After some positivity please. Does anyone out there have what I have and managed to survive. Had tinnitus for a few years and habituated easily. Recently due to a cold I have 4/5 tones. Ones musical , it changes in volume and speeds up depending on any external noise and then it sounds like a siren . My white noise is a lot higher now too. It's all I hear over everything. I'm 30. I can just about have a car ride with ear plug as my tinnitus goes wild. It's been 4 weeks. My cold is gradually getting better. I just spoke to my friend on the phone for 20 mins and now I hear very loud siren. Is there a qualified expert I should see? The doom and gloom that this will.never go is upsetting.
Please someone tell me this will settle down
Today I'm missing out on going to my child's birthday party 🙏
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Jamdonut
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As with all T - if a significant change ocurrs - whether due to a recent illness (in your case a cold) or for no reason whatsoever - you should report it to your GP or ENT Consultant or whoever mostly has the reigns of your treatment. That said, it's not unusual for changes to ocurr and they can be for myriad reasons not all of them sinister or worrying. Certainly during and after an illness such as a cold - that directly effects sinus and vestibular systems it would be very normal for you to have extra sensitivity to the T and to encounter changed tones, new tones and unfamiliar modulation of your existing T.
As for positivity - look at this way - you say the T changed on the onset of the cold - you are now recovering and by the same token I would expect the T to fall back to pre-cold levels and sounds. It may take some time for it to do this - so be patient.
I would wait a few weeks to see how that goes - and hopefully clears. Having said that - if the new sounds are growing worse by the day - or the general trend is deteriorating I would not hold on that and seek advice now.
As for more positivity - you say you've had T for a few years and habituated easily. Well, you will again. If you can do it once you can do it again, and again. You can win. The T can only lose.
Keep that in mind during what must be a rough time.
When you say siren, do you mean that it pulses? If so, that sounds like pulsatile tinnitus. You should check to see whether it pulses in time with your heart beat as it speeding up may well be your heart rate speeding up.
I have pulsatile T which is due to a condition called SSCD so I am literally hearing pressure waves from my cerebral fluid as my heart beats.
If your ears or Eustachian tubes are blocked because of your cold, it’s not uncommon for you to be much more aware of internal sounds so, hopefully, it will get better as you recover from your cold.
Upbeat - may I ask how you got diagnosed with SSCD? and is your T purely Hiss with no ringing? Your symptoms chime with mine but i haven't heard of SSCD - a quick Google and it's chiming even more with mine: head trauma from a fall, woke up next morning with severe T, dizziness, vertigo, headaches, brain-fog, etc, etc.
Mine is a cross between a hiss and a ring. I can best describe it as like having sleigh bells attached to the back of my head that are constantly ringing in time to my heart beat. While the T is one of the worst symptoms of SSCD, the others are also quite challenging.
I was lucky to get diagnosed. The first ENT I saw was quite dismissive, did an MRI, told me it wasn’t a tumour and sent me on my way with advice to go to British Tinnitus Association website.
Luckily my health insurance pays for a 2nd opinion so I saw another ENT who immediately suspected SSCD. To diagnose it, you need to have a CT scan (doesn’t show up on MRIs) at a specific angle and resolution. In mine, the holes in the temporal bones were very clear and obvious.
You then have to have another test called a VEMP test as some people have the holes without symptoms. My VEMP test was positive so that was the diagnosis.
Thankfully, there are surgical options which can resolve or improve the symptoms. I had surgery 3 times (twice on one side) and the results were mixed. It improved the symptoms quite a lot on one side but made the other side a little worse. Overall, I’m probably 50% better than I was but still suffer quite a lot. TBH, the T was the symptom that was least improved by the surgery - others such as hyperacusis and autophony were the ones that improved the most.
The challenge you’ll have is that many GPs will not have even heard of SSCD and you’ll also need an ENT who is experienced in it. If you have private medical insurance I think it will be a lot easier to get diagnosed as you can shop around to find a doctor who has the right experience. I have no idea whether the NHS carries out the surgery as I did the whole thing privately.
Thank you Upbeat for that very interesting and informative post. I will investigate further and put it to my ENT guy when I see him in a week or two. All the best,
Hello. I am 49 and suffer from both middle ear myoclonus and mild ringing tinnitus (for over 20 years). Last September I went to see a specialist in Harley Street to have a grommet inserted in my left ear, to help with the middle ear myoclonus. Unfortunately I woke the following morning with horrendous ringing tinnitus in the left ear, like a police siren that wavered in pitch. I went back to the specialist who, beyond an infection, could not explain what had happened. Anyway, after a further week of this hell, he gave me a prescription for Clonazepam which after a few days, pushed the siren noise to the background. I saw a different specialist for a second opinion on what damage had been done to me, and all he could speculate was that the grommet may have been inserted too close to a bone in the middle ear. He suggested I remain on Clonazapam for a few months until the grommet fell out naturally. I have been off Clonazepam for 2-3 months now and the noise is still in the background - although it comes back every time I yawn, which is interesting. The specialist says this is due to the fact I am not as anxious about the situation now - however, I most certainly am! Anyway, perhaps there is some hope for you that this will get better/fade into the background as well - but you may want to see your ENT specialist and enquire about Clonazepam for some short-term assistance. It may not work for everyone and I still wake up each day worrying if this will be the day it has come back. Wishing you all the best.
PS and yes, I felt very much like you did - absolute despair and feeling hopeless about the future. I now just take one day at a time - ultimately, that's all any of us have.
I have just started taking Clonazepam, as it seems to work well for some people in reducing the Tinnitus, for me at the moment, I am a week in and the level is the same at 0.5mg a day. Even at that level it seems to make me very sleepy!. What Strength of Clonazepam did you take to start with ? , some people say, taking it long term helps, but, I it takes a few weeks to work & for others, it makes no difference.
Hi Dazza, I started off on 0.5mg for a month, then the consultant I sought a second opinion with upped that to 1mg for a few months, then I slowly weaned myself off it. I am used to taking prescription medication so it did not make me feel sleepy at all, but it's a common side effect. The siren-like tinnitus is still there for me, so whatever that first consultant did to my ear has not been cured, but somehow it has been pushed to the background - whether that would have happened naturally over time I have no idea. I doubt it!
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