Sorry to bring gloom this morning but i feel so down just impossible to ignore t. All nights are horrible last night had about three 10 min sleeps don't understand why i wake up so quick ,when i lay in bed i try and think of something to drift off but i cant its like there's a wall there stopping me getting through i did not take a sleeping tablet last night don't want to take them every day in case i get addicted or they stop working as good, i probably get about five hours sleep with those which is enough but sleeping with out them is a terrifying experience my wife keeps saying to keep taking them because of the state i am in. The t is incredibly loud i was hoping it might have calmed down a bit, but it hasn't, i really am so close to the edge, i feel like i am living in another world looking in, i can not see any future for me, i do not want to do any thing, no energy, loosing weight fast. I know no one can help me, apart from your kind encouragement, its all down to me, just needed to write down how i felt.
tinnitus: Sorry to bring gloom this morning but... - Tinnitus UK
tinnitus
John it’s so sad to hear of your troubles. It’s really hard when you sleep badly, you feel so rough.Have you looked at One You, through the NHS website, yet? It can at least, after you’ve completed the questionnaire, give you something to think about .
HappyRosie ,Hello , what is this questionnaire your referring to thanks.
From Penny
(Rabbits)
I had written to 777john about this either earlier on this string or a post by him a couple of days ago. Google ‘One You’ and somewhere on the website there’s a questionnaire which, when completed, gives you tips on what you might do yourself to improve your health.
Oh I see , I am not using the website properly obviously. I would like to find out more things to try and help myself since the NHS is virtually non existent at times. . I seem to have Tinnitus/Meneries/hyperacusis all rolled into one and it’s getting quite scary for me.
Actually I might have said in a previous post that you could get to One You through the NHS website but it looks as if you can’t. You just have to know about it! It’s certainly worth looking at for anyone, not just us T or anxiety sufferers.
And, rabbits (love the name) you’re always giving thoughtful responses to posters, keep it up!!
Thank you Happyrosie ,Some very needy souls out there and as we are all going through the same journey it makes sense to be compassionate to one another .
777john
My friend I am exactly the very same every night chronic insomnia and bad tinnitus.I pace the house up and down the stairs slowly numerous times.Sit out the back door for fresh air.I’ve been there in the rain snow summer wrapped up or just get soaked.I’ve found it’s a lovely experience and change.I try doing different things in different places for about 10 to 30 minutes if it gets on top of me.I have the radio on right next to me very low when laying down or tv on light off.I totally understand where you are it is a desperate situation! I had CBT and was giving very helpful relaxation and coping advice through different websites.I use relaxation apps and earphones music chat nature sounds and meditation.Will be getting a pillow that adapts to a Bluetooth speaker as the headphones eventually become uncomfortable. I got a paint by numbers from Amazon and it lay for months as I felt a twat about using it.I do that with the tv or an app on with headphones.I used to just toss and turn every night same nonsense going through my mind and ears.Feeling just physically and emotionally ripped apart! I call Samaritans just for a blether too.Some lovely people there that just listen and they have my respect as I talk a load of what the bull dropped when anxious! I realised I had to change as it wasn’t going away and I was letting it get to me.It’s still not easy but I’m not scared of the night now as it’s working slowly.I have been more positive in 5 weeks on here than I have ever been! I get more concerned when at work as I slump but have things to occupy me.I have thyroid issues and got advice on here to get my blood checked for vits and minerals and change my diet.I read Michael Mosleys book on better sleep.He's right if you change your diet take probiotics you get better sleep.The majority of the receptors for serotonin and dopamine (anti-depresssants) are in our stomach.Even melatonin is connected (you can buy that from American and it’s not expensive) he talks about it in his book.Our condition makes us lack these important chemicals.It doesn’t take too long.This site is fantastic people are very helpful.I’ve spoke to people who bake at night paint at night hoover clean the windows all sorts and realised these people are showing me how to cope and I had to change.I hope I don’t sound condescending or aloof here and as if I’m telling you I’m not.I am honestly just deeply concerned at where you are and understand the despair that you are feeling as I and a host of others have been there or still slowly climbing out of it like me.John if this working class guy that’s played the fool all his life can do it slowly so can you! John deep down within you know that too my friend!
Hello jacobite33 thanks for your reply bits of it made me laugh, these last few weeks have certainly got harder cried for the first time this morning in front of my wife and son, my wife and i do go out for a walk every day for at least 1 hour it can still be hard to ignore the t. i have tried to start to draw have finished a couple of birds , but its hard to concentrate i haft to force my self to do every thing i do have a job but i have been off these last 3 weeks i work in a engineering place its very very noisy so i do not think i will be going back its catch 22 i would love to go back it would give some thing to concentrate on but the noise even with ear protectors on is loud and that's virtually all day i don't think that will be good for me now.I am waiting to see the ENT not sure what they will suggest. Any idea what sort of foods might help .I have tried different noise items to distract the t a sound generator a cool fan heater even a dehumidifiers but that was too loud that would have woken up the neighbours, the radio helps a bit but too be honest other noise can be too much but i haft to stick with some noise i am not sure if it helps or not.
You don’t feel shame when your son cries John so don’t feel shame when you cry! Even though we’re big boys now we all know there’s no shame in crying! Now that moment will bring you’s together and can be the first step in starting to heal with there understanding support and help! Family unit is a strong unit together! Glad you got back my friend I was getting concerned! Like me John it’s got to start within us.I have seen the pain and concern in my own families eyes as they don’t know how to help but they want to take the suffering away from me.Regarding the ENT specialist is not what he suggests it’s what you suggest please don’t make the mistake I made and think they know better.Look in to your condition and decide what way you approach it.Now theres loads that can be done and loads of people out there that have overcome this.I’m on thyroid uk those folks advice is invaluable for your vits minerals and diet.It’s all connected.Now I get where you are with the ear defenders/plugs at work.When there in the tinnitus sounds worse and you go in to a deeper internal thought process where your negative thoughts seem as if there louder and stronger in your head too.That’s also the depression link and then you just want left in that world as it’s easier to hide away there.Then you get anxious and agitated when you have to take them off and communicate.The Cortisol and Adrenalin kicks in flight or fight mode.Then you start keeping them in as it feels easier and that’s the wrong thing to do.A big vicious circle! You can look up notch therapy,tinnitus retraining therapy,vagus nerve stimulation.There's high success rates of reducing it to a very acceptable level but not a cure.There private around £4000.First things first get your mood and coping mechanisms diet activities in order.As if you decide to go that route they start with that first John anyhow.Find out before hand how far the NHS can help you too.We need to change our behaviour and mindset and that helps us cope!
John. I'm sorry you're suffering so much. Scrap what I've said about drugs . If you can't sleep at all without them .. It might be an idea to take them short term just until you're back on even keel. No one should have to live without sleep. The drugs will help you relax which will do you the world of good.
Thanks you my friend i think i am going to take my sleeping tablets regular at least for the next couple of weeks.
Nice work john. I think it's the way to go. I hope you feel better very soon.
I was like that 7 years ago wanted to end it first time in my life felt like that, always outgoing I had fluoxetine, from doctors easy to come off, helped me sleep. Now after 7 years don't know it's there sleep like a baby even listen to the noise then just fall asleep, not on any meds . So just hang in there. Just remember when you watch tv you can not hear it, when you are talking to someone you can not hear it when you are doing something you can not hear it ,it will get easier, slowly though Just keep going friend.
Thank you JONNSONN. That’s exactly the way to habituate in my opinion.
sorry to hear about your experiences, sounds like me after xmas. I had had tinnitus for years but from last September it just started to increase and by Xmas, it was appalling. Louder than a truck if a truck passed me on the street. I rate my tinnitus from 1 - easy to deal with, to 4 - head in hands crying. I was down and very depressed with almost no sleep. I took nytol to start with and that just kept me awake. Alcohol helped, but following day was miserable. Doctor prescribed zopiclone and that helped, but can be addictive so rationed it. I then took matters into my own hands as I discovered the ENT appointment I had booked via the NHS was at least 50weeks away. I saw a private ENT consultant via Spire hospitals. He referred me for an MRI to exclude anything horrible, the MRI was fine (cost £399). Then to an audiologist for an exam (cost £75), it turned out I had high frequency hearing loss and the maximum loss was exactly where I had my tinnitus - at 8khz. I then saw a tinnitus consultant who helped with some CBT (£150/session) and mindfulness, most important lesson there being not to be scared of it, and lastly, I had a hearing aid trial with the aids programmed to compensate for the high frequency loss. As an engineer, that was my favourite, something active I could touch. That helped. Tinnitus is still there but somehow, I’m more in control. The aids have a tinnitus program and you can stream masking noises too. When tinnitus is bad, I wind up the volume and the rest of the world is a bit louder! After the trial, I bought the same aids. And I’m now happier and living with the tinnitus which is gradually modifying itself, somehow the quality of it has changed in the presence of the aids. Brain reprogramming perhaps? I don’t know. Buying the aids was expensive but when I asked my friends ‘should I?’ They all unequivocally said yes!They said I’d been really miserable and seemed so happy since you the trial. I had noticed it but I never realised my friends did too! And that was via zoom and phone, not in person! I must have been really miserable for them to notice! Good luck. It can seem like a bottomless pit but there are ways of getting out of it. As an engineer, doing things was my best way. Amanda
Thank you Amanda.
Thanks Amanda the bit about the hearing aids sounds interesting i am partly deaf in my right always have been, but my t seems to be every where what about you how are your ears i thought earing aids only helped if you had difficulty hearing.
Hi John, I thought my hearing was fine, I pass all the online tests and I don't have any difficulty hearing but when I was tested at a local audiologist, I had high frequency loss starting about 2khz getting progressively worse so that it was "moderately severe" at 8khz. This was in both ears. 8Khz happens to be the frequency of the Tinnitus I hear, which I also hear in both ears. So the theory goes that my brain, in the absence of hearing frequencies around 8khz, is winding up the volume for those frequencies it can't hear, effectively trying to compensate This is only a theory of course, no-one really knows. It's this brain compensation that we then perceive as Tinnitus. The hearing aids have been set to cancel out my high frequency loss and, if you like, "help the brain a bit". All I can say is that since having them, the tinnitus "has changed", it's less distinct and more hissy and somehow, just easier to deal with. It's so subjective, I don't know of anyway else to put it.
Regardless of whether the aids "are helping or changing" the tinnitus, the aids themselves can also be set to "tinnitus masking" - this adds a low level hiss (white noise) to everything if you need it and that really does help take your mind off it. You can also stream music or calming noises from your phone to them which "mixes" with the ambient sound in a much more natural way than wearing headphones.
So overall, I think the very presence of the aids, for me, has changed the nature of the tinnitus and also, when I have one of those bad days (which we all get), the fact I can easily just add the calming noises or have some low level music going, and still hear everything else perfectly, really helps me.
As an added bonus and one I really didn't expect, the aids have sharpened my hearing because although I didn't think I needed them before the test, now I have them, I can hear what I'm missing. When I listen to music it sounds better now than it used to.
The aids have been a win-win for me. They've helped the Tinnitus be easier to deal with (but not eliminated) and they've improved my hearing (which I didn't know I needed!)
But everyone is different. I'd suggest getting a hearing test first and then go from there. Perhaps a trial? If you do have a trial, make sure they have a Tinnitus program that can be activated if you go down that path (mine are Phonak P90). Best of luck!!
That is very interesting thank you so much for letting me know all that.
Hi 777John. I have suffered tinnitus for nigh 70 years, it is important that your family know the truth. Don't be ashamed of crying, it's like a pressure pot building up. At some point, you have to let it out. They can then see how much of a profile and how it affects you. Don't be ashamed.Have you talked to your doctor about the situation you describe above? You need help and support Like we are here. But your doc needs to see that.
Some things to think about. Exercise in the evening, forceful, not walking. Running, rowing (machine) push yourself. Perhaps for an hour. Quiet time, about an hour before bed, music (not heavy rock), through headphones, take a bit of the edge off tinnitus. Dare I mention hoovering, without waking the family.
Finally a couple of paracetamol (I have mentioned before in a previous thread). Also maybe we all eat, see the cat eat then what does he do, fall asleep, same with the dog (And strangely enough with us). I am not proposing large meals, something light but filling. You know at supermarkets cold pasta in a tub.
I still have bad days, but believe it or not, they are less, and what do I do? Scrap the day, go back to bed. Only you know what it's like.
Paracetamol is only dangerous if you exceed the stated dose. Two in the evening, about an hour (or half-hour) before you go to bed. Try it, you have nothing to lose.
Most importantly, we're with you, so is your doc, AND your family.
Hi John, I have found your post very interesting, I am exactly where you are with tinnitus and can relate to everything you have said, I found that I have had to force the medical profession to listen and have still been met with the no cure response , although I am hopeful that I will find the cause myself, I was honestly considering suicide, but I am not going to be beaten by a bloody noise, I would love to know more about your situation, as I believe we are on the same journey and I would like to keep you updated on my progress in the hope of discovering the cause of your tinnitus along the way. Alan
I struggled with being unable to sleep at night. Not as bad as you described though, but still very frustrating and tiring. It was mostly to do with stress in life and tinnitus (both got bad last year, and I was slipping into a complete mental breakdown). To counter this I started exercising and took up meditation. Getting started was the hardest part but glad I did. I also gave up alcohol for a long time and now only have a little on weekends. Still have stress in my life (unemployed with money running out and a mortgage and family to support) but for some reason it does not seem as bad, and I sleep like a baby with confidence things will work out somehow (or at least recognition that not sleeping will not help things). This good sleep in turn helps my outlook on life. Also I am proud of having lost most of my beer belly fat and gained definition in my arms, chest and shoulders. Tinnitus still there 24 hours a day and sometimes I get very stressed about it, but for last 5 months I have been coping, and I am a better person overall. The exercise, meditation and giving up alcohol was my decision to take back control. Sharing my experience only because it is working for me and might be helpful to you or others.
For meditation I recommend Calm app. There is a really good series to introduce meditation that is only 10 mins a day.
Lots of good fitness programs for free on You Tube that can be done at home during lock down. My favourite is Funk Roberts who is a metabolic trainer. His videos feel like he is in the room with me as my personal trainer doing the exercises together. 30 mins several times a week is all that is needed to make a difference.
Beat wishes to you.
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