Can I ask this group whether anyone out there has a pattern of one day FULL ON TINNITUS and the next day NO tinnitus.
I have been having this pattern for months now and the TINNITUS day is gradually getting worse and almost unbearable.
I have tried lots of strategies and really only want to know if anyone else has this pattern.
Thank you in advance
My normal hissing tinnitus is there permanently but my pulsatile tinnitus comes and goes.
That does sound extremely strange . I think you should ask your GP to make an appointment at ENT . Mine is better in the morning and worse by the evening . I do get better days and then awful days . But can’t say a day with nothing . This tinnitus is a very odd subject
Many thanks for your reply I appreciate it
Hello, I have just joined this forum, and find a question that I can answer.
I have suffered from T for more than 20 years. For most of that time this was precisely my own pattern. Day on / Day off - regular as clockwork, with nothing I could do make the silence last longer. Very difficult to mask by external sound when On. Completely silent when Off. The ENT I consulted when it started was surprised, saying that it might make habituation more difficult. He was right, but of course the 50% silence was a boon.
Unfortunately, in the past few years as the T has become more severe (probably due to age-related deterioration in my hearing), the pattern faded away, but I can still have the occasional entirely clear day. In my case that is strongly related to concentration on some other problem . I can't make that happen. I can't tell myself that " I will now concentrate on X for a while and the T will go quiet", but if genuinely I do concentrate on something, it may work. T is so unpredictable.
Thank you so much for your reply. At least I know that someone else had the same pattern.Like you say you tinnitus is so unpredictable and whilst I don’t think I am consciously thinking I will have a good or bad day nothing seems to change the pattern.
Many thanks for your reply I appreciate it
When mine was so regular, it was very rare for concentration to have any effect. That has really only emerged as a significant factor as the predictability has faded away.
Many thanks for your reply I appreciate it
Hello - I can relate to what you are saying to some degree. I have musical tinnitus. Some days it is horrendous with the same repetitive inane music which is very loud. The following day will usually be much better although I never have a completely silent day it is bearable. I can’t control or change what I hear. The annoying part is that I can have a quieter day but if I happen to doze off during the afternoon, even for a few minutes this can affect the noise level upon waking. On a really bad day I take 2mg of Diazepam. This does help me. My tinnitus is much worse during the evening when the television is on. Yesterday was the 1 year anniversary of me getting Labyrinthis and losing the majority of hearing in my right ear. The musical tinnitus started a few days later. I don’t think I will habituate now but I am learning to live with what I have although on bad days it is hard to come to terms with it.
Are you on the diazepam permanently thanks 🙏
Hi - I have it on repeat prescription although do not take it daily. It is a low dose of 2mg and I can take up to 3 a day although only ever take 1. The note on the box says for “agitation/anxiety which is what I feel when my tinnitus is really bad. I suppose I average 1 about every 7 - 10 days. I don’t want to become reliant on them. I try distracting myself wherever possible but for example we are having a new kitchen fitted at the moment and are experiencing so many problems so my tinnitus is through the roof. My G P had never heard of musical tinnitus but is being as supportive as possible.
I am a good example of the efficacy (at least initial efficacy) of Diazepam. A few years ago I hurt my back, which went into painful spasm. Diazepam was prescribed to relax it. I had no idea at all that it could help with T. Mine went silent on taking it. I was astonished and mentioned it to my GP who did not know about the effect either, even though his first degree was in pharmacology. A year or two later I had another spasm, and another very short course of Diazepam. Sadly this time it had no effect - probably because I was expecting it to.
Many thanks for your reply I appreciate it
Hi RiverdaleI have had tinnitus for 4 1/2 years now and I completely relate to what you’ve asked here, hence my tag name some days better! I can have days where I have no tinnitus at all and then after those days it is loud again. And then gradually drops away and then rises up. During the past 18 months however I think probably driven by pandemic and other stress related life challenge, the pattern changed where I have less good days, and the loud days are more regular and louder. Nobody has been able to give me any insight into why this might be and again during the pandemic it has been impossible to get an ENT appointment. I went privately and even there got no answers.
If you ever understand how to positively impact your pattern I’d be very interested to know.
One thing I can say that might help is I am really aware that my stress definitely impacts my capacity to focus on or away from tinnitus regardless of how loud it is. Anxiety absolutely exacerbates it and brings it into the forefront of my mind. However I do want to reiterate that on the days that I have no tinnitus it isn’t about anxiety it just is a fact that there is no tinnitus which I find extraordinary and beguiling as how can it be that you can have no tinnitus one day and the next day super loud 🤷🏻♀️
Good luck with it all .
Yes I have had this weird tinnitus for 5 years in the early days 1st day quiet loud 2nd day much quieter third day almost quiet then the next two days silence that's how it went on for two years then it all changed 1st day loud 'ish 2nd day quieter then 4 to 6 days almost silence went on like that for another two years now its still with me but i woke one morning had breakfast went for a walk then I realised it was still with me but I had not heard it my mind had put it to one side I then thought to myself if I can do that for five or so hours I can do that for a day from that day on my life changed, yours can to but it takes time your mind will do the same thing mine did THIS is for all you sufferers out there keep taking one day at a time you will get there. In the early days for the first time in my whole life I felt like ending it but I did not take the easy way out now I am glad I did'nt
Yes I have this, and have had for over two years. In fact when it's a bad day I look forward to the next day because there's at least a 50/50 chance it will have declined substantially. Last Friday was one of my best days - to the point where I would have said I don't have T. The next day it was back to usual and the day after a bit louder again. But I know it will decline in the days ahead.
I've tried to work out what causes the peaks and troughs - diet, stress, exercise, external noise etc. But there seems to be no link.
Also I can't reverse it during the day I have to go to bed and sleep for it to decline.
You have described my tinnitus precisely! It is so annoying that one has no control whatsoever on the levels you will get each day - apart from stressful days when it really has a field day!
Hi Riverdale
My Tinnitus never goes away, just like rabbits65 as said some days it does not bother me much and then other days it is a struggle to cope.
There is no set pattern for us Tinnitus sufferers, it`s a weird condition!!!
As others have mentioned there is no set pattern with T. Mine has a mind of its own. Many days quiet but as I have a cold currently, that might be reason for the noise. Although in my case it's fairly quiet so I count my blessings I've even through 6 to 8 days of nothing then it might come up again then settle. It’s very unpredictable.
Hi. Yes, I have a pattern on my T. I started to have T about 5 years ago. I started to realize that it is actually T 2 years ago. I got days with T and no T, especially two days apart. If I have a power nap in afternoon(even short one), I get a loud T and it ll last till 2 day later. Then, no T for 1-2 days, depend on level of stress. If the day are very stressful, I guarantee to have T in the morning. The volumesis increasing gradually. If I overthink, overdo or doing the new activity at last minute(like going out), the volume goes up. If the volume is too loud and bothersome, I just go to bed and lay down and relax. My mind needs to be quiet. No screen time, reading or watch tv. Kind of mindfulness activity. Helpful but not get rid of T. I need to wait till next day or 2 to have no T day. I keep journal on days with T or not on app. I even make plans based on days without T. If I want to guarantee a day without T, I have to avoid taking power nap. If I want no T on this specific day(2-3days later), I induce myself with T by power nap. So no T on special day. It s kinda crazy. But, nothing I can do. I do notice that T get quiet if I focus on something deeply. But not guarantee. There s many rules and stuff I handle on T. Also supplement to take on daily basis and med to take if necessary. I guess to live with it. Hopefully, it gets better in the future.
It's called intermittent tinnitus and it's very normal. Sadly, the norm is that as time goes by we will have less good days. Let's hope we are not the norm and we can keep the good days. 🙏
Hi Riverdale. This is my first post here but I couldn't pass up the opportunity to assist as what you describe is close to my own experiences. I have had a high pitched hiss on the left side of my head for about four years-annoyingly loud at times.In my view sleep seems to be the key factor. If I wake up silent after a night's sleep then as long as I don't doze off again and get up I will be silent all day. Likewise if I wake up noisy that will be with me all day. I usually find that if I have a nap during the day invariably I will wake up with the opposite of what I had before the nap, but not every time.
The only suggestion I can offer given my experience is that sleep is triggering something that is switching the tinnitus on or off. Maybe it's to do with the sleeping position and perhaps how the neck is aligned when asleep. Unfortunately I haven't really been able to test this as you cannot really control your position when asleep but I think there is something in this. Quite often I might wake up silent for two or three days in a row, and of course I can also have a number of consecutive noisy days.
Hopefully this helps. What I have learnt is that you should take advantage of any silent time you get, but I appreciate that that is not always practical when you wake up silent at 3 am. Best wishes.
Interesting that sleep changes your level of T. Mine too. If I fall asleep during the day on a chair my T will be screaming loud when I wake up. I’m afraid to take a nap now. Also, mine seems to be in about a five day pattern from low to high and back again, unless I doze off them it always increases dramatically.
Hi there Riverdale, ive had T for about 5 mths. I get days where its totally absent, days where its a faint whistle in the background and days like today where its just awful high pitched whistling. Its just so unpredictable.Regards
Tim
Yes I have something similar - louder one day - more bearable the next. I think maybe it has something to do with varying sleep quality? Also just wondering- I don’t normally get tinnitus impinging on my dreams - so at least my mind filters it out then - is this your experience? It would be good to harness that filter during waking hours but Tinnitus is there when I fully wake up & the level of tinnitus upon waking is a good predictor of how it will be for the rest of the day.
If T often varies from day to day for people, you’d think it’s common sense that sleep is somehow involved - would be good to get some research on this 😊
I have pulsatile tinnitus and it comes and goes. It is only in my left ear, I do not have regular tinnitus. I have had it for about 2 years and the long-term pattern seems to be that it is getting better not worse. I have the triggers down to 4 possible things. 1. neurological- Just like people who get migrane headaches we randomly get this. 2 Auto-immune-Just like with MS patients get random good days and bad days when there immune system flares up. 3 Digestive/reflux disorders- this is the only ailment I have and I do find certain foods bring it on, almost as-if the reflux has opened up something and now I can hear into my body cavity. 4. A harmless vascular connect somewhere- something is touching something and the sound is traveling, these contact points can move around and change, thus "on" and "off".
I have lost weight, had my wisdom teeth removed and been checked by every DR you can imagine and I'm 100% healthy. Of these 4 I actually think it's just a weird neurological issue because its just so random and I also find dreaming brings it on as well. I'll wake-up in the middle of the night and its pounding sometimes.
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