It's My First Tinnitus Anniversary Soon: Still Severely Debilitated

Hi all,

In a few weeks I will be having my first anniversary with tinnitus. Many things have changed in my life over this period. On the positive side, I seem to be able to survive each day somehow. During this period I went through a benzo withdrawal, experiments with Quetiapine and Zopiclone, being on Mirtazapine and tapering it (I'm doing it now). I am no longer actively suicidal.

On the less positive side, I'm not coping very well at all. I still cannot watch movies, listen to music or read much news - all because of a huge emotional trauma of the "loss of life". I have pretty much isolated myself from all social events, got fired from a job that I was unable to do, wake up in such a state of grief and anxiety that I am crying almost every two days. I went from a confident and happy person to a total bedridden anxious mess.

I'm reading all kinds of success stories across the internet boards, follow positive thinking advice, but the reality is that I'm severely debilitated even after almost a year. After the FX-322 news I gave up hope on the medical profession, in fact I got extremely anti-doctors after seeing how much ototoxic stuff they push onto people.

My only hope for now is to be able to habituate to some degree to at least survive each day without debilitating anxiety and crying outbursts. I don't know, maybe I expect too much after a year, but I just see how people report being able to return to normal activities in this period (there are some fantastic success stories from the members here), and I'm still bedridden...

I apologise for the rant, just can't hold it in myself anymore.

 

No need to apologize for the rant because I too am still debilitated and trying to survive each day as best as I can for a year and a half now.

I have reactive tinnitus and severe floaters so yeah I kinda know the struggle. You're not alone. Sometimes it can take a few years for some people to adjust.

Just out of curiosity, do you hear your tinnitus all the time? Is it maskable at all?

Music sounds distorted to me so I don't listen to it much. I have been thinking more about my floaters than my tinnitus lately despite hearing it all the time. Before I developed intrusive eye floaters, I thought “well at least I can enjoy visual stuff and my art if I can't listen to music.” Then suddenly the floaters began not long after.

 

No need to apologise. There is no doubt that this condition can be very difficult and people experience it on a broad spectrum.

What I’ve perhaps found most helpful is keeping myself busy. Sitting and ruminating over my tinnitus is a path to despair. Also, having some sort of routine is important even if you’re not working at the moment. Going to bed at a reasonable hour, getting enough sleep, and waking up at approximately the same time each morning. I know it’s basic, but it’s easy to get stuck in bad habits.

Also, is there something that you enjoy doing and feel you’re able to do at the moment. It doesn’t matter what this is: reading, gaming, cycling, coding, ... Doing something to keep your mind occupied and, hopefully, deriving some enjoyment out of it is a worthwhile state to shoot for. This may not be easy but if you focus on something small and build from there you’ll likely get some momentum going. Also, don’t be too hard on yourself as life doesn’t always mix well with our best laid plans. When times get hard know that better days are coming and you’ve done well to get to the one year anniversary mark.

I hope things get better for you and let us know how you go.

 

When you say bedridden, do you mean you're physically unable to get ouf of bed or are you just too depressed to get out of bed?

I wonder if "deconditioning" is making your moods worse because I read where if people stay in bed long times their body deconditions. I did a quick google search on "body deconditioning" and it said a common symptom of "deconditioning" was depression. I think exercise over a period of time can help to reverse it though, if you can do it. Some people do better with non-standing exercises like using a rowing machine or a recumbent bike instead of jogging on a treadmill. Maybe it's something you could look into. Whatever the case, I hope you feel better as soon as possible.

 

Did anyone suggest Carbamazepine for your ticking?

 

Thank you for your kind words. I have always had mild floaters, but they were not much of a problem, after getting tinnitus my vision got slightly worse and the floaters are more dominant. I believe it's got mostly to do with me compulsively reading tinnitus stuff on the internet on my phone, hence the vision decline...

My tinnitus is maskable with white noise at around 60+ dB. I can clearly hear it in most settings, although when I'm walking along a motorway I have moments when I don't hear it. Also, when listening to speech or talking to people, it goes significantly to the background.

I'm very sorry to see you are still struggling too. I hope you'll find your way to the normal life soon.

 

@Simon85, thank you very much for your support. I'm trying to stick to a routine, especially in regards to going to sleep at the same time every day. Waking up is still problematic due to the sleep problems, I usually wake up at around 6, then get up an hour or so later.

I've started computer games, haven't played them for 15 years, so it seems like my new hobby. I always enjoyed drawing for example. But that doesn't distract me that well anymore... I'm now looking for remote jobs so I won't have to mingle with people. I used to love socializing but now I'm anxious at a simple thought of meeting new people.

 

Thank you for your reply. Depression is just paralyzing. I stay in bed most of the time just dwelling on tinnitus. Thank you for the suggestion, I haven't heard of this term before. I seem to be extremely unmotivated to do any kind of exercise, even something very light. I'm trying to do daily walks now.

 

No, I tried Quetiapine though but it made things even worse - louder tinnitus.

 

I have dysautonomia and I think I got some deconditioning from staying in bed off and on with tinnitus. Walks were not enough to start improving my condition. Right now I am using a rowing machine, some dumbbells, and an ab roller. The ab wheel and rowing machine seems to have helped my condition the most I can't say how much of my problem is due to deconditioning and what part is due to my dysautonomia. With my condition, exercising for a few weeks put a lot of stress on my body but I have definitely noticed some benefits. I guess I will see what happens in the future.

 

Good to hear you're healing. How's your emotional reaction in regards to the tinnitus itself today?

 

Thanks! It's been very good today so far. It also doesn't seem as harsh as it was a few weeks ago. I expect it to fluctuate though but I am hopeful that this exercise will help my dysautonomia and that my tinnitus will become lower. I guess I will find out in the next few months.

 

I hope it will work out. I'm having a spike today, just out of the blue. Trying my best to keep cool.

 

I don't think the two are comparable. One is an antipsychotic and the other is an anticonvulsant...

 

Take a walk in the woods or go by a lake or river. Listen to the trees. Walk barefoot on grass or on dirt. These things seem to hit a reset button. Get out of the house! The more you listen to tinnitus, the louder it gets.

When you do something visually and audibly stimulating you forget about it for a while and eventually you can tune it out or forget about it. Give it a try.

 

True... I just don't want any more big pharma poison to experiment with.

Thank you. It is usually better when I'm outside, even just drinking coffee on a terrace. I have better days here and there, so I am hopeful. It's just a very slow progress.