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[AV82]

Hi folks, been diagnosed with T for 2-years now. Constant ringing causing insomnia, dizziness, nausea and affecting balance. Been seen both on the NHS & Privately but no change and at my wits end with it. Affecting both work & social life. Any recommendations greatly appreciated 👍

[Suz_2]

hi I have had T for just over 1 yr now - I have done a lot of online research because i am retired and i have the time to do this and i try to put into practice what i have learned , but i do have slip ups and many setbacks, and spikes along the way - You probably already know much of what i have written below as u have had T for 2 years - has it been constant , like u say , over these 2 yrs?

we have to try to mange the T and that involves :

Reducing ANXIETY ( which makes T worse) - try the OTO app therapies for T.

FOOD & DRINK - attention to yr diet - cut caffeine and drink decaf coffee/ tea . Reduce chocolate as that contains caffeine, but i still have chocolate but not as often as before - reduce salt and choose foods which are low salt ( or no salt if poss) - avoid alcohol - read food labels and try to avoid food and drinks with too many artificial additives: Sulphites are one of worst culprits . I had really awful spike this week because of sulphites in a M&S Elderflower drink. another spike that I had recently, was because of eating raisins coated in sulphites

SUPPLEMENTS - try Vit B12 / Magnesium L Threonate - buy supplements which are free from additives , as many additives in supplements (top brands and H&B) can aggravate the T

MEDICATIONS - Are u taking medications for the other symptoms/conditions? Just take those meds which are absol necessary. I have read its best for T sufferers to avoid ibuprofen and aspirin (if possible) and take paracetamol instead . Also avoid Anti depressnts if poss.

SOUND THERAPY - Sound therapy and Hearing Aids ( if u hv hearing loss ) works very well for many, but i have prob with it myself

INSOMNIA - i would avoid medication for this if possible . The only way i can sleep thro my T is by being tired and to be tired at bedtime i need to walk every day for at least 30 mins. Walking or other activity helps , which u may already be doing.

hope this helps with the T and the other symptoms - have u been referred to ENT/Neurologist because of the other symptoms that u mentioned ?

[DR650SE in reply to Suz_2]

Hello Suz 26

I saw your positive comment about the Oto app

It is quite expensive but obviously you think it is of value

Just wondering why you like it please?.

Thanks

Peter

[Suz_2 in reply to DR650SE]

its packed full of all sorts of practical therapies ( CBT and other) for T , many of which i was not aware of prior to this - its £20 per month - which is not bad - u can stop the app once u have learnt the therapies and info ( or cancel anytime) . There are other providers offering these therapies for a much higher cost with a much more long winded process .

These therapies are worth a try, as it involves neuroplasticity diversion from the T.

I saw a private CBT therapist for 3 sessions which was very expensive and not tailored for T, and didnt give me any therapies to apply - so compared to this the OTO is good value and u can implement the therapies really quick.

[TinnitusUKPat Partner]

Hello AV82

Just my two pence, but when people are experiencing balance problems, nausea and tinnitus at the same time, I wonder about inner ear disorders being present.

Some resources to look at -

menieres.org

vestibular.org

and the exhaustive and singular writing of Chicago-based doctor, Timothy C. Hain, MD at dizziness-and-balance.com/i...

[Happyrosie]

and just one other thing - it’s I portant to keep drinking water. When I had bad bouts of dizzyness the ENT consultant explained to me very clearly why this was vital. I’ve completely forgotten his reasoning, just that I do it je to drink plenty of water.

Personally I don’t find that keeping caffeine consumption low makes any difference (though I only have ever had a cup of anything with caffeine in it a day). Id say low alcohol rather than none at all.

[Fridays_Child_62]

Some good advice given above but I think we can be quite different in how we struggle and cope with T. For example, the way caffeine and alcohol affect (or don't affect) T is probably dependent on the individual. Medication is probably something to consider - do you take regular medication for something else that might be causing this condition?

In terms of going to sleep, some people use sound to mask their T but I have found distraction more fruitful - that is, to distract the mind away from the T. I may use a sound machine to play a soothing background sound, such as waves on the shore or a campfire. Or I may distract my mind with a trivial and repetitive mental task. They say counting sheep can send you to sleep but I count backwards from 100 - losing track of the counting is a good sign. But I may try to relax myself first and I originally tried a guided relaxation download in which you are told to relax different parts of your body in turn - I eventually found that it can be as effective to instruct myself through the sequence.

If you have dizziness and nausea along with your T, it would be worth investigating vestibular disorders. This page from the Menieres.org website is useful in describing the various conditions - click on the links on the right to see each condition in detail. You never know, the consultants you've seen may have missed something.

menieres.org.uk/information...

[ArtyPants46]

I have had very similar over the last 18 months and a year ago the ringing, dizziness and nausea were unbearable. I have come a long way. The symptoms have dampened slightly and I have got used to some of them. My diagnosis from both NHS and private docs is chronic vestibular migraine but my symptoms very much overlap with Ménière’s symptoms so I’m always worried hearing loss could follow (I have a bit but not low tones)…the main thing is to keep calm, be healthy (water, sleep etc) and carry on. Sickness meds when the nausea is bad. If you are in London area I’m happy to share my very good private vestibular doctor’s details. She’s brilliant.

[Nathalie_007 in reply to ArtyPants46]

Hi, would you be able to share your vestibular

Doctors details

Please? Many thanks

[camino9]

Hi AV

I really feel for you. It is so terribly hard.

I was already somewhat of an introvert, but with the onset of the mighty T I am decidedly not social. Yes, a modern-day hermit. My nervous system needs so much quiet. I imagine it would be really tough if you were a natural extravert, needing the presence of others in your life.

I think the posts here are really good: wise, helpful, and informative.

Nothing to really add. I know you experience dizziness, but when it is possible, the simple act of walking seems to soothe the parasympathetic nervous system and helps balance the body and mind. Time spent in Nature is medicinal and also of comfort.

Go gently with each day. You will find what works for you and what does not. I find my journey with T has taken me to the depths of the soul....not an easy journey....

Ultreia! (the medieval pilgrim's cry, meaning onward with courage).

[Beagleears]

Hello....all of the above but after 2 years of suffering with terrible vertigo and off balance issues my GP gave me 3x8mg betahistine. I haven't had any vertigo problems/balance issues for the last 6 months and have even started to do a pilates class again. I still have tinnitus and problems with blocked ears but overall I feel a lot better in myself taking this medication has really worked for me.

[Mat189]

Hi. Firstly everyone on here may not agree with me but I’m only talking from my own experience.

About 3 years ago I started to get nausea, dizziness, T and tiredness. I went to 3 ENT specialists, doctors, chiropractor and audiologists. No joy.

I then read about Upper cervical instability. Google it. It’s about you C1,C2 on your spine. The chiropractor was always cracking down my back and not my neck.

I went to a Osteopath and after one session in my nausea and dizziness went away. Please note my T still here but my nausea was really affecting my life and much happier now. Hope this helps but I know it’s not that same case for everyone.

[ETHEL103]

Be interested how i get on today with a gp call.Not expecting much help but i want to be referred on .Hope you get some advice on here.

[ETHEL103 in reply to ETHEL103]

Morning further to my gp call yesterday from a hub doctor not my own gp.He gladly refeffed me on to ent.The wait begins and the tinnitus still there .

[AldoArgentina]

Hello! I had loud T for years, with crazy spikes, until I began to take all of this:

1.- Passinflower plant at night before sleep, but you don,t have to take medicine for sleep! 

2.- Magnesium L-Threonate (only this Magnesium works well with T.) five hours before sleep.

3.- GABA with Gingko Biloba before breakfast and three green tea Matcha per day.

4.- Control your blood pressure and detects if you snore.

I'm sure in a month you’ll be much better!!

[Suz_2 in reply to AldoArgentina]

can i ask , where u get yr GABA from - is it additive free or low additves

[AldoArgentina in reply to Suz_2]

Yo can find it in a diet store or Amazon, and there are additive free.

[Suz_2 in reply to AldoArgentina]

hi Aldo - can i ask , which one do u buy?

[AldoArgentina in reply to Suz_2]

Hi, Pipin Rock Usa, 750 mg. But perhaps others are better, I dont know!

[Suz_2 in reply to AldoArgentina]

thnx Aldo, I would think its the Gaba which has the most effect. I am looking for one with no or low additives

[AldoArgentina in reply to Suz_2]

If I could give you one bit of advice, i would tell you tea matcha and passinflower are really important for brain.

[Suz_2 in reply to AldoArgentina]

thnx Aldo

[Suz_2 in reply to AldoArgentina]

hi Aldo - I know that normally Matcha Green tea is really good for people but it seems to be higher in caffeine than other green teas and about the same as black tea - and as we know, caffeine aggravates the T. I am at present avoiding all caffeinated drinks as it pushes up the T, although I a drink de-caffeinated tea and certain caffeine free herbal teas

[AldoArgentina in reply to Suz_2]

Hi!! How are you? Yes, you are right, but read this (there's a lot to read in the web). It's your decision if you want to try or not. matchakonomi.com/blogs/news...

[Suz_2 in reply to AldoArgentina]

thnx Aldo - yes, there are lots of benefits to matcha green tea - i suppose some T sufferers are affected by caffeine and some are not affected - its whatever works for each person . I shall try the other supplements that u mention - thnx

[AldoArgentina in reply to Suz_2]

But you would add L-Theanine to replace matcha. Best wishes!

[Suz_2]

I dont have the range of symptoms that u have as I only have the T now . Someone on this forum recommended this book too me, a few months ago - Rock Steady by Joey Remenyi (Vestibular Audiologist & Neuroplasticty Therapist) - healing vertigo and tinnitus (and certain other vestibular) with Neuroplasticity - which helps to reduce the volume and intensity of T . I am intending to buy this as well as Rewiring Tinnitus , esp as these books have summary section after each chapter. I just hope these books have the practical exercises and therapies and not just the theory and bumff - we shall see.

I think Neuroplasticity exercises and therapies is the way forward for me because i have problem with hearing aids and sound therapy as my T is reactive to sounds and goes up in volume .

The OTO app for £20 per month is very good and gives instant access to a range of CBT and other therapies and sounds especially for T - these increase the neuroplasticity diversion from the T.