissive. Some offer anti-depressants to help their patient get over the inevitable resulting distress. However, a few are better than that, and will suggest alternative therapies to help a distressed patient relax.

You will quickly discover that it is not uncommon to develop T; it is extremely rare to find a cause, let alone a cure. But don't despair! There are habituation and management therapies and they don't all involve swallowing anti-depressants.

If you really want to see an ENT specialist in a hurry, have you considered a private consultation with a specialist of your choice, who might also get you checked over by an audiologist at the same time? Assuming there's nothing obvious found, the audiologist will have lots of advice about how to manage T, most of it sourced from the BTA! Expect to pay approximately £250 for a consultation and make it clear that it's a one-off! If anything unusual is found, it can legitimately be managed in due course by the NHS, but at least you'll know the situation sooner rather than later.

Take a look at relaxation therapy such as meditation (including CDs), acupuncture and perhaps visiting a qualified physiotherapist to have your head, neck and shoulder posture assessed. First consultation for therapy usually costs around £60. A good chiropractor (same cost) could also be helpful, but my fervent advice is NOT to permit low-amplitude neck thrusts or traction to your head/neck. Gentle massage, release techniques and exercise should be enough to help relax your head/neck/shoulders and correct any postural issues.

Most important: give yourself time to habituate to T. You're just beginning to climb a huge change curve and are very much still at the 'shock' stage.

Most of us here know how you feel and sympathize; believe me. Believe me also when I say that you can get through this, one day at a time.

Seetje
Seetje in reply to bridgeit

Hello,may I ask why you don't recommend thrusts or traction to the neck or head please?Does this make T worse?I have physiotherapy at the moment,and have been noticing T getting worse,so I don't really know what to think about that.If you have any experiences to share regarding this,could you please share?Thank you.

Happyrosie
Happyrosie in reply to Seetje

Hello Seetje. Whilst it wasn’t me who said about the physio, I can make a comment. I had physio on my neck and shoulders and was given exercises to do - these are fairly gentle. It made no difference to my T. Mind you, I went there for neck/shoulder/back pain.

Seetje
Seetje in reply to Happyrosie

Hello Happyrosie,thank you for your reply,much appreciated.

bridgeit
bridgeit in reply to Seetje

Hi Seetje. I can only speak from personal experience and have no absolute proof of a direct link, but I didn't have tinnitus before I had neck thrusts and some fairly vigorous traction procedures in an osteopath's clinic almost 3 years ago.

My T began at the same time as I underwent vigorous therapy for muscular constriction and migraine, which I stopped after a few weeks owing to my growing concern about the worrying and worsening problems, which haven't let up since. I have several other disturbing symptoms as well as T. The osteopath didn't know why this was happening to me, but felt the therapy procedures were both appropriate and sound. He wanted to continue with them; I did not. I felt these manoeuvres were somehow doing more harm than good.

It's been a long, hard road since then with a range of expert specialists trying their best to sort out my problem(s). They've had no luck so far and I've been through some rather "interesting" and challenging investigations. I won't go into detail. I am now of the view that I'm very likely stuck with debilitating symptoms, including T, for the rest of my life.

Do I have an underlying physical weakness that the therapy triggered? Possibly. Nobody really knows. Nonetheless, I would never, ever advocate anyone undergoing the very procedures that I feel triggered a range of horrible and unresolvable problems for me. I didn't realize just how much of a mystery the head and neck systems are to medical experts until something went wrong with mine.

Out of sheer desperation, I've seen a chiropractor since (a different one) and their approach is gentle, relaxing and (in my opinion) appropriate for me. Massage and exercise relax my tense muscles but make no difference whatsoever to the T. I don't expect it ever will.

PS. My current chiropractor also has absolutely no idea why the procedures I had coincided with such awful symptoms. He says he wouldn't recommend the same procedures again for me (obviously!), but has used them successfully hundreds of times on thousands of clients without any ill-effect. I trust him; he's good.

Seetje
Seetje in reply to bridgeit

Hello Bridgeit,thank you so much for your reply.I intend to listen to my gut feeling,and stop physio for now.I do have some neck issues,from before my T started,so I think it's best to see if there's any change there,by having a new scan.All the best to you.

meglloyyd96
meglloyyd96 in reply to bridgeit

Thankyou for your detailed response, I do have private health care soo I could go to see ENT specialist, however I’m just not sure if if it’s worth it, the excess is £100 soo I’m not too sure if it would be worth it! I will look at getting some CD’s to help! I am hopefully that the medication will just calm. It down enough for meTo be able to concentrate on my work until I can really focus on sorting it out over easter/summer holidays..

It really bothers me when a go just prescribed anti depressants, for me 100% waste of time , you have T not depression, However you may become depressed as a result?? Get in touch with ENT to exposure your appointment, as all they will do is pass you on to audiology, they are the ones who can help you,, we are all different so what suits me may not suit you, but my audiologist gave me hearing aids /maskers they help enormously, my anxiety went through the roof so I needed further help, but one step at a time , get in touch to get your appointment, nothing will happen at ENT other than refer you on, they may scan you though, stick with it, not easy, especially night time,I would advise against going private, all they want is your money, others may disagree just my point of view.

Hi Woodentop. I was referred to audiologist for hearing aids, and on separate occasions for microsuction, and whilst I mentioned T they all three said there was nothing they could do - other than what’s already on the BTA website.

Wow,, when I saw audiologist for the first time I was mega “ off my head” he just sat me down and whacked them in, they did help me, ok, no cure, but the horrendous high pitched tone was in a way “dampened down”, at this time my anxiety level was in outer space , I just don’t know what I would have done if I didn’t get some respite at that time,, only one way out in my mind, these however gave me hope and a way forward, I appreciate not for everyone as we are all different. I even sleep in them( with permission) as not usual recommended, but no way would I sleep without. First time around over 40 years ago I habituated, but the horrendous spike I fear this will never happen, but will happily settle the way I am today.Just to add when saying “hearing aids” I mean MASKERS.

Maskers weren’t offered to me - but on the other hand I am (very fortunately) able to live without - just using breathing etc etc.

Hi! Thanks for your response! I feel my GP was just ticking a box and didn’t really offer any help atall😔 my whole family have private healthcare so would only need to pay the £100 excess to be seen by someone so not sure if it would be worth it? Yes I think the one Step at a time approach is the best to take at this point! All I want is for a couple of hours where I don’t hear the noise! Just so I can concentrate! Is it really too much to ask for? 😂

On line there are on you tube sites that have sounds of different T sounds find them and play them to your family.then they relies what your going through.I have had serve T in both ears since 2008. I can’t sleep and with out sleep for weeks before I get sleep.I use celestial seasonings sleepytime infusion tea from Amazon it works if my T is at its lowest.I know it’s hard and I wish I could say it will get better but T is not the same for people you just have to be strong and not let it beat you.mindless meditation work for some people.sorry I can’t be more helpful.all the bestJohn

meglloyyd96
meglloyyd96 in reply to Joeb17

Thankyou John! I will give that stuff a go from Amazon! Thanks for your comment 😊

Hi Meg, what works for me is Vitamin B12 (methylcobalamin, not the other kind). It's extremely cheap and you don't need a prescription, and can be taken in large doses with no side effects (according to my research and my doctor but please do your own research). I took 4x1000ug tablets per day until the tinnitus subsided and have now been taking 2 tablets a day for the last few years (I still get tinnitus but much, much reduced from the jet screams I used to get). No-one has any idea why it works and it doesn't work for everyone but in my view it's better than experimenting with mood-altering drugs.

Hello Alistair. I’ve not particularly heard of this one; I regularly buy supplements from a trusted source so I’ve just shelled out and will see how I get on. The packaging doesn’t mention T specifically, just the usual stuff about supporting ones health and so on - but I’m sure it’s worth £14 or so for a tryout.

Had T for over 40 years. You will get highs and lows with your tolerance levels. Tried citalopram a long while ago. It didn’t work !The only thing to help is to consider many other people with serious illness are much worse off than yourself and keep busy and only go to bed when tired. I am sorry if this appears a little unsympathetic or helpful but I have been through all the emotions you are feeling now many times.

Dave

Hello again meglloyd. I’ve already replied to you once but I thought of something else this morning that might just help with the habituation.You said you’re a teacher, so this might resonate with you.

Until Covid, i volunteered at a local school helping years 2’s with their reading. Mostly, we sat outside the classroom of year 1. Year 1’s are a noisy bunch and I found it very hard to cope with their noise. Even when their door was closed. But the TAs and teachers both of their class and other classes didn’t find it noisy or bothersome - because they were habituated to it. I found it a read trial because I was only there for two hours a week; they had the noise for five or six hour’s a day and much louder at play and lunch time - and were quite happy.

I’m giving this as an example of habituation - the teachers and TA’s were habituated and I wasn’t.

I’m hoping that you, too, will find you get used to the noises in your head simply by the fact that time passes and you get used to it.

Hi there, welcome to the worst club in the world ! I am a veteran T sufferer, some 50+ years now, I reckon it was from having my music way too loud, especially in the car ? I`m sure you are aware that there is no known cure right now. Like most of the comments I read on here, I am sure that the lockdown hasn`t made things any easier, anxiety has made mine a little worse even by my standards as I`ve learned to live with it, it does sound quite a bit louder since this pandemic started. Anxiety is a trigger in my opinion, there is also a link with Blood Pressure, I have a monitor and have noticed if my BP is raised then my T is louder, I am prescribed, Amlodipine & Ramipril for my BP, so thats under control atm. Another thing I do once or twice a week is something called the Brandt Daroff monoeuvre , (see Google), I had some issues with vertigo some years ago, saw a specialist and was told I have some small rocks (calcium) in the inner ear and is age related and can develop over time, another thing I do and only started about 6 months ago is deep breathing together with body tensioning exercises, I think at the moment that seems to be the best form of help, tighten up using your own muscles, hold and release then repeat and I can do that for a lot of my body...Well, thats my 2 bobs worth, I hope it helps, good luck..

Much sympathy to you, Meg! I've had T for over ten years. I've found that salt seems to be a trigger for a more intense T. Same for taking Ibuprofen. I've found also that, when I'm having a particularly bad T day, it's a harbinger for the calm to come, and knowing that helps me hang in there til it does come. I've also found that distractions such as reading, playing my musical instruments, doing outdoor work, watching something I really like on TV, etc., are effective. Many on this forum have said it takes time, and the plasticity of the brain will help you get used to T, and I believe it does...to an extent...wish it was better than merely "an extent" but after all these years I'll take what remediation I can get! Certainly there are no drugs or other treatments that do any good, I've found, and I can tell you, I've tried many. I hope you find ways to cope over time. Cheers!

Meg , you will habituate in time quite naturally - the trick is not to have the T as the centre of your attention. Admittedly, this is quite hard at first as the T does dominate your experiences/thoughts etc, but this does ease up. For me, it was about 12 -18 months when things got easier.

Also, think about cutting back on sugar in your diet as that tends to enhance T quite a lot (at least for me anyway).

There's a fab app out there which you shoud try - Relax Melodies. You can create many kinds of sounds to help and I find it v useful at night time just as your nodding off to sleep.

Hope this helps.

Meg, a warm welcome to this forum from another empathetic person living with this bonkers head noise. I spent a year dealing with anxiety over it.....but it did get easier for me in time, and I was able to concentrate and go about my normal life. So be encouraged if it does not go away (it may do)...it does get easier to be with in time. Promise! My own key word are - acceptance, proactive relaxation, mindfulness, CBT (really good proven therapy for this condition), sound enrichment, nature, bed time stories, breathing exercises, body scans, yin yoga or yoga nidra or yoga of any kind (damn I got out of th habit a bit!). Personally I don't get too hung up on supplements now - I did to start with and just decided it fed my obsession to try and get rid of it. 🥰 Sleep it a tough one but the calmer you can be the easier you will find it to sleep, so bed time breathing and bed time relaxing sounds, stories always good for me. Virtual hugs

Hi Meg. How are you? Any better? Let us know if you want to.

Hello meglloyyd96. Sorry to hear you are suffering and you feel so alone. Have you tried the youtube videos for nighttime. You can get rain sounds, sea sounds etc and I find these sometimes help. I have bought a headband with built in speakers which is quite comfy to wear. At the minute I am looking at CDs with relaxation techniques and intend to try one of these. All I can say is keep nattering your doctor to expedite matters. You have to keep on at them to get anywhere, especially in the current climate and ENT is also one of the busiest departments unfortunately. Good luck

Hi Meg

Sorry to hear of the impact T is having on you.

I got rid of the T I had for 40 years simply by redefining what it actually was.

If interested, please see my post from a year ago which tells how I did it.

All the best!

Alps

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