Fluctuating Tinnitus question

[Fish]

Hello,

As you know my tinnitus is fairly new (started one week ago) but what really makes me wonder right now is it's strong fluctuation. It seems to be louder at times, there are moments when it's barely there (yesterday evening was great and this morning was awful).

Is it normal for tinnitus to alter between the ears? Right when it started it was mainly left ear, next days I could hear it in both ears equally and today the volume in left ear is down to maybe 5% but right ear gives me a hard time.

What is even weirder, two days ago after waking up I could partially change the volume of T by turning my head left and right. I noticed my arms becoming numb often too and it started at the same time as T.

Is this common? I still hope it will go away and wondered if maybe if it's some problem with my neck that causes this. Perhaps all this time spent in front of my computer has taken it's toll

 

[Karen]

Hi, Fish,

Since your T was caused by an ototoxic drug (Cipro), it may have something to do with that. Have you read some of the comments on forums by people who have been affected by Cipro? (I read up on it when I was prescribed Cipro for an ear infection, and was really frightened, soI didn't tell my doctor,but cut the pills in half.)

The numbness could be a delayed reaction to the Cipro. Just a thought, but worth considering.

And, yes, the numbness could also be caused by your head and neck positions from spending long hours in front of a computer!

It is possible that, with time, your T may begin to subside. I hope so, anyway!

I'm the victim of an ototoxic drug, too (Lisinopril, an ACE inhibitor), and mine has subsided some over time.

 

[DezDog]

I had fluctuations, and I noticed I could change the pitch by clenching my jaw. Sometimes I thought it was worse in my right ear. Then I would test this by listening for it in my left, and f**k me, I could hear it in the left as well. I started to realize that the constant testing was perpetuating it. It's natural to want to see if it's "better", so I tried to break the compulsion to check it constantly. It's not easy.

 

[erik]

dezdog, you're right, it is not easy to break the compulsion to check it constantly. When it's louder, you know it is there but when it is very low, your mind wants to find it and hear it. Sometimes having it real low can actually drive you crazier than when its loud and you KNOW it's there.

 

[DezDog]

> Sometimes having it real low can actually drive you crazier than when its loud and you KNOW it's there.

Absolutely, but oddly enough that's also cause for hope. I think the mind looks for it when it's low because it hopes it's really gone THIS TIME. It sets us for disappointment. A step forward is accepting that we can hear it whenever we want, but we *don't care* if we do.

I make it sound like I've got it all sorted out, there are still days when it bothers the heck out of me. But the anxiety is gone, and I care a lot less than I did earlier this year. Each minute, hour, day is another brick in my defenses.

 

[oliver]

I think fluctuating T is very common. My can increase from day to day, week to week. Its always there, just on some occasions it doesn't bother me and on other occasions it causes high levels of anxiety and I can struggle to cope. One day at a time! Today has mostly been a good day. At some points during the day I would hardly notice. I was feeling very optimistic. Then something cause it to spike. Who knows what this was. I have had constant T for a year now and I am still habituating, trying to identify and eliminate what causes (coffee, certain types of alcohol, food with high levels of salt, LOUD NOISE) the fluctuations. I think this is the key to living with the condition.

Everyones words here are very true about how the level T can effect you relates directly to "looking" for the T.

 

[Evan]

Fluctuating is definitely normal, just try to find the causes for your tinnitus and get used to not letting it bother you. O hope your tinnitus gets better soon.

 

[Fish]

Thank you for your advice, I appreciate it!

Maybe I'm just overthinking it, but I feel there is a direct link in my T volume and horizontal/vertical position.

When I lie down (not even intending to sleep!), my T becomes much, much louder. Once I get up, it seems to lower gradually to the point where it's acceptable. Coincidence? I honestly don't know.

Do you experience something similar? Is there something in particular you noticed that affects the volume of your T?

 

[click]

Hi Fish - I've read a few of your posts and joined because I wanted to reply. My T began in April at 4am with really loud (and frightening) electrical type noises rushing back and forth (head .. not ears). Since then I seem to be following a similar pattern to you. When I lie down, whether it's during the day or night, it gets far FAR worse.

It's now often in my ears, sometimes the back of the head and first thing in the morning, the worst time, it seems to be throughout my whole head.

During the day (when upright) it often almost disappears - at times it's just a tiny 'tinkling' behind my ears - although sometimes it screams, as it is doing right now.

I have to believe it will go. I'm not as frightened as I was at the beginning (the first few weeks were really hard) but I still want it to go completely.

Surely if being horizontal has this effect the T must have a connection with middle ear fluid?

The ENT specialists in the UK seem to feel that stress is the cause and that it gets worse when lying down because it's quieter at night. Complete nonsense. They just don't know enough.

I'm following the basics of the Jastreboff method which says to play nature noises 24hrs a day but ensure that they don't 'mask' the T - apparently for the brain to tune it out (ie. to recover) it needs to hear the T. It's the only thing that has helped me since the start.

I don't panic too much these days but only because I still believe it will go eventually. If it doesn't go within the next few weeks I will be signing up to a clinic that practises Jastreboff's method... I will have to move house to be able to do that - they are just too far away - but moving house is far less stressful than having tinnitus.

Did you take the magnesium? Did it help?

 

[Fish]

Hello click - thank you for your reply.

Your description sounds familiar indeed! Is our tinnitus related to something with middle ear fluid? I honestly don't know. I want to be careful with my guessing, in this topic (last post) I wrote a list of possible causes, but truth is I really have no idea why did this happen. You are right it becomes worse when lying down. Once I get back up, it slowly gets quieter to a more acceptable level.

Are you allergic? Maybe you can check out this person's post, I thought it could be also somehow related to our case:

LINK

Regarding magnesium, I take large doses of it and other vitamins once a day. I wouldn't suggest doing so without asking a doctor though, I don't think it's completely safe. I do it out of desperation. Keep in mind I also use other meds, I listed everything in the topic above.

Does it help? I'm not sure. I don't want to say I'm getting better. Last time I did, the next day was a disaster

Best of luck to you and let us know how did your Jastreboff therapy work!

 

[jack]

Hello click - thank you for your reply.

Your description sounds familiar indeed! Is our tinnitus related to something with middle ear fluid? I honestly don't know. I want to be careful with my guessing, in this topic (last post) I wrote a list of possible causes, but truth is I really have no idea why did this happen. You are right it becomes worse when lying down. Once I get back up, it slowly gets quieter to a more acceptable level.

Are you allergic? Maybe you can check out this person's post, I thought it could be also somehow related to our case:

LINK

Regarding magnesium, I take large doses of it and other vitamins once a day. I wouldn't suggest doing so without asking a doctor though, I don't think it's completely safe. I do it out of desperation. Keep in mind I also use other meds, I listed everything in the topic above.

Does it help? I'm not sure. I don't want to say I'm getting better. Last time I did, the next day was a disaster

Best of luck to you and let us know how did your Jastreboff therapy work!

hi fish how are you doing did you ever try one and a half to three mg melatonin for sleep slow release . im trying 500mg of suplament gaba today for anxiety . jack

 

[Fish]

Hello Jack. I didn't want to celebrate early, but I've been feeling quite great recently and my T has stayed pretty much the same over the last 3-4 days.

I'm not quite there yet, but my tinnitus is like 10% of what it was when it all started. In the first few days my T was so loud I panicked, couldn't sleep and actually had problems understanding conversations/television. Right now I'm more or less back to normal life. I don't know what helps me, if anything. But I keep using my prescribed medicine and vitamins.

Regarding sleep - T becomes louder when lying down, I tap my fingers against the pillow to distract myself or turn on a fan. I read that melatonine is very effective, try that out if you need help. It's a safe drug compared to stronger and addictive things like xanax.

 

[click]

hi fish, thanks for your reply. No, I don't believe I'm allergic to anything or ever have been. I don't have any common allergies or allergic symptoms (except perhaps T - I'm not ruling out any cause as yet!). I'm not taking magnesium as a supplement - instead I'm eating a brazil nut every couple of days )

I've studied masses of scientific papers since this started and have read that nasal polyps are often found in people with tinnitus. I did have a tiny (I thought not really worth mentioning) bump inside my left nostril when it started - showed it to the ENT Consultant who basically dismissed it. I also had hearing tests etc. which showed normal hearing. As I mentioned before, the ENT Consultant put it down to stress - said it would go away but would take time. Hmmm. I just kept thinking - I can't stand it any more - I haven't got time - I have a business to run - someone please fix this. I couldn't believe that there was no cure!

I still don't believe that mine was caused by stress but it certainly caused massive stress! I have never suffered from depression or anything even remotely approaching suicidal thoughts but after two weeks of screaming tinnitus and no sleep (due to the fact that lying down seemed to actually be causing it) I had effectively worked out how to kill myself.

A friend rescued me - she picked me up and drove me to her place in France where I spent almost the next two months. I panicked, I hated being alone (I have always loved being alone!) and I refused all drugs. I hate the effect drugs have on me - the fuzziness in my head. I couldn't stand the prospect of not being able to think clearly as well as having the screaming noise. I basically just survived in a kind of daze, not caring about anything except the noise. Loud noises also hurt - the dog barked and I winced - the two year old jumped up and down on the floor and I ran away.

My right ear has a 'full' feeling and often hurts. The ENT chap says no infection, no fluid, no wax etc. but I have read that it's not always possible to detect middle ear fluid problems.

It would go away for a couple of days - just down to a tiny tinkling noise - but it would come back. I bought a barometer because I thought it may be linked to air pressure. I monitored what I ate and drank - nothing was affecting it. Lack of sleep was giving me a headache - tinnitus was also making my head ache.

Dozens of ear plugs, a pair of ear defenders to completely block noise, noise cancelling headphones etc. later, I am now back from France and I am managing the T. Jastreboff teaches ENT Consultants that tinnitus is caused by silence. This made sense to me. I had moved into a house with immensely thick granite walls and total silence. I had moved from a house next to a busy road (which never bothered me). It took 3 weeks of sleeping in silence for the tinnitus to emerge.

The theory is that if you block outside noises this will make sensitivity to noise worse. If you mask the T you're not going to get rid of it. So my ear plugs and ear defenders weren't aiding a full recovery.

Basically you play nature sounds (I play water mp3s as I find them the least annoying - one at each end of the room) 24 hours a day but not loudly enough to mask the T. The brain needs to hear the T to be able to teach itself that it is a 'safe sound' and not be bothered by it - eventually not hearing it as it's not necessary to hear it.

It's working for me. It's nearly 4 months and it's nearly gone. I walk away from the mp3 sounds and I can hardly hear the T. I actually sleep. I can work (I'm a computer programmer and I was beginning to think that I'd never be able to program anything again). I can almost relax.. not quite but almost. I do have moments (a few minutes.. no more) when I forget about the T because it's not there. When it's there I can't forget about it. I remember reading on forums about how if you don't 'react' to it then it will stop bothering you. I remember thinking that I don't want to 'not react' - instead I want it gone. I still think that way and I do believe that it will go completely now.

Having said all this, the T is still most prevalent when I lie down or when I get up from lying down. I dread first thing in the mornings because I never know what it will be like. But I think that what is now bothering me is the fear of it getting worse, coming back as it used to be, rather than the T that I am actually experiencing.

Really hope that yours has stayed at 10% or reduced even more.

 

[erik]

Click and Fish, I have had mine for 3.5 months and went through all the same things you guys did. It is now much better than it was the first 2 months though it still fluctuates from sometimes barely there to louder and always there. I too forget about it on occasion especially when busy or distracted. I do live in quiet house, quiet neighborhood, work in a quiet office and switched to almost silent Mac computer about 2 weeks before my tinnitus started as well as going through massive stress and anxiety. So I am not exposed to loud sounds at all but I do keep something playing all the time at home and in my office and that helps. I do take Magnesium Glycinate and some melatonin at night before bed and it helps me now get about 6-7 hours of solid sleep now.

Continue to get better guys, improving your attitude and sense of well-being alone can improve things drastically and good luck.

 

[click]

Hi erik - does your T get worse when you lie down? Is the worst part of the day when you get up from sleeping?

 

[erik]

Hi Click, Yes mine seems to be worse when I lie down, however, if I am very tired then I can get to sleep with no problem. I tend to wake up early and sometime if I try and go back to sleep I tend to have problems getting back to sleep once I hear the noise again. My T is usually lower in the morning and afternoon and increases in evening to bed time.

 

[Fish]

So the last week really great to me. I felt better every day and had moments when tinnitus was virtually gone. I genuinely believed that my meds (betaserc+piracetam) worked and my new healthy regime also helps (no loud noise, avoiding stress). I had my old life back, I stopped thinking about T.

nd now it's back and as bad as day 1 (when I rushed to ER) - as I'm writing this, it's 3:50 AM here and I had no sleep at all. goddamnit really, what did I do wrong? There has to be something that triggers it.

I know you all have it and you've been there where I am right now. I'm sorry I just had to vent. I'm really devastated.

 

[Karl]

Fish -
I think you have been showing great progress. Try not to freak out. Your "T" may be different from mine (ototoxic cause, age related), but it seems to me that you have had good days, simply because your tinnitus changes.

You're new to this strange world of tinnitus. I have a few months on you. I've heard it takes between 6 months and 2 years to habituate.

Lately I have noticed a significant difference in my "T", which may signal the beginning of "habituation". Whenever I've read about the habituation process, I haven't quite understood; but I think I'm beginning to experience it. Over the past 8 months, using maskers, the tinnitus seems to be loosing its importance. I hope that it will become of so little importance that the nerve circuitry involved becomes isolated from my conscience. Perhaps, it's still going on in a part of my brain, but "I'm not going there" so much.

It's a hard concept to grasp, the concept that our thoughts can change. It's called "Neuroplasticity". If you can accept that our conscienceness and thoughts are a result of neuron wiring, then you will be able to understand that our brains can re-arrange the neuron wiring, in the interest of self preservation. Some babies are born with tinnitus, and they fix themselves through neuroplasticity.

I tend also think that tinnitus is almost a function of noticing it. When I wake up, it is very low. Once I notice it, it starts growing, like the sound of cicadas.

 

[click]

Hi Fish,

Mine's been with me over 4 months now and I have experienced the same feelings as you. There have been periods of 4 or 5 days when I begin to believe that it is completely disappearing - it's just a tiny tinkling that often isn't there. And then it suddenly starts to scream - makes you feel devastated because it's like going back to step one and step one was very frightening.

The memory of how I was when this began scares me. I'm scared that I will feel like that again.

But, in reality, when it comes back, I'm not really scared of the T. Instead I think I am scared of feeling the way I felt when it began. When it screams I'm scared that I will go back to feeling the way I did in the first three weeks.

And gradually I'm realising that I'm not going to be that scared again - so gradually I'm feeling better. Nothing to do with feeling better about the T - better about not being as scared.

I hate it. I want the noises to disappear - completely and utterly and never come back. But I'm not as bothered by it. People on these forums say that this is habituation. Maybe it is. I don't think I'll ever 'just get used to it' though. I understand now that it's not the pre cursor to something awful - I'm not going to collapse or go insane. I know I can still work. At the beginning I didn't understand all these things and the fear was too much to cope with. So it's now logical that the T doesn't scare me as much now I understand that I can still 'function'.

Many people say it's your reaction to T that matters most. Don't let it bother you and the volume will go down. This may happen for some but it doesn't for me. The volume is whatever it is. When I'm not bothered by it the volume can still be loud. When I'm incredibly bothered by it the volume can be so low it's hard to hear it. My reaction to the T doesn't increase or reduce the volume of it.

Right now I can't hear it at all but when I lay down to sleep tonight it will once again let me know that it's still there. It will wake me up between 4am and 5am and tomorrow morning it will scream loudly (and then maybe it will go or maybe it will scream all day). Mornings are always worse. That's why I am still convinced that mine has something to do with inner ear fluid. So many people complain of a 'fullness' in their ears. I don't think that hearing what is going on in your brain can cause physical fullness in your ear - which is sometimes pretty painful!

I'm not using maskers because the Jasterboff TRT says that if you mask the noise completely then the brain will not learn to phase it out. I have rain sounds on 24 hours a day but at a volume that still allows me to hear the T. I'd prefer to mask it completely but I want it gone and I thinks it's pretty logical that I need to hear it for it to eventually go away. I'd rather have 6 months of this and then it goes, than mask it completely and just 'live with it'. Maybe it will work - I'm hoping so but I also know that it may not. At least I'll have given it my best shot.

Anyway - try to remember that when it's loud it's probably going to get quieter again. That's what gets me through. Maybe a couple of days of screaming but then a whole load of quieter days will most probably follow. Remember that last time the screaming DID go away and try to believe that it will again.

Wouldn't it be great if it was like other things that do get better with time? A gradual decrease. Instead with T it seems to go up and down which makes you feel that it's never going to go away. But loads of people have T and it does go away - completely. They don't all say that they just got used to it - they say that it has gone away and that they can't hear it at all - ever.

 

[Shelley]

I don't really have much to add to this, just that it gave me some hope hearing that people are doing better . Mine does seem to get quieter at times now, so hoping that's a good sign, I'm also feeling better in myself, not 100% but definatly better than before, so we all seem to be heading in the right direction.

 

[Jody]

Hello,

As you know my tinnitus is fairly new (started one week ago) but what really makes me wonder right now is it's strong fluctuation. It seems to be louder at times, there are moments when it's barely there (yesterday evening was great and this morning was awful).

Is it normal for tinnitus to alter between the ears? Right when it started it was mainly left ear, next days I could hear it in both ears equally and today the volume in left ear is down to maybe 5% but right ear gives me a hard time.

What is even weirder, two days ago after waking up I could partially change the volume of T by turning my head left and right. I noticed my arms becoming numb often too and it started at the same time as T.

Is this common? I still hope it will go away and wondered if maybe if it's some problem with my neck that causes this. Perhaps all this time spent in front of my computer has taken it's toll

Hey there - Wanted to let you know that when my Tinnitus started, I spent time in the ER because my limbs were going numb. First my left side and the next day my right. I went to the hospital the 2nd day because I thought I was having a stroke or something. I am pretty sure that I had every brain scan known to man. They found nothing. I saw every kind of doctor on the planet more than once.

I eventually found a doc that treats TMJ and have been getting my jaw re-aligned for the last 6+ months. It helped in ways, but I still have really bad days. I am only 30 years old and every day I keep wondering how I'm going to live with this for the rest of my life. Most days are okay, but some are awful. The last 3 or 4 have been pretty bad. I stood up tonight after laying on the couch for about 3 hours and had a major head rush - my ears filled with noise and I felt like I lost about 30% of my hearing for about a minute. Everyone sounded like they were in a can.

I have absolutely NO idea what is going on in there, but the physical sensations that I have just seem SO obvious to me that there is a physical problem. I don't understand what they can and can't see, but I've seen an inner ear specialist and she also saw nothing. I'm at a loss. I wish this post was going to bring you some news, but I just wanted to connect with someone who feels what I feel and has felt what I felt. :-\

To better days....

Jody

 

[Petloy]

Jody, you might have had an orthostatic hypotension episode, lying position and then getting up quickly. How often does this happen to you?

 

[Karl Sciberras]

Fish -
I think you have been showing great progress. Try not to freak out. Your "T" may be different from mine (ototoxic cause, age related), but it seems to me that you have had good days, simply because your tinnitus changes.

You're new to this strange world of tinnitus. I have a few months on you. I've heard it takes between 6 months and 2 years to habituate.

Lately I have noticed a significant difference in my "T", which may signal the beginning of "habituation". Whenever I've read about the habituation process, I haven't quite understood; but I think I'm beginning to experience it. Over the past 8 months, using maskers, the tinnitus seems to be loosing its importance. I hope that it will become of so little importance that the nerve circuitry involved becomes isolated from my conscience. Perhaps, it's still going on in a part of my brain, but "I'm not going there" so much.

It's a hard concept to grasp, the concept that our thoughts can change. It's called "Neuroplasticity". If you can accept that our conscienceness and thoughts are a result of neuron wiring, then you will be able to understand that our brains can re-arrange the neuron wiring, in the interest of self preservation. Some babies are born with tinnitus, and they fix themselves through neuroplasticity.

I tend also think that tinnitus is almost a function of noticing it. When I wake up, it is very low. Once I notice it, it starts growing, like the sound of cicadas.

Quite a coincidence that after I threw a post on my blog on neuroplasticity I come across it here while searching on Betaserc medicine, and posted by someone who has the same name like me! Great post though Karl.

 

[DebInAustralia]

Hi Fish,

I wanted to ask you since you think your t was caused by cipro, what your sound is actually like? how would you describe what you hear?

thanks
deb

As you know my tinnitus is fairly new (started one week ago) but what really makes me wonder right now is it's strong fluctuation. It seems to be louder at times, there are moments when it's barely there (yesterday evening was great and this morning was awful).

Is it normal for tinnitus to alter between the ears? Right when it started it was mainly left ear, next days I could hear it in both ears equally and today the volume in left ear is down to maybe 5% but right ear gives me a hard time.

What is even weirder, two days ago after waking up I could partially change the volume of T by turning my head left and right. I noticed my arms becoming numb often too and it started at the same time as T.

Is this common? I still hope it will go away and wondered if maybe if it's some problem with my neck that causes this. Perhaps all this time spent in front of my computer has taken it's toll [/quote]