Living with Long Covid but now Tinnitus too!

[santosha72]

Hello everybody, I am new to this site today and have spoken to a very helpful gentleman on the helpline. I have had Long Covid subsequent to catching Covid in April and November 2020 and January 2022. One of the major problems for me is fatigue which is very debilitating. I usually have nausea with that and dizziness which has caused balance problems. I have today been diagnosed with Tinnitus and told by GP likely have BPPV too. Am awaiting to go for blood tests and audiology referral being done. Looking forward to learning more on this site and supporting others, where I can.

[rabbits65]

Welcome to this site I think you will like it here. Sounds like you have everything you’re doing in good control. Good luck with your tests.

[santosha72 in reply to rabbits65]

Thank you so much rabbits65. I have had major bowel problems since covid (I'll spare everyone the details ) and am on a 57 week waiting list to see a surgeon but lost my job as a nurse last year due to continued illness. 🙃 Weirdly, I kept putting the dizziness and nausea down to my bowel problem which is relentless but realised just in the last week that it coincides with the fatigue and only when I lay my head down - hence the BPPV diagnosis. The tinnitus started on 23rd Dec 23 and has been constant since then. I think this site will help in trying to find answers to learn to live with it better than I currently am 🤔🥹 and I appreciate this and others' sharing their experiences ❤️

[rabbits65 in reply to santosha72]

I find that going out for long walks helps me with my two poodles. Listening to outside nature etc will help you to relax. You say you have relentless bowel issues. I too have ongoing bladder issues. All this sort of stress makes tinnitus react more. Try and relax if you can.

[santosha72 in reply to rabbits65]

Thanks Rabbits65. I'm lucky that I have a big garden for my small dogs as cannot walk much now and use walking sticks. I have four different bowel conditions and none of my 8 medications for that work as all contra indicated as they're opposing treatments. Its only surprising its took 3 years for T to appear 😔 . Have found watching comedy type programmes helps me relax, music and being in the garden. I'm thankful for the support I get from my LC clinic as its affected most systems of my body - especially as funding for that is being stopped soon and not being offered to future patients. I need to read about the habituation that I've seen mentioned on here as don't quite know what that means 🤔. Take care and thanks for your reply 👍

[rabbits65 in reply to santosha72]

Just seen your reply , how are you now? Yes habituation just really means that we usually find that our bodies and mind adjust automatically to the tinnitus in the end, in other words our bodies accept tinnitus as a part of ourselves. If that makes any sense. Yes where would we be without our lovely dogs. I really love my two dogs. I hope you find my reply.

[Bellyboo]

Hi Santosha. My own T goes extreme after a covid vaccination and I’ve had 3 in total so no more jabs for me. My wife also has long covid which we attribute to the vaccine and I’ve watched her deteriorate in the last year with her lungs shot…indeed that’s the reason we are presently in Tenerife where the climate is marvellous. I’m not altogether convinced that T can be blamed on the ears, I also believe it’s neurological in my case though I did abuse my ears up until I was 50 or so yrs old. I now wear ear defenders just for chopping up kindling.

Best of luck to you

[santosha72 in reply to Bellyboo]

Thank you for your reply Bellyhoo and your good wishes. I'm sorry you've had that experience and your wife too, it's very debilitating and the various symptoms can be very distressing. For me, LC has turned my life upside down and I'm still trying to accept and adapt to the negative changes to my life. T seems just another thing to contend with but incredibly annoying especially with the BPPV symptoms! I'm glad you're in Tenerife and hope the change of scenery and climate is helping you both. I'm part of a Long Covid support group which I've found helpful but also been referred to Liverpool Pyschotherapy Unit with weekly Teams meetings to adjust to life with LC that's over 7 weeks but their funding finishes in March. I was only referred to a Long Covid Clinic in summer of 2023, despite asking for 2 years, but better late than never. I've not had my vaccinations/boosters (flu/pneumonia or covid) in late 23 due to illness and the jury is out whether I have them or not. Very best wishes to you and your wife.

[Dazza2024 in reply to Bellyboo]

I had very low tinnitus, I could hardly hear and then I had the Astra Covid Jab and reacted badly to it, I had severe Tinnitus within a few hours of the Jab and Fuzzy hearing & Dizzy Spells & really bad headaches for 2-3 Weeks. The Brain fog lasted for months and I think I still have it, I then had the next 2 Covid Jabs and the tinnitus was low as in the past, I didn't seem to react to it, then last year, the tinnitus went a bit louder, then 3 Months ago, it went really loud, above the TV noise level, so I cannot block it out easily & I also have a hyper active burning & stinging pain, like small electric shocks into my ears. My Regular hearing test is good and I think my main tinnitus is at the 12-12500 Hz level which I can't hear above that frequency, but, at 50 Years old, that is often our limit also. The wait in my NHS is 6-18Mths at the moment, even flagged, as Urgentish, due to the impact of it. In my younger years I did also abuse my ears with no problems and everything was fine until a few months ago, in what seemed like I had been in a Bomb Blast to change my hearing feeling & tinnitus. The point I was coming to is the Covid & the Jabs & I do wonder also if other people are reading the replies, has this done any damage to our brain, to then cause the future tinnitus issues, There is a lot of talk about this in USA and how a lot of the Tinnitus is in the Brain & Neuro and the same pathways, that Covid & the Jabs could also have done some early signs of damage to then come earlier as we age, including some people they have had instant ear damage from Covid and the Jabs and the tinnitus has not recovered.

[doglover1973]

Hi santosha72 Welcome to the forum. I'm sorry to read of your health struggles. I've had post viral fatigue for over 20 years and T for 13 years. It's not easy to manage chronic fatigue and T because you can't use all the techniques a well person can. I use relaxation techniques and natural sounds - neither of which take too much energy. The nausea and dizziness may be to do with your ears. It might be an idea to ask for an ENT referral first.

[santosha72 in reply to doglover1973]

Hi doglover1973 thank you for your reply. I asked my GP for ENT referral but told audiology first but I might still challenge that, I'll find out what the waiting list times are for both. I had surgery on both ears in 2012 for necrotising otitis and had T then for c a year prior to surgery, that was like a drill but in ears. The sound now is so different - like a radio interference when it's not tuned and constant but mainly in head and sometimes in right ear. High pitched but not terribly loud but could drive me mad but i shan't let it!! I suspect GPs probably right re BPPV (benign proxysmal positional vertigo) and, looking on the bright side, I only get the nausea and dizziness when laying down then to getting up/initiallymoving. So if I don't lie down I'm OK.... but need to cos of fatigue! It's so far, completely predictable so I've not had the dizziness/nausea at other times. I'm still learning/trying to understand the techniques re the fatigue but a psychotherapist said what you did about the techniques at my Teams meeting today. I very much appreciate your thoughts 🙏 take care.

[doglover1973 in reply to santosha72]

It's important not to overdo it. . Are you familiar with the concept of pacing to manage fatigue levels? It's popular among the CFS/ME community but it's relevant to anyone with post viral fatigue - including Long C. There are various books on the subject. I recommend the Long Covid Handbook by Gez Medinger - if you haven't read it already. He's got long C himself.

[santosha72 in reply to doglover1973]

Thanks very much. There is no danger of overdoing anything 'unfortunately ' and I have no choice but to pace 😟🙂 I'm lucky to be under the care of a LC clinic, a lot of people are not so fortunate. I've got this book and thanks for the recommendation though - Professor Danny Altmann has co-authored it (Prof of immunology at Imperial College) and its imo, the 'bible' for LC. I won't go into all my symptoms/diagnoses here, that would be a book in itself, but one is dsyautonomia where my temperature and blood pressure are not consistently regulated, even when I'm relaxed. Even though I only got diagnosed with LC last year, I'd strongly suspected it was that and have had nearly 3 years now to 'learn' how to manage it. With such a multitude of symptoms though (at least 15 and many simultaneously), and medications, it is, and probably will continue to be, a challenge. I am a work in progress as far as accepting and adapting to my life with this and not yet prepared to accept that this is 'my lot ' 🫠 Most of the support I get from healthcare professionals is very good, some not so and shows their lack of knowledge/understanding and luckily infrequently, lazy thinking. I'm grateful to be here though and have my dogs who are my life 😍

[doglover1973 in reply to santosha72]

It sounds as if you've had a good experience in terms of health care. It's not easy living with a long term health problem - especially if you have multiple symptoms. I do too. Acceptance will come and with it hope. That life won't always be this way. There is considerable research going into Long C which will hopefully benefit anyone with a post viral illness. Whether they've had it 2 years or 20 years. Dogs are wonderful!

[santosha72 in reply to doglover1973]

To be fair, I have in the main, apart from only after changing gp was I referred to LC clinic after 2 years of asking. Was told 'oh your lungs are not that bad' 😂 notwithstanding my heart/brain/joints/bowels/eyes are 😂. There's not a not left that's good/fully functioning. Had a major loss of sense of humour this last year or so but that's coming back now with encouragement from my mind 😀 and that was mostly big impact losing my job. Big responsibility too having 4 dogs one's 8 years old his 2 sisters are nearly 7 and brother in law nearly 7. They keep me sane or at least insanity at bay as they can't look after themselves. I'm awaiting a PIP tribunal after applying Aug 22 (not for T). If I lose I'll apply again and another c 2 yrs of waiting but I'm quite pragmatic about that now there's only so much one can stress about.

[doglover1973 in reply to santosha72]

I'm sorry you're having such a tough time with your health. You'll get better at coping with the changes ill health brings over time. One day it will be second nature. I'll be surprised if you don't get PIP but it's a bit of a lottery at times. How lovely to have four dogs. I bet they're great company 🐶🐾

[Happyrosie in reply to santosha72]

As far as PIP goes. I applied for a family member in March and was turned down in October. Challenged and was turned down again. Said we would go to appeal /tribunal. and it was allowed at the highest rate.

This was for another condition though.

[daverussell]

Take a look at Ménières.org.uk. menieres.org.uk/information...

[santosha72 in reply to daverussell]

Thanks so much yes I'll take a look at that. I went on their website yesterday but can't remember now so I'll look again. Appreciate you sending me the link 🙂

[Happyrosie]

along with what’s been said. BPPV should eventually go away on its own but you can be prescribed a travel/sickness type pill which helps a bit with symptoms.

Search for ‘vestibular rehabilitation exercises’ to help train the brain to believe your eyes and not your ears. Only do the sitting down ones.

Habituation to tinnitus can take quite a while- especially when combined with anything else - but does happen.

Any specific issues about T : do keep posting and we’ll do our best to help even though it might only be sympathy.

All the best

[santosha72 in reply to Happyrosie]

Thanks so much Happyrosie I really appreciate your reply. I'll look at the vestibular rehab exercises and need to look up the habituation as don't understand yet what that is. I declined anti-emetic due to the side effects as I already have some of those due to LC. Its a very friendly and supportive site and I do appreciate very much everyone's advice and comments. My posts are probably a bit too long - I need to be more concise 😅