Fourteen months ago I spent almost an entire weekend creating this blog. It was something I’d been thinking about for some considerable time but hadn’t gotten around to it. Well, for whatever reason, that weekend (end August 2020) inspiration struck, I set up and registered the web page and wrote my first blog (above, or link here).
I had big ambitions. To write a weekly blog about some or other topic and link it to a relevant line or verse of a song lyric, to hopefully add a bit of interest.
So much for that. A year and two months have passed by since then and the second blog (i.e., this one) has only now been produced. As I sit writing this it is tempting to think of excuses to use to justify the derailing of my plans – there really has been a lot going on – but the truth is that I dropped the ball big time and basically chickened out.
A major contributor to this derailment is the subject referred to in the heading of this blog. Over the month of September 2020, I started hearing a hissing sound in my left ear, that started getting progressively worse (i.e. louder and more intrusive). It is hard to describe tinnitus to a person who hasn’t experienced it beyond the temporary ringing you sometimes get after hearing loud noises or attending a music concert.
The initial reaction of course is the fear that there is something wrong in the ear or brain area. After a week or more of the incessant noise I made a doctor’s appointment, which (given Covid restrictions) took another few weeks to happen, and they said that apart from some impacted wax in the affected ear, there was nothing else to see. Instead of waiting for another appointment I paid to see a private Audiologist who after removing the wax examined my ears with a high tech mini camera. Again, nothing to be found, no visible issues, so he did a thorough hearing test. There was some hearing loss in both ears (only at the higher frequencies), so nothing major, but slightly more than they’d expect to see in someone my age. This hearing loss is a common cause of tinnitus, and hearing aids may well help so my brain can turn the volume down.
The hearing aids are around £1500 not counting the consultations, so back to the NHS I went. To cut to the chase, the next weeks/months included a specialist ENT, an MRI, several physiotherapy sessions, and NHS hearing aids.
Nothing helped, nada, zip.
So back to the title of this blog. My tinnitus gets worse towards the end of the day, partly owing to fewer distractions as I wind down for bed, but also because (and I am convinced of this) it is related to my neck and jaw muscles, namely the stiffness and tension I seem to always carry there. The worst part is that after falling asleep and being asleep for around 2 hours, my neck muscles stiffen up – from being immobile, the physio tells me – and then I wake with the noise at deafening levels. For a few weeks I would wake up and it would be like a jet engine screaming (no longer just the hiss) in the whole back of my head. It’s impossible to get back to sleep in this state, the body is in fight or flight mode, tension headache across the back of the skull which feels like an ever-tightening band, cold sweat and panic. The panic is the worst, is this going to be it for the rest of my life, how will I stand it and is it worth it?
In these early-ish days I had to get up and leave the room. The adrenaline and fear won’t allow me to lay still, so I do the only thing that can distract and calm me, I pick up a guitar. The electric one, unplugged, so no one else in the house will be disturbed. It takes a varying amount of time, 30 minutes, 90, sometimes more, before my breathing slows, and the panic subsides to a point where I can go and lay back down. Deep breathing and then at some point, exhausted, I fall back asleep. For 2 hours, then rinse and repeat. This may sound overly dramatic but I cannot describe how it feels when there is an incessant intrusive noise in your ear, that NEVER (not in 14 months anyway) stops. You can feel upbeat and positive and be busy during the day and then it is in the background, but if your mental state drops or ambient noise lowers, it is there. There is no escape.
I went to physiotherapy, they agreed that my neck and shoulder muscles were very tight and did some acupuncture as well as painful massage. It didn’t really help much, perhaps because I cannot afford to pay £55 a session for regular treatments. I went to some counselling for help in coping (even more expensive than the physio, but the NHS waiting list is in years, not months). I got some strong sleeping pills from the doctor, because after a few weeks of never sleeping longer than 2 hours at a time I was in a bad way. I would take a tablet every third day (they can cause addiction apparently) and sleep for 7-8 hours. Not refreshing and rejuvenating sleep, but it definitely took the edge off.
Right, enough misery now. Things are now much better than they were, and I am hopeful I am making progress on the path to habituation. They tell me that this is where my brain no longer perceives the noise as a threat and then fades into the background. I now take a sleeping pill much less frequently and can go up to two weeks without needing one.
So what has changed to improve the situation?
I am as convinced as ever that my back, neck and jaw muscles are involved and if not the actual cause, they are certainly an extenuating factor. I have discovered that if I wake up in the night and it is very loud, sitting on the edge of the bed and stretching out my scalene muscles and others can turn the volume dial down a few notches.
I have discovered that I have bad posture when sitting at my laptop. This is especially bad when this is my job and I sit like that 8-10 hours a day, every working day. I have started implementing cues to increase my awareness of when I am doing this neck hinge thing I do (sitting hunched forward but with chin lifted so I can focus on the screen (I have varifocals)) so I can sit up straight and bring my chin back. I take breaks more often and stretch out my neck several times per day. I also do yoga in the mornings and some breathing/mindfulness exercises.
I am working at changing my relationship with the tinnitus. Trying to remember that I have so many good things in my life that are worth living for and reducing the importance and impact this condition has. Letting it be and reminding myself that it is just a noise and cannot hurt me and it can do what it wants.
I still take paracetamol fairly regularly because I struggle with tension headaches (something I had rarely experienced before this) that I suspect are a result of the underlying stress of the tinnitus as well as the stiff neck muscles.
So, progress indeed, and, in case it doesn’t sound like it……
I have finally written this blog (#2). What more proof do you need?
7 Replies to “At night I wake up with the sheets soakin’ wet and a freight train running through the middle of my head – I’m on Fire (Bruce ‘the Boss’ Springsteen)”
Hi Sean, I have suffered with tinnitus for years. I hear you! It’s not so good for the mind in the middle of the night. I wear hearing aids🎶Have done so for 3 years now. Hang in there. You can overcome the frustration with mindful meditation, visualisation. It’s been tough. But I can blank out the “cicada beetles’ now. Sending love. Max
Hi Max, thank you for replying, that is really so encouraging to hear. I wore the hearing aids for about 5-6 months but as it made no (noticeable) difference (to the tinnitus, i can definitely hear more treble wearing them) I packed it in. They are quite inconvenient as I use other headphones a lot, both for work and for music etc. and they get in the way. Perhaps I should persevere and start using them again. Lotsa love back… Sean
Oops. Sorry I didn’t relate the name Sean to you. I thought it was someone else. Please keep me on your mailing list.
Bailey’s migraines are also associated with stress in her neck muscles. She also gets neck massages to relieve the muscle tension, and recently she’s used a heated neck pad.
Take Andrea to a massage session with you so she can learn the technique. A gentle massage before bed might let you get a better sleep. 💕
Hi Sean. I have suffered with tinnitus for as long as I can remember but you get used to it. The problem is really when you first notice it as it becomes like scratches on spectacles; you focus on it to the exclusion of everything else. I also suffer from tension headaches so it may be related. Unfortunately, it’s one of those ailments that becomes part of your state of being and all you can try is to drown it out with supplemental noise, such as TV or radio. I also suggest concentrating on tasks to take your mind off it. I find learning #Airtable really helps 😁.
HA ha AirTable is truly formidable then.. but seriously, thanks for your comment. I had no idea…. Appreciate the advice, catch up soon.
Thanks for allowing us to step into your life and struggles that have impacted you in the last many months. It indeed sounds very unpleasant and difficult to pin point. I do believe you right though….connection. All about connection of all your body systems and impacting on very undetectable levels but kicks a punch. You have figured out a reasonable plan cause you know your body. You doing everything you can for self care and I commend you for that, that takes courage my friend. Putting your journey out there for us to learn from is appreciated. Our vulnerabilities both physically and mentally is always more palatable when we can share with each other, thank you for that Sean… and yes, it was about bloody time for a second blog and yes , it took me a moment , I did think it was spam!!
Hey Cherry, great to hear from you. Thanks for the kind words and encouragement, and especially for sharing your insight. I remember having a similar chat to you in Majorca (remember that.. phew time has flown) about being in touch with your physical and mental health. It appears I have ignored the more subtle messages for too long, and now I am being forced to ‘listen’. I’ll keep on plugging away and working on those “connections”.