I'm sorry for posting here, but I feel I need to write something to someone, someone who understands what I'm going through:
Today is my four weeks of noticing tinnitus (I know that's nothing compared to most of you).
I am unsure on what caused it, I just noticed it on a Thursday evening as I was relaxing after work, of course I thought nothing of it at the time.
It's not cleared up, and is more noticeable during quiet times (i.e. bed time).
I've had my ears checked for ear wax as that's caused me trouble in the past. Those are clear. No perforation either.
I've had a basic hearing test from Boots and that came back as within normal range, though I ack that's only a basic test.
Two weeks prior to me noticing the tinnitus, I tested positive for Covid, I tested due to having fairly bad symptoms, but I've had it much worse in the past.
It seems to be very concentrated in just one ear, though at times I think I hear it in the other (I can't tell, this condition plays with my brain).
Worrying about this and the horrific noise when trying to sleep is preventing me from sleeping, this in turn brings on anxiety, which makes everything worse. I've had two very real panic attacks just this week and I feel on the verge of a possible mental breakdown.
I'll try contacting a GP tomorrow to get this looked at, but we all know what getting an appointment can be like.
Why am I posting here? I'm not even sure, I just need to put this somewhere. I'm at a low ebb, very depressed and I see no hope. When I read about tinnitus it horrifies me to see there is no cure, am I condemned for life?
It's been four weeks, which for some of you is nothing at all. When do I face up to this being permanent?
Sorry again for this pointless rambling post. If it breaks any rules please delete it.
Thanks.
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ghlla
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Welcome to the place that not a single person here wanted to find themselves! But here we are and welcome anyway.
Gosh, what a nightmare you're going through. I'm so sorry this has happened to you. Okay let's break it down in to bite-size chunks;
Let's talk about the Tinnitus first - (from now on I'll refer to the Tinnitus as "T" okay?) so - you say you first noticed after getting Covid - a lot of people have noticed the same! and it's lingered a while, sometimes for quite some time after they have recovered. If it is a 'hangover' from your Covid infection - the various tubes and nerves from the viral infection can be affected short term - it should just dissipate naturally over the course of a few weeks - couple of months max.
In terms of noticeing it - you say bedtime - yes, absolutely, same for the rest of us - the T is always louder (more noticeable) when the rest of the World has gone quiter - so that's a shared experience there - you're far from alone. There are various ways you can cope with that at night such as playing a little gentle background "masking" sound - such as white noise, or waves, or wind, or music! - you get the idea.
One sided T is also common - so is the T seeming to oscillate and of course, both ears (both barrels!) going at once.
Sleep - it's just the most important thing - nothing is more powerful in your armoury to fight this than you getting healthy, restful sleep. Talk to your GP immediately about having something to assist with that - right now.
You need to get your hearing/ ears checked out as well so ask - and then, if you have to - DEMAND an urgent referral to ENT (Ear, nose & Throat) - that is the starting point to get more information about what might be going on. Please don't wait on my advice above that it might simply be Covid related and it will go in a few wekks - put all the resources you can in to finding out now - just in case it doesn't.
Dealing with this shit is draining and takes a lot out of us when we are already at a very low ebb. It's perfectly natural for you to be feeling anxious, afraid and depressed. Again, talk to your GP about getting some help with that. I'm afraid - when you speak to him/ her/ they - you need to lay it on a bit thick - tell them how much this is upsetting you - GP's are listening carefully to measure urgency not so much by what you are saying but by the tone of your voice, etc. Reach out and get that sense of urgency across.
And lastly, ghlla, no, you are not condemned for life - even if the T sticks around forever - you will deal with this. We have people here who have been to helll and back - and I mean hell - and they're still here, able to help others and in doing so help themselves, see that life is good, worth doing, etc. If your T goes in the next few days - or you have it for the next 50 years - you will be able to do likewise. And that's a promise.
So to recap:
GP - demand urgent referral to ENT , meds to sleep and possibly something to help you feel calmer during the day just while you ride out this horrible stage.
Nightime/ evening; play some masking sounds/ youtubes (I have Livestreams from various parts of the World of nothing special going on - just life, street scenes, animal parks, whatever - it's company and it's noise)
Don't forget - support is out there on the end of a phone.
Samaritans are just brilliant - 116 123
So is the Tinnitus UK Helpline - 0800 018 0527
Make free use of both as and when you need.
And lastly, you'll be okay - you've found this place. You're not alone with this now.
Keep us posted how it's going and for goodness sake if it DOES just suddenly bugger off then come back here and tell us that as well. We like good news stories as well as the bad.
Thank you reading my rambling and for responding with such detail. A lot of what you are saying is reassuring, and I truly thank you for that!
I guess this has just come us a complete shock to me. I'm a worrier by nature so when something like this happens I tend to focus on the worst case scenario and don't have the mental fortitude to handle it well. Hopefully I'll get better with that.
Lack of quality sleep is the biggest issue right now. I'm someone who always needs complete silence, so you can imagine what tinnitus does to me! I do like white noise so will try a fan or other device to see if it helps distract. Given I had 0 sleep last night I really should sleep, I hope!
I'll hopefully see a GP tomorrow. Pouring my heart out and laying it on thick shouldn't be an issue if I feel like I do today. I'll be honest, I've cried a few times today, which is kinda pathetic, but there it is.
Thank you again for responding. I see this as the start of what may be a lifelong journey, I won't let it beat me, I have too much good going on. But the despair in these early days is overwhelming at moments.
So, let's get that sleep better. Start there. And whether your Tinnitus journey be long or, hopefully; very, very short - getting good sleep is good whatever is going on.
Yep, lay it on thick with your GP - as you say - you're talking ernestly anyway so just tell them how it is for you - then they have to do something pro-active - like that Urgent referral to ENT - and in the mean time they'll perhaps give you something to aid sleep.
DO keep us posted how it's going. Do remember those numbers - Samaritans are good for a rant and Tinnitus UK for general info and support.
And just try to think of yourself as a member of a club - that none of us wanted to be members of - but as we are - here we are - supporting one another as best we can.
Just to update I have an ENT referral, the GP could see my anxiety quite visibly without even attempting to exaggerate. I'm clearly not in a great state of mind at the moment.
I wasn't given anything for the sleep this time around, I'll continue trying white noise and over the counter meds for the moment. I would like something to take the edge off my anxiety but the GP was hesitant, perhaps correctly.
Sadly the ENT referral isn't until February, so an interesting couple of months of trying to cope. I hope by then it's either gone or I'm at least controlling the situation better!
So, that's great about the referral - and you might find that the date is brought forward so be ready to accept a cancellation, etc.
On the subject of sleep - best over-the-counter is Phenergan - it's a anti-histimine for allergies, hayfever, etc but it is also a sleep aid and works! It also has a sedating effect - nothing harsh but it should help to take the edge off things for you.
Ask your pharmacist for it by name - and tell them it's for allergies and a friend has recommended it. Pharmacists take a low view if you tell them it's to sleep because of an unconnected problem so just be aware of that.
I also urge you to speak to your GP about taking it as well and to do due research about whether it's potentially a good fit for you. I'm not sure if you're on any other meds so you must check if you are. I know it helped me a tremendous amount in the early days. I - 25-50mg tablet taken about an hour before bedtime saw me getting really good sleep. I hope it can be of help to you too.
First all I can say is what a great post from Jimbob7, read and reread - one of the best posts I've ever read. That is one caring person, I wish 9 years ago when I first got tinnitus I had read such a great post like this, maybe things may have been different for me at the start.
When you first go from not having tinnitus to having tinnitus out of the blue it can be really tough, I remember it well. If any consultation I was probably coping worse than you.
Sleep was a disaster, if fact in my case I renamed it a "sleep condition" because what I found was as the months progressed if I slept well I would not actually hear the tinnitus in the day time as I had the energy to push it away and get on with things.
What I did not know then was the brain can actually habituate to tinnitus, it is there but the brain does not actually pick up on the sound for some people. To me I thought habituation would be impossible and I would have to live with this sound 24/7 all day every day for the rest of my life.
Well actually I didn't - I was wrong, because over time the brain can learn to filter the sound out like the noise of a fridge or clock in the background. It took a while for me for this to happen, but it happened. As I write I have not heard the tinnitus ringing sound today, now suddenly it has appeared, why - because my brain is now focusing on it. You may not be at that stage yet, but believe you can get to that stage in the future if it sticks around and it may not. If I can anyone can, believe me I believe everything is impossible and nothing is possible for me.
Nine years ago to help me sleep I played sound all through the night from various apps, the brain struggles to cope with more than one sound at a time and can't then focus on the tinnitus sound as well which made me relax. It took time and became my routine but after a while it settled, gradually I didn't need the sound over night. The sound of the tinnitus reduced.
Ghlla this may not be a lifelong journey, it is too early for you to think of it that way. Someone said to me get your sleep improved and you'll be over halfway there, I did and they were right, I was totally wrong. I did everything in terms of sleep hygiene to improve my sleep. To this day 9 years on I still track my sleep, just give it a rough number of hours to the nearest 30 mins because I've realised how important it is generally even regardless of tinnitus.
"I have too much good going on" - that's great, that will help you if you have good positive things in your life. Tinnitus is very relevant to the individual, it can depend on the type of sound, the level of the sound, how often they hear it, how often it spikes, everyone is just different.
It feels bad right now, it may not in weeks and months to come. If I could go back 9 years and write a post to myself in December 2015 when I thought my life was over I would say all of this above - it will be tough at the start but you will actually surprise yourself and get through it and even if it does stay (which it did for me), it wont be as loud, you'll get your sleep back on track eventually and you actually carry on doing all the things you love in life.
hi there, firstly no one on this site would think you ‘a bother’ and secondly the advice Jimbob has given you covers most of the bases, lastly just talking about T to people who understand what it’s like honestly helps. You are not alone. Kim x
Firstly sorry for your suffering. I and we I'm sure know what your going through. And it is horrendous, I'm currently experiencing a spike now. I have this usually twice a week. I can get it down to once a week if I chill and relax as much as possible. How the hell your supposed to do that when you're in a works situation I don't know. But I have worked for myself for 35 years as a window cleaner so I've been lucky in that respect. I've just retired and have given up my work which has helped. Sorry I've rambled a bit but the answer to the question, is get used to it now. I've had it the best part of 8 years. I've actually forgotten how long I've had it, when you've got this s*** it seems to blur into itself. Since I've had it there has been no advance at all any stage as far as I can tell. I'm quite wondering what they do with all the money for the research. But that's just my opinion probably shouldn't be said. But there is no help really. It will rely you getting used to it and start now. Unfortunately sounds like you've joined a very horrible club of people that suffer. One the biggest frustrations you will find, is that people that haven't got it, not understanding. Just when you think you got someone to understand it comes and kicks you right at the arse and you realise you're haven't got through. I wish you luck, it's a tough journey but you've got to take it, you have no choice. ♥️
Hello and welcome to this very helpful place for T sufferers. Obviously everyone would prefer that there was no need for this site but we are where we are as they say.
I’ve read through the comments and there are some fantastic replies to your post. I’m not really sure what to add apart from the obvious avoiding stress, getting rest and doing positive things where possible. Being kind to yourself in a world where that isn’t ‘installed’ into people’s upbringing. These things are tricky for sure. I like to remember the concept from my little ones when they were in primary school. Everyday is a new day, a fresh start.
I appreciate that maybe doesn’t sound helpful but it does allow me to put yesterday to one side and start again.
Apart from that I have HAs connected through my phone and a sound machine linked to the tiny speakers in my pillow to deal with the nighttime silence.
There are many hard things like others around me struggle to hold it in their heads that I’m hearing my T 24*7. That is tricky somedays.
There are many wonderful people on this site so you have done well finding such a resource so quickly. It took me years to do what you have done in 4 weeks.
Be well and ask away because people do actually understand what you are going through and the emotions and concerns you will be facing here.
I truly understand your distress and frustration with this awful tinnitus. I have suffered with pulsatile tinnitus for nearly 3 years. It is EVER present. and, like you it interferes with sleep and my whole life. My PT developed after 2 covid shots, 2 boosters and then a fairly mild covid infection. I have had virtually every test available to find the cause. None so far. I'm in the USA, so with insurance I'm more able to get to specialist doctors. I'm from the UK so that's why I found this site.
I can't offer any solution for you right now, but I wanted you to know that I have deep empathy for you.
I'd just say, don't give up, the more we make our issues know, perhaps more doctors and research facilities will recognize this is a severe and debilitating issue. So, I'm not giving up myself.
You are not condemned for life and may need to look at coping mechanisms such as mindfulness or relaxation and/or breathing exercises to help with anxiety or stress as these can exacerbate tinnitus. There are some great online support groups which I found here and booked (free) via Evenbrite.
If you can't speak to a GP it may be worth talking to a pharmacist as your Eustachian tube(s) might be blocked. Saying that I treat my tinnitus like a long term condition which needs to be managed with self care and patience - something that I do not always get right !
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