Hyperacusis and tinnitus

[EireAtaxic]

Anyone out there suffering hyperacusis and tinnitus? I haven't been diagnosed yet but I have had tinnitus for over 10 years and noise sensitivity for the past year during which I have experienced high levels of anxiety and stress which has worsened everything.

[Suz_2]

yes i have both of these - and a severe bothersome tinnitus - reactive to noise and goes up

[rabbits65]

Yes me too, tinnitus and hyperacusis right side , although sometimes it feels like it’s going across .

[Suz_2 in reply to rabbits65]

does yr tinnitus go up with noise - like being in car , traffic ,loud tv etc etc - mine does

[rabbits65 in reply to Suz_2]

Yes it does all sorts of things . Mine is mainly low tones but it is the fullness and tiredness in my head and can make you feel a bit dizzy .

[Suz_2 in reply to rabbits65]

dou know what caused yr T - mine was a head bump and a mild concussion compounded by music speakers

[rabbits65 in reply to Suz_2]

I think quite possibly the shock of losing my mother and brother in law in 2019 within 6 weeks of each other triggered some nervous shock and damaged my nervous system . I cannot think of any other reason why I started tinnitus

[Suz_2 in reply to rabbits65]

can u sleep through yr tinnitus - for how many hours

[rabbits65 in reply to Suz_2]

When I lay down at night everything seems ok for me , I know a lot of people are not alright. I have other issues that keep me awake. I have to go to toilet every two hours and also arthritis in my back , sciatica which can wake me up too. So with the tinnitus it’s calmer but my body does not like laying down in one position for very long. It’s a nightmare really but I just get on with it really. What’s the point keep worrying about everything . What about you at night?

[Suz_2 in reply to rabbits65]

the T is so loud it keeps me awake - and i cannot do sound therapies as these push up the T - i can get some sleep if i am really tired but only a few hours then awake for an hour or 2 then drop off again - sleeping is a big prob - as I have come off the Zopiclone which I took for almost 2 months ( altho not every night)

[rabbits65 in reply to Suz_2]

Try not to take medicines for tinnitus , I think in the long run it makes things worse. If you take antidepressants you just rely on them . That’s no good. Try and calm your little self down . Then your stress levels will calm down.

[Suz_2 in reply to rabbits65]

thnx r65 - tes u are right , best to keep off the meds - Ihave stopped the Zopiclone now. I also tried another med but I had a bad reaction after taking 1/4 of the tab - so yes, best to avoid meds

[rabbits65 in reply to Suz_2]

All the best to you Suz 26. A lot of good posts on here in this thread for you to read .We are not alone . It’s a comfort.

[Suz_2 in reply to rabbits65]

thnx r65 - all the best to u as well

[daverussell]

Yes, the combination of both of the can be really debilitating - stress, anxiety, anger, insomnia. I cannot focus with background noise, although this can cause a distraction from my tinnitus, my tinnitus will compete. If it's too quiet I cannot focus because of my tinnitus.

[VanGoghsEar]

Hi, yes, I had terrible hyperacusis along with photophobia. I had been diagnosed with Ménière's and the tinnitus is in right ear only. I was getting blinding headaches, neck ache and dizzy spells. I had been prescribed all the usual stuff like betahistine, cinnarazine etc none of which, for me, really worked. Then I was put under a neurologist for the severe headaches he called migraines. I say he called, because I didn't necessarily have the classic migraine behind the eyes symptoms, though I did have ocular migraines. Subsequently he put me on nortriptyline. For me this is going well. No hyperacusis nor photophobia, no dizziness since more or less week/month one. No severe headaches, though that depends on my dosage. I have been on as little as 20mg and as much as 50mg, currently on 40mg. It's not without its side effects initially, but I persevered and they have settled down. I hope things settle down and get better for you. You can't really explain to people how painful the putting down of a plate can be until you've been there. Good luck.

[CalleLaurel in reply to VanGoghsEar]

My doctor has said I don’t have migraine because I don’t have the classic symptoms, my bad heads are mainly on top of my head, forehead over and behind my eyes. It is so debilitating along with the tinnitus and Hyperacusis. As yet nothing g has helped in the slightest so taking nothing. If only I could get some respite from the bad heads.

[VanGoghsEar in reply to CalleLaurel]

Hi, I'm going to be bold and suggest, like me, you have vestibular migraine. I used to have migraines when I was much younger, in my teens, and then the pain was behind my eyes. In actual fact it wasn't until my last episode when I was eventually hospitalised; only because my wife had rung a local trauma centre after 111 gave her the number and the Dr on the line heard me scream in pain! That pain was at the top of my head and my doctor referred me to a neurologist. It was he who explained or described my headaches as migraine and because of the frequency of them he prescribed nortriptyline. Been headache free since I've been taking them, 6/7 months now. They come in 10mg tabs and you start on 10mg for four weeks, then 20mg etc building up. I didn't get any benefits until I got up to 40mg, then I was getting symptoms in the run up to Christmas, maybe stress. So I went up to 50mg the max. I've spoken to my neurologist and he's happy with that. I'll be on that dose for the next six months, then wean off. I'm not a doctor but you seem to have the same headaches as I had, top of head, photophobia (I couldn't STAND the light, lying down in a dark room with a sleeping mask was a help!) and hyperacusis. All these things are now gone since taking the nortriptyline, even the tinnitus is at times better.

I was taking Migralieve and using Kool Strips to ease the headaches pre-neurologist. Also strong prescription strength co-codamol. And sometimes alcohol...

I hope this helps, that or maybe get a second opinion from another doctor, and I hope you get help and are better very soon.

A.

[CalleLaurel in reply to VanGoghsEar]

Hi, thank you for the info, I am on the list to see a neurologist but is a long waiting time, they may not even see me apparently. My doctor insist I do not have migraine as it isn’t the classic symptoms.

[VanGoghsEar in reply to CalleLaurel]

Hi, you're welcome. I never actually saw my neurologist, I still haven't! We did everything over the phone. We had a long conversation and he diagnosed me that way. I'm sorry your doctor isn't being helpful. Maybe if you gather more information, from NHS site look up vestibular migraine and if the description of symptoms match yours all you can do is emphasise to doctor that this is same as you. We're in awkward times with Covid of course and just getting to talk to a Dr is a chore! I really hope you do get to talk to a neurologist, it would make a big difference I'm sure.

Good luck, all the best.

A.

[Graham-E]

Hello,

In my first year with T after the virus which caused it I did experience hyperacusis.

The opening of a crisp packet near me was horrific. I would have to leave the room.

After about a year is started to be less noticeable. Occasionally I have small spikes but nothing to what it was. I just wished that the T would also stop.

Fully agree stress, anxiety tiredness really ramp it all up.

Take care Graham

[Marlayna]

Unfortunately yes. I’ve had tinnitus since 1976, and had gotten used to it. Then I had a severe sinus infection in 1997 that I left untreated for several months during a pregnancy. Finally cleared it up with antibiotics, but it did something to my Eustachian tubes. I felt underwater, with noise causing a weird water echo in my head.

At that time I found an incredible acupuncturist who was able to place needles around my eustachian tubes. This type of treatment caused drainage and the hyperacusis went away.

Then in 2015 I took Benadryl for about a year and it caused some sort of damage. The hyperacusis returned and now I’ve been diagnosed with Eustachian tube disorder.

In addition, an EEG showed temporal lobe epilepsy, although I do not have seizures. I do believe my brain is wired to focus on noise and the only time I’m truly at peace is in an absolutely silent room. I wear earplugs on airplanes and in restaurants etc. But I do my best to live a normal life. I never go around anything over about 70 dB.

Not to be morbid and I do mean to be funny, but I have told my family members that the day I die please do not mourn me. Be thankful that I will no longer have to deal with monitoring levels of noise!

[OceanSun]

I suffer with both too. Both started at the same time in 2019. I've become somewhat habituated to the tinnitus now but the hyperacusis remains far more troublesome for me.

I bought some high fidelity earplugs (EarDial) which I sometimes wear when it's at its worst - mainly when out & about in noisy environments but also around the house too. Some noises in the kitchen like pots, pans & cutlery give me a lot of grief at times. The earplugs are almost invisible and take the edge off the sound to make it bearable. I try not to wear them unless I really need to though, in the hope that it'll desensitise again over time.

[EireAtaxic]

As I mentioned in my opening post, I have not been diagnosed yet as having hyperacusis. I have visited ent for over 10 years for tinnitus. I have a noisy house with young kids but my son has a very high pitch tone when he is loud to the point that it would nearly bring me to my knees. I tired Flare Calmer but they slip into my ear canal. I am awaiting delivery of Calmer Pro version

I have read that noise therapy can help, but what kind? I listen to wave sounds from Spotify. I do suffer from stress and anxiety and use Rescue Remedy and valerian but for me tinnitus levels are constant in both ears.

[Black-cat666 in reply to EireAtaxic]

Pink noise is suppose to help with earphones but u have to so it dor 8 hours a day along with diet and exercise and thats if u are not tired and exhausted from thus

[rabbits65]

It’s nice for you to have your young family to concentrate on . My children are grown up now with their own families . Do try and enjoy your young family whilst they are young. I really miss mine. I know it can be hard having tinnitus and hyperacusis with young high pitch voices. When I visit my granddaughters I try hard to ignore their high pitched sounds and rather than stress myself out I just try and forget it’s there . It’s a juggling act this condition . But what else can we do ?

[SantasElf1]

Hi, I do have tinnitus and hyper accusis. I do not go to concerts or noisy places and I keep ear protectors with me. There are many ways of reducing tinnitus and I do hope you find something that helps you. The worst time is at night when trying to sleep. I do not watch TV before going to bed. Giving my ears a rest in the evening helps me. I also listen to soothing music and play gentle piano. Try not to stress about it. Easier said than done. The more you fret the worse it is!, Jenny, Sheffield

[Marlayna]

I came back to make another comment. I have chronic neck pain and have been getting trigger point and lidocaine injections in the muscles of my shoulders my neck and even at the very base of my skull. The doctor mentioned that I have extremely tight muscles there.

Therefore, I think the tension and stress of that entire muscular structure constricts not only muscles but blood flow and the areas around the eustachian tubes. This would explain both some measures of tinnitus and hyperacusis.

I am going to explore seeing a cranial sacral therapist because straight up massage doesn’t get deep enough to relax those areas. I know from being a single mom of four when my kids were young that those are very stressful times. I had to teach my children to be quiet around me which wasn’t a lot of fun but it was the only way I got through it back in the day.

[CalleLaurel in reply to Marlayna]

I have suffered with both T and Hyperacusis for the last 2 + years, really awful and so many different noises make my T much louder. I have terrible neck pain and also for the last couple of month bad heads, these occur around the back of my head almost ear to ear and from the top of my head down over my forehead and eyes. I have seen a cranial sacral therapist but for me it didn’t have any effect. I find it almost impossible to switch off from the tinnitus. Good luck to everyone as I think this is so debilitating

[DR650SE]

I seem to be getting progressively more sensitive to noise having had T for 6 months now .Not impressed !!!

I still think doglovers suggestion of buying the book "Living with tinnitus and Hyperacusis" by Mckenna ,Baguley ,McFerran is a good move in helping one adopt the correct frame of mind when having to deal with T and hyperacusis

[Boy100]

Only just found this forum. I have tinnitus and hyperacusis. Tinnitus for nearly 5 years. It's always there and never changes. I was investigated by ENT in beginning. No treatment suggested. Hyperacusis has developed in last 2 years. I now live in a loud world. Even bird noise is irritating. Not talked to anyone medical about it. I'm not a stressed individual and the most part I accept it all and stay calm