Sleep problems, tinnitus and Mirtazapine

[DiegoDiegales]

I have been struggling to sleep in the last few months. I tried everything (sleeping tablets, antihistamines etc..) everything stopped working after a while and I am looking for a long term solution. The only things that I feel has some long term benefit is Mirtazapine. I tried in the past for a week and I stopped because it made my right ear (the good one) worse after a week. But now I face a dilemma: either to not sleep and thus makes my tinnitus gradually works or taking Mirtazapine and have a worse tinnitus but being able to sleep and function. Has anyone been in a similar situation?

[doglover1973]

Hi DD. I don't know if meds are the long term solution. That's the problem. They help in the short term but can make T worse - as you say. There's a good book - Living with Tinnitus & Hyperacusis - with a whole chapter on how to get back on track with sleep. I found it very useful in the early stages of troublesome T when I could hardly sleep at all. To be honest there are no easy answers . It's trial & error really.

[DiegoDiegales in reply to doglover1973]

Thanks doglover for your kind reply. How did you manage yourself when you could not sleep? I will have a look at that book but could you summaries the main ideas of what to do? I assume that meditation, exercise, sound therapy are key steps which I do. I am a CBT therapist myself so I got some techniques to manage my anxiety but I can sleep and not sleeping also make my tinnitus worse.

[doglover1973 in reply to DiegoDiegales]

Hi DD. You have my every sympathy . It's not easy to cope with lack of sleep - and the increase in T due to lack of sleep - as you say. It's a vicious circle. The advice in the book is very similar to that of @surreycccfan so if you follow his advice you'll be well on your way . Hopefully. I would just add. Hang in there. Things usually improve with time.

[Happyrosie]

What doglover says, I concur with.Additionally, have you read the website of the British tinnitus Association.? Lots of information and help there.

Do you live in the UK ? If so I can point you towards some guidance given to doctors.

[DiegoDiegales]

Hi Happyrosie, Yes I live in London, I would love to get some guidance many thanks. I read the BTA website and it is useful but still struggling, I am doing mindfulness, exercise, sound therapy.. but still cant sleep

[surreycccfan]

Hi, sorry to hear you are struggling, can I ask what is stopping you sleeping e.g. focusing on your T, being anxious, etc.?

I can totally empathise as I just couldn't sleep for months when I first had T. I can now say I can sleep well and in fact I am managing my T so well I am back to sleeping with ear plugs so the only sound I can hear is my T (I am at point in my management journey that my T no longer invokes a flight/flight emotional reaction, I habituate and can live well with my T).

Below is what I did when I struggled to sleep when I first had my T.

• I used a sound generator app (I used ReSound Relief but plenty of others out there). I mixed sounds that (1) I found pleasant and (2) mapped well to my T. Audiologists tell us to map the volume of the sound to just below the volume of your T. As time went on and I felt more 'positive' towards my T I slowly reduced volume until I no longer needed the sound generator

• I tried to use positive reinforcement in relation to the sound from the generator app. The sound I had chosen was beach, waves, and rain, when I would go to sleep, I would listen to the sound and think of lovely holidays I have had walking on the beach. As T creates such a negative emotional reaction, these types of thoughts allowed me to calm down and think about something other than my T

• When I was lying in bed if I felt stressed and my mind was focused on my T I would follow a mindfulness body scan. I found this very calming and did take my mind off my T

• I used BTA support group to help me learn more about T and techniques to move towards living well with T. As I learnt more and managed to reduce the negative emotional reaction to my T I would even say 'hello' to my T when I first settled down to sleep. The reason I did this is I found when I was stressed by my T it was always at the forefront of my mind so I found that if I said hello to it then (1) I had acknowledged it and my mind could move on to something else (2) by saying hello I was reducing my fight/flight reaction to it and this helped me to 'normalise' it for me.

• I tried to follow a good sleep hygiene pattern (maintain a regular sleep routine, avoid daytime naps, don't watch TV or use the computer in bed, no caffeine after 18:00 and as I am a clock watcher I put the alarm clock out of sight so I wasn’t constantly looking at it.

It took me quite a while to get into a better sleep pattern but as I said I can now sleep with my new sound of silence. The BTA has some excellent resources on sleep tinnitus.org.uk/tinnitus-an... and has good links to products such as sound pillows, headbands, etc. In the above link the vicious cycle graphic really highlights how the fight/flight reaction to our T inhibits our sleep. I found by practicing other distraction and behavioural techniques in the day I slowly shifted how I thought about my T (I saw it as less of a threat which took its power away) and in combination with the things I did at night I slowly got back to normal sleep patterns.

I hope the above may help in some small wall. Take care

[rabbits65 in reply to surreycccfan]

Absolutely brilliant “post”. surreycccfan . All you’ve explained will be a great help to me . My tinnitus is very electrical in my head like a fan oven noise . Even though I’ve moved some way to habituation I still have a long way to go as there is this very scary feeling that my head might explode !!!

[doglover1973 in reply to surreycccfan]

You've adapted really well . Can I ask - How long have you had T? And how long did it take you to habituate? I seem to be treading water at stage 2. I like the idea of saying hello to your T. That makes it seem more like a friend then an enemy 🙂

[surreycccfan in reply to doglover1973]

Hi Hi, my T started in Feb 2019. Regarding habituation, I must be honest I don't really use this term... I prefer to use normalisation; I will try and explain why.

It took me about a year to realise I was in constant fight/flight mode and my T was the first thing I thought of when I woke up (when I did sleep) and the main thing I thought about all day and this was causing so much stress and anxiety. Based on what I was learning at BTA support groups I realised if ‘I wanted to manage my T rather than it managing me’ I HAD to accept it. I would say it took another 4-6 months of using distraction and behavioural techniques every day to get to this normalisation stage.

For me habituation is when I am so engrossed in something, I cannot hear my T which happens a fair bit these days BUT the reason I prefer to use normalisation is because I think it’s a more realistic description of living everyday with my T . What I mean by this is I can be doing something, and I can hear my T and I do not have a negative emotional reaction to it (fight/flight), for example I am typing this to you, and I am sitting in silence and I am OK as my T is just part of my normal life.

I think a lot of people search for habituation, a cure, etc. for me I accepted I had T and it was OK. You may have seen me post before, I realised after a year ‘I have T, there is no cure, its probably not going away and THAT’S OK’. This was the fist step on accepting my T, not everyone can accept but for me when I realised it was OK, I started to take the power away from my T and it just become another bodily function. I think mourning your old life before T, wishing it would go away, etc. hold us back from accepting it. I hear a lot of folks talk about they miss silence, I reframed this as this is my ‘new silence’ and I can now happily sit in silence hearing my T and do not have a negative emotional reaction, for me this is the power of acceptance.

Regarding saying hello to it, this was something I did to take the power away from it. By ‘normalising’ i.e., taking away its power as something that created a fight/flight reaction it helped me move forward in acceptance. Saying hello to it made it something that was less scary/hurtful to me plus it allowed my mind to move on to something else. This may not work for everyone but really worked for me.

I hope this helps and happy to answer any other questions. All the best John

[doglover1973 in reply to surreycccfan]

Thanks so much John. That's very helpful - in particular your description of 'normalisation' . It seems more achievable than habituation at this point in time. I'm no longer in crisis mode but I still see pre July 2020 as normal and post July 2020 as abnormal. So I need to redefine and accept life with T as the new normal. This morning I said hello to my T and my mind moved on to thoughts about the day - just as you describe. Thank you again. Btw I'm a somcccfan 🙂

[surreycccfan in reply to doglover1973]

Glad it helped, for me it was just reframing unhelpful thoughts and my mind and body being ready for acceptance. Always remember to be kind to yourself and don't beat yourself up (or compare yourself to others on their T journey) if you haven't reached acceptance, normalisation, etc. We are all at different points on our T journey and when your mind and body is ready to move forward, it will. As long as you are practicing positive behaviors, you will continue to move forward on managing your T.

I am glad the 'hello' practice worked for you, as I said I did lots of little things like this to help me 'normalise' my T and take its power away. Its amazing how little things done regularly can reframe from negative to neutral/positive. The outgoing BTA president often talks about brain plasticity, over time as we practice distraction techniques and behavioral techniques to manage our T our brains slowly adjust take them on board and allow us to live well with our T. The opposite is true, the more subjective we are and allowing unhelpful thoughts fuel the fight/flight response the harder it is to manage our T.

In regards to how you label pre and post July. I totally agree, I would reframe as the new normal, for me labelling with a word like abnormal it perpetuates a negative connotation. Don't get me wrong I don't want to have T but I do and ITS now OK. For me its all about taking its power away. I really focused on my mantra/goal that I had seen others achieve 'I want to be able to manage my T rather than it managing me' this really helped me focus on when I was having unhelpful thoughts/labeling. It can be hard and requires energy and discipline to keep up these practices but with repetition the brain plasticity does kick in

Oooh I love going to Taunton, although still getting used to the new sponsors name of the ground

[doglover1973 in reply to surreycccfan]

That's very encouraging. Thank you. I think I've focused too much on the bigger picture and not enough on the smaller steps. I'm going to go back to the drawing board. It's good to know that our brains are on our side - as it were.

Haha. The new name is a mouthful. Everyone down here still calls it the County Ground and a very picturesque ground it is but my dad - born & bred in south London - loves the Oval! 🙂

[DiegoDiegales]

Thanks surreycccfan for your kind post and taking the time. I dont know where the blockage is. I was doing well until I used 'Lenire' which increased my T and I feel that there is a part of my brain hiperactivated. I dont think of my T or any other negative thoughts during the night and focussed on relaxing things and I am able to relax at night, perhaps that only negative thought that is around is: "if I dont sleep my T get worse and then fall into a cycle of not coping' Well I found out that after not sleeping for 3 days my T gets worse so I am trying to use meds that work just temporally. I am scared of spending days without sleeping and get a very severe T, but maybe it is not true.

[surreycccfan in reply to DiegoDiegales]

I can empathise, as went through similar thing. As we know the more we are anxious and/or focus on our T then the more anxious we become and get into a vicious cycle (a good graphic of it here tinnitus.org.uk/tinnitus-an... .

When I had similar thoughts about not being able to sleep I would use the APPLE model, to reframe. Pause, step back, reflect on my thought pattern (and see it was unhelpful), I would then reframe (I would say something like 'OK, I have T and not going away and by worrying and focusing on what may or may not happen with my sleep is just making things worse, I know if I try and relax and focus my mind on something else I will eventually be able to sleep).

Once I had done the above reframing I would then use the sound generator, body scan and say hello to my T so my mind could move on to thinking of lovely holidays on a beach while I listened to the sound of waves on the sound generator app.

Don't beat yourself up for feeling anxious about sleep it is our natural fight/flight reaction. I think by 'accepting' how you feel and reframing the unhelpful thoughts and putting into practice some positive mindfulness activities I would hope you can start to shift this type of thinking. It does take a bit of time practicing this but I know it has also worked for others.

Hang in there and don't forget be kind to yourself. Cheers John

PS I have a read a bit about Lenire, on the good and the bad experiences. If you have a spike due to Lenire hopefully this will calm down, how long ago was it since you use the Lenire device?

[DiegoDiegales]

Thanks for the encouraging words. The fist month and a half of using Lenire, It helped, however after having a break for a week, when I returned to it, was making everything worse. and kept trying without realising that it was Lenire the problem. It has been a month since I last used it. Hopefully it is a spike and will subside.

[purenostalgia]

My mam was about 75 and prescribed sleeping pills, after about 3 months she ended up a zombie during the day, I persuaded her to stop taking them and she was a different woman.

So no there is no way I will take sleeping tablets. I like you are struggling to sleep, I find Mynoise on my phone and placed under the pillow and the tv on set to 1 hour helps.

I find that the hour I lay in bed before getting up is the most difficult time of the day, I have not faced a winter yet, dark mornings will be another test.

Look to not having to take sleeping pills as another win against this horrible Tinnitus.

Take care.

Mike

[Vibe19]

Mirtazipine I have used for insomnia with tinnitus and balance issues for last 2 years - it means I will get some sleep early into night before chronic pain disrupts early morning - switch to meditation then - body scan is a go to. I find my tinnitus is now loud overnight - and I get less stressed about sea motion when horizontal. Tinnitus is less intrusive during the day. I was reluctant to take this suggestion on board when the tinnitus started - but it has allowed me to carry on working etc. The BTA conference was worth attending in 2019 - there are active local groups in the london area.

[Laura1325]

Dear Diego, I used Mirtazapine too and it helped me so much to sleep, well I also gained weight 😱 but sleep is very important, if you miss sleep all your symptoms could get worse along with other issues like ansia and in long terms even depression. I slept 3 hours per night during 4 months, it was terrible!! take the chance to get a good sleep and start from there. blessing.

[DiegoDiegales]

Thanks Laura, I decided to give Mirtizapine another go. I tried it a couple of months ago and I stopped it after a week and it made the T in my good ear worse. Do you remember if if your T got worse the firs weeks of Mirtizapine before it got better?