sleep: Hello, I developed Tinnitus last November... - Tinnitus UK

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ModelMetalworker•

2 years ago•19 Replies

Hello, I developed Tinnitus last November after a cocktail of Atorvastatin, Amlodipine and

Felodipine. Symptoms slowly worsening during the course of this year. My surgery insisted

Atorvastatin was not part responsible and advised it could help with tinnitus symptoms.

In desperation I restarted Atorvastatin on 21st March, three weeks later without much

warning I was struck with a new injury. The high pitch ringing is up, now have high

sensitivity to noise, exercise and even eating sets it off. The worst of all new symptom

is the effect on my sleeping, when ever I wake from sleep be it a five minute nap, a few

hours at night, I should be so lucky, or even just a few moments drift off, an event is

set into motion, I can here a small pitch change and then slowly but surely over the next

half hour full high intensity is reached, this is too loud to mask and during which is

impossible to sleep, this lasts for over four hours before backing off. This happens every

so any dozing or nap or just trying to relax kind of ruins the day.

As a light sleeper who regularly wakes during a sleep cycle waiting for hours between

what can be just a few minutes sleep is impossible.

My GP has prescribed Amitriptyline which has helped to keep me asleep during the night

but waking can be a lottery sometimes ok but can be confusing with my brain in the middle

of something, am also concerned about the side affects which include more tinnitus but

I can't function without sleep.

Does anyone have similar experiences?

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ModelMetalworker

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19 Replies

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Happyrosie2 years ago

hello. ModelMetalworker and welcome to this forum, where I’m sure you’ll find sympathy and a few hints.

A point about your statins. A lot of people say they are adversely affected by statins but there was a small trial recently where people were told they were getting statins but in fact received a placebo, and a significant proportion had symptoms. And this could work for other things - you’re expecting adverse events from new medication; so you get some!

I imagine that you and your doc between you have already gone down the diet/lifestyle route to control your blood pressure and cholesterol, and that these actions haven’t worked as yet. Have a look at the website of Blood Pressure UK to get more information about blood pressure, if you need this.

As far as masking goes, this can be a two-edged sword. As an example, I’ve been on a coach holiday in Europe recently so my ears have been battered with noise of coach and aircraft. So the T is masked during these events. but when things are quiet my brain is still looking for noise, so it finds it by creating my own version of T sounds and they are far louder than before I went on holiday.

In response to your first point, I would be very surprised if Atoravastin could “help” with tinnitus.

The older you get the more difficult it is to sleep soundly - oh for the days of one’s youth when you went bed at 11 and woke up refreshed at 7! Many people on this forum have reported sleep issues so you might find something that resonates with you here if you flick through some posts - if you don’t get any specific response to your own post.

ModelMetalworker• in reply toHappyrosie2 years ago

Hello, thanks for taking the time to comment.

rabbits652 years ago

You do sound like you’re in a bit of a pickle. As far as drugs go I take the minimal amount as I find they can do more harm than good. I was prescribed statins 6 months ago , same as you , Atorvastatin , I’ve never take them I’m more scared of the drug than the high cholesterol . My tinnitus is better since I cut out most of my medicine. I just take allopurinol and famotidine. Yes I have Amitriptyline too but don’t take them very often . I have painful conditions but prefer to use hot water bottles. Try getting yourself out for some nice walks to relax yourself , your tinnitus should calm down soon.

ModelMetalworker• in reply torabbits652 years ago

Hello, thanks a lot for your comments, unfortunately calming down and relaxing is what triggers one of these vile events, happened again this morning after what was just like a lapse of concentration, a miserable bike ride followed. This is now happening daily, sometimes twice, have no idea how proceed. Will look up the drugs you are taking, thanks.

Kellythecat-742 years ago

Hadn't noticed my T for at least 15 years . 3 months ago I was given ATORVASTATIN for cholesterol , the leaflet does say may cause T , but doesnt mention might make it worse.!! , My T returned loud and clear after just 5 days . ( I know they caused it). I have refused to take any more . Ator.. is the cheapest statin and the Nhs told all doctors to dish this one out. Out of 5 people I know on Ator, 3 have T but they cant remember when it started .can be many months later. Still have the T , but quieter and getting used to it. I use ear buds ( walkman radio) even sleep with them , but they do come out so trying radio (talk programs) at night. Music and stress makes mine worse. Its working out what works best for you . As I have been through all this before , now its remembering all the things that helped 20 years ago. You will find what helps ( trial and error) but it does take time . Hope you find your "helps " soon.... PS please report your symptoms to Yellowcard.mhra.gov.uk.. Hopefully Doctors will warn their patients . One DR said if we all read the warnings, no-one would take anything. Most reactions go away when tablets are stopped . T doesnt .

rabbits65• in reply toKellythecat-742 years ago

Hello Kelly, I was interested in what you’ve said about the drug called Atorvastatin , obviously I feel like you and have not taken them. However you and I probably are taking a bit of a risk with our cholesterol by not taking them. The last thing I want is for my T to get too bad and difficult to handle, I have got my T to a reasonable level that I can cope with and live with quite well. I feel better too by not taking very drugs. We will just have to hope that we don’t get a stroke or heart trouble by not taking Statins. Difficult decision. Isn’t it.

Kellythecat-74• in reply torabbits652 years ago

I told my doctor I'd try to reduce my cholesterol by diet . Dr said he'd give me 3 months then test me again .I tried vegan, but felt terrible after about 3 weeks. Guess my body couldn't cope with it. So now include fish and chicken. Feeling better .Did lose over a stone in weight. Actually having a cholesterol test tomorrow . ( private one because I want to know result before I go back to the doc). I'll let you know if it works. Also have read there's some new cholesterol drugs, but haven't looked into them yet.

Also there are some tinnitus soothing sounds on youtube . eg crickets/ rain/babbling brooks etc which work for a lot of people, not me though.

Kellythecat-74• in reply torabbits652 years ago

my cholesterol was 6.6 and considered very high. Now 5.41 , for best result should be 5 or under but I'm still pretty pleased with that.

rabbits65• in reply toKellythecat-742 years ago

that’s good news. Pleased for you. I must get my cholesterol checked . I myself have decided not to take the statins ( same make as yours). I will just take a chance with my life , I don’t want to take my tinnitus , that’s nice and low now , ruined by that Atorvastatin .

Kellythecat-74• in reply torabbits652 years ago

my T is still very high pitch . The hearing aids made it worse and my T was louder than the built in T program.. Might give acupuncture a go. Running out of "helps" .

Kellythecat-742 years ago

my recent appointment with the ENT consultant ,he showed me an article on his computer . Atorvastatin can make T worse .It doesn’t state that bit in the packet, says may cause it under side effects “1 in 100 “,. I reported the T side effect to “ Yellow.card@mhra.gov.uk . They sent a link which said over 7000 people reported T as a side effect and that’s only the ones who report it .

ModelMetalworker• in reply toKellythecat-742 years ago

When I complained to my practice the senior partner quoted extracts from this page pubmed.ncbi.nlm.nih.gov/304... They are still insisting Atorvastatin is safe. From January 2023 thresholds were lowered to allow Atorvastatin to be offered to even more people.

The GMC had this to say

Thank you for taking the time to contact the General Medical Council with your concerns.

An Assistant Registrar, a senior decision maker at the GMC, has reviewed your complaint and received advice from a medically qualified colleague, and has decided that the concerns you have raised would not require us to restrict or remove the doctor’s registration at this time. However, we will be sharing your concerns directly with the doctor’s Responsible Officer so that they can consider the matter at a local level.

The recommended starting dose of Atorvastatin for primary prevention of cardiovascular events in patients at high risk of a first cardiovascular event is 20mg according to the British National Formulary and NICE CKS guidelines. Although this was within guidelines, this is a permitted unlicensed use of the medication and explains why the medication leaflet states that the normal starting dose is 10mg daily. The Assistant registrar considered that Dr @@@@ should have explained that it was being used off licence and given at the higher dose. With regards to the tinnitus (ringing in the ears), this is considered an uncommon side effect, and it would not raise concerns that Dr @@@@ did not advise you of this when the prescription was issued. However, when you did develop tinnitus, Dr @@@@ gave incorrect advice that the medication could not cause this.

Although the GMC have identified some concerns with the communication and advice provided by Dr @@@@, the concerns do not warrant action on the doctor’s registration, but there would be value in the doctor reflecting on this as part of her annual appraisal.

What happens next?

We will write to the doctor to share your complaint. The doctor will be aware who has made the complaint, but we will not disclose your contact details to them. We will also send your concerns to the doctor’s Responsible Officer and ask them to address your complaint directly with the doctor as part of their appraisal. We may take further action if they tell us about any serious concerns, either in relation to your complaint or more generally.

Kellythecat-742 years ago

A very curious reply. So they are admitting the statin DID cause your Tinnitus. Interesting they say that the start dose is 10mg , I was given 40mg. Some of the people I know that take statins over 20 mg have T in various degrees . Those under 20mg don't. Unfortunately as T can develop many months later ( 18 months in one study) .It isn't always possible to prove it was the statin. Mine was 5 days later so I know atorvastatin is responsible. My doctor didn't advise me either, the leaflet in the packet does say may cause tinnitus under uncommon side effects 1 in 100. The leaflet DOES NOT SAY may make it worse. To my mind its not uncommon when it is the one the NHS told doctors to give everyone cos its the cheapest and its being dished out to thousands of people.

I reported my T to " yellowcard.mhra.gov.uk" They sent me some statistics. Well over 7000 people have stated Atorvastatin caused their Tinnitus and thats only those who complained.

ModelMetalworker• in reply toKellythecat-742 years ago

My surgery are not admitting anything, the GMC say the doctor I reported my symptoms to was in error when denying Atorvastatin's potential side effects. The 10mg starting dose is on the sheet. I've been reading about Ototoxicity, toxic to the ear, and would put Atorvastatin well into that category.

Kellythecat-742 years ago

I guess your surgery dont want to be sued. However I don't understand how she wont admit anything when she actually prescribed it. I think all statins are ototoxic. Neither my doctor nor chemist warned me. When I told another doctor why I wouldn't take anymore , he didn't question it. So am trying a veg/vegan diet .Cholesterol has gone down but not quite as low as they want. Atorvastatin caused T is irreversible. But i'm still hoping to habituate fairly quickly . Best treatment ... dont stress and use distraction. Theres an online Tinnitus workshop tomorrow online 1000-1200. Pay to participate about £12. if you are interested ww.eventbrite.co.uk/e/online-tinnitus-workshop-june-2023 . It was organised by tinnitus.org.uk

Philip6• in reply toKellythecat-742 years ago

You could try plant sterols to lower your cholesterol, either the yogurt drinks or you can get tablets, I take one a day. They are proven to work. I’m vegetarian too. Three pills a day lower your cholesterol and one a day maintains it.

Kellythecat-74• in reply toPhilip62 years ago

Hello , thank you for answering . I did order some plant sterols originally . If I remember there was a reason why they were unsuitable ,I think it may have been one of the ingredients thinned the blood and I'm already on blood thinners. I have heard they are good. I do take the little Benecol drink occasionally.

Davydee10 months ago

Hello Metal worker

I have suffered from Tinnitus for now on 10 year,it was bad at first I took it as a threat and was in a depressive state for some time but eventually habituated and it was very light ,that was until I was prescribed Atorvastatin it was loud and constant other side effects were pain in legs,thighs,restricting my exercise with that it affected my sleep raising my blood pressure I started on a Low cholesterol diet while starting on the statin but decided because of the effect on my tinnitus and my pains in my legs and thighs I stopped while on holiday

I came back home and called the Doc and told him my concerns and the impact this statin is having and Stopped it 2 weeks earlier he was hesitant but said I can wait another 10 weeks and have it checked again

So it’s now been 6 weeks with no statin and my tinnitus is light(it does spike now and again ) but does not last or was as loud like it did with the statin I am back exercising no pain and have lost over a stone in weight I would be very hesitant in taking any statin now I will control it with diet and exercise from now on

TinnitusUKPatPartner10 months ago

As this thread was last active a year ago, I'm closing it - please feel free to create a new thread if this issue is still a source of concern for any forum members.