I have newly diagnosed tinnitus following a course of GP-prescribed clarithromycin on 29th September. I have been very fortunate and secured a private audiology assessment. My Tinnitus is level 5, 1125Hz constantly, and I am struggling to cope as a result and also off work which is adding to my stress. My GP has been hopeless , when I tried to explain the audiologist evaluation to him, he quite bluntly said I don't understand anything you are talking about and dismissed me with, "I will refer you to ENT but expect a four-month wait."
I have seen on this site an e-therapy CBT course. Has anyone done the course and would be willing to advise if it was effective or not. I don't know anything about CBT or how it works.
Also, advice regarding distracting noises just now, I am playing sounds for tinnitus 24/7. Is this normal?
I'm finding it hard to keep my stress and panic levels down and would appreciate any advice.
Thanks in advance.
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Pebbelest
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I’m not going to answer your specific questions necessarily. Other posters in this very supportive community it’s will probably do so.
I’m going to focus on what your GP has said. Firstly, I personally haven’t heard of a tinnitus assessment as you describe the results. Did the private audiologist not guide you towards help?
Ive tried masking with waterfall noise and fan noise. Makes no,difference to me personally.
Now to the positive. NICE (the National Institute for Clinical Evidence) published in March 2020 their recommendations on the pathways that GP’s should follow. It’s not really surprising that your doc doesn’t seem to be up to speed with these guidelines as the pandemic overtook things rather. Read the guidelines by accessing the NICE website and putting Tinnitus into their search box. Armed with this, you can return to the GP if you wish.
secondly, go to the website of the British Tinnitus Association. Lots of help there.
Thirdly, there are several books that help, but all the information coming your way (NICE guidelines, BTA, other posters comments) could be bit overwhelming in quantity while you are feeling the way you are, so I’ll leave that for the time being.
Thank you for taking the time to respond Happyrosie,
My apologies. Perhaps I was not so clear, the audiologist at the assessment gave me great advice and direction and talked about sound therapy & CBT. I guess I was taken aback when my hope was that GP could direct me to where I could get help from the NHS going forward with the audiology assessment. Thank you for the direction to the NICE guidelines; armed with the information, I can ask better questions of my GP, and hopefully, he will be better able to help.
I have joined the BTA and working my way through the site and finding it helpful; as a newbie to tinnitus, I've found it's pretty overwhelming, but reading others' experiences on this forum has let m know I'm not the only one to feel this; and I value everyone's support, especially from those who are further on, and coping with tinnitus.
Hi Pebbelest A warm welcome. Tinnitus can be very uncomfortable especially at the onset. Everything you're feeling is normal. Here's my top three tips 1. Give the BTA helpline a ring (0800 018 0527) if you haven't already . It's nice to hear a friendly voice when you're in panic mode 2. Have a read of Living with Tinnitus & Hyperacusis. It's very informative 3. Try CBT online, over the phone or in person. It's very helpful to address the way you think about T . Hope this helps.
I found and called the BTA helpline yesterday, they were fantastic, Tip 2 is a my task for today, and Tip 3 ill try to find the resources for CBT over the weekend. I appreciate your help
Nice work. The book covers the three tenets of coping with T - sound therapy, relaxation therapy & CBT . The BTA recommend a therapist called Debbie Featherstone. I haven't done the course but other people on the forum speak highly of her . I found someone locally.
i woke up to T out of the blue last month I was devastated and just did know how to cope,and I am still learning. Night is particularly hard some days I listen to frequency music or listening to stream flowing as suggested from the lovely people on here. I have eustacian tube which started in may and still have symptoms awaiting to see ENT end of this month. I have kept going I have my baby who is few months and needs me.
im not sure what advice I can give other than listening to music on the nights when I struggle to sleep.
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I have found an tinnitus calmer app which i have started to use at night and it is helping a little.
I hope we can all support eachother here, it's hard dealing with T especially when we struggle to cope night more so. I'm still trying to cope and find a way to be at peace. I am worn out with baby to breastfeed throughout night regular so each time Im aware of T some nights so tired I sleep.
i sometimes listen to stream flowing sounds on YouTube, guided meditations on days that are hard.
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. Sleeping is a big hurdle for me just now as I can't take certain sleeping pills that mimic diazepam side effects but I will ask my doctor about clonazepam. Thank you.
- I was ‘completely preoccupied’ with the T - monitoring it constantly, trying this and that supplement - this and that diet, tinnitus forums and clinics
- then, as soon as I saw the horrible stories of cruel torture and murder on the American website, I said to my self ‘X, you’re so LUCKY to have just T to deal with’.
Then, immediately, the rating of 50 I had given to T dropped to Zero - and no need for clonazepam anymore.
SOUND THERAPY - gentle sound therapy to start with, is usually recommended. I have 'basic' sound therapy machine - but not the bluetooth ones as i find the rich range of sound, from those ones actually irritates my T, in my case . I use mine on a very low volume, lower than the T.
CBT - try the OTO app (£20 per month) for a full range of CBT therapies for T. Its really good
FOOD & DRINK - attention to yr diet - reduce or cut caffeine and drink decaf coffee/ tea . Reduce chocolate as that contains caffeine, but i still have chocolate but not as often as before - reduce salt and choose foods which are low salt ( or no salt if poss) - reduce or avoid alcohol - reduce foods and drinks with sugar - read food labels and try to avoid food and drinks with too many artificial additives: Sulphites are one of worst culprits . I had really awful spike this week because of sulphites in a M&S Elderflower drink. another spike that I had recently, was because of eating raisins coated in sulphites.
SUPPLEMENTS - try Vit B12 / Magnesium L Threonate - buy supplements which are free from additives , as many additives in supplements (top brands and H&B) can aggravate the T. Natural anti anxiety supplement is L Theanine - i dont take the full capsule ( about quarter or third ) and not every day , but it does work and helps me to sleep
MEDICATIONS -just take those meds which are absol necessary. I have read its best for T sufferers to avoid ibuprofen and aspirin (if possible) and take alternatives like paracetamol instead . Also avoid Anti depressnts if poss
Walking or other Aerobic Exercise - every day i walk for about 45 mins - it helps with anxiety and sleep
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. thank you for the advice re dietary do's and don'ts and I shall try the supplements. Thank you
hi - u say yr Tinnitus is level 5, 1125Hz constantly, - how was this measured ? I didnt know u can get this sort of T assessment from audiology - I saw private Audiologist as well .
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I am sorry I should have ben more specific I was assessed as Level 5 on the (THI) Tinnitus Handicap Index. As part of the audiology assessment the audiologist matched the tone I hear to a Hz value during the process, it was an extensive examination taking well over half an hour.
Thnx Pebblelest - I see level 5 it the top level ( Catastrophic) I did this test too and I was on the borderline between severe and catastrophic with a score of 76. I think Aldos advice with certain supplements maybe worth a try - but I use L Theanine instead of the Matcha Green tea ( coz green tea has caffeine) . Best to find supplements with few or without the additives.
you have lots of support on this thread, that’s good. Just to add my two penny worth!!! I have found very few doctors interested in listening to our tales of tinnitus, so don’t expect your GP to offer much help. There is more help on this site than anywhere else and it also helps to know that you are not alone. The most relaxing past time is to try and get out into the fresh air and listen to all the nature sounds, bird song rustling trees in the breeze etc. this will really relax you as you walk. I have to go out often anyway to walk my two lively poodles. Take care of yourself and let us all know how your getting on. 😃 🐩 🐩
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer, I have found natural sounds helpful and discovered the delights of gardening in the rain! which is a surprise to me as previously I was a very reluctant gardener.
Good to see you have received so much useful information from other members. When my Tinnitus journey began I too was dismissed by my GP who forwarded me the link to the BTA and virtually said get on with it!! I suffer from MES (musical ear syndrome). He had never heard of it so I guess he didn’t think it was anything to worry about! A bout of Labyrinthitis caused mine and has left me profoundly deaf in my right ear. Apparently my brain realises it is not receiving noise in that ear and knows that’s not right and as I’m a music lover, for some obscure reason decided I would enjoy undefined repetitive music 24/7. Looking back I think I was at my lowest point in life and was so distraught with what was happening. I started by reading as much as I could to try and better understand what was going on. 2 years on and my GP is more understanding and I had a lot of help from an Audiologist at our local hospital. I think we all get good/bad days but are all individual in our suffering. Try and not get stressed. Good luck.
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. It is most certainly a learning experience and I have a lot of learning to go.
Your not alone.My tinnitus ramped up 3 mo the ago and I'm on a list to get on a list to see an ENT person.Its very frustrating and if I wake in the night which I do 2 times at least it's almost impossible to get back to sleep.I also have a very muzzy head all the time.
Hi I'm sorry to hear of your frustrations but Ive found the support from others like yourself very helpful, just to know your not alone is a strange but comforting help. I hope things improve for you soon too
Ent’s and GP’s are pretty useless when it comes to tinnitus treatment because A - they can’t say for certain what caused it and B - they can’t offer anything to cure it . For me personally the first 6 months was hell and then once I stopped looking for treatments or diagnosis or a reason for getting tinnitus I accepted that the only way forward was to accept it and start training myself to ignore it . This seems impossible to begin with but over time if you can teach yourself - not to constantly monitor the sound level , not to think about how awful and life changing it is , and go back to doing all the things you did before you had it . Going back to work if you can is essential , anything that distracts you mentally from focusing on the sound . Masking it with other sound didn’t help me much because it prevented me from accepting the noise and then working on ignoring it . If you can learn over time to accept it and then not monitor it the volume will go down or will be there but won’t bother you half as much . You can’t control the noise but you can control you’re reaction to it over time and that will bring it down . Also it feeds on stress , the more stressed you are the louder the sound , do anything you can that makes you feel good even drinking and smoking , people will hate that recommendation but half a bottle of wine and a couple of cigarettes always reduces my T and helps me not to focus on it . If yours was caused by taking some form of medication and not permanent hearing damage it might go away one day , there is always hope .
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I so desperately want to get back to work but I am also fearful of just how I will cope. I have tried to reduce my use of the masking sound as you suggest over the past week, its a slow process but I will get there. Like all on here, I do hope that it goes away but just now its hard to conceive that it may happen. I know this is a learning process of acceptance its just that Its not be strongest attribute.
I found it hard going back to work full time but think of it as another form of masking , now at work I find the T is often quieter than when I’m at home . The worst thing to do is to constantly think about tinnitus .
ciao Pebbelest! I'm sorry to hear that you are joining the Tinnitus Family😀, I've seen you have been given good advices already, by my side, .since August I've started to use the bite during the nights to avoid to clench the teeth and actually there has been a "slight" improvement, maybe this is something you can consider too because stress and panic can seriously damage your body in the long run. So try to stay calm, do the routine tests for T and you will learn a lot from your new traveling companion. Love!!
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I am especially appreciative of all advice and support I have received from this forum its a great help to know Im not alone and many have travelled this road before me and learned to live well with tinnitus.
I’ve had it 40 years. GP can not help me only to prescribe whatever I ask for of which sleeping tablets afford me a few nights sleep every weekend , I’ve met 3 people who have been fitted with a £3000+ hearing aid attuned to their requirements which mask the T and it works for them? I’ve now got chronic bagpipes in my head but it no longer frightens me as I’ve decided to live with it totally. I long for quiet but at 70 yrs old I’m resolved to live with it.
You will have good days so pls hang on in there and don’t despair . I recon 10 yrs there will be a cure
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I am especially appreciative of all advice and support I have received from this forum its a great help to know Im not alone and many have travelled this road before me and learned to live well with tinnitus. I have looked into TRT but hesitant at this stage. I am sure everyone on here would join you in your hope for a cure.
I see that clarithromycin is an antibiotic. You think this caused your T? Since you took it only recently, I guess there's the hope that the side-effect may fade. I now try to ensure my GP doesn't prescribe ototoxic medicines for me - he probably thinks I'm a pain. I did some web-based research a few years ago and found that penicillin-based antibiotics should be OK for T sufferers, but I don't recall the source of this info. I think there should be an effort to educate doctors about tinnitus, as it is such a common and disruptive complaint that is potentially caused by their own prescriptions.
Regarding the sound therapy, masking is one approach - I find water sounds of waves and streams good for this. However, to actually (temporarily) reduce T, I find that short, snappy bursts of sound can be effective - birdsong is probably the best for me. But everyone is different, so you need to experiment with different sounds. I have a Homecube sound generator that I got from Amazon that offers a fairly wide range of sound-samples with good sound quality.
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I am especially appreciative of all advice and support I have received from this forum. I have found natural sounds helpful and discovered the delights of gardening in the rain! which is a surprise to me as previously I was a very reluctant gardener. I have reported the side effect through the yellow card scheme yellowcard.mhra.gov.uk/ and would definitely encourage anyone to do the same it's one way to educate doctors about tinnitus, as it is such a common and disruptive complaint that is potentially caused by their own prescriptions.
Hi Pebbelest! I had very loud T for years, with extremely crazy spikes with suicidal thoughts! I began to search frantically on the web because science does not give me any answer.
If you TRY ALL of this, I'm sure in two or three month you’ll be much better!!
1.- Mother tincture of Passinflower plant at night, but you don,t have to take medicine for sleep!
2.- Magnesium L-Threonate (only this Magnesium works well with T.) in the morning and five hours before sleep.
3.- GABA with Gingko Biloba before breakfast and two green tea Matcha per day but not after 5 pm.
4.- Control your blood pressure and detects if you snore or have cervical problems.
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I am especially appreciative of all advice and support I have received from this forum.
Another member on the forum mentioned Magnesium L-Threonate so I will certainly look into that.
I have not heard of Mother tincture of Passinflower, GABA with Gingko Biloba or green tea Matcha are these easily available?
Yes, are easily available at health food stores or web. All these are necessary because there actions complement one another. Passinflower tincture is the best, but it works in any way you find it. Keep in touch and best wishes!!
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I am especially appreciative of all advice and support I have received from this forum. Yes, that was the doctors' response, but I believe they were just batting it into the long grass, I have found that I am learning more about tinnitus to educate my GP they originally said that once it was out of my system the side effect would go away. Clarithromycin has an elimination half-life of 5 to 6 hours. so sadly the antibiotic is all gone but the tinnitus remains.
Indeed it is, Friday's Child. They were blocked this morning, reported to Health Unlocked and are attempting to funnel users towards the dietary supplement Quietum. Feel free to flag any such copy-and-paste posts in future - we and Health Unlocked will do the rest.
I did CBT and although not tinnitus specific CBT (just standard CBT offered by the NHS) I found it very useful and has been a cornerstone of me now living well with my T. I found that I had to keep an open mind and had to be disciplined with the tools they suggested, after some time I found this helped me calm my nervous system by shifting how I thought and felt about my T.
In regards to other suggestions on sound therapy, at night 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
In the day I would always have the radio on in the background at a low level so my brain had something real to pick up on rather than just my T.
I think its important to use sound therapy that works for you. I realised I had stopped listening to music, so I made sure I listened to music I loved as this helped me focus on something other than my T but also evoked positive emotional response (as it was music I really enjoyed).
I think when we first have T we can easily 'over monitor' our T, this can keep up in an heightened state (fight/slight). This is a tricky phase to be in as we all want habituation but it can seem impossible when our brains our totally focused on the sound of our T. What helped for me (in combination with some of the CBT tools I learnt) was that by following evidence based techniques I could live well with my T. In regards to sound therapy I felt that by making sure I had low level sounds to listen to and using sounds I really enjoyed it allowed my brain 'to move on' from my T and allowed me to focus on real external sounds. I used this in combination with other tools such as relaxation, exercise, mindfulness, etc.
In regards to the clinical care you you have received from your audiologist. The National Institute of Health Care and Excellence (NICE) guidelines on T (nice.org.uk/guidance/ng155) are important as all clinicians (GP, Audiologists, ENT, etc.) should be following thse guidelines. This is a lengthy document so have a look at this flowchart in the supporting document section (nice.org.uk/guidance/ng155/... which shows your GP should be helping you get a MANAGEMENT PLAN in place for your T, if they are unable to do this then have them refer to a good audiology/ENT who should be able to help you with the management plan.
Thank you for your support and please accept my apologies for taking so long to reply to your post, my T has been really bad over the past few days and I've not managed to concentrate to use the computer. I am especially appreciative of all advice and support I have received from this forum. Thank you for your advice in particular direction to the NICE document, my next task for my visit to my GP and looking into CBT linked on the BTA web site.
try not too worry as your emotional state calms your T will too. Stress always makes it worse don’t worry if stress levels go up it is a normal human reaction
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