Life Screwed by Nortriptyline. Not Doing Well.

What really want most right now are fucking answers. I want to know how it is possible that I've been hit by a constant barrage of regularly spaced, yet unlikely maladies over the past 4.5 years. All of which can't be fixed or cured. Most of which have no known cause. And all of which seem consciously designed to destroy who I am and what I value. Things that hit me again just as I'm beginning to mentally adjust to the last blow. If someone had cursed me they could not have hoped for a better outcome. Carefully designed to be non lethal, each one made me want to live less. I sometimes feel that I am like a victim of a Native American torture method where the purpose is to first break the subject, to make him scream out in pain, before finally releasing him from suffering through death. Well I'm broken. I would appreciate a quick death thank you. A phrase that often goes through my head is that those whom the gods wish to kill they first make insane. Either way.

I do not believe in an afterlife but that doesn't mean i can't fervently fantasize about one where I finally get answers. I sometimes even think that the incredible improbability of everything that has happened to me could be used to argue for the existence of God, but fml unfortunately if true he is sure a cruel fucker. I'd rather be without.

I also consider that even if I was cured of everything tomorrow it would take years to recover mentally. I hate who I've become. I don't even recognize this person. I'm so bitter and full of anger and hate that everything has been poisoned by it. I'm ready.

 

So angry tonight. Taken Benadryl, lorazepam, and copious amounts of alcohol and I'm still raging. I'm starting to become angry for not having the balls a depressed 16 year old has to end this. People do it all the time. Hunter Thompson did it at about this age. They don't worry about a mess. Shit. It's the only way I can take back a tiny bit of dignity, a tiny bit of control. To have decided it wasn't worth it and done something about it. Instead I'm acting just like most sad little people who cling to the last shred of a pathetic life because they don't have the courage to do something about. Maybe it's because I know, like they may, that life is all we have and no matter how pathetic it's better than literally nothing. To take back control is to lose everything. It's not as if I could say then, see I did it, I showed who was in control, because paradoxically I'd be dead, and only others would be able to say that and when I have I ever given a shit what others thought, and besides at that point I wouldn't care, re: dead. Life is such a shit filled sack. The only battle I won in the past 4.5 years was against diabetes and now I'm going to lose that war because of this screaming horror inside my head that dissolves any desire to do anything worthwhile and positive and any self control to keep me from doing anything that is self destructive. They torture people using continuous loud noise, and it's considered illegal because it is cruel. What laws are protecting me? The FDA? It was their drug that did this to me.

 

Velodog, I’m a drug related tinnitus victim too, and I understand very well your anger and despair. I could have written myself most of your words.

My life was also ruined 13 years ago by antibiotics, I’m not going to give details, that would be too long and boring, but my life was put upside down with violence, just like yours is now. Since that fatidic event, I have gone downhill all the time concerning my health. I don’t trust doctors anymore because, like you, I haven’t been very well treated, to say the less. It’s amazing how ignorant on pharmacology are some of them. I have the feeling that they have cheated me because I was not informed properly about side effects of certain medications, if I had, I wouldn’t be writing this now. Well, it took me three years to get better, my tinnitus got milder and milder and, finally, it wasn’t intrusive at all and didn’t bother me for my daily life. I assumed that I wouldn’t have silence for the rest of my life, that was a high price to pay, but, all right, I could take my life back again, which was more than I ever thought… until last April. They did it again! I went into a major hospital to get a gastroscopy done and three days after that my ears were ringing again full speed. I blame the anaesthetic (vein inejcted), but doctors don’t know why it happened, as usual in cases like this. It all started again; no sleeping, no naps, panic attacks, suicidal thoughts, crying, anger, despair, hopeless, mind and body exhaustion…. This time, I had terrible daily spikes that lasted for hours and hours, day and night. Fortunately things seem to be better now, although you never know with tinnitus. My condition is still severe and I need some chemical help to sleep at night, but much less than before. You will get better too, no one can tell you when will that happen, but it will, why to think it wont?. Time, generally, is our best ally, give time to time, it's hard but effective because our body needs it for a natural healing process.

Hey, you are very good in writing and I think that you should put into literary form what you are going through and make a book of it. That would be very good to help people undertanding (even doctors) all the suffering hidden behind our condition. I really mean it, you express your feelings in an engaging and clear way, which is not easy for most of people, and your vocabulary is rich and bright. I’m sorry about all the pain you are experimenting, but all of us are in the same boat and, in a greater or leaser degree, your drama is our own drama too, so we know what you are talking about, but the rest of the world don't. Think about it, it can also be a good therapy for you.

Let me quote Cavafis:

“And if you can’t shape your life the way you want, at least try as much as you can not to degrade it...”

It's good to read this words when life shows its worst face. I keep them in mind. I’m 70 and this time is harder for me to cope with this with courage, but I try to, I have to, is what my loved ones expect from me, specially my spouse, who is doing his best to help me in every way (surely like yours does as well) and I'm grateful to him for it immensely.

As you have surely noticed, English is not my mother tongue, which reduces my ability to express. I’m sorry.

Remember, you are not alone, we all are victims of the same terrible condition and we understand your despair, but don't give up.

I wish you well and stay around.

 

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

I think thats because most people on forums have are there because they're actively have a problem. When they don't they're busy doing other things. If my tinnitus ever goes away, or reduces significantly, I'll be sure to post a success story.

 

Thank you Anima for your story. I cling to any hope I can find and carefully ration it to last. This is one reason I've not tried some of the things that have been suggested. Since I really have very little faith they will work, they are more valuable to me as untested potential that give me even the tiniest hope to hold on to. Once they have proven ineffective they are useless.

Your account of the drug-induced tinnitus improving over three years is possibly the best thing I've heard in the year I've suffered with this. My tracking has shown a very agonizingly small and somewhat inconsistent improvement over the past few months that sometimes I don't even believe is real. But statistically it is significant. I have to keep reminding myself of that. It may be due to the gabapentin I'm experimenting with, but I prefer to think it is naturally diminishing. The improvement is too small to be very significant to my overall suffering or attitude, and I can't be sure it will continue or even last, but I look at the chart everyday and hope. Today I was considering that the rate of improvement was too slight to ever have much impact, but when you said three years, I said yeah, maybe.

I chart because it is so difficult to remember from day to day what the noise level is like and to separate it from the emotional response, and specifically because I would never be able to discern a trend like I hope I'm seeing otherwise. Unfortunately I only began my chart after six months had elapsed, so I missed any changes that may have happened earlier. Sometimes I try to remember the early days and sometimes it seems like it was more often more intense. But again, the emotional response is what I really remember, so it is difficult to know. I do remember specifically almost two full days of remission shortly after beginning the prednisone dose-pak that made me think ha, this is just a temporary thing. But it came back with vengeance and combined with the anxiety caused by the prednisone resulted in the worst three weeks in memory.

Anyway, thank you again for giving me that hope, and I wish I could do the same for you. You are much stronger than I for trying to meet the expectations of those you care about. We all have our stories and paths that got us where we are however and this torture exists in the context of what we have experienced before it. You said that your condition is again improving so that must make you optimistic since you largely recovered once before. You must believe it will happen again. I hope it doesn't take as long this time. I suppose even if we recover to whatever extent we can, we will always live in fear of recurrence.

I think you write beautifully as well, and you are inspirational. I've read your post several times. I had a bad day today with stress at work and a meltdown when the screaming ramped up as a result, but I'm calmer now. Writing does help when I'm at my worst. The words flow faster than I can type them but I tend to be more concise. Now I'm rambling. Thank you though very much for reading them.

 

You see, the problem that Anima and I share is that we can blame someone. I learned when I went to a few therapy sessions after the first doctor fucked my arm up and then denied doing it, that anger occurs when you have the combination of pain with blame. We all have the pain. I don't know how most of you acquired this blessing, but I'm guessing many don't know, or can only attribute it to general hearing loss. Maybe you blame the universe, I don't know. I/we can place the blame squarely on a doctor. In my case a doctor who very clearly stated that I should try this drug despite my reluctance because and I quote "what can it hurt?". And like that my life becomes a joke and a tragedy and a waste. It becomes a story someone might tell when they want to feel good because they haven't been foolish enough to fall for such an obvious trick. Something to get that little rush of euphoria like when you blow past the car pulled over for speeding just ahead of you, feeling like somehow there are only so many speed traps in life and that was one more you beat. And you convince yourself, under your breathe due to its absurdity, that it is your superior skill and intelligence that protects you, because luck is too fickle to depend on. Until it doesn't and you just become someone like us.

My anger keeps me warm. Most importantly it protects me from facing the overwhelming sadness I have for not being able to live the happy and contented life with my husband of only three years that I dreamed all of my life that is just there behind a translucent but impenetrable veil of screaming fucking noise.

When my head screams for five days in a row and is particularly bad I feel physically ill. I feel sick. I feel like I need a doctor. I feel like I need to hurt a doctor. I've fantasized about hurting doctors for almost five years. I want each of them to suffer in the same exact ways they have made me suffer. I don't really think that is an unreasonable desire. I think it is quite normal.

It's been a bad day and a bad night on top of four other bad days and nights in a row, on top of a year's worth more. I'm exhausted and I've taken my drugs and drank my alcohol and my head still screams but I'm starting to relax. how many more nights will I have to face before I'm let out of this trap and my life stops being a joke.

Anima you said your health went downhill continuously after you were afflicted with the tinnitus. That is the same as my story after that one doctor destroyed my arm and my confidence in my ability to fix things and make things right. That's all it takes.

 

Hi, Velodog! It’s great that you don’t lose hope, but don’t squeeze it, just believe that better times will come for you and that this nightmare will pass.

Listen, I also ration everything, but sometimes shredding things spoils it all. I would have killed myself if I hadn’t trust Dr. Wilden (a German doctor) who offered (and still offers) a cure with his laser therapy. I don’t still know how I managed to trick my brain, but I decided I had to trust him, I needed a hope, and laser was my only hope, so I took it. I was travelling to Germany every six months during 3 years to get a two weeks treatment each time. I paid thousands of € and never got any better; my hearing was not improving and neither did my tinnitus, but, meanwhile, habituation finally arrived for me, like it does, sooner or later, for everybody else, and then I knew it was time to stop the therapy, I just didn’t need it anymore.

After habituation, things got better little by little. Laser was the only treatment I had. I refused to visit doctors or take medications. I recall myself the first 3 years going every evening into the wood beside my house. It was in the summer time, when the cicadas were screaming at full blast, I wanted to daze myself and forget about my own buzzing, pretending for a while that nothing was wrong with my ears, finally crying and cursing the doctor that had put me on that road to hell and “hopping” that laser would work, soon or late, just like Dr. Willden had stated.

My life was pathetic, almost unreal, but I had that therapy that I had decided to trust and which was the only thing that kept me away from taking my life. For me that was the only hope, a controversial hope if you want, but it saved my life. Not long ago,with my mate, I criticised Dr. Wilden’s professional ethics and he replayed to me: “Yes, I agree, but don’t forget that his ethics saved your life”. That is true, because I didn't expect that my tinnitus would get better by itself, so I needed something that gave me hope, a cure, and Dr. Wilden was that hope I needed urgently. Dr. Wilden told me that laser gives energy to our hearing cells so they would heal quicker, but, independently our body has the power to heal itself through the natural regeneration process, it just takes time, sometimes years to achieve
an amelioration. He also said that a fluctuating tinnitus heals easier than a constant one. He has a lot of experience on tinnitus, so he is probably right.

We not only share that we can blame someone, we also share all the rest that you have written about it. I sometimes feel that Tinnitus , among many other bad things, has made a sadist of me. When I feel really bad I would be delighted to borrow my tinnitus to those doctors, one by one, and watch them suffer like I do. I also think it’s quite normal.

Yes, Velodog, we have a different but, at the same time, very similar story that has ruined our health on a variety of fronts. Actually, tinnitus is the most annoying of our afflictions but, probably, is not the most serious one, at least in my case, so we must hold on tight and do our best to solve them when possible, for the rest, never lose hope in a better future no matter if the present is deeply distressing.
I always read your posts with the greatest interest, it’s a pity that the circumstances are such a sad ones.

I wish you well in coping with this terrible affliction and I'll be around to read whatever you want to write.

 

Hi @glynis, my ENT gave me 25mg of Nortriptyline, which I haven't started yet. You say it stopped your head tinnitus, but not high-pitched tinnitus—what's the difference between the two? Isn't all tinnitus head tinnitus?

Thanks.

 

@DCsurvivor,
I still have severe tinnitus in both ears due to Meniere's Disease and hearing loss.
My head tinnitus was about 18 month ago or so and was horrible and my head noise sounded like a tumble dryer in my head and balance problems.
All that went away when put on Nortriptyline apart from tinnitus in my ears that actually sounds like it's coming from my ears.
Love glynis

 

@glynis Ah, I see. Well maybe this will help me! Because my tinnitus had migrated from my right ear to the middle of the head.

 

@DCsurvivor,
I really hope it helps you also.
Love glynis

 

I had a bad experience when I went from 10 mg of Nortriptyline to 25 mg. It took about 5 weeks for the 10 mg to kick in, then I went to the 25mg. After about 5 weeks on the 25 mg I started having constant headaches. Tonight is the first night. I stopped taking the 25 mg and will be calling the doctors on Monday. I will just be sticking to the 10 mg of Nortriptyline that didn't give me side effects and lowered my tinnitus some.