new to tinnitus

[Lakeshiker]

hi everyone. I started with very loud tinnitus 9 weeks ago and I’m struggling to deal with it. I’ve seen an ent specialist who’s referred me for an MRI and to the hospital tinnitus clinic but it could take a few months before I’m seen. Ive had a few days were it’s lower but then it goes high again and I’ve not figured out why yet. I’ve purchased a sleep head band and I’m trying a bit of sound therapy on my phone but was wondering if I should buy some tinnitus maskers for inside your ears. Could anyone recommend any cheapish ones I could try? Thank you

[vincentchan]

You should talk to your gp first coz sound therapy in reseach doesnt show very promising efficiency Please take a look

tinnitus.org.uk/tinnitus-tr...

Please check it out to see which treatment suits you most

tinnitus.org.uk/tinnitus-tr...

[Lakeshiker in reply to vincentchan]

My doctors not really interested. I’ll have to wait to see someone at the tinnitus clinic, whenever that may be. But I didn’t think it cured tinnitus, just helped you habituate and help manage it.

[vincentchan in reply to Lakeshiker]

Good luck and hope u feel better

[Jakobala]

Lower your expectations and Good luck.

[Upbeatmap]

Hi lakeshiker

I know that when you first get tinnitus it can be devastating and it is very hard to imagine living with it.

I remember during the first weeks of developing it, I was often awake in the middle of the night feeling pretty broken and desperate and the prospect of having this for the rest of my life was terrifying.

While it will be hard to imagine for you right now, it does get easier over time for almost everyone. I’ve had it (mine is pulsatile on both sides) for around 2 years now and, at times, I don’t notice it. It’s definitely always there but much more in the background than it used to be. I have a routine that allows me to get decent sleep and the tinnitus no longer affects me day to day.

I know that it is likely that I’ll have this for the rest of my life and, while I’d obviously prefer not to have it, it’s no longer the devastating prospect it once was.

One thing that helped me a lot in the early days was listening to Neuromodulation tracks on YouTube. For me, it offered temporary relief, if only for 10 minutes at a time. This is the one I used: youtube.com/watch?app=deskt....

Take care and stay with this forum as it’s a great place to get support.

[Lakeshiker in reply to Upbeatmap]

Hiya, thanks for the positive reply that it will get easier. It helps to hear it may reduce over time. And thanks for the link. I’ll have a listen to it tonight when I go to bed.

The other issue I have is the doctor put me on Prochlorperazine, which to start with helped. I think it calmed the anxiety which helped deal with the loudness and I was able to manage it a little better and had days where it was lower. The doctors have told me to come off the Prochlorperazine now as you can’t take them long term but it has caused me to feel anxious again. Now they have given me propranolol to help with the anxiety but after trying to stop the Prochlorperazine and taking the beta blockers for one day I’ve had a really bad night and it’s really loud. Maybe I need to stop them all and just deal with it. Do you take any medication at all or just leant to deal with it without any?

[ViolinP in reply to Lakeshiker]

Hi Lakeshiker. My GP prescribed propranolol at first but it only really treats the symptoms of anxiety rather than the anxiety itself and has the added bonus of keeping some people awake at night. This was my experience and the continuing lack of sleep nearly sent me under. I was completely unable to deal with the tinnitus and too distressed to get anything out of therapy. I saw a different GP who recognised how sleep deprived and anxious I’d become and started me on low dose (15 mg) mirtazapine. You take it at night as it makes you sleep as well as attacking the anxiety. Everything changed for me after that. I’m no longer taking any medication as I got to a stage of stability where I could deal with the tinnitus. I’m not suggesting you change your meds again but be aware of the possible effect of propranolol in keeping you awake. I hope this is helpful to you - the early days are grim. I’m a year on now and I have found a way through. I’m not completely habituated but I lead a pretty normal life. Best wishes to you.

[Lakeshiker in reply to ViolinP]

Hiya, a lot of people on here say you get more use to it over time which is good to hear. Mine is really loud, I struggle to watch tv as it gets that loud but I’m hoping that will change. Did the mirtazapine help you sleep straight away? Thanks for your advice, it all helps 😊

[ViolinP in reply to Lakeshiker]

Yes it did. I had some nights when I couldn’t get to sleep even on the mirtazapine but mostly every night. There are side effects (especially weight gain) so it’s not for everyone and I did feel groggy sometimes in the morning. After a while I halved the dose but eventually wanted to come off it to see if I could cope. I’d gone through mindfulness therapy and got a much better handle on my life by then.

[Lakeshiker in reply to ViolinP]

Ok that’s good to know. I’m speaking g to my doctor tomorrow and I’ll mention it to him. I don’t really want to use the beta blockers so thanks for your help 😊

[Upbeatmap]

I don’t take any medication specifically for the tinnitus. I do take amitriptyline as my tinnitus is actually caused by a condition called SSCD which comes along with headaches etc. One benefit of that medication is that it can make you drowsy so I take it at night which I suspect helps with the sleeping.

I think that anxiety and tinnitus go hand in hand at the start and even feed off each other so getting the anxiety under control is a good thing. The same goes for sleeping. Everything is so much worse when you are exhausted in the middle of the night.

I don’t believe that there is any medication specifically for tinnitus but you may find that antidepressants help with the anxiety. However, I’m not a doctor so definitely speak to your GP. From what I’ve seen, many GPs (and unfortunately ENTs) don’t take tinnitus very seriously, but your GP can probably help with the anxiety. If you get that under control, it will be much easier to sleep and cope with the tinnitus.

Take care

[Lakeshiker in reply to Upbeatmap]

The doctor also gave me sertraline but I’ve not tried it yet. Maybe I should try it instead of the beta blockers

[Upbeatmap in reply to Lakeshiker]

Sertraline is an antidepressant which I had for the first year of having tinnitus. From what I understand, it can take a few weeks to start working and can even make you feel a little worse right at the start but it is worth persevering. Ironically, I think that tinnitus is listed as a possible side effect but I wouldn’t let that worry you.

I think that they worked for me but I stopped them because they gave me night sweats which was unpleasant. I also felt that I had things more under control so didn’t necessarily need them any more.

I’m guessing that the fact the doctor gave you sertraline and beta blockers means that you can take them at the same time but don’t take my word for that.

I think that the first few months of having tinnitus are so hard that doing what you can to get the associated anxiety under control is really important.

Take care

[Lakeshiker in reply to Upbeatmap]

It’s good to hear you tried sertraline and it didn’t spike your T. I’ll give it a go and see. Yes I think the beta blockers are to run along side it till it starts working. When I was taking the Prochlorperazine 3 times a day it massively helped with my anxiety and keeping me calm and I had a few very low sound tinnitus days. Because I have to change it I think that’s where a lot of my anxiety is coming from. Thank you for all your help and advice 😊

[Bellyboo in reply to Upbeatmap]

Hi, I’ve had T 40 yrs and your comments are spot on. My doctor has given me amytriptyline 25mg. I’ve only taken 1 and I slept for 12 hrs but woke up very groggy and it wore off about 10 hours later! Unsure whether to take one each evening …rather use them when the T is intolerable to get a good sleep. I normally take a zopyclone twice a week but I only get 7 hrs sleep: can I ask your advice and ask how long have you taken the amytripyline for? It seems a very powerful drug but it is good for anxiety in my case. It’s more or less a constant in my case and have habituated but if I have a bad nights sleep my T gets much more noticeable. I stopped alcohol 2 yrs ago but unsure it made things any better. Looking forward to hearing from you.

Many thanks in advance.

[Lakeshiker in reply to Bellyboo]

Can I just ask if the amytriptyline worked straigh away. A good nights sleep sounds amazing

[Bellyboo in reply to Lakeshiker]

Yes slept all night

[Lakeshiker in reply to Bellyboo]

Ok thanks. I might ask the doctor for those instead of sertraline 😊

[Bellyboo in reply to Lakeshiker]

Let me know? You should sleep well

[Lakeshiker in reply to Bellyboo]

Yes I will. Thank you

[Upbeatmap in reply to Bellyboo]

Hi

I’ve been taking it for over a year. It doesn’t seem to have quite the same effect on me as you have described. It was prescribed for the headaches I get as a result of SSCD but I think the effect it has on anxiety and drowsiness is an added bonus.

Lack of sleep can have such an impact on tinnitus, I think everyone should do what they can to sleep. I also use Bose Sleepbuds (sadly now discontinued) which work pretty well for me.

[Bellyboo in reply to Upbeatmap]

Thanks for replying. I’ve no doubt anxiety makes T worse. I’m 71 yrs old now and retired. I was a joiner erecting conservatory jobs all round the UK. At the end of the day working extremely hard and driving to my hotel noticed the humming in my brain . This has grown progressively noticeable . Alcohol used to be my preferred self medication until I retired 2 yrs ago. I only now drink on holidays as it’s oxytoxic and interferes with sound sleep, I’ve tried everything, no salt/ coffee supplements & diets but to no avail. A good nights sleep in my case helps me the most so amytriptyline is my new best friend.

[perlcoder]

Hi Lakeshiker

You will probably find many comments from people who say (I am not doubting them), that Sertraline caused or exacerbated their T. This, obviously, puts some new sufferers off trying it. I would just add some balance, in that I had a course of Sertraline a few years ago, starting with a high dose and tapering until discontinued. It was not prescribed specifically for my T, which was already quite severe. In my case it didn't affect my T at all - no better, no worse. We are all different.

[Lakeshiker in reply to perlcoder]

Yes I’ve read that and also all kinds of medication can cause T spikes. I suppose it’s just trial an error to see what is best. But thanks for letting me know it didn’t effect yours

[Upbeatmap in reply to perlcoder]

I totally agree with this. It’s natural that everyone tries to find a reason why they have developed tinnitus, in the hope of a cure and will naturally focus on something they did or took recently. It’s a case of causality vs correlation. I’ve taken Sertraline a few times in the past, before and after developing tinnitus and it had no effect on it at all.

[Lakeshiker in reply to Upbeatmap]

Thanks for saying it didn’t effect your T. I’ve been stalling taking it as I was worried but think I’ll give it a go and see.

[Sonnybee]

Hi there Lakeshiker. Your probably at the stage all tinnitus sufferers recognise. The part were you can hear nothing only tinnitus and in general feeling very low. I guarantee you will slowly come out of this and there's lots of decent advice here from fellow sufferers. What works for some, won't work for others, but my advice is to try everything, some things will just work for you. Sleep headband is a great start. If you can sleep that's most of the battle in my opinion. I use the Zen tinnitus app mostly. Also the art of zen neuromodulation sounds on YouTube. Make sure you use sounds that are the SAME frequency as your tinnitus. I made the mistake of just using random sounds to block it out, which set me back months. If you choose a sound, of the same frequency as you tinnitus, and play it, your brain will not perceive it as a threat. The thinking is, it won't then, in time perceive your tinnitus as a threat. Sound therapy definitely worked for me. I personally don't like ear buds or anything in ear based. If I need to listen to something during the day, I use shokz bone conductor headphones. They are awesome and leave your ear free to hear other sounds. All the other usual advice applies. Make sure everyday is packed solid. Try some cbt videos on you tube. Make sure you have good neck posture. There are tinnitus based exercises on YouTube, as your neck can really effect it. Meditation and mild pilates all helped me too. Plus, get a hearing test. Hearing aids can really help too, if you need them. Hope I haven't rattled on too long!! Take care.

[Lakeshiker in reply to Sonnybee]

I’ve just purchased a sleeping head band and will try to match my tinnitus but I’m struggling to find a match to the frequency when I’ve been using my phone so I’ve been using more natural sounds. Ive seen the zen arts sounds on u tube so I’ll have a look at them all and I’ll definitely google the headphones as they sound prefect. I think messing around with all the medication isn’t helping but I suppose I’ll have to do that to find something that works to take the edge off the anxiety. I meditate before bed to help me settle. Sounds like an alarm going off in my head whilst doing it but it still works and I’ll definitely look up some neck exercises. I walk my dogs every day which gets me some exercise. But thank you so much your advice is reassuring and I greatly appreciate it 😊

[Upbeatmap in reply to Lakeshiker]

You might find that this website helps with finding the right frequency: generalfuzz.net/acrn/. Only the sequence option seems to work for me.

As Sonnybee said, try everything until you find what works for you.

[Lakeshiker in reply to Sonnybee]

Can I just ask if you have a link to the zen tinnitus app? Think Ive found it but not sure 😊

[Sonnybee in reply to Lakeshiker]

Hi. I should have expanded. Its called the widex zen tinnitus app. I tend to use the zen sounds on it. Good luck. Remember, if you find anything else of interest during your searches, let us all know😉

[Lakeshiker in reply to Sonnybee]

Ok thanks that’s the one I’ve found. Yes I will do 😊

[Eleanor1989]

Hello

I found counselling really helped me, it was private

But it was great x

[Agnetha1985]

Well done forum, lots of suggestions ! I'm pleased you saw an ENT specialist so soon, I don't think that's the norm in the UK. I've had tinnitus knowingly for 17 months and have gone through a range of emotions in relation to it. The wait time for me for the NHS is indeterminate as I am regarded as 'routine' so I opted for a private hearing test and paid for hearing aids. I use free phone apps through which to play sounds when things get unbearable. I downloaded from the App store. My hearing aids have a linked phone app which also has white and brown noise on it.

I couldn't get CBT quickly so I paid for a combination of Hypnotherapy and CBT at £75 a session x 6 sessions. These helped me to regain a sense of control . I began to draw the tinnitus each day ( using a simple face design) using red, orange and green as degrees of severity and designs ( spikes, fuzzy marks , lines etc) to describe where it is and what shape it is in my head, doing this roughly 4 times a day . This helped me to see that there are green times and not focus as much on the red and orange times. I did this for four months and stopped this July when it started to dominate my daily routine.

I have yet to habituate so I can hear the sounds and they change throughout the day, thereby attracting my attention, but I can distract myself by listening to other sounds and the radio and by keeping busy. I have subtitles on the TV as the tinnitus interferes with my hearing generally.

I hope my story helps.

[Lakeshiker in reply to Agnetha1985]

Thanks for sharing it sounds like you are trying everything you can to help yourself get through it. Hopefully you will habituate soon.

It’s been a massive help for me just joining this group.

Funny enough the tv makes my ears go a bit crazy to.

[Agnetha1985 in reply to Lakeshiker]

TV and radio are perhaps tuning in to the electrical waves produced by the brain or vice versa? This happens to me from time to time so I play the radio through my hearing aids ,which are blutooth , and use sub titles on the TV when the interference is bad. The stream boost function on my hearing aids seems to help.

[Tanney]

do you have or did the ent test you for allergies? Tinnitus is often caused and/or made worse by allergy....particularly nasal allergies.

[Lakeshiker in reply to Tanney]

I the ent consultant didn’t do an allergy test but I have had clogged ears & bad sinus issues this year so I’m using a steroid nasal spray at the minute. Have been for 2 months. I read not to use antihistamines with tinnitus 🤔

[Tanney in reply to Lakeshiker]

I suspect your tinnitus may be caused or at least made worse by your allergies. a nasal steroid is good for keeping nasal congestion at bay but does little for your allergies. Did the ent tell you not to use an antihistamine spray? If not, I believe you may have incorrect info. I have bilateral Meniere's Disease caused by allergies which causes tinnitus. My neurotologist (ent who specializes in inner ear problems) prescribed both a nasal steroid and a nasal antihistamine. Here is my routine:

1. I use a saline nasal flush (salt water compound) in both nostrils.

2. I then blow my nose to get out any salt water that remains

3. I then use a good antihistamine such as Azelastine HCI NASAL spray. Spray twice in each nostril.

I do the above in morning and again in evening.

This routine has all but eliminated my allergy causing tinnitus. And it will make your sinus problems much less. This will take a couple weeks to be most effective.

I hope this helps you. GOOD LUCK!!

[Lakeshiker in reply to Tanney]

The consultant is sending me for an MRI scan and referred me to the tinnitus clinic but that was about it. My doctor has given me Sertraline for anxiety but I don’t know if I want to take it because it lists as a side effect ringing in the ears 🤷🏻‍♀️

Ill see if I can buy the nasal spray you use without going to the doctors. I don’t think my doctor would give it to me, they’re not being very helpful really. Would a normal antihistamine help? Thanks for your help

[Tanney in reply to Lakeshiker]

yes, a normal antihistamine that you can buy over the counter would help....but it must be a NASAL (nose spray) antihistamine not one you take orally.

the nasal flush is over the counter....no prescription needed. ask the pharmacist at your drug store for help.

[upyerbum]

I found that hypnotherapy helped with habituating, I actually found a hypnotherapist who had tinnitus themselves

It's still there & the level fluctuates but I do not get the anxiety levels that seems to cause tinnitus spikes

[Lakeshiker in reply to upyerbum]

Ok thanks I’ll look into that 😊 anything that helps I’m up for trying

[Agnetha1985]

Yes my hypnotherapist had tinnitus on her list of conditions she could address. The visualisations we practised helped as I have an active visual brain. I tend to use them to get to sleep and have several 'stories' I tell myself so as to distract from the tinnitus.

[Lakeshiker in reply to Agnetha1985]

I’ve found meditation before bed helps me sleep but I’ll definitely look into hypnotherapy 😊

[RobWG]

Hi.

As others have said the early days of T were hard for me. Certainly overwhelming personally .

I've slowly found ways of coping. Some masking where I used some bone conducting headphones. Trying to relax and not fight it. This forum was key in helping me.

I stopped doing stuff initially, I like cycling and going to watch my football team, socializing. I stopped flying for a bit

As I adjusted I went back to doing them, the cycling is good as it's chills me out generally. Football is good. Socializing a little tricker, whilst my T has become pretty much non reactive to nosie I find a loud pub uncomfortable but I can cope. Flying was fine the advice on this site was good for to that

I'm 3 years in now. My T this morning is pretty loud as it has been for a few days but it doesn't overly bother me. Which I suppose is habitulisation.

So for me its got better, significantly better. If I look where I am now to the early days the difference is remarkable really

All the best

R

[Lakeshiker in reply to RobWG]

I’m glad you have found ways of coping with it. I hope I do too. Everybody seems to say the same thing about habituation and I’m hoping I’m the same. It’s the anxiety that’s hard to deal with as well and not knowing if you can take any medication for that without it spiking the T 🤷🏻‍♀️