Thought I Had My Tinnitus Cracked Recently — I Was Wrong

[Allan1967]

Hello all,

I had a few weeks recently where I thought my tinnitus had finally settled back down to pre-spike October 2018 levels.

I had developed myself a nice little routine that seemed to be working just fine and making my tinnitus more manageable. But on Saturday the intensity of the high pitched whine increased and come Sunday night there I am, once again, driven to tears at the intensity of it all. The only thing that changed in the same week was I started using a prescribed steroid skin cream and an over the counter spot cream. Quit both of them now.

Just when I was thought I was out of the woods, I'm dragged kicking and screaming back in. On the upside I pick up my Lenire device in 2 weeks time so I hope it brings me and all those who go for it some relief.

 

[MartinH]

That sucks. Same thing just happened to me. I had a couple near silent weeks and night before last I woke up and it was screaming. Very disappointing. I just keep telling myself it will settle down again, just stay strong.

 

[david c]

Quite often I find my tinnitus fluctuates and it's difficult to attribute it to one cause. At least you have the Lenire device which hopefully should be of some help. Hope that you are able to offer feedback on it to Tinnitus Talk as there are many people who will be interested in how you get on with it.

 

[Allan1967]

That sucks. Same thing just happened to me. I had a couple near silent weeks and night before last I woke up and it was screaming. Very disappointing. I just keep telling myself it will settle down again, just stay strong.

I get sick of this roller coaster ride into Hell and back. My better days were getting longer - I even had a sold 7 days straight where it was really good a few weeks ago. Then a few days of Hell, then a few weeks of tolerable and now its back to bastard level. I just wish I could fathom out what makes it change.

The difference in my personality is noticeable.

 

[MartinH]

I hear you... that's exactly where I am. I'm pissed off at everyone and everything. It's a struggle not to take it out on someone. Temper is short. Don't know how I'm going to sleep tonight.

 

[Allan1967]

I hear you... that's exactly where I am. I'm pissed off at everyone and everything. It's a struggle not to take it out on someone. Temper is short. Don't know how I'm going to sleep tonight.

Sleep was one thing I cracked with CBD Oil, 10mg of melatonin and a 12kg gravity blanket.

 

[DaveFromChicago]

To Allan1967 and Martin H:

I have been experiencing that insufferable roller coaster ride effect as well.

I had previously been lulled into believing that such periods of relative quiet might signal the beginning of the actual permanent remission of this condition.

However, now even the periods of relative quiet are ruined because I know that the longer they last, the closer I am to getting an incapacitating spike.

This realization places me on unbearably high paranoiac alert; the first thing I do every morning is evaluate what I call the "T Report" - if my tinnitus has been exacerbated overnight, then it will be invasive throughout at least the entire day (and there is literally nothing I can do to affect it).
My Widex Zen White Noise Maskers only intensify the sound, and the hearing aid amplification is dwarfed by the intensity of a spike.

These circumstances are so tortuous that I imagine that they were developed by a Celestial Satanic SS Officer.

Let's hold out the hope that Lenire will substantially, permanently reduce this edge-of-insanity provoking cycle.

 

[Candy]

I've use steroid creams for years but no noticeable effect on my tinnitus. In fact my tinnitus is more intrusive now but I haven't used any steroid creams for about a year.

 

[MartinH]

To Allan1967 and Martin H:

I have been experiencing that insufferable roller coaster ride effect as well.

I had previously been lulled into believing that such periods of relative quiet might signal the beginning of the actual permanent remission of this condition.

However, now even the periods of relative quiet are ruined because I know that the longer they last, the closer I am to getting an incapacitating spike.

This realization places me on unbearably high paranoiac alert; the first thing I do every morning is evaluate what I call the "T Report" - if my tinnitus has been exacerbated overnight, then it will be invasive throughout at least the entire day (and there is literally nothing I can do to affect it).
My Widex Zen White Noise Maskers only intensify the sound, and the hearing aid amplification is dwarfed by the intensity of a spike.

These circumstances are so tortuous that I imagine that they were developed by a Celestial Satanic SS Officer.

Let's hold out the hope that Lenire will substantially, permanently reduce this edge-of-insanity provoking cycle.

I do that too.... as soon as I wake up, my first thought is whether it is better or worse than yesterday. I used to keep track of it during the day, every few hours I'd write down how loud it was and what kind of tones I was hearing. I think that is probably a mistake.

I'm just as lost as everyone else. I don't know why, all the sudden, mine went nuts in 04/2017. I got a big glob of wax out of my ear a few days earlier and T paid me a 4 hour visit. Then it just came back and decided to stay. I'm sure the fear and anxiety I felt during the 4 hour session had something to do with it. So now, not an hour goes by without me listening to it. Occasionally i'll have a string of good days from 4 - 7 days, I think i had 9 once. It was there but quite easy to ignore. Today, it so happens, it's pretty mild. But it's only 8:40am. We'll see.

I try not to focus on how miserable it is when I have a loud day. Instead I just remind myself that I've had bad days before, it will calm down. I know how disappointing it is to have a few good days and then get knocked back on your ass. Just happened to me 2 days ago. I had a near silent 3 days, then Sunday it knocked me on my ass.

I'm still a relative newbie to this. But I know that it's different for everyone. There's no pattern to mine, I just know that normally I'll have a really crap day or two and then normally i'll have a few more quieter days, at least more quiet. Hopefully they'll come up with something to help us all. In the meantime, I'm trying to undo all the damage to my body from years of neglect, eliminating as many things that I can that I've been doing that are bad for me and loosing weight. Hopefully one day I will hit the magic combo.

Anyway, sorry I started floating around a bit there.

 

[Allan1967]

I'm real low at the minute. Does asking God to end your life amount to a sin?

 

[Allan1967]

Hello all

I've not been too active lately, but like all of us I'm struggling to cope again. I've been tapering off Venlaxafine for the past couple of months, dropping a 1/4 of a tablet each week. I was noticing that for a day or so afterwards I'd be a bit emotional but it would even out. Last week I dropped to 3/4 of one 37mg tablet a day and I've really been feeling the gut gripping bite of depression kicking in since and I'm in real need of some support please.

What makes it all worse is that I thought things were starting to get on a more even keel. I've been sleeping well thanks to a gravity blanket; 10mg of Melatonin and 500mg CDB oil and my tinnitus hasn't been too bad, manageable in fact, plus I've been to see Neuromod and pick up my device in two weeks.

But it all came back with a vengeance on Sunday when my tinnitus became super intense again and hasn't settled since and I don't know why.

Being plunged into Hell and pulled back out for breath then pushed back in again is taking its toll.

 

[Vicki14]

That sucks. Same thing just happened to me. I had a couple near silent weeks and night before last I woke up and it was screaming. Very disappointing. I just keep telling myself it will settle down again, just stay strong.

Agree Martin! That's what gets me through the tough days! X

 

[ChrisBoyMonkey]

Hello all

I've not been too active lately, but like all of us I'm struggling to cope again. I've been tapering off Venlaxafine for the past couple of months, dropping a 1/4 of a tablet each week. I was noticing that for a day or so afterwards I'd be a bit emotional but it would even out. Last week I dropped to 3/4 of one 37mg tablet a day and I've really been feeling the gut gripping bite of depression kicking in since and I'm in real need of some support please.

What makes it all worse is that I thought things were starting to get on a more even keel. I've been sleeping well thanks to a gravity blanket; 10mg of Melatonin and 500mg CDB oil and my tinnitus hasn't been too bad, manageable in fact, plus I've been to see Neuromod and pick up my device in two weeks.

But it all came back with a vengeance on Sunday when my tinnitus became super intense again and hasn't settled since and I don't know why.

Being plunged into Hell and pulled back out for breath then pushed back in again is taking its toll.

I can say I know how you feel, but I admit I haven't known the feeling for as long as you. From what I can see, you have a lot to look forward to. If you tinnitus can get to a point to a "manageable" level, that's a good sign as I was barely starting to feel that way about a week ago. I started being able to sleep with a lower setting of my Bose Sleepbuds than onset but lately its been forcing me to set to the original setting, it's been louder again. Still, I know we will take control of this and science will make sure that we do. As for Lenire, yes I am a little jealous that you are getting your device soon, but more happy to see it getting to those who need it and have suffered with this for longer than I have. I am in California, USA so it will likely be a while before I get to try it since I can't afford to fly over there four times at this time.

 

[Allan1967]

I can say I know how you feel, but I admit I haven't known the feeling for as long as you. From what I can see, you have a lot to look forward to. If you tinnitus can get to a point to a "manageable" level, that's a good sign as I was barely starting to feel that way about a week ago. I started being able to sleep with a lower setting of my Bose Sleepbuds than onset but lately its been forcing me to set to the original setting. We will take control of it and science will make sure that we do. As for Lenire, yes I am a little jealous that you are getting your device soon, but more happy to see it getting to those who need it and have suffered with this for longer than I have. I am in California, USA so it will likely be a while before I get to try it since I can't afford to fly over there at this time.

The trouble is just when I think it's getting manageable it returns with a vengeance. That's why living with tinnitus is like living in permanent Hell. Part of your torturers weaponry is to let you have a few days off now and then knowing full well he'll be dragging you back in kicking and screaming just when you were about to start enjoying life once more.

 

[Samantha R]

The trouble is just when I think it's getting manageable it returns with a vengeance. That's why living with tinnitus is like living in permanent Hell. Part of your torturers weaponry is to let you have a few days off now and then knowing full well he'll be dragging you back in kicking and screaming just when you were about to start enjoying life once more.

I'm so sorry to hear this Allan, I really am. It's absolutely devastating, and I remember the depression and anxiety (that I still get occasionally), all too well.
Would you consider going back on the anti depressant?
I really think that you've got some hope with Lenire, I'll be crossing everything in the hope you get the relief you desperately need and deserve.
Hang in there Allan.

 

[ChrisBoyMonkey]

The trouble is just when I think it's getting manageable it returns with a vengeance. That's why living with tinnitus is like living in permanent Hell. Part of your torturers weaponry is to let you have a few days off now and then knowing full well he'll be dragging you back in kicking and screaming just when you were about to start enjoying life once more.

Exactly how I feel. I've explained the situation to my wife almost verbatim. Yes this is very rough, it has made sleeping one of the hardest things for me to do when it used to easily be one of my favorite things to do. It's like it's read the Art of War and knows how to battle. but still, we must know every day we wake up we are prevailing over it. Victory is in sight, and tinnitus will not be the end of either of us. We are stronger than that, and we have reinforcements on the way; you just will happen to get the first wave much sooner than I will. As someone who's had this longer than I have, I say you deserve the help first. Even if Lenire only wins a battle, we still have many more things on the way to win the war. We will win the war on tinnitus.

 

[Tinniger]

What particularly annoys me is that science apparently has no explanation for the ups and downs of tinnitus intensity.

 

[Allan1967]

Hi all,

I'm at a very low point again, contemplating suicide, crying to God to take me home and away from all this. Everyday is torture with this condition. Even on better days I know at some point it will get worse again.

I've started writing letters for my kids. I just don't know how or want to continue living like this. It's torture every single day almost. Life isn't worth living. My parents are elderly. My Dad had a stroke and he treats my Mum really badly. She is always in tears and she has terminal cancer effectively.

I look at my son and two girls, even though I love them with all my heart it isn't enough to make me fight on and get through this.

I am sorry.

 

[ajc]

Hi all,

I'm at a very low point again, contemplating suicide, crying to God to take me home and away from all this. Everyday is torture with this condition. Even on better days I know at some point it will get worse again.

I've started writing letters for my kids. I just don't know how or want to continue living like this. It's torture every single day almost. Life isn't worth living. My parents are elderly. My Dad had a stroke and he treats my Mum really badly. She is always in tears and she has terminal cancer effectively.

I look at my son and two girls, even though I love them with all my heart it isn't enough to make me fight on and get through this.

I am sorry.

Try to be happy that you were able to get Lenire so early on.

Give it a couple of months and see how you get. Please.

 

[Allan1967]

Try to be happy that you were able to get Lenire so early on.

Give it a couple of months and see how you get. Please.

The White noise hiss on Lenire is making it worse, I'm sure.

 

[JohnAdams]

@Allan1967

Have you tried any turmeric or curcumin?

 

[Allan1967]

@Allan1967

Have you tried any turmeric or curcumin?

Yes. No effect. Got some saffron off a lovely lady I know so am giving that a try.

 

[Tinniger]

The White noise hiss on Lenire is making it worse, I'm sure.

Why do you think white noise makes your tinnitus worse?
Additional questions: Do you have bilateral tinnitus?
Can you influence your tinnitus somatically, in what way and to what extent?

 

[Allan1967]

It's quite a harsh noise I find.

Yes to bilateral.
Yes...by clenching my jaw or jutting my jaw.

 

[Chinmoku]

@Allan1967, I feel for you. Mine is screaming like crazy. It never abates but there are days when it becomes barely bearable. Tonight I slept two hours. I have other health issues too. I am with my two little kids telling myself I can't stand another hour of this. My wife does not understand this condition and is fed up with me. My mum is terminal. I think of death too as a liberation but the impact on my kids would be devastating. They hug me all the time. They have understood that I am suffering despite the tired smile I put on my face and my attempts to play with them. This condition is inhumane. Every day I pray God frees us from this torture. This is certainly testing one's faith, especially when I think of my children.

I hope Lenire starts working for you once they remove the white noise hiss. It's worth a shot for your kids I believe. My appointment is somewhere in 2020. I hope it will work for me.

 

[Tinniger]

It's quite a harsh noise I find.

Sorry if I didn't notice, but you're already using Lenire?

 

[Lynny]

Hi all,

I'm at a very low point again, contemplating suicide, crying to God to take me home and away from all this. Everyday is torture with this condition. Even on better days I know at some point it will get worse again.

I've started writing letters for my kids. I just don't know how or want to continue living like this. It's torture every single day almost. Life isn't worth living. My parents are elderly. My Dad had a stroke and he treats my Mum really badly. She is always in tears and she has terminal cancer effectively.

I look at my son and two girls, even though I love them with all my heart it isn't enough to make me fight on and get through this.

I am sorry.

I relate to almost all of what you're saying but you need to make sure Lenire really doesn't work for you. Perhaps when they alter it it will be better. What did they tell you to do in this case?

I will pray for you and your family.

Keep strong

L

 

[Greg Sacramento]

What particularly annoys me is that science apparently has no explanation for the ups and downs of tinnitus intensity.

For physical tinnitus - Injury and infection causing more of same.
Neck - hyperextension is a cause - sometimes with pressure to jaw.
Oral cavity infection and trauma - of teeth, gums, soft tissues, nerves, muscles and jaw.
Both can draw in sinus, facial, and the ears.

Often the first step is to test and clear infection
THEN
For mouth - a manual cleaning
Jaw posture methods
Forward posture correcting methods
Allergy control
And always avoid loud noise

 

[John Mahan]

The trouble is just when I think it's getting manageable it returns with a vengeance. That's why living with tinnitus is like living in permanent Hell. Part of your torturers weaponry is to let you have a few days off now and then knowing full well he'll be dragging you back in kicking and screaming just when you were about to start enjoying life once more.

Not that one can be objective about their emotional state and we all know here how loud and variable tinnitus can take us to the depths of despair.

But...there are people that live somewhat normally with 'screaming tinnitus'. This may seem unfathomable to you because you can't. I personally believe its possible with right brain chemistry. Yes, like an alluring tempress your tinnitus beckons you to a state you believe you live at then bam, back to screaming tinnitus. The nature of the beast.

But, have you experimented with tweaking your brain chemistry by working with a shrink to try different medications to alter your perception of tinnitus?

I will tell you gutting out something you can't tolerate doesn't work. If you can't slay the demon, you need to learn to accept it on some level which 'is possible' if you alter your brain chemistry.

Have you tried different meds? I use for example Clonazepam which 'works wonders' when I feel like climbing up the ledge. It chills me out and lowers my tinnitus many times into the next day. I only take it 'once in a while' when I feel overwhelmed which sounds like you are now.

There are a plethora of meds to consider or try. Probably the forum's leading expert on surviving this scourge is Glynis and a PM to her I believe would be well advised.

We all know how you feel...as if the walls are closing in. There is help.

 

[Allan1967]

Not that one can be objective about their emotional state and we all know here how loud and variable tinnitus can take us to the depths of despair.

But...there are people that live somewhat normally with 'screaming tinnitus'. This may seem unfathomable to you because you can't. I personally believe its possible with right brain chemistry. Yes, like an alluring tempress your tinnitus beckons you to a state you believe you live at then bam, back to screaming tinnitus. The nature of the beast.

But, have you experimented with tweaking your brain chemistry by working with a shrink to try different medications to alter your perception of tinnitus?

I will tell you gutting out something you can't tolerate doesn't work. If you can't slay the demon, you need to learn to accept it on some level which 'is possible' if you alter your brain chemistry.

Have you tried different meds? I use for example Clonazepam which 'works wonders' when I feel like climbing up the ledge. It chills me out and lowers my tinnitus many times into the next day. I only take it 'once in a while' when I feel overwhelmed which sounds like you are now.

There are a plethora of meds to consider or try. Probably the forum's leading expert on surviving this scourge is Glynis and a PM to her I believe would be well advised.

We all know how you feel...as if the walls are closing in. There is help.

My GP would never prescribe me Clonazepam. I have tried different anti-depressants to no real benefit.

Thank you John.