Life Screwed by Nortriptyline. Not Doing Well.

@Guest48938493,

Agree with Greg. This is a support forum. Most come here are in dire shape needing support and those who have been helped left. While it is true many left without writing any success stories. there are enough of those willing to give their time to leave some words to help others. There are others like me who find it a lofty life's mission to come back to help others in despair even though there are so much more fun things to do out there when T is no longer an issue high or low. So try to find some positivity on this forum which has helped thousands of people. Your focus here, if you really want some positives of life after T, should be with the Success Stories. There you have people cured, people with T fading, or people who don't give a dime anymore with T high or low after habituation. Some have tried everything but eventually they discover the power to overcome T is doing nothing for T and beginning to live life again. Finding joy amid the pain if any, and living life abundantly despite T, these are what people are doing to fight back at the T bully. In the absence of a cure, this is the best a person can do. I leave this thread with two success stories, one from a guy who has found 'doing nothing for T' brings his life back, and the other from my first T mentor Paul Tobey, a former feature speaker for ATA and a concert pianist, who after years of suffering and struggling with T, has found his strategy against T in an unexpected way:

https://www.tinnitustalk.com/threads/doing-nothing-worked-for-me.4778/

http://www.ata.org/sites/default/files/my_choice_concert_pianist_personal_story_tobey_june_06.pdf

 

@Guest48938493 -

I agree with @GregCA and @billie48 entirely. But all of that said, it's very simple: Tinnitus has no cure. And it is almost always permanent. And guess what? That's fine, because pretty much almost everyone who has it habituates. You won't find most of the people who have overcome Tinnitus hanging out on this forum (@billie48's point about the subset of the suffering population is spot on), but as someone who has overcome it, I can tell you - I am the rule, not the exception.

1 out of 50 people in the United States has intrusive tinnitus. Think about that for a moment. That is 2% of the population that hears Tinnitus pretty much every moment of every day. And yet, almost all of them lead totally normal and completely productive lives. Tinnitus, while maddening, does not define people and usually within 12-18 months, most people overcome it naturally.

But if you're looking for a treatment, or a cure, then you're still in denial. There is no more a cure for Tinnitus as there is a cure for Cancer; both are very complex syndromes that portend to underlying and in most cases undiagnosable medical root causes. But unlike Cancer, Tinnitus itself - and its underlying pathologies - are not fatal.

I hope you find some silence soon.

 

What you all say makes sense and I understand the inherent negative bias of the forum overall. I spent a little time on success stories and that helped some little bit. But after 8 months of this I'm just simply exhausted. I don't sleep I pass out from drugs, usually while in a state of distress. When awake I'm stressed constantly, unless I'm drunk. I cannot stop eating. I despise my life like it's my mortal enemy. I don't care about my marriage, my friends, or my future. I don't know if it's good or bad that I get the occasional day off where I sometimes get long stretches of pure silence. It makes me want to cry because I know the screaming will be back soon. But it gives me hope that it could stay away. Yet it may be false hope because I can't find the trigger. But on those days I often find myself thinking about how I could lose weight, get my shoulder fixed, do this or that. It all goes when the screaming comes back.

K - thank you but I've had enough tough love of the it's incurable learn to love it variety. I will fucking Kill myself if you keep telling me that. If my 'denial' is all that's keeping me upright then let me keep it.

Two doctors have half-heartedly recommended and MRI but I haven't done it since it seems so unlikely to find anything, or some other reason I can't suss out. I think I'm going to try to get a very good head/neck massage to see if that helps. I think that when I get an idea of something that might help I'm reluctant to actually try it because 1) I know it is extremely unlikely it will actually help, and 2) as long as I don't prove it won't help by trying it I can hold onto a shred of hope.

 

@Guest48938493 -

You're still in the diagnosis phase... you should go down the Diagnostic Flowchart.

What have you tried so far? I'm asking in terms of diagnostic tests but also in terms of treatments.

Have you considered clinical trials?

 

Greg
I've seen that flowchart. At first it seemed to offer hope, when I thought I fell under the paroxysmal because it sometimes went away, but then I understood I was wrong.

Regardless here's the thing. Doctors don't consider me in the diagnostic phase really because the cause seems quite obviously Nortriptyline. I've considered withholding the info on the correlation between taking that poison and the onset to see what they would recommend then, but it is really wishful thinking to imagine another cause. That's another reason the desire for an MRI is very lukewarm, for both me and the Drs. It's really quite obvious what did this.

But I cannot give up hope because it is all that is keeping me going. Since it subsides significantly every so often there must be some kind of co-factor involved in driving it. If I could find out what caused the variation and then keep whatever it is where it needs to be to minimize the symptoms I could make it.

When I first went to my primary care about this they gave me a dosepak of prednisone and antihistamine, which turns out to be a legit treatment to their credit. It actually went away for a couple days at one point early in that treatment and I thought all was well, but obviously it came back. The prednisone ramped up my anxiety levels enormously and that was by far the worst week I've experienced - the closest I've ever been to insanity. ENTs followed but they've been useless once I told them I'd been taking Nortriptyline. The second one recommended the Neuromonics, but said it rarely worked and was expensive. I found an app for my phone from Neuromonics which actually includes a hearing test to calibrate, all for $100. I've used it for at least 2 hrs almost every day for 10 weeks without improvement. It does mask it tho and provides some relief while in use. I've been trying gabapentin/neurontin for the past few weeks with no effect as well as vitamin b and flavonoids. I have a TENS unit at home I've used for my back and have considered trying vagus nerve stimulation with it but haven't worked out a protocol. The last ENT at Johns Hopkins spent an hour and a half with me and recommended 5-6 drugs to try including the gabapentin but I've not found any reference to any of them being effective. Two of them are antidepressants which will be the last, as that's what got me in this situation. I will probably work through them eventually. As I've said I'm charting the variation daily and have high confidence if any treatment helps at all I will be able to notice it. Can't think of anything else I've tried, other than a sort of lame therapist who gave me some worksheets for CBT to try but which I ended up balling up in a fit of rage the next time it got bad. When it's not too loud clearing my ears can make it go away briefly, and chewing or biting down, particularly on my left side makes it spike. I can often hear my chewing. I have also once or twice experienced pulsatile tinnitus i.e. my heartbeat, along with the normal type, but it didn't persist.

I've not considered clinical trials as no one has offered any.

 

Oh yeah and a hearing test was done of course, which showed no recent changes. There were also the usual pokes and prods and some stuff with a tuning fork which apparently were all negative as well.

 

You should peruse pubmed to find stats on treatments, and clinicaltrials.gov to see if there is anything that you would be willing to try.
UCSF needed patients for their deep brain study: maybe they still do (if you're up for that type of trial - it's quite invasive).

 

Hello, velodog2. I'm sorry that this happened to you as I am for everyone. I mean who better knows us than us, right? I understand you are experiencing bad anxiety and depression as a result, two of the things I suffer from, tinnitus aside. Aside from medication Ive learned some techniques from a great doctor who saved my life 4 years ago. I figure while you try to figure this thing out, you should give it a try and see if this gives you some, if not, little relief.

https://www.tinnitustalk.com/thread...om-anxiety-tinnitus-associated-anxiety.22257/

 

I completely understand your terrible frustration, @Guest48938493. On the one hand, you started out venting your frustrations by accusing everyone on this forum of being delusional, about all of the "cures" being non-cures. But then, when confronted with the truth that this is permanent and there is no cure, you want to remain in denial? Tinnitus fucks with our minds, and the denial is the worst part -- because it inevitably delays our recovery.

Everyone starts this out in denial. And I can appreciate that given your stated state of mind, your denial is something you are embracing. But, like everyone else, you will eventually begin to heal very naturally as your brain centralizes the stimulus and begins to isolate it. Neuroplasticity is an absolutely amazing phenomenon. Since you have had this condition since September 2016, I suspect your brain began centralizing somewhere between Jan and Mar of this year.

You will habituate and recover. I believe in you.

 

@Guest48938493 can I suggest you speak to a psychologist? As others have said, you're currently going through the grieving process of tinnitus and its very very hard; the hardest thing I ever personally ever dealt with.

Acceptance and time is the key to habituation, and habituation is the key to recovery for some people. Stop searching for cures and start living the rich and fulfilling life you deserve.

 

Yeah thanks everyone. I had an anomalous reduction in symptoms this weekend that hadn't occurred since I began tracking at the beginning of February. I've been trying too many things however and it's not clear what the cause was. I had complete silence for long periods. Went to a very very loud club Saturday night (cuz drunk again and fuckit why not) and I was able to fall asleep later without drugs and with just the typical fuzz sound normal after loud noise exposure, then woke up to complete silence as well. It was absolute heaven people. I lay there for hours listening to it.

It's returned somewhat but I'll keep tracking. With variations like that I cannot give up. I allowed myself to have some hope at one point, and my personality returned largely to normal as it tends to do when the level is low. Last night and this morning it was at a low-typical level again however and that was quite depressing. I'm really quite willing to let it kill me if I can't control it. I've been through too much and lost too much of myself. With this on top it's probably time to go. One of my grandfathers died at 56 of a sudden heart attack one night and That sounds good. I've gone through the grieving process over and over and over and I'm not willing to do it again. I'm getting fatter all the time and I know how this ends if there is no significant change in something.

 

I'm incredibly depressed today actually. I tried hard not to get excited by the remission I had this weekend but couldn't help it when it was still good yesterday morning and my chart showed an indisputable change. But it's back in full today. I so fucking despise this shit, and my life with it, and I'm so tired of feeling like this it is beyond description. I am struggling minute to minute not to hit something, or kick something, or throw something this afternoon. I need an Atavan. Luckily I have some.

 

What do you track in your chart?

 

I had very painful sciatica in legs. At that time my ears began to ring a little, but it went away. Sciatica within itself can cause ringing without the use of meds. I have vein disease in left leg and foot. I also ruptured my C5 in my lower back. Often tinnitus is a build up of things which may interfere with blood flow and circulation. Then sometimes a drug is used or exposure to noise and this is the straw that breaks the camel's back.

Don't kick yourself. Try some approved physical therapy. Drink plenty of fluids. Detox your body.

 

Here's a lousy pic. I have a 1-5 scale for loudness and persistence and I score it twice per day with the two values stacked to give a total daily score. The goal line is at 4 because a total daily score there or below i consider tolerable. I track also a 7 day rolling average (green line) and 21 day rolling average (purple line) to detect trends. This gives me an objective measure to determine if it's changing over time. I've had this plague since September but only started tracking in February. A real control chart might be better but this works ok.

The trend lines have stayed within a consistent range the whole time until the past few days when the 7 day average dropped below 5 for the first time. Today will reverse that downward trend. I also track changes in medications, behaviors, etc on the data input sheet. I may have been that low or lower on the scale before I began tracking so this may not be unprecedented, but I cannot give up all hope when I can have periods of remission like that. There must be something driving it.

My 'detox' consists of alcohol and Atavan. I tried adding a cannabis brownie to the mix weekend before last but that worked quite poorly. I don't know what dosage it was but I spent about 12 hours mostly passed out, waking occasionally when it seemed like I'd forgotten to breathe.

 

I have a feeling it will get better soon! Don't give up hope!!

 

@Guest48938493 ,
Sorry to hear your story.
My tinnitus was helped by Nortriptyline but I know we are all different and react different to medication.
Tinnitus can be mental torture at times and although some people habituate it can still cause distressing times and emotional turmoil.
My tinnitus is due to Menieres.
Sorry I've not been around these last few days due to a tough time I have had to face.
Please keep posting and we can try our very best to support you when you need us around the clock.
Love glynis

 

Thank you. To understand my piss-poor attitude you'd need to understand how shabbily I've been treated by doctors the past four years, how little progress I've made against my torments, and how little of that (read zero) was due to their help. This has become a personal vendetta that I have been losing very badly. Not only has my identity been hugely eroded but also my self-esteem. To lose another battle, this time with this nasty miserable screeching taunting horror is to lose whatever I have left of that. And that ain't much but it's all I've got. As far as I'm concerned whether I actually die as a result or simply lose is immaterial. The fact that this screaming was caused by a doctor is unbearable.

 

Why are you directing your anger at your doctor? Was he negligent or was your onset due to "back luck at the side-effect lottery"?

 

Could be considered both, and it doesn't matter. I'm not claiming rationality. I want them all to pay. I've had more bad luck than can be considered luck. They have been completely useless in every instance. At best. And sometimes, yes negligent, absolutely, and worse. One thing I can say with certainty is that I would be vastly better off if I'd not seen any doctors in the past four years at all.

 

Don't give up your quest to slay this dragon. Resigning oneself is closing the door to further inquiry. Go forth with the conviction that the answer is out there ... waiting to be found.

 

And besides, yes, who has ever heard of permanent side effects? From a legal drug? One that can cause brain damage? If you dig deep into the list of side effects of that poison you will see tinnitus. But you will see no mention of permanent tinnitus that plagues you the rest of your life. It's academic now but I contend if I had been told it could happen, I would not have tried it. I'd heard of tinnitus and the thought of it made me shudder because I valued peace and quiet above most things. Remember, I didn't like drugs for the sciatica. I wanted it fixed, not dulled. That doctor encouraged me to take that shit. Now I have both the sciatica as well as the bonus tinnitus. Forever apparently according to most folks here. The doctor did not even know this could happen. That could be considered negligence I believe. By him. Or the FDA. I can't sue him. I've talked to lawyers. I can write scathing reviews in every single online service that lets me however. It's not much.

Do you think I shouldn't be angry? I was trying to fix problems I already had, to move past the problems and horrible luck that had dogged me for the previous three years. And yeah. That's what I got. Gee bad luck. Shit happens. Whatever. There is no way I can look at this that I can make it make sense, or that I can make it all right. As I sit in in my quiet bedroom on a warm night in the dark and listen to my ears scream at me and wait for the Benadryl to kick in so I can pass out.

 

This really needs to end but I have no idea how to make it do it. It keeps spiraling down in agonizingly slow circles but it won't reach the bottom. I'm just making everyone more miserable by dragging it out.

 

Actually, at this moment in whatever mental state I'm in since my head has been screaming steadily for most of the week, I've listened to masking music for six straight hours today, and my relationship with my spouse is pretty much at a new low, I'm realizing that my range of choices is realistically pretty small. I can't kill my self outright for the damage it will do to people I still kind of care about. Letting myself die through neglect is likely to take years. I think drugging myself stupid with antidepressants, and anti anxiety meds is likely the best way to go. Lol, shit if they still did lobotomies I might well opt for that. Many of you have helped kill any hope I had for even looking for a cure, so fuck you for that favor. Willingly accepting this fucking torment will destroy the last shred of self I still maintain. I just want to live the rest of my life as a damned zombie. If I have to live with this shit then do not want to actually experience it.

I wish I had never gotten married at this point. I wish I had never brought someone into this forsaken mess of a life I've made. I've told him that. He has said he will stick with me forever which is quite sweet, but we will see. I see no hope of this situation ever getting better, and our relationship is most likely mortally wounded at this point, so it will never be good even if it endures. If I could just be alone, I could blow my head off and not care, or destroy my life with opioids and overdose on fentanyl, or just cut to the chase and OD on fentanyl from the start. I think that is the most socially acceptable method of killing oneself these days. And absurdly no one calls it suicide. Tonight I feel like I could actually do that.

 

Two months have passed I see and nothing has improved, although I haven't blown my head off yet. I did get the shotgun out and try it for fit this morning. It would be quite simple although incredibly messy and traumatic for my husband. It needs dusting off tho. There are cobwebs all over it and my father wouldn't be happy if he were alive to care.

I had a regular appt with my primary care physician so that he would continue to prescribe the meds I need to keep going. He said to trust him and that he was on my side. I didn't say anything but laughed inside. He has failed me at every turn. He didn't raise any flags but ordered some tests supposedly to check kidney and liver function. When the tech was drawing blood she asked if I was diabetic to which I answered I hadn't been. She said apparently they were trying to find out as an A1c test was included and the others were typical diabetes tests. I had been diabetic briefly before a few years ago after my first major depression which resulted in weight gain up to 195 lbs, but I beat it using a diet described in an NIH study where I had gone down to 145 lbs and my levels had been purely normal since. But now since the tinnitus took over my life I'm back up to 175 and he clearly saw something that made him suspicious, but the trust he spoke of apparently did not extend to mentioning that to me and instead he ordered the tests surreptitiously. Asshole.

I still feel that my life really needs to end now. I struggled and fought to make it and me the best it possibly could be, and every day I live like this is an insult to that effort. I can't have the "second" part of my life be a sad shadow of what it had been. Who I have been is effectively dead already, there is so little left. I live in the past more and more. I spend a lot of time rereading old books, and lately have begun using Google world and street view a lot to relive old adventures in my mind. I shut my husband out emotionally more and more each day. It's best for both of us I believe as I will be better able to do what is best for me and he won't be as attached when I'm gone. It needs to be this way.

I contemplate death continually. Diabetes is not usually an ideal way to kill oneself. Although it works in the end, it is slow, ignominious, and painful. I need something else. It is really hard to find anything "appealing". I don't want to be here, but the actual dying part is problematic. I need to start looking for some kind of support forum to help figure that out. If anyone knows of any legit ones it would be appreciated.

 

Can you remind me what T therapies you've tried so far and what level of success they've had with you?

 

I have given the Neuromonics program a good shot with no effect. I've tried gabapentin once for a few weeks and it may have had some effect before I ran out of what was a remainder of s prescription I'd had for sciatica (that hadn't worked). I've been on it again for a few weeks now and was encouraged over the weekend that it could be helping, but it's back strong again yesterday and today.

The maddening variation is one of its worst qualities. It taunts me with decent days that I can tolerate that give me hope but it invariably returns with a vengeance destroying the hope. The bad days far outnumber the ok days. I have no idea at all why and can't go on like that. I'm one month away from my one year anniversary. It still makes me literally insane. I have to fight so hard not to go ur my fists, or my head, through walls, and I quite often cry myself to sleep after taking enough Benadryl and lorazepam to knock out a horse.

None of the three doctors I've seen have ever given any hope at all that anything will help. The last one at Johns-Hopkins gave me a list of five drugs to try in order of increasing psychoactivity, with the first being gabapentin and the last two being straight antidepressants to help me cope. He said none had any clinical evidence of effectiveness. He spent an hour and a half with me answering questions. I went until his answers began to contradict themselves and I knew he didn't actually know shit. Then I just wanted him to shut up. None of the answers were in any way useful regardless.

So to be quite frank, as a result of that experience plus many of the members here basically telling me to shut up and get used to it because no one gets over it, I've more or less given up.

 

Have you tried those?

Would you trust your life to random internet people? Probably not right? There's plenty of people who "got over it" (see the Success Stories section). It doesn't mean that you will, it just means that the statement above is not correct.

Also the bulk of people who "got over it" aren't even on this forum. They haven't touched this forum at all: they're out there living their lives.

 

I'm working on the gabapentin. It takes time to be sure, with so much natural variability in the severity, that something is not having an effect. It is very difficult to put much hope in things that the doctors don't even think will work - things with no proven clinical effect. I could spend the rest of my life chasing vitamin b, etc, ad nauseum. I am still not likely to ever put another antidepressant into my system. Someone, maybe you, said sometimes drug induced tinnitus slowly goes away over time. I've been hoping against hope for that and tracking it extremely carefully so I'll know if it begins even a slight trend downward. So far after a year I'm seeing nothing.

 

I agree. On the other hand, this is kind of an "off label" use, so it makes sense that they wouldn't think it'll work, and in particular they may have some liability concerns if they were to somehow imply that it could cure you. Doctors are often very noncommittal when it comes to treatments.
And they are probably right: given the stats, it makes sense that there is only a small chance that it'll work, but from the patient's perspective, trying "a small chance" a few times can increase the chances to get some amount of relief significantly.

Yeah by then you should have seen an improvement.