Hi guys I’m writing this in need of a bit of guidance and advice.
When my tinnitus first started due to loud music and machine use at work (gardening) it was absolutely horrendous. The volume was incredible, left ear buzzing, unable to think or read and when people spoke to me it was hard to even hear what they were saying. I tried everything, acupuncture, supplements, hypnotherapy, diet changes and nothing worked. This went on for months and months.
The main problem was sleep as I was getting about 2 hours a night, every time I laid down to relax I experienced terrible anxiety which made me sit bolt upright in bed. The tinnitus was so loud it was impossible to sleep. I continued to work but without using any machinery, I had to reduce my hours as I simply couldn’t work on such little sleep and was losing my mind.
In my desperation I purchased diazepam after my doctor prescribed me 5mg for 7 days and it ran out, I started taking 20mg to get 3 or 4 hours sleep instead of 1 or 2 hours.
Suicidal thoughts and urges became so strong my doctor told me to discontinue as I was a cannabis user as well and he told me the diazepam combined was causing these urges.
Now after stopping the diazepam and cannabis completely my GP has prescribed me Mirtazapine 30mg antidepressant every night and Zopiclone 7.5mg to help me sleep. After going 5 months running on 2 hours sleep a night I’m finally getting 6 or 7 hours but always broken sleep and have been experiencing terrible nightmares since starting the Zopiclone.
The tinnitus has drastically reduced since starting the sleeping pills (Zopiclone) and I use the Sound Oasis sound therapy device when I sleep, so I think it is training my brain as I sleep to ignore or dull the tinnitus.
I’ve experienced all manner of things with my hearing recently; both ears popping and crackling, hearing changing when I swallow like becoming clearer, slight pain in both ears, both ears feeling warm, also the ‘dog whistle’ tinnitus in both ears lasting not long but completely different from the low frequency buzz of my tinnitus in left ear on first onset.
I’m incredibly anxious all the time, I don’t want to be on antidepressants and sleeping pills for the rest of my life as I feel like I’m not myself; I don’t feel like ‘the old me’ even though my tinnitus has got better since getting sleep. I’ve accepted the condition and stopped beating myself up so much for listening to music so loud but I’ve changed so much it’s putting a massive strain on my relationship with my girlfriend.
Does anyone think it’s a good idea to start tapering the Zopiclone and antidepressants down so I can come off them completely? My GP said he will start prescribing lesser amounts so I will eventually come off them but when I have vivid, violent nightmares every night and during the day I’m feeling irritable, drowsy and not myself I really want to stop this medication. I’m also scared to go back to the days of literally no sleep and trying to hold down a job and keep my girlfriend too!
I just feel so lost as to what to do...
Ross
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Ross81
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Hello Ross. Firstly, I'm so sorry you are anxious and depressed - and having the Big T just makes it all the worse.What I am going to do here is to rephrase what you have written, but from a different angle. You may not like what I am going to say and if I upset you then I apologise in advance.
I have a great job gardening - it's outdoors and I can smell the fresh air and hear the birds. Trouble is, the tinnitus is so loud that it clouds my perception of the birds and the voices of people who talk to me. But I've now got some noise-reduction headphones and that helps with the loud machinery.
The loudness of the T affects my sleep. As I get older, however, I have read that a lot of people need less sleep as they put on the years. Indeed, three hundred years ago we learn from diarists that people usually had two sleeps, sometimes called big sleep and little sleep, and they used the wake time in between to have a snack, read a book by candlelight, make love etc. The trouble is, I haven't tried that as I've been concentrating on the non-sleep instead of what I CAN do with the awake time.
I used to self-medicate with a substance whose strength cannot be really known (cannabis) but I've stopped that now. My doctor has prescribed something else that certainly helps, and I also use sound therapy, and that helps too.
I used to listen to music very loudly but realise it was damaging me so I stopped.
I have a relationship with my girlfriend and instead of valuing what I DO have with her, I haven't been very nice to her.
My doctor is experienced in getting people gradually off their medication and I am going to follow his advice. I don't like being on medication and would like to be the "old me" but that might not be possible so I am learning to like the "new me".
I realise that I probably have T for life, but it is a common condition and people manage to habituate their brains to it eventually, though I realise this takes time.
I am also going to look at all the wonderful things I do have - like a job! many people are losing their jobs through Covid. and I have a relationship that I value and I am really going to concentrate on this relationship to make it work. I might look into Cognitive Behaviour Therapy and Mindfulness - I will google those to see what comes up.
Being tired because of poor sleep patterns is hard but I am healthy otherwise. I have friends and family who love me and appreciate me for what I am, not what I am not.
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So, Ross, again I apologise if what I have said is not correct or if you find it unhelpful. Remember that song "Always look on the bright side of life"?
Hi Rosie thanks for the interesting reply but I’m really looking for advice re the prescription medication the GP has given me (Zopiclone and Mirtazapine) as the side effects are having a negative impact on my life and I don’t feel like I should be continuing with them.
Saying I haven’t been nice to my girlfriend was a cruel, unhelpful and flat out untrue thing to say. I don’t know how you inferred that from my post.
As I stated my tinnitus has improved about 90% since getting regular sleep and is not really the issue I’m dealing with/asking for advice about.
It sounds like you are making the right decision considering moving away from the medication. Well done! However, Antidepressants, et al, are often useful. Though I can't say they did me any good. In fact, I wasn't myself either - but maybe that was just me and my circumstances at the time before tinnitus. I had PTSD from childhood trauma. Though it's difficult to say what i would have done otherwise; either way experiencing flashbacks was always going to be a shitty time. This experience is maybe why I've found myself quite resiliant to tinnitus. IMHO in the long term, you have to have your own strategies. I made the conscious decision to come off AD and sleeping pills. Has your doctor discussed longer term treatments such as CBT? If not, maybe it's definately time go speak to them. Maybe request an extended appointment.
DO NOT stop taking antidepressant medication, other than as advised on the leaflet or by a medical professional.
Regarding Happyrosie's post, I think I see her point. The best thing for me in the early days was being told, "there's no cure for tinnitus; learn to live with it." I think the point that @happyrosie was trying to get across (albeit it blunt and not what you wanted to hear way) is that you have to appreciate what you've got.
Hi Dave thank you for your positive reply. I’ve read a lot of your lengthy posts on this forum and found them informative and educational, always a good read!
I have discussed tapering down the medication with my GP as I understand just stopping cold turkey (especially Zopiclone) can be dangerous, seizures etc, so really wanted advice or guidance from others who have experienced similar situations with these medications (Mirtazapine and Zopiclone).
I’ve only been taking the meds for about 3 weeks and since my sleep has gone from 2 hours a night to 6 or 7 hours I think my brain has really been fixing itself regarding the tinnitus. It has improved so much day to day whilst I’ve been sleeping and using my sound therapy box I feel now is the time to stop the prescribed meds and get back to my life free from pills and the side effects that come with them; the nightmares, the headachey feeling on waking and the general feeling of detachment ever since starting them.
Is it too soon, I don’t know but I really don’t want a life defined by medication and my tinnitus has improved so much recently I think I can deal with what’s left ( the odd rumble like thunder no way as invasive as the loud buzzing I was experiencing when I first developed the T).
And yes I understand Rosies reply and how my story was trying to be changed to be positive, but I reiterate; my words were changed beyond the actual truth to the point of being hurtful. Also focussed way too much on tinnitus which has reduced from living hell every day to barely registered, the improvement since getting regular sleep is amazing and something I’m very very thankful for!
Thanks again for sharing your experience with AD and sleep pills. My GP hasn’t been all that helpful to begin with (which is why I was forced to buy diazepam myself after literally months of sleeping 2 hours a night). The brain simply cannot repair itself on such little sleep and it’s a little trite to suggest “as we get older we need less sleep”. Sleep deprivation is used as torture and as someone who has a very physical job I need sleep to be able to perform 100%, not walk around like night of the living dead😂
I’m sorry I misinterpreted two things you said and I did apologise in advance. Daverussell is always helpful and like me is advocating CBT. I do wish you well.
If I felt the need to apologise for what I was about to say,, I don’t think I’d say it knowing in advance it’s most likely wrong or hurtful, especially with sensitive medical issues.
No worries anyhow and I do appreciate the positive spin you tried to put on my life, it’s just not the advice I was asking for. Maybe I should have cut out the backstory and just asked about the meds 🙄
Sorry to hear what your going through people on here will try to help you . What you have wrote sounds just like me except for the cannabis.I have it in both ears 24/7 since before 2008.in on the same meds as you if for some reason I do not take on of the meds it’s pointless going to bed sometimes I go with out sleep for days.I now have a intrusive voice in my head that makes the tinnitus worse evey morning I wake up and curse that I’m still alive.but we all have to be strong a hope just like they seem to have found a cure for covid then perhaps they will find a cure for tinnitus,I know it’s hard but be strong don’t let it ruin your life,have you tried sleepytime infusion tea bags some body talked about them on here you can get them on Amazon when my tinnitus is low they seem to work.my sister uses them and they work for her.Stay safe
Hi Ross, I've been following your posts since you started with T. Mines a similar story to yours , years of loud heavy music using headphones, I fly paramotors as well and didn't have very good ear protection. I stopped blaming myself for this and slowly accepting the fact i have this now for life, although that's debatable as there is some very good research going on and multiple 'cures' or threauptics being developed. Getting back to your initial questions, I think you have taken matters into your own hands and gotten on top of the sleep so you can function and let your T settle down. Absolutely start getting off the Zop slowly as per your doctors instructions, but give the Mirt a chance perhaps. It works as a sedative on the lower doses 7.5 anyway so rarely when i struggle with sleep I take a mirt 7.5. Pretty wild dreams indeed and a bit dozy n the morning but its ok. Of course discuss all this with your Doctor.
whatever you do, your doing well and learning to cope and make your way in life. The brain is a funny thing indeed, I'm coming out the other end of having covid and at the peak of illness my T was the loudest I have ever experienced, and I couldn't have cared less, I was more worried about getting better and the T didn't bother me at all. That was a revelation as for the last 6 months I've been judging it every day on how loud it was. My brain just pushed it to the back and worried about something else!
Hi paramotor, thank you so much for taking the time to read my posts and give me your advice.
It’s hard to write everything that has happened to me the last 5 months as so much has happened, I’ve had to leave a lot out. My original post outlined mostly the medication I’ve been using and how it’s affected my life.
When I had my ENT visit and official diagnosis the audiologist said it was great to use the sound therapy box when I sleep as it retrains the brain and gives it something to listen to so it will eventually ignore the tinnitus. My main problem was going months and months with no sleep or sleeping for 2 hours per night, sometimes I’d sleep for 40 minutes and then wake up not knowing how long I’d slept for! My memory and concentration were deteriorating so much I lost a hell of a lot of weight, looked like absolute crap. I was so desperate for sleep so I could actually use the sound therapy and train my brain, but the doc wouldn’t give me sleeping tablets so I was stuck in this cycle of needing sleep to use the box but my brain just wouldn’t give me sleep. I had to have medication.
I told everybody, my boss, my gf, my family, if I could get sleep and use the sound therapy box if only for 5/6/7 hours my brain would start to fix itself and rid itself of tinnitus...
After a couple of weeks now of getting more than 2 hours sleep and using the sound box my tinnitus has improved to barely being there. Funny that!
The problem is it’s medicated sleep (zopiclone), I’d love to get back to just being able to drop off naturally without the need for pills now my tinnitus is barely there.
The doc did start me on Mirtazapine 7.5mg then 15mg, now he’s pushed it up to 30mg and I feel it’s done it’s job I don’t want to be on them for a long time and have the side effects or be dependent on them. He says I’m jumping 8 or 9 steps ahead all the time but I was right about if I got enough sleep to use the sound therapy my tinnitus would improve; I think I’m right about stopping all these pills he’s got me on.
I’m seeing him this Friday so will discuss things with him then and hopefully see a way through this. I’ve noted what you said about a lower dose (7.5mg) and will suggest this to him (thank you so much for the tip!)
Also maybe you try the sound therapy when you sleep and see if it works for you?! Since using it my tinnitus is barely there and I’d love the thought of it working for you too (seeing as we both got it through loud noise exposure).
Paramotor, I’m sorry you got Covid BUT what you say about the T going to the back of the queue is, frankly, inspirational.
Hello, reading this it sounds like what ive been experiencing. I too was prescribed zoplicone but found them awful gave me nightmares really vivid horrible ones. I stopped. I too am on the mirtazapine. Started around 5 weeks ago. On 15mg they make u sleepy i tried going up to 30 but felt agitated on them and so dropped down to 15 again i take around bedtime. I take 5 mg diaz whitch helps but like u cant stay on forever because doc dont prescribe any more. I find these help tho. Why dont you try dropping down to 15mg again at bedtime to see if that helps relax you a bit.
I completely get how you feel its exhausting i no..have you tried a air purifier machine to sleep ive had one for years and it gives me something to concentrate on to sleep. Also try having a glass of wine in evening it might help chill you out a bit.
Also dont just come off the antidepressants all at once. Drop down to 15mg..then give it a week and half them down to 7.5mg..then u still get sedation affect..then taper off slowly id try doing 7.5 every other night..see how u feel...x
Hi lolla thank you for your reply and advice it’s great to have guidance from someone taking the same meds and experiencing everything that comes with it!
I am seeing the doc on Friday so will discuss dropping the Mirtazapine down and tapering correctly. ( I did mention this to him on last visit a fortnight ago and he said we will taper these drugs eventually, I just think he’s either being slow or I’m impatient lol).
I have had great success with reducing my tinnitus whilst using the oasis sound therapy box and also a cheaper box both bought from Amazon, I alternate between the two. My tinnitus is very low frequency so I found the low rumble of the sound of waves broke up the constant low buzz I was experiencing and now it’s decreased some 90% it’s amazing!
As for wine I thought alcohol affected tinnitus adversely?! I’ve been teetotal since this all began (not much of a drinker anyway) and after smoking cannabis for the past 20 odd years (on and off) I knocked that on the head too as it was reacting with the diazepam I was using and making me suicidal (the urges were incredibly strong and not what I wanted to do!). I don’t even have caffeine anymore as I heard that can affect tinnitus too...
Hiya, im so glad ur tinitus has got better..im kinda at the beginning still so its good to hear of yours getting better. Can i ask you..did you find you t got more manageable when you went up to the 30mg of mirtazapine? Im realuctant to go up again but really need to get a handle on my t..im still using diazies at night...which im trying to taper really slowly. I think ur docs right tho slowly is the way so you dont get any nasty withdrawals. I wish u lots of good wishes and let me know how you get on..x
Hi lolla I’ll try and be as clear as I can in my answer because there have been many twists and turns with my experience of all this and it’s very hard to write it in a concise way.
When my T first started it was incredibly loud, felt like my whole head was vibrating on the left side. The sound of the T wouldn’t let me sleep as the volume was very high. I did try the sound therapy boxes and had Gregorian chanting I found on YouTube playing on my phone on a chair next to the bed, all to distract myself but I found this did not work. It’s like my brain just would not shut off to sleep more than an hour at most.
I posted here months ago (included a photo too) of a waterfall for £40 I found on amazon. The buzzing of the water pump was pretty much the same frequency as my tinnitus, a very low buzzing (the audiologist even said my frequency was one of the lowest she’d seen). I found the waterfall would totally mask my tinnitus. I could have the waterfall switched on and walk around the bedroom as if I had no tinnitus at all. As soon as the waterfall was switched off, bam the tinnitus would flood right back into my head like you flicked a switch!
Now most tinnitus forums/audiologists will tell you “DO NOT totally mask your tinnitus. Use whatever sound SLIGHTLY BELOW the sound of your tinnitus so the T isn’t competing with the sound”.
My reasoning behind fully masking the tinnitus was I tried to give my brain something else to listen to, so much that the T wouldn’t have a chance to get a foothold. Like I didn’t want my brain to become used to creating the tinnitus if that makes sense?!?
Every opportunity I would have some sort of noise around me, radio, tv, anything; I work outside so the ‘sound’ of being outside would help too (the wind, birds, traffic etc).
Whilst totally masking the T at night I found I still could not sleep, that’s why in desperation I bought Diazepam and was taking 20mg a night plus cannabis. I found I did get 3 or 4 hours broken sleep, I’d sleep in 1 hour blocks, but this was not adequate and the side effects were horrible; suicidal urges, mind deterioration etc.
Finally after stopping diazepam, cannabis and caffeine my GP gave me Mirtazapine 7.5mg. This did have a sedative effect, I did sleep for 3-5 hours but it still wasn’t enough (I’m used to a good 8hours and love my sleep).
After a couple of weeks he’s given me zopiclone and ever since sleeping 6 or even 7 hours taking both Mirt and Zopi plus using the sound therapy box I found my tinnitus has been getting better day by day. When I say “better” it’s almost completely gone!
I didn’t notice a decrease in T whilst using diazepam or increase in Mirt, only since getting 6hours+ whilst using the Mirtazapine and zopiclone and using the sound therapy box whilst I slept for a decent amount. I have the sound therapy playing at the lowest volume possible (my gf has to listen to it too lol she’s sweet she says she just tunes it out because she knows it’s helping me). On waking sometimes I don’t even hear the sound box for a few seconds until my brain wakes up into full consciousness; the sound therapy works on a subconscious level whilst you sleep, at least that’s how I understand it.
I figured because I’m only a few months into living with tinnitus and not trying to train my brain after years of living with T, there’s a good chance my brain will ‘listen’ to the real sound of the sound box rather than ‘creating’ the tinnitus sound; tinnitus is a phantom noise created by the brain.
I hope I’ve explained my experience in an understandable way, it’s hard to write it as I’m still not understanding it all myself only doing what seems to be working. Any further Q’s I’ll be happy to answer; let’s beat this thing together!
Tinnitus is life changing and i know when i first realised it was here to stay I found it extremely depressing.
I do not feel deaf or hard of hearing but I have had hearing aids fitted (NHS) they have reduced the noise in my head - they have a tinnitus clinic - (I apparently have high frequency damage to my hearing- who knew!)
The hearing aids are clever, i can also have white noise through the hearing aids on bad days - however, I cannot sleep in them. These are my biggest help, took me a while to adjust to them but they are fine now.
At bedtime I have a white noise machine and there is a particular water noise that helps, without it I cannot sleep - my brain now associates it with sleep. I have it on a timer for an hour but reset if I have trouble sleeping or wake again in the night.
Zopiclone - mmmmm I was on this and initially thought it was the magic medicine, but I found for me ... (we are all different) it gave me awful nightmares and also increased my anxiety - I was also very dozy the following day. So I came off those. Sometimes it is prescribed to be taken just 2 or 3 times a week and some research says if should be used short term because it becomes less effective.
My son was on the antidepressants you mention, and they helped him through a really stressful time - calmed him down - he is completely off them now.
I would suggest you do not stop both tablets at once and take your GP's advice on reduction. Explain how you feel - but you do need some degree of sleep.
You will get through this but you need to be kind to yourself ...... speak to your GP and your girlfriend and explain how you are struggling.
Probably you will think I am crazy, but being aware of your breath, slowing it down and keeping your awareness on it will help sleep come and even doing guided short meditations will distract you.
Try and look at this as a time to find a new way of living - I have no idea if your tinnitus is permanent - mine looks to be and I have had it probably for about 3 years now.
Its manageable, I try and distract myself and also just accept it ...... there is no other choice so its finding a way you can learn to live with it ... it does get easier - I always tell myself it could be so much worse.
I miss silence - I could never sleep without silence, the slightest noise and I would be awake. Now I have no choice and my best friends are my white noise machine and bedroom fan - not sure if that helps at all - but remember you aren't alone.
Hi Lesley Thank you a million times over for sharing your experiences, reading what you had to say has helped guide me into my next steps forward.
I too have to sleep with the sound of waves (my tinnitus was a low buzz/hum/rumble) so I found the sound of waves crashing worked best to break up the constant tone I was experiencing and now it’s so much better!
I would love to have a house by the Sea haha would be great!
I loved your tip about focusing on my breathing just before sleep. I try to breath with the sound of the waves and try heavy, deep breathing and clearing my mind, a great tip!👍
You are also right about the Zopiclone nightmares. I have in the last 7 days dreamed my girlfriend was drowning, my parents were trying to kill me and my house was under some sort of bombardment! That’s why I want to somehow get off the damn things but they have been so helpful in getting me 6 or 7 hours sleep rather than one or two.
I’m glad your son is off the AD’s and I hope sometime soon I will be able to stop them too. I think they’ve done their job in calming me down and making me feel a bit better, I just don’t want to take them too much longer as I’m worried about depending on them or more side effects.
I’m seeing the doc in a couple of days so hopefully together we’ll figure it out. God knows I’ve tried every trick in the book, probably too much as my girlfriend keeps telling me 😂
Thanks again for your positive reply and guidance. It’s nice knowing I’m not alone.
Pleased some of it helped, you will be you again, take time and reduce AD's slowly - but you need to get rid of the nightmares, they completely debilitate you and its then not restorative sleep.Best wishes
Hi ross, hope you are doing ok..? Hows the tapering with the mirtazapine going for you
Hi lolla sorry for the late reply, thank you for asking after me!
I saw the doctor 27th November and said I was feeling better, the tinnitus is still hardly there just the odd sound now and then. He wanted to up the mirtazapine to 40mg from 30! He said he wanted me to keep improving and was worried about me going downhill again.
I told him I didn’t want to take the Zopiclone or the Mirtazapine any longer and I reduced the Zopiclone from 7.5mg to 5.68mg from last Monday. Tomorrow (Monday) I will halve it to 3.75mg. I still managed to sleep, get up and go to work last week so I’m going to keep reducing it over Christmas as I have a fortnight off so hopefully can manage any sleepless nights!
I’m continuing to take Mirtazapine at 30mg every night but will be reducing that possibly when I’m at the lowest dose of Zopiclone or stopped it completely. My anxiety is a lot better, my hearing is quite sensitive but I read that could be a side effect of the zopiclone so I’m hoping it’ll return to normal!
Guess I just have to wait and see; I’m looking forward to stopping taking the medication completely as I feel much more myself lately but time will tell, just taking it day by day!
How’s things with you? Are you still taking diazepam? Have you tried using sound therapy whilst you sleep?
Ross
X
Hi ross, ah good news really good to hear you are doing well.Im still on the diaz yea 7 weeks and coming off now.
How long did you take it for out of interest?
Im doin ok. Still have bad nights good nights. But taking day to day. Its hardest thing ive dealt with.
Hey lolla, well I’m glad you have good nights mixed with the bad, that’s at least something to hold onto! Keep going and stay positive!!
I took diazepam for 6 weeks pretty much every night at 20mg. The problem was I was smoking cannabis too and both together made me have incredibly strong suicidal urges! My GP explained this to me and I stopped both immediately, I only got the diazepam from a friend because the doc wouldn’t give me anything to help me sleep.
After smoking weed on and off for 20 odd years I cut it out of my life completely, I figured I want to be healthy more than anything so it wasn’t a hard decision.
The diazepam I did reduce by half over a couple of days then stopped cold turkey. There were side effects to stopping it namely; trembling hands, tingly fingers and toes, breathlessness, and cold sweats but this stopped after around 10 days. I recommend coming off it slowly by reducing your amount a bit at a time.
Taking the diazepam did help at the time but it also made me realise that any form of medication has side effects. It made me want to stop the medication I’m on now (zopiclone and mirtazapine) and live a life free from drugs, whatever that may bring.
Maybe talk with your GP about starting Mirtazapine (anti depressant). It does have a sedative effect and brought my mood up from down in the dumps to feeling more like myself. My first 4 days on it I did drop off to sleep quite easily, my limbs felt heavy, my eyes closed so it may be an option for you to help with sleep?!
Also please if you DO manage to sleep, try some sort of sound therapy to listen to whilst you sleep to try and help with the tinnitus. My audiologist said it’s good to give your brain something to listen to and ever since using it my tinnitus has improved a lot!! Also keep busy. If you find your tinnitus is driving you crackers try and listen to the radio or watch tv or being outside really helps. Give yourself something to listen to apart from the T and really focus on it, try and train your brain to not listen to the T. It’s hard but you can do it!
Also look at your diet. Eat greens and fruit, quit caffeine! I quit caffeine 6 months ago, never looked back! I eat a lot of spinach and garlic (spinach is a great source of natural zinc, kale is also great for hearing). Oily fish too.
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