Success stories

[TinnitusUKWombat]

Hi guys, any success stories?

We've got a few new members at the moment who I know would love to hear some.

Particularly if anyone has experienced getting Tinnitus after having Covid.

[Hidden]

HiLast Oct 2021 I suddenly developed Tinnitus (T) in my left ear and it has been with me ever since. I had just retired at 62 and it was quite depressing thinking that I now had a blot on my quality of life in the supposedly golden years! I did the usual thing and went to my local GP who is also an ENT doctor. This was a pointless exercise, I might as well have gone to a vet! The doctors view was that there was no cure and I would just have to live with it. Disappointing, to say the least.

Like many, I then consulted doctor google and after 3 or 4 months came to the conclusion that my T was probably related to localised blood flow restrictions in and around my ear, linked to muscles in my jaw and neck. This was supported by the fact that I could change the volume of my T by exercise and the positioning of my neck, tightness of jaw and that the volume also increased as blood pressure rose.

For the last 6 months I have undertaken a rigorous exercise regime, lost a stone in weight and reduced my blood pressure. A combination of neck exercises, swimming and gym work has now got me to a position whereby I can now go one or two days without any T, following exercise. So most of the time now I do not have T. When it does return it is also very quiet, so much so that I have trouble trying to hear it.

Upon reflection, I class myself as fortunate. My quality of life has returned. I am fitter now than I have been for years. I do not think I have totally eradicated it yet but I am getting there, fingers crossed.

The type of T I have experienced should be researched more, there is clearly a link with blood flow, especially as physical therapy definitely works. Correct early diagnosis of this type of T, implementation of a therapeutic regime and monitoring to adjust and concentrate on what works is essential.

As it is Friday, I will now go off for a swim later today. This should knock the T on the head for the weekend. My next goal is to find a cure for the constant noise caused by my dear wife nagging me in my right ear!

😀

[rabbits65 in reply to Hidden]

What a wonderful positive post . All your exercise , all your weight loss too. I would like to say to you . “ very well done “. I must take a leaf out of your book . It just goes to prove that we can all learn to helpOurselves and that it decreases our tinnitus . I wish I had your willpower. !!!

[VanGoghsEar]

Hi, I'll try keep this short, though condensing the years of symptoms won't be easy! I was finally diagnosed after about 18 months of suffering with vertigo, nausea, deaf in one ear with Ménière's disease. This while I was still at work. I was having vertigo attacks at work, vomiting in the toilets going home regularly not going in for days because of attacks, so often on the sick. Then I was prescribed some tablets cinnarizine maybe, felt better. My line manager said I looked better. But it didn't last. A redundancy situation arose so I took early retirement at 60. Many symptoms hospital visits to A&E, worst during post pandemic NHS shortages crisis and I finally, some 4 years later got referred to a neurologist. This because I was having terrible headaches, migraines. The biggest problem was the hyperacusis and photophobia. I couldn't wear my hearing aid, it gave me headaches and triggered my symptoms. I usually wear contact lenses, still could, but needed a new prescription for my glasses. The pair I got about 3 years ago I just could not wear. Looking through the varifocal lenses was hell! My eyes felt as if they were being crushed, my migraine came on, so I carried on using my old prescription. I said I'd try be brief, believe me I am! So, the neurologist prescribed nortriptyline. I was quickly on the top dose 50mg. The headaches went away, to some extent, the dizzy spells grew less frequent and not so easily triggered. But the side effect of the drug were telling on me. And I still wasn't entirely symptom free, just subdued symptoms. The neurologist had also suggested I see a physio. This because throughout all this I had said I had neckache, terrible neckache, and to me this seemed integral to the headaches, dizziness etc. So I finally got sent to MSK clinic and saw my physio, Claire. She listened to all my symptoms and problems I'd had over the years and then checked my neck. She noted some stiffness and where and set me a program of exercises to do. Here's the happy part! In a couple of weeks, after not that many weeks of doing the exercises plus increasing them, I'm going to be signed off practically symptom free. I still have tinnitus and it can be hell. But, the glasses I mentioned? I can now wear them symptom free. The hearing aid is back in and not causing headaches. The nortriptyline is down to 30mg, next week it will be 20mg. I'm looking forward to going on holiday in September, and my wife is not living in fear of me being terribly ill, as happened last year. I wake up headache free. Whenever the old symptoms feel to be starting I'm not crawling upstairs to bed to lie in the dark with a sleeping mask on. When I socialise, crowded pubs are no longer a hazard, playing havoc with the tinnitus because of the hyperacusis. I'm not with my mates at the club pretending I don't have headache, playing snooker with vascular migraine. I'm not saying my snooker has improved that much, but I'm enjoying it again. I'm enjoying life again. I can go out in the sun with no photophobia now, we've bought a cold frame and I've joined my wife gardening. She does the bulk of it, I'm growing chilli plants. Life is good again when I never thought it would be. I lost a friend to this terrible disease, he committed suicide. We lived miles apart and were work friends so we didn't get to talk about it. So talk about it! I'd say to anybody, in the throes of suffering, don't despair. Don't give in. There is a way out. It may be a long, hard road. But you're not alone. You will conquer this. I know I have.

Good luck.

Andy

[ArtyPants46 in reply to VanGoghsEar]

Dear Andy, This is so heartening to read. Im 46 and developed very similar symptoms 18 months ago - I also have three young kids - so as you can imagine it’s been a challenge. I have seen a neurologist and an audio vestibular consultant- both think it’s chronic vestibular migraine and like you I’ve been given Notriptyline. But ever morning, like just now, I awake feeling sick with the room spinning and my head in a blurry intense mode of dizziness, my tinnitus raging. Im dizzy all day every day. I’m absolutely convinced it’s related to my neck which aches all the time. I know that I have some cervical stenosis (impingement on the spinal cord at the neck) and just feel this is a big trigger. I also grind my teeth terrible (despite having a tooth guard!) and think this doesn’t help. I was wondering if I needed to see a neurosurgeon even? But your story of successful physio is inspiring. Can I ask what sort of exercises she was giving you? I wonder if I go back to my doctor and ask for a referral? Any ideas helpful! I’m a positive person and know and can overcome this somehow 🙏🏼Many thanks, Maggie

[VanGoghsEar in reply to ArtyPants46]

Hi Maggie, Firstly I'm sorry to hear you're struggling, it's terrible I know. Everyone's different and, for instance I wake quite refreshed and any symptoms come on gradually through the day. Then again I too have a tendency to clench my jaw, which doesn't help. My wife bought me an orthopaedic pillow, which I think helped. My tinnitus as I write this is raging some, but I'll do my exercises shortly and it will calm down. The exercises I've been given are to stretch and turn my neck. The physio found I was tight or tighter, on the right side of my neck. The same side as my duff ear as it happens. I don't know if this is related though. I couldn't give you the same advice because I'm not qualified and your causes could be different, you could be opposite to me for example. I'd say only an examination by a physio would be able to tell you. But, as a general rule of thumb posture and relaxation I find are beneficial. When I do my exercises I'm relaxed and my back is straight and I'm in a quiet room. I even manage a little meditation. But, with three kids I wouldn't know if I dare suggest you do the same, but if a physio gave you the same exercises, you'd need to. All I can say is the exercises really helped me. Before I took early retirement, through ill health due to all this, I was in a very, very stressful job situation. Sitting at a computer all day hunched, in a busy noisy office. It's taken years, and a good physio, to get that stress out of my shoulders and neck. And it's an on going process. I'm sorry I can't be more helpful, but hopefully I've given you some ideas. Nortriptyline is useful, but I can't wait to be off it completely. My neurologist immediately suggested seeing a physio when I told him about the bad neckache I was having. Maybe your path to recovery lies in the same direction, I hope you do find out and get on that road to recovery soon.

Andy

[Harrier58]

Hi, everyone's story is different and life changes day to day and none of us know what's round the corner. 4 months ago following some horrible episodes of vertigo at the beginning of the year I developed tinnitus on both sides, hearing lose and hypercusis. I felt like my life was over, I wanted to die and actually looked up to see how I could do it. I became shut down, I had no emotions - sadness or joy. I hate taking medication but I was too low to pull myself out of it on my own. I was honest with my family and GP, everyone felt helpless. It's a slow old journey but what helped me was opening up to friends, family and mental health professionals. I started taking anti depressants, paying for private counselling to work on my anxiety, expensive but waiting list for NHS is too long, using and practising the Oto app daily and regular breathing exersices and meditation. I still have all my symptoms but am starting to be able to push them into the background very occasionally. I keep a journal and everyday I do something new or notice something new that I haven't done for 6 months. For me the key was to get my body out of fight or flight mode to enable me to cope with my anxiety - that my tinnitus wasn't going to harm me and that I don't need to be scared if a bus roars up or the washing machine spins. I also avoid googling and forums apart from this one as they can scare the life out of you too. Hope this helps someone who is struggling today.