Hi everyone
I got tinnitus in 2018 and it was manageable but since middle of January it’s got so much worse and it’s 24/7. I feel like my head is blocked and I can’t listen to music 24/7 as I have fibromyalgia and ME, just getting over muscle spasms in my back and severe back pain on top, now this.
Any advice please I am desperate.
I have appointment at audiology in March it’s ages away.
Hello Jan87. I had a look at an earlier post of yours concerting that horrible T. One of things you said was that doctors can’t really be bothered, or words to that effect.Whilst there isn’t a magic pill (if only!) there’s much that can be done to help.
About two years ago the National Institute for Clinical Evidence (NICE) issued guidance for GPs on how they should help their patients with tinnitus. The guidance was written with the help of the British tinnitus Association and was issued just at the time when Covid came along so some GPs might not be familiar with it,
You can look it up yourself on the NICE website and input ‘tinnitus’ into their search box, though it is written for clinicians rather than us patients.
You could maybe look at this and then approach your GP again for help. But in the meantime if this is a bit daunting why not ring the BTA? They are available nine to five of weekdays and they have a web chat service during those hours too.
Hello, thank you so very much, yes I don’t think he new about the new guidelines, he is a locum doctor so I don’t know when he will be back in the surgery but I did say that and they are not much useful apart from saying nothing they can do and it’s my age.I will ring the BTA now,
Take care thank you.
Hi Jan87 My heart goes out to you . It really does. Having cfs/me & T is a challenge because you need peace & quiet and rest for one and sound & activity for the other. In the early days it made me feel desperate too but you won't always feel this way . There's no perfect solution - as I said in reply to your earlier post . It's a compromise every step of the way . If it's any consolation I 've got to the stage where I can rest in 'silence' again. It's not the same but it's OK. Just hang in there. Give yourself credit for getting thru each day!
Hello, I know and it’s made complicated because only recently I have been able to move around due to without severe back pain and muscle spasms that were so painful I was hardly coping then in December and January and now this gone mad.Thank you, I do feel very desperate right now it’s really getting to me.
That’s so amazing, I am so please for you, how did that happen?
I will try, thank you .
Hi Jan87 I remember feeling desperate but things will get better. It's a gradual process. At the moment you brain has tagged T as a threat . It will downgrade from threat to nuisance as you get used to the increase in volume. I used quiet natural sounds and relaxation techniques to relieve the mental stress . Hold on. You'll get there too .
Hi,
Sorry to hear you are struggling. Its good you have an audiology appointment coming up, as HappyRosie says the NICE guidelines can be helpful in ensuring you get the correct treatment. One of the important things is to get a management plan in place (see here on the NICE guidelines (nice.org.uk/guidance/ng155/..., I would suggest you talk to the audiologist about them helping you with this plan, if not then maybe get a referral to an ENT. I think prepping for your audiology appointment is important as it means you get them to answer all your questions and you leave the appointment satified. Below is an example of what I prep'd before my last audiology appointment (albeit for a hearing aid):
- Understand how long my appointment
- Note down any salient points from the NICE guidelines and especially element where I should agree a management plan
- Understand my hearing test and ranges of hearing and get a copy
- Understand what follow on support and next steps are for my hearing loss
- Is Hearing loss age related and/or within normal range
- What about hearing aid options Bluetooth and/or noise generators (adjustments for work)
- What techniques can I use to help live better with my condition
In regards to living with your T between now and March, as you have had it since 2018 are they any distraction and/or behaviroal techniques you can put in place to help calm your nervous system and/or emotional reaction to your T. You could maybe attend one of the BTA support groups (the virtual ones are great) tinnitus.org.uk/find-a-supp... as not only learn techniques I found the empathetic sharing was helpful in calming my emotional reaction to my T spikes.
Hope this helps in some small way. Stay safe
Tinnitus/Menieres
My brief Tinnitus story
Worsened Tinnitus after syringing 
