Is Your Tinnitus Quieter First Thing in the Morning?

Hi Louise,
Perhaps we could find out if there is a link between the way people got their T (if they know) and the way it acts from day to day (ie. constant or changes with very quiet days & very loud days).

Mine changes and I didn't get mine from noise - I thought it was from sleeping in a silent room for three weeks but over the months I'm now less sure of this. Could have been from neck/jaw, ibuprofen (rubbed on knee twice) or from doxycycline (2 courses 4 & 5 months before onset of T).

 

Hi Click,

Yes, I'm sure the cause of the T has something to do with how it reacts and more importantly to what will work to 'cure' it and what wont. I wouldn't think that the people who's tinnitus comes and goes have the overactive synchronous neurons theory as the cause? Because a neural pathway wouldnt come and go on a daily basis would it?

Doxycycline comes up as an ototoxic drug in Google so perhaps it was that in your case? I got some Amitriptyline from the doctor on Friday and took one for two nights before I read about it being ototoxic. I'm not going to take any more of that now.

I will have had T for 12 weeks on Friday and it feels like years. Im so tired. I dont know how I'm going to cope with another 12 weeks of it let alone a lifetime. I had more hope of a solution in the first weeks too, but now having tried some things hope has begun to fade. I know most other people on here are going through all this anguish too.

Louise.

 

I know exactly how you feel Louise - I really do. Exhausted by the noise, the worry and wondering how on earth you'll enjoy things again.

My first few weeks were unbearable and the whole of the first 2 months were really, really bad. I couldn't even think straight and I kept clinging to the belief that it was temporary and that it would go away (the ENT I saw said it would - poor man probably wanted to give me hope). I suppose I'm still clinging to that after 5 months.


But I decided I needed to work out a 'coping strategy' and I think I'm gradually getting there - although if you asked me on a bad day when it's screaming I'd say I'm not getting anywhere!

I agree about the overactive neurons theory - I can't see how anything can disappear (I had quite long periods without any T in the middle of all this) completely or go right down and then up again 2 days later if caused by that. I don't understand how neurons work & I know the brain is complex but my brain activity doesn't change that much from day to day! I think the intensity of T is probably caused by something much simpler - like air pressure fluctuations or ear fluid malfunctioning somehow.

I want to say 'stay strong' - 'hang in there' - it does get better but I'm not even sure that the T does get better - just your ability to cope with it. I've had T about 12 weeks longer than you and I really do seem to be able to think more objectively about it. I suppose it's like anything that doesn't kill us - our brains try to cope with it?

Another pack of vits/minerals arrived this morning - selenium this time - and it will go into the cupboard unopened because I'm too scared to take anything - crazy.

My latest trial is to figure out if bending my head forward washing my hair makes it worse & also to eat loads of natural anti-inflammatory foods (like fresh pineapple). I suspect there's something inflamed somewhere !

hope you're ok today - Click

 

Louise.. by the way - I have claustrophobia too & I had what I believe were really bad panic attacks in the first few weeks. Shaking from head to toe uncontrollably, walking around the room not knowing where to put myself all day and night - total despair. You're definitely not alone in this. click.

 

Thanks for these two posts Click. I will remember at night when Im on my own and it seems like the end of the world that there are other people across the country feeling just the same and going through exactly what I am. Its somehow comforting to know that.

What's really got me is that 3 weeks ago it got a lot worse. It was the same for 9 weeks and I couldnt hear it at work in the office all day so could almost forget it. But now I can hear it all the time, no rest from it at all. That happened after I went to the theatre. I just didnt think for one minute the theatre would cause a problem. It just shows that after acoustic trauma the ears need to be completely protected. If that hadnt happened I wouldve ended up coping with it I think because it was 'only' an issue at bedtime mainly.

There's a saying 'You can get used to anything'. I hope that applies to T. You are so right about needing to have a 'coping strategy'. Mine was the trying out of different things to help but now I feel tired of that after having one disappointment after another. Maybe I will now have to open the TRT book I bought in week 3 and make that my strategy Cheaper at least

I hope that your ENT man is right.

Take care and I hope you have a quiet day

 

Me again Louise,

I bought the Jastreboff TRT book a while ago - read it all and am trying to follow what he says. Have also moved back to Hampshire from Cornwall (air pressure change.. now back at sea level) and am going to try and find a therapist that has been trained in the Jastreboff method - if I can! Many of my friends think what I've done is drastic (T has cost me a small fortune so far as I'd only bought the house in Cornwall 3 weeks before T onset) but then, they haven't a clue what this does to you.

You sound like you live alone Louise. So do I and I'm self employed like you. I often wonder whether living in a house full of people helps with T. My best friend 'rescued' me when I was really bad with this - 3 weeks after it started. I stayed with her in France for almost 3 months in total. Her daughter & 2 year old granddaughter live with her - and they have a dog. A very noisy household. And, although the little one's screaming really hurt (I had hyperacusis pretty badly) and every time the dog barked I jumped, I really do think that it helped to have the hustle and bustle around me. I've never had so much ear ache and so many head aches but I'll be eternally grateful to her.

I've even thought about getting husband number 3 - just because of T (but please don't tell anyone ) .

take care
x
ps. I'd have loved to have seen Phantom again - saw it years ago in London.

 

Perhaps the 'Taking a Spouse' will become a popular tinnitus therapy in years to come? At least we havent lost all of our sense of humour.

The TRT book I have is the Jastreboff one too. I'm going to apply myself to that from now on.

Yes, I live alone. I used to enjoy the peace and quiet of that Being self-employed is a big worry - the whole 'what if I cant do my job anymore' thing. Plus I'm a computer programmer which means I have to concentrate a lot! Luckily this contract Im on at the moment isnt at all demanding.

I can fully understand anything anyone does to alleviate this thing, house move, husband aquirement, anything I myself have a last ditch plan that will cost 6k (which I dont have). It would be money well spent if any of it worked wouldnt it?

Phantom is my all time favourite production. It came to Leeds, near where I live, and it was SUPERB. I really enjoyed that night, not knowing all along I was making the T much worse. I wont let it rob me of the memory of how good that show was, how gorgeous the orchestra sounded and how much I enjoyed it.

Feeling stronger from having talked to you

xx

 

Gosh - this is getting eerie.. I'm a computer programmer too & love my work. I also absolutely loved being alone before the T - hopefully will again soon! Do you think we've overworked our brain cells and they just need a good long rest? I know exactly what you mean - those first few weeks terrified me even more because of the self employment.

Really pleased that you enjoyed the Phantom Louise - I'm jealous I absolutely adored Michael Crawford when he was in it. Love Les Miserables music too (also love Hendrix though so pretty varied tastes here!).

Going to try and reduce the mountain of work that I have now but speak soon hopefully - I'm so glad that we stumbled across each other. x

 

Now that is a co-incidence! I love Les Mis too and also rock music. Its because of the rock music that I have this

Speak soon X

 

Karl,
I am still taking gabapentin. Just 1 pill a day now.The T is doing the same thing again. went the last three days of hardly hearing it at all. When I woke up this morning it is a 10 out of a 10 in Loudness.It will stay that way all day. For some reason mine is a sleep issue. It is loud or low in the morning and it will stay that way.I know there is people out there that has this loudness 24/7 and I really feel for them. Karl you really do a good job on putting out information. Hopely things will get better someday for everyone.

 

mike -
I'm very happy to hear about your progress. Sorry that some days your tinnitus is at "10". You found yourself a great doctor!

Seems to me that there are several people like you on this sight who have variable tinnitus. Makes me wonder, is there a common factor? I venture to guess that some people get tinnitus because of neck issues, not the ear. Gabapentin is prescribed by neurologists for neuropathic pain, such as in the neck/brainstem. For the rest of us, gabapentin doesn't help our tinnitus.

My tinnitus is better today. It's always quiet in the morning. In my case, my tinnitus is amplified when I notice it, causing a vicious cycle. I'm an obsessive person - a "listener". Types like me are susceptible to tinnitus, making it a bigger deal than it should be.

 

Gabapentin and similar may work for some if it calms neuronal activity. Thats if the tinnitus is caused by the neurons in the auditory cortex going crazy because they have been deprived of soundsin certain frequencies due to hearing loss. Thats one theory of the mechanism of tinnitus anyway. There must be several causes,over excited neurons being just one.

The Acoustic Neuromodulator works on this theory of the mechanism of T. I'm so tempted to try it when I've saved up 4.5k.

 

The gabapentin does not seem to make a difference at all.Mine has been doing this cycling ever since it started 7 months ago. I hve seen alot of Doctors about this.I was in the service for 8 years and just two weeks ago I started going to the VA. I am going to see what they have to say about tinnitus. I have done about everything else.

 

mike -
"The gabapentin does not seem to make a difference at all..."
So much for that theory...!

 

I went on gaba for 3 months. Didn't do anything for my T but changed my personality a bit. Made me irritable.

 

Sometimes I wake in the night and hear the pulsating and its louder when I first wake up but quiets down during day and then gets louder later at night again. I don't know if its a circulation problem or not. I am on a couple of different meds and the Dr. does not seem to think the meds are causing it but I still wish I could wake up one of these days and hear nothing but silence............

 

Mine has been going on for 15 months. Started one day on both ears just as I woke up.
My is definetly more quiet when I wake up. It will kick in when there is noise around (vent in the shower as an example will wake it up). I also noticed a strange cycle where I would have few days (sometimes up to 2 weeks) with loud noise (think 10Khz beep going on all the time) and then between 1-3 days that it is more quiet.

The strange thing is the for me background noise or music will not mask the Tinnitus, it will just make it louder to the point that the Tinnitus will always be on top of anything else.

 

My T is definitely worse in the morning then typically gets better as the day wears on, but not always. I have woken up in the middle of the night a couple of times where I can barely hear it. That happened to me at 4 am this morning. I purposely tried to stay awake to just enjoy it. But by the time my alarm went off at 5:45 am, the T was back up - 10 out of 10.

 

Mick, this is similar to my experience, no matter how quiet it is when I wake up, it will kick in again full strength after either enough time has passed or very quickly if I am exposed to any noise like water in the shower.

The strange thing is that it comes in cycles, I will have many very loud days which can last up to 2 weeks and then 1-3 days that are relatively quiet. Never a repetative cycle. I don't drink alchohol, never smoked, stopped with the soft drinks few days after it started, tried not to eat hard cheese and likes but nothing helps. The cycle is the part that drives me crazy. If there is an issue, I expect it to be consistent.

 

When I wake up mine is LOUD!! Occasionally it is quiet but very rarely. Some days it will continue loud all the day just the same volume but I do get days when the loudness softens and I have quieter tones. It has only recently become this loud and I am amazed how loud it is - it is overwhelming at times but it is as it is.

 

Mine is like this - quieter in the morning when I awake then gets louder quickly as I get up and go about daily activities. It also reacts to noise like yours does. This makes me wonder if its the result of what Jastreboff says, we are hearing normal background activity that is around the inner ear ie. electrical impulses & blood flow. You'd maybe expect electrical impulses & blood flow to increase after you get up in the morning. Probably nothing to do with it but its what sometimes occurs to me.

 

Louise, that would not explain why it is not a consistent thing, I would expect that to happen all the time.
The frequency is always the same (between 10-11Khz) but the volume is usualy loud, sometimes lower and rarely almost completely quiet. I had times that it was completely gone, this happend during travel to other countries (not during the flight itself) so I thought it may be related to alergy but taking Claritin did not help.

I am starting to believe that it is some form of Migraine (check vestibular migraine) I suffer from all symptomps of migrains besides the headaches (Flashing lights, strong head pressure) that usualy go away after 30-120 minutes.
Before the attack the Tinnitus is becoming unbarable. the morning after it is very quiet. maybe I need to see a nuerologist...My physician sent me to an head MRI and found nothing. BTW, hearing test found no issue. but they test only to 8Khz and my problem is at the 10-11Khz

 

Hi Click, I too program, also self employed so I share your concerns. I think you may have a point about overworked brain cells, my T is worse the longer I concentrate. Most mornings it doesn't start until I shower, makes me think it may also be related to moving my head or neck?

 

Some mornings my T is almost gone. I wake up and start to move around and get ready for the day. It gets a little louder. I drink one cup of mild coffee in the morning, and about half of a caffeinated soda at lunch. By the end of most days, my head feels like it is buzzing. Sometimes is does not seem like is coming from my ears, but from the top of my head. That is why I am starting to lean towards ear, cranial, and neck fluids as being a big factor in T. It is always the worst at the end of the day.

I too am self employed. Have worked with computers and in the IT industry in some capacity for many years.

 

I don't think any of us are sure Radar... about what causes it. I know that I read somewhere back in the early days, of a man who had screaming tinnitus and had managed to get rid of it completely by using a special back rest in his car. He was convinced that it was a posture problem. I bought a back brace thing in the first few months and wore it at my desk - it was supposed to ensure correct posture. I wasn't convinced that it helped though and stoppped wearing it after a while.

It could also be that the way we use our brains makes us more susceptible to tinnitus. Or that there are more of us on here from IT because we use computers more than others.

So many possible causes - you can go insane wondering & reading & investigating.. and mostly not really getting anywhere.

I'm just happy that I am coping with my T (most of the time.. I still have bad days!) without drugs, without becoming depressed (yet!) and that I still really believe it will go away completely eventually.

 

Click, just to add to the coincidence, I am also in IT for the past 20 years.

 

I'd give up the soda sworthi. My T is definitely affected by things I eat and drink. Most coffee makes it go mad, tea makes it absolutely crazy & citrus drinks make it screech (even fresh orange juice). I've also tested sodium nitrate and potassium nitrate and both make my T loud the next day. It's incredible how many foods these are in.