I need to sleep: I have had tinnitus for a few... - Tinnitus UK

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I need to sleep

MOMan09 profile image
18 Replies

I have had tinnitus for a few years now but In the last 6 months it’s been getting louder to the point it’s stopping me from sleeping. I get about 1 nights sleep in 3. I have tried listening to music and meditation and this sometimes helps but I’m getting to the point where I’m now not functioning properly and not able to concentrate on work as I’m so exhausted. I have spoken to my doctor and she will not prescribe anything to help me sleep, she said I need to buy nytol from pharmacy and this doesn’t seem to work. She is insisting she can’t prescribe anything so said I should order melatonin online from the USA!! So does anyone have any recommendations on a safe site to order it from? or any other ideas on how to get to sleep at night?

I need it to stop, it’s getting me down now and I have no energy or enthusiasm to do anything. My partner is now avoiding spending time with me because I never want to do anything and all I ever talk about is tinnitus. I’ve become a “tinnitus bore”

My tinnitus is a high pitched whistle. I was told there was an app that can play a sound to neutralise to whistle like noise cancelling headphones, is this a thing? I have searched but can’t find anything on App Store.

Also my tinnitus started not long after my covid jab, is this linked or just a coincidence?

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18 Replies
Philip6 profile image
Philip6

Hello, you could try Kirkland sleep aid pills, they are antihistamine based so not addictive. You can usually find them on eBay, or Costco. They work very well for me, although I don’t need them very often. Just half a pill works for me, taking a whole one makes me too tired the next day. The Dr could prescribe you melatonin I think, so it’s odd they are telling you to order them from the US. They are prescription only in the UK.

MOMan09 profile image
MOMan09 in reply to Philip6

Thanks Philip6

The doctor said they are only allowed to prescribe melatonin to children with adhd, not adults for some reason. I will look out for the Kirkland sleep aid pills and give them a try first.

Kenneth65 profile image
Kenneth65 in reply to MOMan09

I would strongly advice that you change your doctor or move to another practice.. i am currently on melatonin & quetiapine. find a doctor thats going to help YOU and take your Tinnitus condition seriously.

Rustreloaded profile image
Rustreloaded in reply to MOMan09

Ask her who is disallowing it. Arm yourself first with what NICE and BNF have to say about it but it could be that it's a more local health policy that's "disallowing" her prescribing.

Janna24 profile image
Janna24 in reply to Philip6

Hi , i feel you pain . I have tinnitus for 4 years now . And it worst at night . Sometimes , to make myself sleep i take quarter of 0.5 xanax . It and anxiety med and it helps me sleep . I was prescribed it from Latvian doctor , when i went back to see my mum. I think you can get them from internet also . It really helps me sleep and feel better . Good luck

Happyrosie profile image
Happyrosie

I’m a bit surprised- or I could say horrified - that your doctor has suggested melatonin. Your doctor isn’t following the pathways recommended by NICE (National institute for Clinical Evidence) which you can look up yourself. Website of NICE, input “tinnitus” to their search box.

if you look at the website of Tinnitus UK you can see a lot of information on what “cures” might be offered and you will see that melatonin does not really help.

Tinnitus UK has a lot of videos (I think they are called webcasts). One of them published about three years ago describes how you might help your doctor to help you. You might find this useful in dealing with your doctor who clearly isn’t very well informed. I can’t find the link but you can email or phone Tinnitus UK to ask,

PhilW60 profile image
PhilW60 in reply to Happyrosie

I've tried Melatonin and for me I don't think it did anything. I just take a magnesium pill an hour before bed these days. I have the Kirkland sleep aid pills in the cupboard as a stand by, I bought a box of 190 pills over ten years ago, and still have loads left. It helps knowing they are there.

ModelMetalworker profile image
ModelMetalworker in reply to PhilW60

Amitriptyline got me through the worst sleepless T issue last year, doctor was happy to prescribe. I now sleep unaided.

daverussell profile image
daverussell

We are very alike. I've been suffering a relapse in the last 6 months or so.

Sleeping tablets are kinda helping. Bedtime routine is key. Watch coffee intake and blue screen - I'm a bit hypocritical, but I can tell the difference.

Additionally I'm taking over-the-counter sleeping tablets and I was prescribed some different tablets. I did have a two week period taking one every night (this was the recommended maximum). I soon became "immune" to them.

Now I only take one once a week to help me catch up on an hour or two or less broken sleep. I alternate them too to avoid becoming too used to them or dependent (that's the theory).

Unfortunately I've just happy with the improvement and avoiding getting burnt out.

All the best. It will get better with time.

Sonnybee profile image
Sonnybee

On the subject of sound therapy, I also have a high pitched whistle, try the Art of Zen, neuromodulation with crickets, on YouTube, it will run for 11hrs with no breaks. Its a series of high pitched beeps, play it low. I abandoned everything the doc prescribed as it wasn't working, and making me feel lousy. I go to bed slightly later now, make sure my day was packed out so I'm feeling tired, honey, and a glass of milk before bed, natural sleeping remedies. Please also remember that tinnitus goes up and down, and even when habituated, it still can annoy us. Our response, is vitally important. The more we think about it, the more we avoid things that we think makes it worse, the more important and life ruling we make it, so try to accept that peaks are normal, I know its difficult. Finally, yes, the jab caused mine also. Never again. Take care.

Crazylady6 profile image
Crazylady6

I know it won’t help me ch but I am in exactly the same position. I am currently on a 3 month spike in my Tinnitus and the lack of sleep is really getting me down. A couple of weeks ago I wrote a post on here and was recommended the musicozy headband. It has headphones that can be worn at night and you can use the Bluetooth function to listen to music etc. I got mine from Amazon.

I also have the Resound App which is brilliant and I would really recommend that. It has a range of sounds that you can choose to tailor it to suit you. It really helps me during the day when I am feeling frazzled by it all. It also has a timer function, which is great to use at night.

The catch in all of this is how good your existing hearing is. Sadly for me, I am quite deaf so once the hearing aids come out I can’t hear the app through the headband unless I have it all set to maximum and even then I have to press the headphone part to my ear to pick the sound up - not great when trying to relax to sleep. Unfortunately (due to having it all on max) there is sound leakage and it disturbs my husband.

For anyone that has no or mild hearing loss, I would really recommend the headband and the app.

For me, I am heading out to find over the counter sleep pills.

Good luck.

doglover1973 profile image
doglover1973

Hello MOMan09 I'm sorry to read of your experience. T doesn't necessarily cause sleep problems at the outset. I had T for a number of years but it didn't trouble me until it got louder . It's worth going for a hearing test as even slight loss can push up the volume. My GP was reluctant to prescribe too. She suggested Phenergan to tide me over which was very helpful. I can now sleep with my louder T unaided. It's often just a matter of time. Hang in there.

Cat-Mother profile image
Cat-Mother

hi. Yes there is an app. It’s called Relief. Has lots of info on Tinnitus, as does Tinnitus UK.

The app sounds can be customised (up to 4) can be combined until you find the right sound, or combination of sounds, that helps mask or lessen your T.

I have used this for a couple of years now and find it invaluable for getting to sleep. You can set a timer so it’s not on all night. I recently had an ear infection so my T has changed and it’s taken me a while to accept it and stop listening to it - this is the best method for living with T. I had to change my night sound because of the change in my T, added some white noise to my usual thunder, rain, fire. It’s not masking but is helping me to get to sleep as I hear the sounds from my app not my T.

Give it a try - you won’t lose anything by trying and you might even gain some sleep and sanity back.

There is no cure for T but information is key.

Rustreloaded profile image
Rustreloaded

Have you checked the NICE guidance for insomnia and particularly the British National Formulary for the use of Melatonin yet? I have used it to in the past, if nothing else it can help you understand where your GP is coming from and inform a discussion with her if there are areas that she's applying precautions which may not apply to you. I guess if you've told her that the insomnia is caused by your T then this may be the reason she's not prepared to prescribe (melatonin is only supposed to be for short term use so if the T is the reason for your insomnia then as T can be a chronic condition it would suggest that melatonin should not be prescribed, however if your T is in an acute stage at the moment then I guess you could make an argument that you only need it until your T returns to its previous level or that you are instituting other methods of managing the impact your elevated T levels for the longer term and just need the melatonin to ease you through that process then you might be able to persuade her that prescribing melatonin is justified - sometimes it's just about helping them cover their arses). Re apps, I use the White Noise Generator by AMICOOLSOFT which I found on Google Play, although generally I prefer listening to the spoken word to help get me off to sleep.

Bbcoach profile image
Bbcoach

So sorry to hear about your situation. I don't know if this helps but I will let you know what has helped me. I started with tinnitus in January 2022. After a couple of ENT appointments I was feeling pretty hopeless as their advice was "learn to live with it". I developed insomnia, sleeping only 2- 3 hours per night. After about 3 weeks of this, I returned to my GP who diagnosed me with anxiety and mild depression which he said has resulted in insomnia. He prescribed a mild anti-depressant. I really don't like to take medication, but I was willing to try anything. It took a few days but the medication (trazodone), allowed me to get some much needed sleep. I also decided to try Cognitive Behavior Therapy. I found a wonderful therapist who has helped me a lot. After doing my own research, I also found a Youtube channel called "DaleSnale". He is a sound engineer who also has tinnitus. He has many different sound therapies in different ranges. I experimented with different sounds until I found one that actually helps, especially when my tinnitus spikes. His videos are free and might be helpful to you. Hope this helps and I sincerely wish you the best!

Tlflom profile image
Tlflom

No to melatonin. It will trigger a shutdown of your own production. You need to get the cause diagnosed as that effects what needs to be done. Some meds cause or increase it while others can help. Neuroma (tumor) can cause it. Trauma or need for surgery may also be needed. Atherosclerosis , blood pressure, and a host of emergent and non-emergent causes. Mine was a severe trauma, periodically, I search resent studies and try a new ENT or an otolaryngologist now and then. I have found a gentle chiropractor can greatly improve mine. If it helps but does not hold, then prolotherapy helps it hold. It matters how good the doc is, especially in prolotherapy. My favorite doc could not fine a doc to hit the correct spot. She said she sat with a bottle of whisky and got the needle in the right spot herself! Yikes. Deep meditation at bedtime can work for me. There are treatments out there depending on the cause. In the US, docs are highly motivated, but we also have losers as well. I encourage you to do your own research then start trying different docs who specialize in Tinnitus treatment.

camino9 profile image
camino9

Also my tinnitus started not long after my covid jab, is this linked or just a coincidence?

No co-incidence. One of the listed side effects. This is why (when you read the fine print) by taking the jab you give consent to something that was, in essence, experimental.

The sleep thing is so hard. I really empathise. All I do is wear myself out (walking) if/when I get into a high volume ringing cycle. Heat can help (sauna) and also magnesium baths.

geeHaze profile image
geeHaze

these worked for me... they might make you a little groggy in the morning so be careful, I tend to only take a half.

biovea.com/uk/product/detai...

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