Worse Again — Central Tinnitus

[Louise]

So, its got worse again. Last night I woke up after an hour or so sleep with T raging through my head. Its no longer limiting itself to my ears. I think its because its come into my right ear now so strongly (that ear didnt have any noise for the first 5 months) that its merged and seems to be all through my head.

Its an electrical noise all through my head today also, though not as loud as in the early hours of this morning. The left ear still seems loudest but its gone central too.

The more I've read (Googled) the more I think that taking the Clonzepam once a week ad-hoc has resulted in this. I read that there can be 'rebound disinhibition' of the neurons. Makes sense. Clonazepam really quietens it for me so maybe when its not there the opposite happens.

Anyway, once again Im asking if anyone else has experienced what I am - T noise being ear-located but then seeming to go central to that your head is FULL of noise.

I honestly dont like being negative all the time but this is all happening to me!

 

[Nicky]

Hi Louise. Sorry to hear having tough time. I have been pulling my hair out since June last year when developed increased T in my left ear... sound-induced. Have been struggling big time.... trying all sorts of alternative therapies, tablets etc. May have eustachian tube dysfunction too... but still waiting to get 2nd opinion from another ear consultant.. Everything takes so much time that become more anxious and not sure whether this then creates the illusion of more T. Not sure if the Eustachian tube problem is a symptom of my tinnitus or if they are related.... my hearing therapist says probably not. I have a shushing sound in my left ear, but then I think a series of notes came a short while later in my right ear... only notice this pattern of notes now and again!! But not sure whether these notes sound in my right ear or where and I have been told there is some point in the brain where the sounds can cross over... So where are you based?

 

[Louise]

That sounds like what I've been told that T is a 'central perception'.

I have a nasty sound in my left ear, it moves and I cant now describe it. It sounds 'sore'. I even felt some pain from it earlier (psychosomatic) because of the tones of the sound.

 

[Louise]

Sorry, forgot to say, I'm in the UK. Where are you?

 

[mike]

Louise,
I have had the happen to me before. It sounds like yours ears your brain the front and back of your head just one big hissing noise and different levels going up and down. It stayed like that for about 10 days. I had really thought that i had done something that it would stay like that forever. But it went down to the hissing sound in what seems like it is coming out of my ears. My changes so much ,i do not know what you would call it. I once went 13 straight days with it and it was so low I had to listen for it just to see if it was there. I will have it for 1 year next week. I still go 5 to 6 days with it at a high 10 out of 10. Then it will drop to a very low 1 or 2 out of a 10 for 2 th 3 days. Dont know what to make of it.

 

[Louise]

Hi Mike, that's how mine has been except for one thing, mine isnt hissing. Its high-pitched piercing noises and something maybe like crickets. Also a fast flowing electrical current. Just all around my head, filling it.
Anyway, something unbelievable happened this morning, I woke up with it very, very quiet. I cant believe it. Mine has never really fluctuated like most other peoples on here does so I wasnt expecting it.

I have even been sat in silence with my laptop earlier today and that hadnt been possible for a very long time. (I know its not good to be in silence so I only did it for a while).

 

[DezDog]

+100 likes for your post Louise

 

[Louise]

Aw, thanks x

 

[Markku]

Hi Mike, that's how mine has been except for one thing, mine isnt hissing. Its high-pitched piercing noises and something maybe like crickets. Also a fast flowing electrical current. Just all around my head, filling it.
Anyway, something unbelievable happened this morning, I woke up with it very, very quiet. I cant believe it. Mine has never really fluctuated like most other peoples on here does so I wasnt expecting it.

I have even been sat in silence with my laptop earlier today and that hadnt been possible for a very long time. (I know its not good to be in silence so I only did it for a while).

Almost heartbreakingly great news. You've seemed to suffer way too much, but I always thought it would become better in time.

/me sends an electronic hug, enjoy this day! And even if it for any reason became bad again, now you know it can go down. You'll be fine!

 

[Louise]

That's so nice of you Markku, and DD. People on here really care and I'm very touched.

Electronic hugs to all!!

x

 

[click]

Hi Mike, that's how mine has been except for one thing, mine isnt hissing. Its high-pitched piercing noises and something maybe like crickets. Also a fast flowing electrical current. Just all around my head, filling it.
Anyway, something unbelievable happened this morning, I woke up with it very, very quiet. I cant believe it. Mine has never really fluctuated like most other peoples on here does so I wasnt expecting it.

I have even been sat in silence with my laptop earlier today and that hadnt been possible for a very long time. (I know its not good to be in silence so I only did it for a while).

Thank goodness for that Louise. So very, very pleased to hear that it's fluctuated downwards for you

As Markku says - even if it goes up... now you know that it will go down again.

Stay strong xxx

 

[Louise]

Thanks Jane xxx

 

[mike]

I have also had high-pitched piercing noises and also it seemed like fast flowing electrical current around my head really bad. All I can say it gets better and than it goes back to high. Mine seems to be when I go to sleep with it high and than I wake up it will be low and it will stay like that for 2 to 3 days. Than I will go to sleep with it low and wake up with it high and it will stay like that for 5 to 6 days. This is really the pattern for must of the time. Mine seems to have alot to do with going to sleep and waking up.

 

[Louise]

Interesting you should say that Mike, I've heard that T people cant nap as they will wake up with it loud and that Jastreboff & Hazell could never explain this.

My low T of this morning has gone and the normal noise level is back. I didnt even get a whole day of it being quiet.

 

[Markku]

Interesting you should say that Mike, I've heard that T people cant nap as they will wake up with it loud and that Jastreboff & Hazell could never explain this.

My low T of this morning has gone and the normal noise level is back. I didnt even get a whole day of it being quiet.

I really thought it'd be a permanent reduction. Since you hadn't had those in the past...

How did it return to the higher level, was it instantly or slowly during the day?

Just wondering here.

It's a good sign nonetheless to have had it go noticeably down, but also mystifying why it couldn't stay there. Damn tinnitus and the unknown.

 

[mock turtle]

Mike..i think those good interludes are a really good sign, you are geting better

Louise, i sympathize, and im in pain right now....im in my "no medication" phase and my tinnitus rages so loud thru my brain that i get heaaches

the good news is.... , if there can be such a thing in this situation, is that i have been here before, 20 years ago and i fam reasonably confident that i will adjust, we all ail adjust, we have just got to soldier on and get thru it.... its a matter of a couple years more or less (and not a month or two) , so i just have to hang in there...and so do you

yeah very crazy and very painfull

just visualize a big group hug..like in american football, we call it a huddle or in rugby, like the beginning of a scrum

we are all in this together

hang in their people!
hugs
mock turtle

 

[click]

Interesting you should say that Mike, I've heard that T people cant nap as they will wake up with it loud and that Jastreboff & Hazell could never explain this.

My low T of this morning has gone and the normal noise level is back. I didnt even get a whole day of it being quiet.

I wish I knew why the mornings are always the loudest Louise. Not being able to figure T out is one of the worst bits of having it. At least we know why an arm hurts when it's broken - T is just so confusing! I never nap & even if I'm really tired I try not to go to sleep early just incase I don't sleep all night. Have 'morning T' twice a day is horrid.

I'm sorry that your T went back up but it did go down and it will again. At least you now know that it can

 

[mike]

Here are some more things that have happen this year that I have had this tinnitus. I have fell asleep sitting on the couch. My chin resting on my right side. That is how this all started. Now when this has happen I woke up 10 mins. or so and my t was raging. Now on the flip side. Since I have had t I have fell asleep when my t was real loud in the middle of the afternoon and I would wake up after 10 mins. Or so and it was gone. That has happen about 5 times in the last year. That is a hard one to explain. Now when I am off on the weekends and I wake up and my T is loud I said to myself I am going back to sleep and see what happens when I wake up again. Well I have done this and there have been times I woke up after the second time and it was gone. It has happen about 8 or so times. I have also done this and it has not worked at all. But like I said the 8 times it did happen it all had to do with me waking up and sleeping. Does not make any sense to me at all.

 

[Louise]

I really thought it'd be a permanent reduction. Since you hadn't had those in the past...

How did it return to the higher level, was it instantly or slowly during the day?

Just wondering here.

It's a good sign nonetheless to have had it go noticeably down, but also mystifying why it couldn't stay there. Damn tinnitus and the unknown.

No such luck Im afraid

It had got louder after I ate lunch and then was about normal at night but still not the very high level of the previous couple of days when it was all through my entire head.

It was quieter again this morning, although not as good as yesterday morning. It just does whatever it wants doesnt it? Thats the trouble

 

[Louise]

Mike..i think those good interludes are a really good sign, you are geting better

Louise, i sympathize, and im in pain right now....im in my "no medication" phase and my tinnitus rages so loud thru my brain that i get heaaches

the good news is.... , if there can be such a thing in this situation, is that i have been here before, 20 years ago and i fam reasonably confident that i will adjust, we all ail adjust, we have just got to soldier on and get thru it.... its a matter of a couple years more or less (and not a month or two) , so i just have to hang in there...and so do you

yeah very crazy and very painfull

just visualize a big group hug..like in american football, we call it a huddle or in rugby, like the beginning of a scrum

we are all in this together

hang in their people!
hugs
mock turtle

Hi MT, I noticed you had been quiet and knew it must be because you are currently Mach T

How long is your meds free phase for?

Hope it gets better for you soon.

Crazy and very painful

I will think of that group hug (or scrum for the manly ones ).

x

 

[click]

No such luck Im afraid

It had got louder after I ate lunch and then was about normal at night but still not the very high level of the previous couple of days when it was all through my entire head.

It was quieter again this morning, although not as good as yesterday morning. It just does whatever it wants doesnt it? Thats the trouble

it's probably irrelevant but what did you have for lunch Louise?

 

[Louise]

I only had what I have most of the time, an egg sandwich on gluten-free bread. Wish it had been that simple

 

[click]

ahh well - was worth a thought

 

[Louise]

I know x

 

[mock turtle]

"...on gluten free bread..." hmmm I'm gluten intolerant...looking for patterns here

Louise

im trying to go on more week, its touch and go, having the bottle of pills close by helps me to say...on more day...one more day, i can take it, but honestly things have been ugly...t so bad my head hurts, as in bad headache

i like to go 3 weeks or more without to clear out the system and let the brain begin to un do the changes that several months of benzos bring about

counting the taper down (week to 10 days) its at least a month long process

best wishes
mt

 

[Louise]

There's some link between gluten and glutamate, it breaks down or combines with something and makes more glutamate in the body! I've tried to avoid it for a couple of years but not at all religiously. However, I had a bio-resonance diagnostic test last week and I came up 'profoundly sensitive' to gluten. The lady doing the test is very knowledgeable and said its important to avoid it.

I'm really sorry you're going through it. So hard. You're so strong. Would painkillers help a little?

Do you do the clear out once a year of more often?

Best wishes to you too MT.