Life Screwed by Nortriptyline. Not Doing Well.

Reluctant to get involved with yet another forum for an incurable disease. My unfortunate experience in the past has been they can be the unhappiest virtual places on earth, full of miserable people without hope who just reinforce your own misery. But I need help because at least there are people trying to help understand and fix this horror, but it's complicated and confusing out there. Any kind of hope at all would be enourmosly helpful.

As for my story I won't bore you too much and complaining about how awful it is or how close I've been to suicide would not have much point as we all are in the same boat. I've lived with this horror for 9 mos after an idiotic neurologist encouraged me to take Nortriptyline for minor sciatic pain that was bothering me when I rode my bike, which I was trying to do to get healthier after a depressing string of other health problems over the last few years. The screaming started after I increased the dose as prescribed, and it hasn't gone away, even though all the "studies" say drug induced tinnitus is supposed to be temporary. I've developed a tracking tool that tells me that it has gotten virtually no better in that time. I've been to very good doctors who have no help to offer and I'm more depressed than I've ever thought possible and my anger and anxiety is off the charts . I've been doing neuromonics for about ten weeks with no improvement. I'm trying to research vagus nerve stimulation. I'm hoping this site will help me understand what people are trying and what if anything might have a chance of working. I've tried a therapist who was no help and who recommended a psychiatrist as my next step. I'm considering it.

Thanks.

 

Tinnitus is not a disease. You possess the keys to relief, we all do, but you need to understand that you have the power and learn how to use it. I can't tell you how but you need to let go of the anger, anxiety and hopelessness. Negative emotions will only make things worse. I know, easier said than done but there's no other way that I know.

 

Hi @Guest48938493,
Nortryptaline has been a God send to me.
I'm on 50mg and sleeping better.
It has also stopped my head tinnitus and helps my low drone but still have high pitch tinnitus.
Nortryptaline and amitriptyline are the two ADs that can help tinnitus for some people.
Any increase can spike tinnitus but should plateau out.
Love glynis

 

Thanks for the quick response. My recent health history reads like a checklist of improbable injuries, medical screw ups , and rare diseases with no known cause or cure, often exacerbated or caused directly by incompetent doctors and my anger is not a new thing. Trust me, you wouldn't believe the stories if I told you, nor would any one with a knowledge of probability. I'm in constant pain from other conditions and the tinnitus is like the kill shot for me, one that slapped me down yet again as a direct consequence of trying to help myself get back up once more. These conditions have seemingly systematically destroyed everything I used to define myself and I frankly don't care if I was to die tomorrow, and believe it would ultimately be better for everyone involved.

The noise fills my head at night. I can't sleep without a lot of benedryl, can't ever relax, concentrate on a difficult task, take a nap, and I cry many nights as I lie listening to it waver and scream at me. I'm aware this part is not unique in any way. But regardless short of heavy medication the anger and depression is not likely to go away and I'm beyond caring. I think it may be the only thing keeping me from true insanity, if I'm not already there, even though virtually every other aspect of my life is suffering as a result. I will however do anything I can to improve the tinnitus. I have nerve stimulators and can make tone generators and will get any drugs that may help one way or another. I just need a plan and some hope because living like this is really not worth the effort.

 

I've very happy you've found relief, but its with the same drug that caused me problems. I've spent a lot of time wondering how something that dangerous could still be sold to people legally, but knowing it's helped you makes me feel just a little better.

I started with a low dose (maybe 25mg?) last summer but stopped after a couple weeks because of dry mouth even tho it showed signs of helping my sciatica. I was determined to work through the side effects after the weather cooled down a bit and I worked up to the higher dose. The screaming (both low and high pitched) started after a few days and even though I tapered off as fast as I dared it has not improved 9 months later. Looking back I realized that even when I'd tried the lower dose in the summer it had caused a little ringing but it was so low I kind of dismissed it as cicadas or something. I never would have associated it with the drug at that point, although I nonetheless sometimes beat myself up for not noticing the warning before it became too late. I hate myself for being so stupid.

 

Firstly, I am so sorry to hear about your sudden onset last year.

For what it's worth, I had a very similar onset, at least on paper. I had been extremely stressed out at work, started suffering some strange gastro-intestinal and eventually cardiac symptoms, and finally, after several weeks of these "improbable medical mysteries," the Tinnitus developed. Since these episodes, I learned that in my case, anxiety (and stress) were the root causes of my maladies. The Tinnitus, however, is permanent - because once the underlying hearing loss gets exacerbated by the neurological disorder, the mind generally can't "unhear" what it has trained itself to generate.

Secondly, there is hope. Cognitive Behavioral Therapy, in my view, is your best bet to find the silence again. It will teach you mindfulness, focus, presence of thought and purpose, and eventually, you will be able to tune out the Tinnitus and just not care about its presence in your life. This may sound magical, but it has sound medical evidence in its working and -- as someone who was once extremely anxious and skeptical, I can tell you that going through my own self-therapy using these techniques was extremely empowering.

Try focusing on sleep, mindfulness, memory, and calm in whatever ways you can. Physical therapy coupled with exercise, believe it or not, was the key to unlocking my habituation. Best of luck!

 

Keys for relief?

 

Yep, keys, there are many different ways to learn how to deal with tinnitus. There is no one size fits all solution to find peace with tinnitus. Many do and many are on there way to finding that peace.

 

Thank you Kaelon. I appreciate the thoughtful reply and I'm happy you are in a good place with your tinnitus. I am aware of CBT and have made some attempts at it on my own but admit I am skeptical. My reaction to the noise appears to be gut-level, or at the level of the limbic system as the last ENT described it. Like a fight or flight reflex. But I may not understand and may have to make a more serious effort. My mental state is honestly so poor after what I have gone through the past few years that all of the stuff you describe just makes me laugh (sorry, I'm being honest) and sounds sort of like the whole "being poor is just a state of mind" thing that one of our newer politicians recently proposed. Again I may (or may not) live to see a different perspective. I know that it has in the past, before I started knocking myself out with drugs, been so loud it could wake me up in a panic if I did manage to fall asleep. It's a long road from there to where you are describing. Attempting to exercise to help my physical and mental state before is what got me in this new mess.

I am also quite skeptical of the sketchy hearing loss as a trigger to habituation theory. Or in your case stress? That's a new one. I've read that the Nortriptyline damaged my hair cells in my ears which caused the tinnitus, although hearing tests have shown no new deficit, and the actual significant deficit I've had in one ear for decades never caused tinnitus. I was also told by the ENT at Johns-Hopkins last week that it had nothing to do with my ears and the damage was in the hearing centers of my brain, which is more believable to me for the reasons I gave above. It probably doesn't matter. One thing the past few years have taught me is that medicine is in a sad state of ignorance on most matters, and that doctors will happily parrot whatever they are taught to say regardless of its logic. As long as it makes the incurable patient go away. And they don't like it if you question their theory. It's not my first rodeo.

I am a process engineer by trade and got tired of wondering if it was getting better or worse based on the most recent few days of data I could remember, so I built a spreadsheet to chart it with a 1-5 rating scale which I tried to make as objective as possible. From what you have said that kind of focus could possibly be self-defeating, but it has told me that on average it has not gotten any worse, or better, for the few months I've been tracking it. And if I do find something that helps, it should tell me it is helping so I will know to continue to pursue it.

 

After reading a bunch of people's stories i gotta say this is just like some of the other forums for "mystery" diseases I've had the misfortune to frequent. People blaming conditions getting worse or better on spurious, random, trivial, and very likely unrelated events. This is no way to live a life. I was reasonably happy with a logical linear life where things made sense until a few years ago when I was 52 and a cascade of things falling apart began that made no sense. My life is completely different now and the contrast is horrible. It makes me so unbelievably sad. Just shit. I have no children and my mother got angry with me recently for saying that I found comfort in not having been responsible for introducing another innocent person into this crappy world. I stand by that.

 

Agree. CBT & Mindfulness have been helpful to many members. There are success stories to back this up. I have used self-help CBT to help the healing process. Dr. Hubbard himself has bad T and has to use CBT to help himself survive the ordeal. The most read success story 'Back to Silence' by IWLM is using a simple method to tame T and it is really a form of self-help Mindfulness.

@Guest48938493 , don't give up and try not be consumed by negative emotions which the T bully needs to fuel its tyranny over us. I fell into the same trap and I was in a mess due to the initial suffering of both ultra high pitch T and severe hyperacusis. In fact with prior condition of PTSD and anxiety+panic disorders, when they first hit, T&H just floored me with relentless mental sufferings plus physical exhaustion, and panic attacks greeted me every time my dentist-drill T woke me if I could sleep at all. I never thought I could survive both T & H but today I live a normal, productive and absolutely enjoyable life. So please don't lose heart and don't despair.

It was quite common to have suicide ideation for new intrusive T sufferers and me and many members, even the T veterans, were not exempted when severe T first hit us. The tired and stressed out mind just dangled with the big 'S' word when it saw no way out. I got to the point of checking out youtube videos of people who had near-death experience from attempted suicide. Their horror stories and experiences in the realm beyond caused me to decide to stay put and fight T at all costs on my feet.

By reading success stories and applying their successful strategies and some of my own, I turned the corner on T after some time. I learn that we need to do the opposite of what the T bully wants us to do. Not easy at first of course. But over time you gain on the bully and gradually things will look brighter. CBT & mindfulness have been great help. Try read some helpful positive success stories to give you hope. Here are my success stories plus those of Dr. Hubbard and IWLM and all of us have used some aspects of CBT & mindfulness. Don't lose heart. Give it time. Good time can be back. Believe it. Take good care. God bless.

My story with both severe T & H:
https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

The most read success story on TT forum with a simple method:
https://www.tinnitustalk.com/threads/back-to-silence.7172/

Dr. Hubbard using CBT & mindfulness to heal himself:
https://www.tinnitustalk.com/threads/how-cbt-helped-me-live-again-dr-hubbards-story.4608/

 

I frankly at this point wish more than ever my life had ended before I had to experience this. I'm glad to hear of everyone's success stories but I feel a lot like Dr Strange in the first act of the movie at this point. Except this isn't a fantasy with magic. I'm sorry but I need a little less uncomfortably spiritual option. This is all just depressing me worse. I'm sorry.

 

This feeling of despair is really common. So, too, is the feeling that "wow, this can't possibly be real," or "sure, it's great that everyone else has found peace, but I'm a special snowflake and my condition has to have a simple, curable explanation." The truth is incredibly difficult to accept, because it runs counter to our core intuition (that all maladies have some sort of medical and curable explanation). But neurological disorders, like Tinnitus, are part of the last frontier of medical science and, sadly, our civilizations know very little about how the brain works, much less how Tinnitus can be controlled.

The therapies and techniques that people describe here aren't "mysterious" or "magical," they are practical and tried-and-true. If you look at my post history, you'll see that when I started out here, I was much as you were -- despondent, in disbelief, and firmly convinced that I could (a) find the root cause, and (b) cure myself of whatever root there is. You will certainly make discoveries about your Tinnitus, and because nortriptyline seems to have been the exacerbating factor, you've already decided that this was the "root cause." The truth is a bit more nuanced -- medicines rarely actually "cause" Tinnitus (and you are right - when they do, they are almost always reversible processes); but they, like any other "crisis," can be the tipping point that sends your brain into the phantom-sound generation machine.

So given that we know very little about Tinnitus, and what we do know tells us that it requires multiple conflating factors (and is almost always related to hearing loss at its core), then your best bet, truthfully, is to use your mind to overcome this. I gave you some recommendations for how to deal in the short-term: sleep is most important, followed by getting your anxieties under control (I recommend physical exercise, personally). Neurological studies on Tinnitus have proven that the pathways are exacerbated by anxieties and stimulation, so being centered and focused will at the very least lower the perceived intensity of your Tinnitus.

Can you tell us more about the events leading up to you receiving Tinnitus? You described a series of other mystery diseases, leading me to believe you were under a lot of stress. This, too, is fairly common and tends to precede the spontaneous Tinnitus attack. Had you ever experienced "fleeting" Tinnitus leading up to this episode? What else was going on with your life in the 12-18 months leading up to this? Maybe we can figure out some common aggravating factors.

 

Just to tie this together -- this right here should give you a sense of what the root cause of your Tinnitus was. For many of us, living highly stressful existences in the weeks and months leading up to our attacks was a common factor. Can you tell us more about what you were going through?

 

I have high pitched T and can be annoying as hell if I let it. At night I play nature sounds from youtube like crickets, frogs chirping and running water and it blends very nicely with my T and very pleasant and relaxing. Also take one .5 valium befor bed prescribed by my orthopedic dr. from arthritis in my neck for it relaxes all the muscles and probably helps me sleep well. In the day I keep busy and the T kind of falls into the background for I do not pay attention to it. It is hard for your brain to focus on more than one thing at a time so lets not focus on the T..Looking around at my friends I would say 4 out of 10 have T and the rest but a few have much more serious health issues. Over time you just get use to it and it isnt such a big deal and less you dwell on it. Just go on with your life doing the things you enjoy and protect your ears from loud noises to not do damage and make your T worse. I hear my T over the TV, car, almost everything but the shower but believe me your life will go back to some kind of normal with time and a positive state of mind..

 

Upon what do you base these statements? How do you know they are not directly related? If someone were to tell you that a balloon popping near them made their tinnitus permanently worse, what would you think?

 

Believe me please when I tell you I appreciate the responses here people, even if I'm not appearing very receptive.

I don't want to drag on, but my previous recent history was requested and trust me it is a very long story. In march '13 I tore my distal bicep tendon skiing in CO. The repair should have been simple, but it failed. But the dr wouldn't admit it, and I wasn't sure myself as it's an obscure injury. Many unlikely events conspired to get me to the point where the failure was confirmed by a specialist, too late to fix properly. I eventually got a kluged kind of repair but the episode had already sent me on a path of severe anger and depression, and loathing of doctors and health care in this country in general. If you'd seen and experienced what I had you would understand. In addition to finally killing my 30 yr weight lifting career which was already on the ropes due to shoulder arthritis, this lead to excessive drinking, eating, borderline obesity (I had spent the entire 52 yrs of my life being a near-fanatical fitness guy) and finally complete metabolic disorder including diabetes. I panicked and (no thanks to any dr) found on my own a cure for the diabetes in an NIH publication which worked. But 45 lbs lighter I was not out of the woods by any stretch. I then developed Raynaud's disease, with no cause or cure, which lead to seeing a cardiologist and many stressful tests which showed nothing. As soon as that was done I found blood in my urine which somehow (no one figured out root cause) lead to incredibly painful prostate problems and other unpleasant urinary tract symptoms which I'd rather not discuss. I still have low-level chronic pain and other lasting effects today. Many more useless Drs involved, one of which scared me into thinking I had cancer (I didn't). Trying to recover fitness I began riding my bike again and got very fit and fast over the summer, only to reinjure my back causing increased sciatica in both legs and again severely impairing the biking. The next spring as I was gamely still trying to ride I developed incredible neck pain which kept me from riding or even sleeping for months. That still lingers as well. The sciatica lead to the neurologist which lead to the Nortriptyline which lead me here. I'm exhausted mentally and physically. I need surgery on my shoulder but can't imagine trusting a dr enough to let it happen and am far too stressed from the tinnitus to imagine going through it anyway.

I'm sorry but that's an abbreviated version. There's no short way to tell it.

On forums for the other conditions I hear the same stuff about stress, etc preceding and being a trigger. But everyone has stress and if you hear enough anecdotal stories anyone would naturally come to the conclusion stress causes virtually everything.

I never had more than a fleeting few seconds of spurious tinnitus prior to this, except as I said last summer after I'd taken the lower dosage Nortriptyline after which I had very subtle high pitche ringing which I barely noticed. The evidence overwhelmingly points to this as the cause.

I feel I could with time have picked my life back up as best I could if it weren't for the tinnitus. That problem is existential.

 

A separate post for those who didn't want to wade through that previous diatribe.

I'm a 30 yr veteran process engineer who's made his living trouble shooting problems and studied evidence-based analytical techniques. I recognize that these don't always work well with biological systems which are too complex to be understood well or to obtain sufficient data on.

Nonetheless here and elsewhere I see a lot of correlations being made which are assumed to be cause and effect, but without sufficient evidence to make that probable. It's a natural human tendency. We evolved it to find patterns in life that help us survive. It can play havoc especially when dealing with something with a lot of natural variation like tinnitus (mine at least). I was coming up with all kinds of causes for its vast day-to-day variation, influenced as much by my perception as well as reality, which is why I began tracking it as objectively as possible. That showed me there was no repeatable correlation with anything I had suspected of influencing it, and that perceived improvements or deterioration were false in the longer term. That is why I question people's claims.

The routine my life has fallen into is to have one, or rarely, two "good" days where the noise is tolerable and sometimes even absent for periods (this correlates to a cumulative daily score of 4 or less on my chart) followed by anywhere from 2 to 7 "bad" days. I thought initially there was a stable frequency to the variation but I didn't realize there was so much range until I saw the actual data, and analysis has shown that to be wrong.

I do know that my mood and everything else depends entirely on how many days elapsed since my last good day. On a good day my depression often evaporates like magic and I am myself again. In this way the tinnitus controls my life. I despise it. I feel I get to actually live only 1 in 5 days.

I live in the country as I mentioned and used to listen to nature sounds as well - real ones. Except now they are no match for the screaming in my head that ruins them.

 

All I hear is people telling me to forget about getting rid of the noise, and that I need to just get used to it. Whether that's through "mindfulness", meditation, yoga, CBT, exercise, spirituality, mind-numbing drugs, or whatever the situation is the same.

I haven't given up on getting fixed yet. I want to be right again in at least this way and I'm not ready to learn to live happily as a defeated slave with my tormenter intact. All evidence suggests this was caused by a doctor and I only want to eviscerate that sorry piece of shit. I've learned from recent experience you are only defeated when you give up.

 

I, for one, really appreciate your backstory. If it's any consolation at all, I myself am a very analytical individual, an evidence-based business executive that solves problems for large enterprise customers, government agencies, and organizations. For me, any problem is solvable, so confronting Tinnitus has been a really tough awakening and I was, like you are, in denial for many months after my onset.

The simple truth is this: no one knows exactly what is going on with Tinnitus. There are a lot of theories, a great deal of conjecture, and some very isolated (mostly anecdotal and non-correllating / mostly-coincidental) medical information, but the bottom line is -- because Tinnitus is not lethal, and it is a symptom of a very complex syndrome (and it is widely experienced on a very wide and complex spectrum), the medical community is generally incapable of addressing it right now given our technology. I have seen a lot of excitement over treatments and research, and have even personally been involved with organizations that champion and pioneer this work, only to discover that they are basically guessing and just hoping for the best. Given what little we know about how the brain actually works, none of this should be surprising.

However, what we do know is that because this is a long-standing syndrome (tinnitus, after all, has been well-documented since antiquity), there are many tried-and-true coping mechanisms for people living very productive and normal lives with it; in fact, for some people (myself, especially), Tinnitus can be a godsend that gifts your mind with superpowers of focus and resilience.

Tinnitus is a biological symptom and a product of a syndrome; your back story is not really that unique, in the broad scheme of etiologies. Many people who had a sudden tinnitus crisis had exhibited a lot of stress-prompting factors, lack of sleep, and heightened limbic pressures in the weeks and months before the onset. A few neurologists that I met with here in Boston have confirmed that this is almost a self-perpetuating perfect storm: anxiety fuels stress which compounds the fight-or-flight response. And, sadly, once Tinnitus begins and persists in this stress-originating way, it is largely incurable.

There are studies and research that, perhaps in our lifetimes, will produce treatments that enable us to re-program our brains. (A 2013/2014 University of South Florida study, in particular, struck me as the most promising in years.) However, barring this, people are relegated to trial-and-error, becoming experts in their own specific tinnitus progression, and discovering small and quick wins that help bring back aspects of the silence into their lives.

 

I appreciate your perspective Kaelon and can't dispute most of its accuracy. I want to know details of these studies and like I said in my first post sifting through them or even accessing them in useful detail is difficult, which is a reason I am here.

In all likelihood I will rail ineffectually against the universe until I'm tired of it or as has happened repeatedly in the past until something worse comes along. It all makes me bitter and hateful. I see it as an inevitable consequence of living and having whatever "bad luck" has brought me to this place. Life is a piece of shit, the universe is trying to kill us, these things happen, everyone dies but some suffer more beforehand, however you say it, it's all true and it makes me sad, angry, and depressed. To view this condition as a benefit reminds me of HIV patients who go on about what a gift that disease has been through their increased appreciation of life, etc.

Like other conditions I'm familiar with tinnitus may not be directly fatal, yet causes death through depression and resulting suicide or simple lack of good health care or personal health maintenance. Whether or not I ultimately kill myself I've already given up again on all physical activity and am rapidly gaining weight again. I believe it will kill me one way or another eventually. It doesn't matter probably because as you said medical science is too far behind in neurology to hope to make sense of this.

And I'm still not buying the stress theory. Everyone has stress. It can be seen as a cause of everything, if you try. This was caused by the Nortriptyline. Which was pushed by a doctor. If I wanted to be dramatic I could say it caused me irreparable brain damage and I would probably not be wrong.

 

I think everyone has to go through their own process of understanding and evaluating their tinnitus. It took me months of research and trial and error to understand that my condition is somatosensory pulsatile tinnitus, and that there are ways I can deal with it and take the edge off given what little we know about it.

However, just a couple of things can I offer that might help you discover your root causes:

1. Anxiety can, and does, lead to neurological and cardiovascular impairments that only manifest after critical masses of hormones flood the systems after many years. Given how much we study heart disease in this country, we know that an anxious, high-stress lifestyle leads to chronic poor health with physical etiologies. Project managers and services professionals are, in many ways, exposing themselves to incredibly lethal doses of stress comparable to what sales professionals encounter (and we have medical studies from the 1950s and onward that show direct correlations between work-induced stress cycles and cardiac symptoms).
   
   
2. Nortriptyline is a tricyclic dibenzocycloheptene. While it can cause tinnitus, the side effect is almost always temporary until its post-metabolic remnant is excreted and the drug is no longer bioavailable. The chances of nortriptyline causing irreversible tinnitus, without you having had pre-existing tinnitus, are the same chances of suffering a catastrophic ototoxic reaction which, statistically, is 1 in 15,000,000 patients that take the drug. There is a community of tinnitus sufferers that regularly argue, emphatically, that benzodiazepines cause tinnitus. However, the only medical evidence that they do is that they amplify the brainwave patterns in people who already suffer from noise-induced tinnitus -- meaning, you were destined to have tinnitus, no matter what, if this were the cause. Discontinuing benzodiazepines, in these cases, usually brings relief in the weeks and months to come.
   
   
3. Neurological studies that examine the way in which brain-wave patterns dissolve into the chaos necessary to generate Tinnitus concluded that "neural hyperactivity are disconnected from any single point of origin," meaning that Tinnitus almost always has a multifactorial neurological defect associated with it. It's not just hearing loss, or just a stressful lifestyle; it's not just some sort of physical or medical impairment, or even just a change in your body or neural chemistry. But it is probably a combination of all of these that leads to a permanent change in how your brain processes signals. Some scientists have found that it's the body's way of re-routing synaptic energy in a way that is similar to the compensating mechanism of the cardiovascular system to "grow" additional arterial pathways to build peripheral blood flow around occlusions. More research findings in Current Biology (May 4, 2015) offers a good summary of what was found here.

I wish you the best of luck in learning about what ultimately caused your Tinnitus. I recommend against thinking that a single contributing factor irrevocably "was the culprit," and instead think of it as a growing number of contributing factors. It's entirely possible that the Nortriptyline was the straw that broke the proverbial camel's back, but barring a serious ototoxic reaction, I think this is highly unlikely.

 

Thanks again Kaelon for your replies. You certainly do seem to have some considerable knowledge of the subject and I appreciate your inputs which have been more thorough and thoughtful than any doctor's.

I doubt there is anything left to learn about root cause and it will remain speculation. It is only important at this point because it leads me to blame the dr and blame plus pain equals anger. Another interpretation of that article and your comments about tinnitus being caused by multiple "abnormalities" of brain function can also lead me to wonder how many effects that poison had on my head.

Also I don't believe every problem can be solved but I didn't come here to give up.

 

Definitely do not give up, ever.

This is a process for everyone. You will encounter victories, approach understanding, and re-discover silence in new and subtle ways. You mentioned you are suicidal, highly stressed, and deeply depressed. Addressing those issues, as unimportant as they sound (or as peripheral or inconsequential as they may be right now), will actually at the very least help you begin to tune out the sound because, if nothing else, your limbic system's heightened response is amplifying the sound by strengthening the delta band oscillations that constitute Tinnitus. This is one of the few known facts about Tinnitus -- stresses amplify the brain waves responsible for the sound.

Best of luck in your search for silence!

 

You must listen to them. I had a spike last night, a really bad one BUT my son was running a horrible fever. He's only one years old and depends on me. I was so angry, my tinnitus was making it almost impossible to focus. I needed to focus. You said you don't have kids, do you have pets? When I first developed panic disorder my ex got a puppy, she became my world. She was sickly and needed a ton of my attention. Last night I forced myself to go to the store and get a new thermometer. Don't get me wrong, I'm still not feeling okay today but I'm trying. I still try to stick to my routines. For anxiety and your T you need to continue on and find a distraction. You need to continue on. I'm sure your loved ones would be devastated without you.

 

I'm so sorry for your suffering. It is just wrong. Distractions are great. When my husband needs me I am there for him always. I am best at work where I can usually stay busy and occupied, although working alone on difficult problems is hard. Where I suffer most is at home where it's quiet and "peaceful", exactly the times I used to cherish. So shitty. It's also bad when I'm trying to do something difficult and someone is annoying me. Those are the times that are stressing my marriage.

Honestly although I feel suicidal a lot and actually spent a lot of time trying to plan it out over the winter, I doubt I would ever go through with it mostly because of the pain it would cause others. It's odd tho that the weight gain, lack of exercise, excessive eating and drinking, etc all caused by this condition that will as surely kill me as a bullet to my head will be somehow less painful. Oh well. There is a term I can't remember for someone not actively suicidal but who is not interested in living either.

 

Sorry to cause you uneasy feeling with the success stories. There is no intent to make you feel bad at all. The point of the success stories is that most of the authors went through similar journey of fear, anxiety, stress, anger, depression sleeplessness, yes even suicide ideation when they got hit with highly intrusive tinnitus initially and no one or nothing seems to help. So for me, it is important to know what have helped various people to turn around. Some found the root cause of T such as TMJ, ETD, TTTS etc, and took care of T when those root causes were treated. It will be nice that all T can be traced to a single cause but it is not the case for many people. So people try out different approaches, some used sounds, supplements, diet changes, alternative treatments such as stem cell, acupuncture, TRT, CBT, mindfulness, and some even tried those highly controversial drugs like Trobalt, Keppra, etc. And there are those drugs being worked on at various stages by the pharma folks, such as OTO-311, RL-81, SF0034 etc. They are all either being tested or researched. So the medical/pharmaceutical world is catching up on tinnitus with these new drugs on the horizon. At least it is comforting that efforts are there to develop something for us. There is no guarantee that any new drugs will work for all T sufferers in the near future but the hope is there someday they will find something more effective for T treatment than what is available now. Check out the Treatment section on TT for more detail.

With regards to the value of CBT & Mindfulness, at first I thought these are just some 'spiritual' approach that has nothing to do with the actual physiology of the body. After the little research and reading up I have done, I realize there is much more inside that is happening in our body when we can calm our emotions and nerves with these approaches.

T is a physiological ailment caused by hyperactive neurons firing the wrong signals. To stop this sound we probably need meds to intervene. But there is the other side of T suffering which is mental, and this mental side of the suffering aggravates the condition or the perception of T. Anxiety and stress are toxic to T. Many members have reported that when they go on vacation, their T seems to be less intrusive. When they get back to work, T becomes bad again.

So this mental side of the suffering can't be ignored and can be dealt with by various channels, including counselling, particularly CBT based counselling whether by a trained counsellor or by self-help mode. During such counselling, the task is to deprogram the brain from believing in all the distorted thoughts, so called cognitive distortions in CBT. This is done by challenging, countering and replacing the distorted thoughts with more realistic or positive ones. To many sufferers, T is slowly becoming a phobia, an irrational fear, such that the minute they hear that sound, the whole body tenses up and strong negative emotions take over. That is why even someone with mild or low tone T can still react like those with ultra-high pitched dog whistle T.

When T becomes a phobia, the body's reaction to it becomes irrational. In such state, great stress and anxiety takes over and the perception of T becomes worse. It feeds the vicious cycle of “T-> anxiety/stress -> worse T -> worse anxiety/stress”. The role of CBT counselling via a counselor or on self-help mode can help to defuse such vicious cycle or break it for good. Once the task is achieved, the nerves will be more stabilized and the limbic nervous system which has caused the 'fight or flight' reaction is gradually replaced by the normal parasympathetic system. The Amygdala which has been processing the T signal as a deadly threat can be slowly replaced by other areas of the brain, the pre-frontal cortex which has the function to normalize or defuse the fearful reaction. This new neural pathway can then allow the brain to perceive the T signal in more manageable capacity.

 

Thanks Billie. That's the most informative response I've gotten, although again not sure how helpful, but gotta stay realistic I guess. I still just keep hearing "salvage operation" in all this talk. No one talks about any realistic probability of actual improvement in the condition. And no mine does not get better on vacation. It's all I remember about my trip to Cali last fall. If we aren't talking cell death as cause, but a change in the activity or sensitivity as the two more competent drs I saw proposed, it would seem that change could be reversed. Maybe not.

I'm having a bad morning after a bad night without enough sleep. It's a beautiful cool day and I'm on the porch listening to that hissy hateful neuromonics with earbuds, instead of the birds, to drown out the tinnitus. If nothing else I don't understand how I can live with only drug-induced sleep. I hate this. I miss naps. I apparently didn't take enough Benadryl last night after being up till two prepping for our annual summer party and was wide awake at six with my ears screaming at me. No hope of relaxing back to sleep. I will be cranky and feel like shit for the party which will likely be poorly attended anyway because I've let friendships slide or been actively toxic to them the past year.

Anyway, yeah 3 out of 3 ENTs have diagnosed root cause as the nortriptyline. Regardless of the stats K cites the correlation is far too strong. And besides I've proven again and again that long odds are no barrier for me, assuming it's a negative outcome I'm facing. I had no tinnitus before I swallowed that poison. After a low dose I noticed occasional very low level high pitched tinnitus, but didn't associate it at the time with the drug. Two days after ramping up to the higher dose it was suddenly there in full force and hasn't left or diminished at all since. Bam. Two of the drs said I should probably get an MRI anyway but were so slack in their endorsement I am not encouraged to do so really.

The Current Biology article is just distressing without being in any way helpful or really informative. It tells me my head is fucked up ten ways from Sunday and there is no hope of fixing it. And that the poison caused damage all through it. Taken at face value anyway.

I am so angry. And so sad. Those two emotions have ruled my life for four years. I would like to be over the anger, if nothing else, but it is four years and many drs in the making and every time I've made progress against it something else happens. I chart my life by what new ailment I was fighting at the time. Oh yeah last year at the party my neck hurt so bad I could barely sit upright. The year before my dick hurt almost too much to urinate. The year before I could not eat or drink because I was trying to recover from diabetes. The year before I was recovering from that crappy attempt to save my fucked up arm. Etc. It goes on and there is really no indication it will stop. Six moths after the tinnitus I detached the vitreous humor in my left eye and suffered for a month with millions of dots in my vision. This has settled into a simple grease smear. All these things leave marks and don't go away completely; it's all cumulative physically and mentally and sometimes in a life it's just clearly time for it to be over. I would love to be over the anger but I would settle for the more realistic option of letting it kill me. I wish it wouldn't take so long. I'm so sleepy.

 

Ok this forum is worse than I had anticipated. Most people here are desperate to deal with the tinnitus they have, or are living in constant fear and paranoia that the person who popped their chewing gum next to them increased their tinnitus, or have experienced an actual significant increase in their noise level after already suffering for years, or have given up hope of an actual cure and are trying to be happy living with their tormentor, admittedly with some apparent success. Regardless if this is what I have to "look forward to" as a newish member of this ship of the damned, I'm sorry I asked. It is very like one other incurable (but not technically deadly other than through suicide) disease forum I've had the misfortune to visit but with a higher level of urgency and desperation to just survive as opposed to simple depression. I don't know what else to say. I am horrified. And so scared I really want this to end. Who knew life could be so randomly cruel. When i go into the bargaining phase of the grief cycle I want to give up my leg or arm to have my head be right again. That would be an easy choice if I could have it. I would at least still be able to take a nap when I was exhausted.

The treatments section here is just insane cacophony.

When this first began before I discovered the unconscious joys of Benadryl and Atavan I would lie in bed and I could imagine my mind leaking away as I could not even think, it was so loud, because that is when it fills every single corner of my head and leaves no room for me to exist. I was so scared those times. I would imagine I was in room 101 in the novel 1984 and they had found the worst thing in the world to me. It is an existential invasion of privacy because this monster lives in my mind with me. And I have absolutely no power to make him go away. It is like Arthur in The Once and Future King when he is a boy turned into an ant and he finds the principle of communal ownership extends even to his mind as the queen can communicate telepathically with the colony and literally fills everyone's head with constant propaganda. That is what it is like for me. It's so crazy that this happened to me after all the other crap I've been through I absolutely and simply can not wrap my head around it and have it make sense in any way shape or form.

Over these past years I have occasionally imagined that somehow I was cursed and that there was a malevolent intelligence in the universe intent specifically on destroying me personally, based on the unlikelyhood of all the misfortunes that I had experienced in a short time frame seemingly randomly, but often with cruelly calculated timing and effect. Especially late at night I sometimes found I believed this more than any other scenario. What is particularly curious about this belief is that I am an atheist who has never found a compelling reason to believe in a supernatural being of any sort. I somewhat savored the irony that it took a sort of anti-miracle to make me consider such a power could exist. Regardless now with the tinnitus I don't really think about that aspect any more as I consider the job completed and how it was accomplished doesn't matter.

Anyway yeah, I gotta go. Thanks for everyone's time and effort. I don't have the slightest idea what to do right now.

 

@Guest48938493 - it's not surprising that you find scary things in this forum: it's a biased subsample of the T population which, by definition, is struggling enough to come here to get some help. You are one of them, and so am I... if our T was easier to handle and the visits to ENTs and other docs were helpful, we probably wouldn't be here, like the majority of T sufferers.

Because of this, I'm not surprised about the doom and gloom you find here, but the other part that makes this bias even more deceitful is that the people that come in and get better move on, often without as much as a "success story" goodbye. And who could blame them: coming in here could get them back into the "pit of darkness".

It is often recommended to take a break from the forum and other internet resources for that reason.

I don't have a miracle cure for you, but I often come across data that seems to indicate that drug-caused T has a reasonable chance of getting better with time (it can take months/years though), so you may want to give yourself some time and be kind to yourself, because it's true that it's a very difficult thing to deal with.

Have you ruled out any other causes?

Take care.