Can’t Function at a High Level Anymore

[Barry098]

Just finished my job application... that was a painful process which took about 10x longer than it should have and there were a few breaks in there where pillows were getting punched but, I stuck with it and I think it turned out alright in the end.

Everyday feels like an uphill battle with this monkey on my back but I totally agree with your attitude. What the hell else can we do other than keep moving forward.

I remember that the first time I had tinnitus back in 2017, I forced myself to interview for a job that I didn't think I could do because I felt so disabled. Well, I got the job and as it turned out, the confidence boost in addition to the huge amount of work that the job entailed, helped distract me from the tinnitus.

Eventually my tinnitus went away completely.

It came back with a vengeance this summer because of my own complacency around loud music but that is another story... and so goes life...

 

[AfroSnowman]

Just finished my job application... that was a painful process which took about 10x longer than it should have and there were a few breaks in there where pillows were getting punched but, I stuck with it and I think it turned out alright in the end.

Everyday feels like an uphill battle with this monkey on my back but I totally agree with your attitude. What the hell else can we do other than keep moving forward.

I remember that the first time I had tinnitus back in 2017, I forced myself to interview for a job that I didn't think I could do because I felt so disabled. Well, I got the job and as it turned out, the confidence boost in addition to the huge amount of work that the job entailed, helped distract me from the tinnitus.

Eventually my tinnitus went away completely.

It came back with a vengeance this summer because of my own complacency around loud music but that is another story... and so goes life...

Well done man. It is really hard to keep going with decreased function and this weird form of pain. Whatever the outcome of your application that you were able to push through is a testament to your strength. Congrats.

 

[catchthebus]

I admire your tenacity. I have been going on three years now, a constant slope of worsening that no-one can explain. I don't know how much longer I can go on. I too don't want to give in because I have family depending on me but I wonder at what point the pain will become too much to keep going. If I try to do something normal with protection I get worse, if I spend all day in my bedroom I get worse, no matter what I do I get worse, medical doctors are useless, or worse than useless, research is insanely slow, COVID-19 has monopolized most medical attention, I don't know what kind of hope we can hang on, we need a miracle, at this level of distress it's not a life, it's torture and functioning becomes impossible.

Why this curse of a condition has not been investigated properly by medicine so far escapes me, especially given how much it is costing veteran associations and how many musicians are affected by it.

I know the origin of your tinnitus was atypical, mine instead started with a trivial cold. A stupid infection reaching the inner ear and your life is basically ruined. Thank you, evolution, you really did great.

I feel you I could strangle evolution.

 

[catchthebus]

Thanks. Some days my attitude is better than others, but I keep trying and have been able to continue to achieve more professionally as time goes on.

Yes sadly my tinnitus is rather severe and unending. I imagine that there must be a situation so loud that I couldn't hear it, but at that point I'd probably need ear protection from the noise. So yes I can hear it loudly over everything almost always.

Once in a blue moon if I am having a super gentle day a loud shower might be able to mask it but that's it.

But the show must go on, right?

I just wanted to commend you on how strong you are. To keep going and in fact continuing to push yourself to achieve more than before in spite of such a miserable inescapable condition is truly extraordinary. There are some people out there who always seem to be doing extraordinarily difficult or effortful things that others either can not or would never do, and if I'm a human, then to me, it really is like such people are super human - gods among men. Anyway, I'm glad you have the strength to keep your life and fight against life's truly unfair curses. I truly hope from the bottom of my heart that your tinnitus will fade and go away over time or that the happiness you end up achieving in the end from all of your efforts and struggles far outweighs what you've had to go through. For taking such a courageous stand, you deserve the best life has to offer. All of you here on this forum and people all across the world choosing to continue to live on courageously despite having silence stolen from them deserve the best.

 

[IntotheBlue03]

@AfroSnowman, so sorry to hear we are in the same boat as Americans. I am on the verge of losing everything and wish I could just function at work. Losing healthcare, income, and no path to disability just seems like a death sentence for us that's inevitable. I've been fortunate to have the ability to work from home but every time I sit down in between panic attacks I feel my limbic system kicking in for another one and just trying to read emails is an impossible task. I'm 7 weeks in but was hoping to read this gets easier for folks, I doubt it does for those of us with severe high frequency highly reactive tinnitus and that's the theme I keep seeing here. Very scared for my future and every second feels torturous since I can't seem to disable the panic mode even though I am mostly medicated now.

 

[AfroSnowman]

@AfroSnowman, so sorry to hear we are in the same boat as Americans. I am on the verge of losing everything and wish I could just function at work. Losing healthcare, income, and no path to disability just seems like a death sentence for us that's inevitable. I've been fortunate to have the ability to work from home but every time I sit down in between panic attacks I feel my limbic system kicking in for another one and just trying to read emails is an impossible task. I'm 7 weeks in but was hoping to read this gets easier for folks, I doubt it does for those of us with severe high frequency highly reactive tinnitus and that's the theme I keep seeing here. Very scared for my future and every second feels torturous since I can't seem to disable the panic mode even though I am mostly medicated now.

Give yourself time and give yourself a break. This is a really hard life changing thing and it is going to take some real time to adjust. For right now accept the fact that it is hard and have faith that over the next 6-9 months you are going to be in a much better place. As you have health insurance maybe get a therapist, good luck finding one that deals with tinnitus, but you should be able to find one that works with people in trauma, life change, and/or CBT.

I still sadly struggle with this nearly 3 years in but that is really the rarity. Most people do almost magically find a way to push it into the background. And even for me, though it sucks and is a bit of a drag on my cognitive/emotional function, it is nothing like it was during my first 3-6 months where I was just a broken animal moaning in pain. I might not be better but I'm 100x better than I was.

Peace.

 

[Uklawyer]

Join the f**kin club. I had anxiety and ME that made getting through university and law school difficult and meant I could not function properly as a competent lawyer who could have had a very comfortable life (though commercial law is not that much fun). All that continued, then got hit with tinnitus on top and not working right now. I just looked at the hundreds of thousands some people in my peer group are making (again, not fun, and US culture of work like a beast to achieve your capitalist dream is terrible), and it still hits a raw nerve. It's life though. We are the chosen ones.

 

[Barry098]

I feel my limbic system kicking in for another one and just trying to read emails is an impossible task. I'm 7 weeks in but was hoping to read this gets easier for folks, I doubt it does for those of us with severe high frequency highly reactive tinnitus and that's the theme I keep seeing here. Very scared for my future and every second feels torturous since I can't seem to disable the panic mode even though I am mostly medicated now.

It generally does get easier with time. The good (and bad) news is that 7 weeks is just the beginning of the roller coaster ride. You need to give it a solid 6 months before you can even start looking for improvement. Even then, the improvement may be more how you react differently than an actual lowering of the sound. Either way though, have faith that things will get easier. I'm in a much better place now than I was 4 months ago, but it has been one hell of journey.

 

[IntotheBlue03]

@AfroSnowman, thanks so much for the words of encouragement. I know I've been lurking around these forums and probably annoying folks but I am 7 weeks in and already feel like I am at the end of my rope. I resorted to Grandaxin to see if I could break the panic fight or flight mode I've been in and it seems to be taking the edge off but I can no longer leave the house as of right now without severe panic and am still panicked the majority of the time at home.

Do you feel CBT is better than TRT? That's the impression I'm getting across the boards.

Has the reactiveness of your tinnitus calmed down at all? That's the part that's destroying me. Because of it I cannot mask or get a break when needed.

If I could just break the cycle of panic and anxiety I feel I'd be doing better. That's a relief to hear you are doing better now. Here's to hoping we can both keep our jobs.

 

[IntotheBlue03]

It generally does get easier with time. The good (and bad) news is that 7 weeks is just the beginning of the roller coaster ride. You need to give it a solid 6 months before you can even start looking for improvement. Even then, the improvement may be more how you react differently than an actual lowering of the sound. Either way though, have faith that things will get easier. I'm in a much better place now than I was 4 months ago, but it has been one hell of journey.

Thanks @Barry098, this is very encouraging. Last week I was almost hospitalized so I hope at least that aspect is behind me but not sure.

Were you ever medicating? And did you find any sound therapy that has worked for you?

This sounds ridiculous but I'm absolutely hanging my fragile mind state on Susan Shore's device and hoping that I and everyone else on this board won't be waiting another year to get some relief.

 

[Uklawyer]

This sounds ridiculous but I'm absolutely hanging my fragile mind state on Susan Shore's device and hoping that I and everyone else on this board won't be waiting another year to get some relief.

So am I! CBT is generally recommended. TRT may help, but I don't know how you are with sound at the moment...

 

[AfroSnowman]

Do you feel CBT is better than TRT? That's the impression I'm getting across the boards.

Not much TRT done in the US. I'm sure it would be fine if you could find it, but more generally talking with a pro on getting you through this panic period is the best thing you could do for yourself right now.

 

[volsung37]

As has been said, things will improve as the months roll by.

There is very little you can do until the limbic brain calms down.

I've been through this twice and its always been the same.

Now, unfortunately, going through it again much worse from COVID-19 vaccine.

 

[DebInAustralia]

As has been said, things will improve as the months roll by.

There is very little you can do until the limbic brain calms down.

I've been through this twice and its always been the same.

Now, unfortunately, going through it again much worse from COVID-19 vaccine.

Hi volsung37,

I have read a number of your posts around your relapse. I am sorry to hear that.

It is so frustrating when this happens as habituation/volume goes down, life returns to near normal, doesn't it!

How do you cope when the noise is really getting to you?

Just want to say that I think the vaccine probably increases neuroinflammation aka TNF-alpha. Would you be open to trialing high-dose Curcumin or low-dose Naltrexone (as I know these reduce TNF-alpha)?

Even Resveratrol inactivates microglia and Baikal Skullcap can help lower TNF-alpha as well.

 

[volsung37]

Hi volsung37,

I have read a number of your posts around your relapse. I am sorry to hear that.

It is so frustrating when this happens as habituation/volume goes down, life returns to near normal, doesn't it!

How do you cope when the noise is really getting to you?

Just want to say that I think the vaccine probably increases neuroinflammation aka TNF-alpha. Would you be open to trialing high-dose Curcumin or low-dose Naltrexone (as I know these reduce TNF-alpha)?

Even Resveratrol inactivates microglia and Baikal Skullcap can help lower TNF-alpha as well.

It is very frustrating Deb. Tinnitus had stopped being part of my life for a number of years. The sounds were barely perceptible. That all changed with the jab. It's not even the ordinary tinnitus that bothers me. I have acquired a very loud banging pulsatile tinnitus which keeps me from sleeping naturally. It's worse than anything I've experienced before.

Interesting about neuroinflammation. That seems to be the main theory around COVID-19 tinnitus.

Thanks for the suggestions. I might try high dose Curcumin. Will have to research Naltrexone. I'm so anti-pharma now that the thoughts of putting anything more inside my body terrifies me.

I have a feeling the only thing that will cure this is time. I will probably at some point have to get an MRA.

Hope you're coping Deb. You've been around the boards for a while. Hope things have improved for you.

 

[kingsfan]

Would you be open to trialing high-dose Curcumin

What dosage of Curcumin?

 

[kingsfan]

What dosage of Curcumin?

Finding reports of Turmeric commonly being contaminated with lead. Maybe I'll make a new thread about it.

Ground Turmeric as a Source of Lead Exposure in the United States

 

[Barry098]

Thanks @Barry098, this is very encouraging. Last week I was almost hospitalized so I hope at least that aspect is behind me but not sure.

Were you ever medicating? And did you find any sound therapy that has worked for you?

This sounds ridiculous but I'm absolutely hanging my fragile mind state on Susan Shore's device and hoping that I and everyone else on this board won't be waiting another year to get some relief.

I tried Zoloft and that was the hardest 9 weeks of my life, probably barely survived it in fact. Ears rang louder than ever, I couldn't sleep, couldn't eat, lost 30 lbs in those two months. I know that some people find meds helpful but personally I think antidepressants are really dangerous drugs.

I finally quit and decided to just tough out the crushing anxiety, and keep the occasional Xanax (.25 mg cut in half / twice a week) on hand when I couldn't sleep. That was about 3 months ago now.

Over the past few weeks, the anxiety seems to have noticeably lowered. I'm not focusing on my ears as much and when I do I don't go into a spiral like before. I feel almost normal for long stretches at a time. You will get there too. Unfortunately it just takes time. You just need to literally keep putting one foot in front of the next until you start to get out from under it. I wish I had a secret weapon, I would gladly share it with everyone here if I did.

Know that you are a lot stronger than you could have ever imagined, and you can this.

 

[Damocles]

I know that some people find meds helpful but personally I think antidepressants are really dangerous drugs.

I agree, just like benzodiazepines, SSRIs are a serious medication and not to be messed with without the guidance of a trusted medical professional.

Both have messed up badly, people who took them, even when used responsibly, and so are nothing short of a gamble; hence in most cases, a last resort.

But they can also be life savers (I'll explain why I say this in a moment).

I finally quit and decided to just tough out the crushing anxiety

Big respect to you for doing this, and it's the path I'd recommend most people take if they can manage it.

If you can beat your anxiety naturally, then you're not going to risk any worsening (of the current condition) or creation of additional health complications, which in turn are only going to make your anxiety in the long run, worse; so I completely advocate your chosen approach.

However, in my case, 7 years ago, this just wasn't an option.

My anxiety was so bad that I had to be rushed to hospital several times with tachycardia, and my heart rate going at 200bpm for 8-9 hours at a time. And this just kept happening.

I attended CBT classes, and it didn't change a thing. I was still ending up in hospital hooked up to ECG machines, with the doctors shrugging and saying "we don't really know what's going on".

Anyway, one final anxiety attack in 2016 convinced me to ask my doctor to prescribe me an anti-depressant.

Got given Citalopram and was told to start low, then taper up. Anyway, I never had to taper up. The anxiety attacks stopped and I've been on a low dose ever since, with my life pretty much back to normal.

So make no mistake, while these drugs may be very dangerous, I would very likely be dead now if I hadn't started taking them.

As with everything, you have to take into account the risk:benefit ratio.

 

[IntotheBlue03]

I agree, just like benzodiazepines, SSRIs are a serious medication and not to be messed with without the guidance of a trusted medical professional.

Both have messed up badly, people who took them, even when used responsibly, and so are nothing short of a gamble; hence in most cases, a last resort.

But they can also be life savers (I'll explain why I say this in a moment).

Big respect to you for doing this, and it's the path I'd recommend most people take if they can manage it.

If you can beat your anxiety naturally, then you're not going to risk any worsening (of the current condition) or creation of additional health complications, which in turn are only going to make your anxiety in the long run, worse; so I completely advocate your chosen approach.

However, in my case, 7 years ago, this just wasn't an option.

My anxiety was so bad that I had to be rushed to hospital several times with tachycardia, and my heart rate going at 200bpm for 8-9 hours at a time. And this just kept happening.

I attended CBT classes, and it didn't change a thing. I was still ending up in hospital hooked up to ECG machines, with the doctors shrugging and saying "we don't really know what's going on".

Anyway, one final anxiety attack in 2016 convinced me to ask my doctor to prescribe me an anti-depressant.

Got given Citalopram and was told to start low, then taper up. Anyway, I never had to taper up. The anxiety attacks stopped and I've been on a low dose ever since, with my life pretty much back to normal.

So make no mistake, while these drugs may be very dangerous, I would very likely be dead now if I hadn't started taking them.

As with everything, you have to take into account the risk:benefit ratio.

Hey @Damocles,

I'm so glad you found what worked for you, that's refreshing on this forum. Was the crippling anxiety due to tinnitus onset or did you have severe anxiety before that?

 

[Damocles]

Was the crippling anxiety due to tinnitus onset or did you have severe anxiety before that?

I had no idea what anxiety was prior to tinnitus.

I'd suffered minuscule levels of anxiety in my early teens, I realise now, looking back (mostly social).

But it was nothing compared to what came after 2009.

Anything I had suffered prior to that date was a joke in comparison.

And it just built from then (as a result of: the subsequent phonophobia, frequent noise exposures, spikes, and it's general existence) until it almost killed me in 2015.

The worst part about anxiety is how stealthy it is, you don't even know you're suffering it until it's reached almost critical levels.

The most sage advice I can give to any tinnitus sufferer (apart from: protect your f*cking ears, and make sure it doesn't get any worse) is that anxiety is the symptom of tinnitus that will kill you. And seeing as you can't treat the tinnitus, use any method you can to treat the anxiety, or quell it before it becomes a problem.

 

[Barry098]

I had no idea what anxiety was prior to tinnitus.

My experience too...

anxiety is the symptom of tinnitus that will kill you.

Absolutely agree. I wonder what the long term effect of my two bouts with tinnitus will be on my body. It takes a toll on your health.

How long did it take for the Citalopram to kick in for you?

Great responses BTW @Damocles (as usual

 

[IntotheBlue03]

I had no idea what anxiety was prior to tinnitus.

I'd suffered minuscule levels of anxiety in my early teens, I realise now, looking back (mostly social).

But it was nothing compared to what came after 2009.

Anything I had suffered prior to that date was a joke in comparison.

And it just built from then (as a result of: the subsequent phonophobia, frequent noise exposures, spikes, and it's general existence) until it almost killed me in 2015.

The worst part about anxiety is how stealthy it is, you don't even know you're suffering it until it's reached almost critical levels.

The most sage advice I can give to any tinnitus sufferer (apart from: protect your f*cking ears, and make sure it doesn't get any worse) is that anxiety is the symptom of tinnitus that will kill you. And seeing as you can't treat the tinnitus, use any method you can to treat the anxiety, or quell it before it becomes a problem.

Couldn't agree with this more. I had no idea what a real panic attack was until tinnitus bulldozed into my life. I've wondered if what I've experienced is similar to drug addicts going through withdrawal because I've never felt like I was going to physically collapse from panic and pressure and tinnitus drove me to this over a matter of weeks. I'm not sure if this experience resonates with others but I was less panicked in the beginning, it was the steady increase of a chronic high anxiety/panicked state that led to my near hospitalization and I wonder what happens in the pathways of the limbic system etc that may perpetuate this. Seems similar to neuroplasticity in the brain maybe?

@Damocles, I'll keep that Citalopram in mind long term because breaking this severe anxiety is solely key to survival in this nightmare. Was that intoxicating/impairing at all when you first started taking it? Can you function on it well?
I haven't seen any other anti-anxiety meds recommended for severe panic attacks except benzos so this peaks my interest.

 

[Damocles]

I wonder what the long term effect of my two bouts with tinnitus will be on my body. It takes a toll on your health.

It's something I'd rather not think about (in relation to myself).

How long did it take for the Citalopram to kick in for you?

About 1 week.

Couldn't agree with this more. I had no idea what a real panic attack was until tinnitus bulldozed into my life. I've wondered if what I've experienced is similar to drug addicts going through withdrawal because I've never felt like I was going to physically collapse from panic and pressure and tinnitus drove me to this over a matter of weeks.

I've been to places with it that I don't even like to recall, but I know there were times I didn't think I would still be here, and unlike some people with (severe) tinnitus, that was never a desire of mine.

I wonder what happens in the pathways of the limbic system etc that may perpetuate this. Seems similar to neuroplasticity in the brain maybe?

I'm not the person to provide any speculation on this, however what I can tell you, is that if you are unable to relax and let the sound inside your head "wash over you", then your brain is identifying it as a threat that it cannot escape; subsequent fight or flight is initiated, and your entire system is then flooded with adrenalin for far longer than the human body was ever intended to withstand.

Was Citalopram intoxicating/impairing at all when you first started taking it? Can you function on it well?

It messed with my sleep and spiked my tinnitus, along with hot flushes and headaches for a couple of days while my body was adjusting to it, but no discernible effect on my cognition. After 1 week I thought it had stopped working because I wasn't feeling any different. But as I said, never suffered a significant anxiety attack since.

I'll keep that Citalopram in mind long term because breaking this severe anxiety is solely key to survival in this nightmare.

I haven't seen any other anti-anxiety meds recommended for severe panic attacks except benzos so this peaks my interest.

So here's the thing, I would love to tell you to just go ahead and get it prescribed to you (because it has definitely worked for me), but I have to add the disclaimer: that there are people who believe it left them with permanently worse tinnitus (I remember reading accounts on the internet, after I had started taking it - while my tinnitus was spiked - thinking I had probably ruined my life).

In any case, when I was first issued the drug, it was this post that convinced me to go ahead and take it (notice how @Markku also experienced no worsening of his tinnitus, but he still added the disclaimer; because no one wants to be held responsible for advocating a drug and it then having an adverse effect. Everyone is on their own when it comes to these gambles).

But then, if you search citalopram on Tinnitus Talk, you'll notice most of the accounts say it had no effect on their tinnitus.

Also there are people on here that swear Finasteride left them with worse tinnitus (a male hair loss drug), but I've been taking that for 6 years along with the Citalopram, and I've experienced no spike from it (permanent or temporary).

So the choice is yours @IntotheBlue03; just consider me one positive account in your collection of data.

One thing is for certain though, whether by the use of drugs or natural means, you should absolutely address the anxiety.

 

[kingsfan]

My rule with any antidepressants - take the smallest dose possible. Even smaller than the doctor recommends if you can. If you can safely cut the pills up, then do so. Monitor your tinnitus daily while taking it. Gradually up the dose little by little every 4-6 weeks while continuing to monitor your tinnitus. If at any point you feel it is affecting your tinnitus negatively, begin slowly tapering down. Do not stop cold turkey.

Disclaimer: I am not a doctor.

 

[Barry098]

I totally agree with both @Damocles and @kingsfan.

Just wanted to add that I've "heard" good things about lowering anxiety through micro-dosing Psilocybin mushrooms and/or Ketamine...

Like Damocles, I wouldn't want to endorse these things and then find out that they permanently messed someone up but, I know that these substances are currently being studied in the treatment of depression and anxiety that doesn't respond to counseling and the typical antidepressants.

 

[Lane]

I had two siblings who were taking Citalopram (or Citralopram; I think there's a similar drug that's almost identical). I decided to give it a try by taking 1/4 tablet, and had a reaction that resembled having drunk way too much coffee. A few days later, I tried it again, with the same reaction. The "unsettledness" from those two experiments was something I decided I never wanted to experience again.