In Silence My Tinnitus Is 2/10, Around Noise It’s a 10/10. Help?

[Michellejean]

I have been having a really hard week. I am not always good at replying to people's encouraging words here. Or in my own life. Maybe it's because I feel depressed and withdrawn but I want to start this post saying thank you to everyone here.

I am down to .12 mg Ativan a day from 2mg a day which I began taking when I got tinnitus. I am looking forward to being off Ativan completely but I think it's making me really depressed. I have just felt like giving up these past few days.

Crying a lot. Obsessing a lot. Spending a lot of time lurking the forum. I love you guys.

I keep feeling like this is not real life. I keep wondering how long I can go on this way.

My symptoms:
-visual snow
-TTTS in right ear
-chronic pain in ears
-ear fullness
-muscle spasms all over my body, calves, quads, eyes, neck, face, arms, fingers, just all over all the time
-and tremors (but I've always had that for the most part)
-pulsatile zing tinnitus when I bend over in left ear
-tinnitus is bilateral


All of this started from an ear infection.
This is my fourth month in.

As I sit here in bed in absolute silence (externally that is, not in my own head) I keep wondering why is my Tinnitus so soft when it's quiet? But in the car, taking a walk, even at the back bay (a place where I live that is a cove with a recreational field next to a busy highway- at least 80 dB in natural ambient sound)
my tinnitus is so high pitched, so sharp, so electric I can hear it electrocute my brain. It's not a pure tone high pitched sound it's more like a sound that teeters back and forth. Maybe oscillates. Like a squeaky wheel would do.

I have been reading a lot about hyperacusis and "reactive tinnitus" on here. I'm worried I have hyperacusis that create this sound around noise due to damaged hair cells in my ear. The weird thing however is I still hear these high pitched sounds in silence, but way way quieter.

My actual pure tone tinnitus in my right ear is a 2/10 eeeee sound. It sounds like it's coming from another room. Easily maskable .

My left ear is a static hiss, also 2/10 and maskable.

However no point in masking as the second I do cover up the eeee and the hiss I am berrated with sharp electric ️ sounds that have no pattern just e e e e e e e e e e e like someone fucking on Satan's squeaky evil bed.

I would have no depression and habituate if the actual "tinnitus" in my ears was all I had but what on earth do I do about this hyperacusis / reactive tinnitus?

All I have seen for a change in the past two months is that the frequency keeps getting higher and higher. That's all that gives me hope. That one day it will be so high I don't hear it.

I just feel hopeless. I feel sad I can't go to the beach, a very loud place, and enjoy the sound of the waves. Instead it's just a bolt of lightening raping my brain. Sorry for being vulgar.

I'm just so tired of telling myself every second of everyday "it will get better, you can do this, you will habituate, you will cope, in one year it will be better, don't worry, don't be sad, look at your beautiful family, your awesome job, it's all going to work out"

I am trying to be positive, I am trying to habituate but I don't know how to cope with this reactive noise in my head. I just want to give up. All I can think is how I can't do this.

But I have to for my daughter. I have to for her.

 

[TuneOut]

muscle spasms all over my body, calves, quads, eyes, neck, face, arms, fingers, just all over all the time

Did you ever experience these spasms before? Do you know what might be causing them? Have you seen a doctor about it? You might want to have blood tests run, including vitamin and mineral status.

 

[Michellejean]

@TuneOut
Hello, no I have not experienced this before. I was thinking of going to my GP tomorrow and asking to see a neurologist and mentioning my symptoms. I did have many blood tests done however over the past 4 months and all that was out of the ordinary was low blood sugar

 

[CrystalB]

So sorry you are feeling this way girl I have H and it's so hard to deal with, mine too is worse when I'm around any kind of noise. The spasms have you been checked out by a doctor for them? It could be a underlining condition, that if seen too might help your tinnitus improve. Try to keep your head up

 

[Contrast]

Hi, first of all I experience the same problem you do to a lesser degree. I know what the electric static is like

Secondly, painful hyperacusis and reactive tinnitus are not the same thing
despite what some forum members are saying.

Painful Hyperacusis is a painful sensation caused by the auditory brain having a lower tolerance level to sound.
not tinnitus reacting.

The electric static and "eeeeee tonal noise" you experience is tinnitus, (not pusatile) that clearly means there is something wrong in the audiotory brain which indicates the ear infection you mentioned had, had to of caused some degree of hearing loss.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208401/


Do you know you have pusatile tinnitus, Did a doctor tell you?
If so you then unfortunately you have both. However you may not have P tinnitus at all.
https://www.webmd.com/healthy-aging/aging-pulsatile-tinnitus

Pusatile tinnitus is actually a vascular condition that shares nothing in common with actual tinnitus
Have a professional diagnose you.

Here's more information about the symptoms you have and they are all linked to hearing loss/tinnitus

Visual Snow
http://www.tinnitusjournal.com/articles/visual-snow-syndrome-and-its-relationship-to-tinnitus.html

TTTS
https://www.ncbi.nlm.nih.gov/pubmed/23571302

Chronic Pain in ears (this is most likely actual hyperacusis)
https://www.ata.org/news/news/hyperacusis-related-damage-nerve-cells-inner-ear

The good news is you may not have to habituate your entire life if science actually taken seriously and the TRT habituation shills get forgotten in history. Due to so many people complaining about tinnitus and rightfully so. Scientist actually listen and are trying to rush treatments to provide real help

Many clinical trials and pre clinical for hearing loss and tinnitus are coming!

https://www.tinnitustalk.com/thread...th-acoustic-and-body-stimulation.28022/unread

https://www.tinnitustalk.com/thread...igan-tinnitus-discovery-—-signal-timing.2805/

Two devices that directly stimulate the audiotory brain and are showing results in helping tinnitus.
Because they are devices it is a possibility that they may be on the market at 2021.

https://www.tinnitustalk.com/threads/frequency-therapeutics-—-hearing-loss-regeneration.18889/
http://frequencytx.com/
Active hearing loss regeneration clinical trial

https://www.novartis.com/
Active Clinical Trial for hearing loss

https://decibeltx.com/
They have plans to start trials to tackle all sorts of otological disorders relating to hearing, balance and tinnitus
with one of the brightest scientist on the issue on there team.

http://www.otonomy.com/
Mid 2019 they will start a trial to repair the synaptic connections in the ear

http://www.audiontherapeutics.com/about-hearing-loss/
they are starting a trial to restore hearing

The hypothesis is that if hearing loss causes tinnitus due to neuro-plastic alteration then undoing the original damage will unwire the brain from having tinnitus.

Hang in there help is on the way and you may not have to live with this forever.

 

[Michellejean]

@CrystalB thank you for your sympathy. I just read your post and can completely relate to all of the insanely sharp sounds taking a toll on the mind and body. I feel so exhausted all of the time. Have you noticed ANY improvement since the onset?

 

[Michellejean]

@Contrast thank you very much for all of the information. You definitely like science as I have read in a lot of your posts. You use a lot of evidence based theories to make your statements. I am almost scared to look at the links you have posted. I keep hoping that my ears will heal.

I read a post of yours that your tinnitus was actually reducing. Is this still the case? I hope it is !

 

[Michellejean]

I'm 4 months in and having a huge set back. I've been hopeful things would start getting better by now. Hopeful I'd be closer to habituation. Hoping my symptoms would dissolve like sugar in the coffee I no longer get to have.

I've seen tremendous improvements since tinnitus started and at the same time new sounds and reactive tinnitus are destroying my will to have hope.

I'm sad. I'm worried. I want the answers to be given to me but there are no answers to this cruel noise.

Can anyone provide positive stories of themselves improving with time? I feel like the ghost of who I once was. I wish I could just be in a coma or something.

Just lost. Alone. Withdrawn. Trying so hard.

I continue to work,exercise,take care of my daughter, enjoy the peace when I am with family and distracted from this evil... but reality hits me hard when I am by myself.

How do I cope? How do I go on?

 

[Christophe_85]

Is that Reactive Tinnitus ???

 

[Roy114]

I don't really know what you're going through, since mine isn't really the same.
I have a high pitched sound the entire time, about a 7/10 (9khz pitch). So I hear it throughout the entire day aswell, but it stays the same in quiet rooms. Luckily for me there's no other sound and its only in one ear, but this was still so insanely difficult to me.

I'm not proud of it but my only escape was using drugs at parties. They made me forget about tinnitus for an entire evening and made me feel good, which was difficult in that period. But since my luck was already so bad, I also managed to get into a drug induced psychosis. It didn't last long, but left me scarred. For the next 4-5 months I suffered from an anxiety disorder, de-realization and insane nightmares and sleep paralysis every night (it also left me with visual snow). This also ended up making my awareness of tinnitus even worse. That moment of my life was so low that I actually didn't know how to carry on. I was in a similar spot to where you might be now.

Fast forward about a year to today, and I'm feeling so much better. I feel normal again. I feel happy again. The tinnitus is still here, alive and kicking, but it doesn't bother me like it used to.

I read somewhere in a study on tinnitus that the intensity and pitch of the tinnitus do not contribute to whether someone habituates to it or not, and that's entirely true. I'm only 21 years old and I had to go through all this sh*t, it just felt so unfair. But now I feel like it was a necessary evil. It just made me a stronger person, something I actually really needed. I don't consider myself fully habituated at all, but I definitely don't consider myself someones who's actually suffering anymore. I can live my life like I used to.

So many of us have awful stories yet so many of us actually climb this mountain and truly feel happy again. I know you will too. I even posted on this forum 2 months ago when I was feeling down, because its a bumpy road, one story in particular helped me alot.

I suggest you read this story: https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

It really helped me seeing someone having it alot worse than me who fully "recovered". What was amazing to me was how he now calls tinnitus a "Paper Tiger": something that seems threatening but is ineffectual and unable to withstand challenge. I have started to call it this aswell. I'm even gonna get a paper tiger tattooed on my arm in a few months hopefully. Whenever my tinnitus spikes, because everyone has bad days, I can just look at the tattoo and know its all okay. Also to remind myself that I can overcome any challenge if I put my mind to it. Its weird how quickly tinnitus can change to someone if their mindset changes. A human brain is truly amazing.

Also as others have said, help is on the way! Giving up is never the answer. Make it your goal to go as far into habituation as possible until a cure is found. Habituation takes time, it took me 2 years to get here and I'm still not fully habituated. Just hang in there.

I know I'm alot younger than most people on here, so some might jump to the conclusion that I don't know much about life, and maybe that's true. But I'm always here to talk to whoever needs it. Sometimes a listening ear can go a long way.

 

[Michellejean]

@Christophe_85 I don't know, is it?

 

[Michellejean]

@Roy114 thank you so much for your kind reply. You're right, sometimes all that is needed is a listening ear. I am so sorry for your struggle and at such a young age too. Don't be ashamed of your journey. Look at how strong you are now! You're giving me hope and tears in my eyes. I hope as time goes on things only get better for you.

I love that success story, I think I've read all of them 100 times each.

Can you tell me more about your visual snow? Did it get better? I hope so!

My heart and prayers are for you and everyone of us who ache in the arms of tinnitus.

 

[CrystalB]

@CrystalB thank you for your sympathy. I just read your post and can completely relate to all of the insanely sharp sounds taking a toll on the mind and body. I feel so exhausted all of the time. Have you noticed ANY improvement since the onset?

I have noticed some improvements some days, when I use my nose spray that my ENT prescribed, but most days it's still unbearable. We don't have the same tinnitus, but I in somewhat feel your pain I wouldn't wish this upon anyone. I keep telling myself you have to keep moving on, things can always get worse in my opinion, sometimes I think I have it hard now until something else worse comes along. We just have to take it day by day, And deal with the moment we are in now.

 

[Michellejean]

@CrystalB yes, we do have to take it one day at a time. I have actually found encouragement in the "help is on the way" rhetoric around this site. Maybe five years from now we will have our hearing restored. Maybe we can't give up ever. Just do our best. I'm so sorry yours has gotten louder. My heart is heavy these days. We can only do this together.

 

[Roy114]

Can you tell me more about your visual snow? Did it get better? I hope so!

It got slightly better but not much. But mine had nothing to do with my tinnitus. My visual snow is one of the many leftovers of my psychosis. The biggest reason having visual snow was so annoying was because of my de-realization and anxiety. When trying to sleep my brain just kept showing me faces and things like that in the visual snow. But now thats all gone the visual snow doesn't really bother me, I don't pay attention to it anymore and its only really noticable to me when its dark.

 

[TWK]

Hopefully my story, which is similar to yours, gives you some hope.

In late January of this year, I developed extremely loud tinnitus and hyperaccussis as a result of an ear infection. I'd had post-nasal drip from a previous chest cold for about 6 weeks when suddenly I started getting massive headaches (back of the head), ear discomfort, dizziness, and then the dreaded high-pitched 'eeeeeeeeeee', which in my case I hear in my head, not specifically in each ear.

At the same time, my limbic system seemed to go completely haywire in response to the tinnitus. I went from a very fit person in my late 40's, with a resting heart rate of ~53 to continuously having elevated heart rate, tremors (that would especially become worse when the tinnitus would spike), dangerously high blood pressure (in the 170's+/100's+). I also developed extreme insomnia, only able to sleep a couple hours per night, and that in small, broken stretches. I had massive night sweats, and would have tremors during the night, usually around the early morning hours when the body normally starts waking up. The hyperacussis made normal, everyday sounds like clinking cutlery, my kids voices, and even sometimes whispered words from my wife, cause painful twinging in my ears and painful feelings in my head. I can honestly say that I was beyond miserable, and several times openly and seriously contemplated ending my life if things didn't improve. The tinnitus I had was also very reactive to sound - it competed with everything I heard and was relatively quieter (although not 'quiet') in quiet rooms. It was so loud it could be clearly heard over the shower, in traffic, etc. If I listened to music (not on headphones) at any volume, even very low, the tinnitus would become very loud, and would seemingly react in time with the music.

I sought help from every angle - the inner ear infection was diagnosed by my GP. It was bilateral, and I had a lot of fluid behind my ear drums and inflammation. The eustachian tube on my right ear was completely blocked for about a month. I started using a nasal steroid spray, and eventually the tube started working again. I went to ENTs and had hearing tests. My first ENT was pretty useless, with no useful advice, but I've since found another ENT who has been supportive. My cardiologist (I have some minor heart damage from a viral infection that occurred almost a decade ago) tried calming down my nervous system with Beta Blockers, and while those meds were initially helpful, I quickly weaned myself off them (no easy feat) because the drug exacerbated my insomnia and gave massive anxiety between doses. I could go on and on, but I'll just summarize by saying that things were as bad as you could imagine for me physically and mentally.

However, things slowly have improved. The hyperaccussis faded over several months and is now completely gone, I think in large part because I took the stance that I would not shy away from sounds. Instead of covering my ears from every day sounds, I faced them head on. No earplugs or earmuffs for everyday situations like riding my bike or walking in heavy city traffic. I slowly began to exercise daily at low levels that didn't stress my body (hard to hold back when you're a former athlete). I sought counselling and help for dealing with the tinnitus and the other stressful parts of my life (I think that those that experience a great deal of stress from tinnitus may generally have stress-related issues). I sought help for my mild TMJ (I clench at night and my right jaw joint clicks into my ear). I had quit coffee and alcohol last fall, and still abstained. I worked on getting my diet better, even though it was already pretty good, I got more veggies and less salt into it. I started meditating - actually listening and focussing on the tinnitus rather than trying to make it disappear. I started accepting it rather than fighting it.

Over the last 5 1/2 months, things slowly improved. My ears began to physically heal from the effects of the viral infection, although I still have a lot of issues with sticking eustachian tube. I worked on dealing with my work and my life stress levels. My sleeping has slowly improved. It's not perfect yet, as most nights I still have one or two wake-ups, and sometimes it takes up to 90 minutes to get back to sleep, but I'm edging back to getting an average of 7+ hours per night and sometimes more. Lack of sleep can frequently make tinnitus and stress worse, and the converse is true - getting back to good sleep patterns reduces tinnitus.

At the beginning of June, I went on a 10 day hard-core fishing trip. This involved two flights on loud turbo-prop aircraft each way. I wore no earmuff or earplugs and it was FINE. 12-16 hour days spent wading in loud, cold, raging rivers each day, dead exhausted at night, and I actually got quite sick for 3 days with a cold. But I kept at it because it's a passion of mine and I love it - I wasn't going to let the tinnitus slow me down. I was with a good friend on this trip and after the first few days, I began to loosen up. I started drinking coffee again in mornings (a cup of his coffee has the caffeine content of 5 regular cups!), I started having the odd glass of wine or two in the evenings to celebrate the day. The first half of the trip the tinnitus was still there, all day, every day - but then, towards the second half of the trip - low and behold, the tinnitus faded to the point of not being present at all most times. I started sleeping better. By the time I arrived home and started back to work, I had no tinnitus at all - it was GONE. I was ready to start writing a success story here on TT.

BUT, as I re-acclimated to non-vacation life, the tinnitus slowly reappeared. Not too loud, but definitely there, all day, every day. I think that this underlined for me how stress and life situation can play a role in the degree and reaction to tinnitus. A month later, the tinnitus is still there most of time. Faded from it's original onset volume for sure, but definitely present. However, I've largely habituated - I can go hours where I don't notice or think about it if I'm busy. If I stop and listen for it, I find it. But then I get busy again and forget about it. Today, I woke up this morning, and since then, I have zero (or maybe 1/10 I really listen) tinnitus. I doubt it will last, but the habituation and the fading volume is saying to me that things are improving. I don't doubt that I might have a spike (I had one last week following swimming on the weekend and getting water stuck in my ears), but things will calm back down. I will get on with my life.

Hopefully you can see that I feel I had a extremely rough time at the onset of my tinnitus, but that by taking an active approach to dealing with it along with the other stressors in my life, things can and have improve!

 

[Layla23]

@TWK so did the reactivity go away?

 

[robHing]

No earplugs or earmuffs for everyday situations like riding my bike or walking in heavy city traffic.

If you have true reactive tinnitus then you will be in great pain due to easily-occurring spikes.

 

[TWK]

The reactivity of my tinnitus is completely gone. At one point it was so bad that whispered words from my wife physically hurt my ears. I would take baths because the shower caused me ear pain. However, I worked on living normally and not overprotecting my ears and the reactive discomfort and pain faded.
I still have tinnitus, but it is much reduced from what it was earlier in the year. It's a long hill to climb, and I still occasionally get spikes (I sometimes need to take NSAIDs and that spikes it badly), and I can't use my cell phone on my worst ear without pain, but otherwise my life is much closer to normal. I still don't/won't use ear protection for normal circumstances. Any condition where it would normally be warranted e.g. using a lawnmower, of course I would be smart an protect my ears.