Very Severe Tinnitus and Hyperacusis After One Year

Hello, I'm french. I'm 57 years old. I had first time tinnitus in the army (military service) because of strong gun exposure. It was cured in military hospital. I think that i listened too loud rock music too in my twenties and thirties but without any special problem. At this time, there was no advise about danger for the ears. In 2000, i decided to go to my last rock concert in Glasgow (Iggy Pop) but I was in a bad emotional state because I had eyes problems at this time (floaters which depressed me) and i didn't know that you shouldn't be exposed to have noise when you are tired, stressed.... because ears are very sensitive.

So I had a tinnitus because of the concert and I didn't consult a doctor before coming back to France: too late to be treated with corticoids. The tinnitus was very loud during the night and it vanished away after 3 mother thanks to a therapist (energetician who also cured my floaters) or may be thanks of the time. Until last year, I lived with a very low tinnitus (1/10) and H (very low) avoiding rock and jazz concerts, listening music not too loud. It was ok, no special protection (only for noisy works). The t and H was in my right ear with only a loose of 30db at 4000HZ.

Last year, it suddenly came back during one night and became slowly worst with H. I consulted 5 ears specialists (2 said they were T specialists) and they all said I was ok, nothing to do. One said I had a psy problem and that I had no H!! It became suddenly worse at the end of july, and I felt desperate and had suicidal ideas. So, I went to psy emergencies and after one week sent me to a psy clinic where I stayed 6 weeks. The psychiatric told me the T would vanished away with his treatment (aD, anxiol., sleeping pill,s and neurol.) I had no more desesparate ideas and the T was lighter. I left the clinic in september but couldn't come back to work.

In october, idem. At the end of october, it became worse and when I discovered how dangerous are neuroleptics, I stopped them: very dangerous; I had to go for the second time (T was so loud) in hospital and I stayed 2 weeks in the public psy hospital (terrific place). I refused neuroleptics but went on with sleeping pills, AD and anxious. (giant doses which made my T vanished away for 4 hours . but I didn't know) because of a stupid psychiatric. My wife could see I became a (legal) drug addict.

We discovered at home on internet that AD, neurol and anxiol. (I had been taken anxiol. for one year 2 or 3 times a week to sleep because I had anxiety crisis because of new eyes problems) were potentially ototoxic and they were for med.

So, Xanax woke up my T in may 2016 and AD and neural increased them (but not sleeping pills). None of these doctors (ears specialists, psychiastrics, generalists) did' know it: stupid people: they waste my health! I stopped easily sleeping pills and AD and I'm now in anxious. withdrawal: you must go slow in order not to damage the brain. I've got rid of 90% of anxious. but it's a nightmare: T and H are worse every day or week: it's a classical symptom of withdrawal with anxiety, black ideas. I have no other symptoms.

But I can't work any more and can't do many things: my T and H are very heavy and even going out with big ears protections is difficult. I just drive less than 5 miles with my protection.

Going in a shop is a nightmare and my T (4 noises) rings all day. A shower is now too noisy and I just live day after day. I must stop these drug but I'me not sure T and H will decrease after the end of the withdrawal (post cure symptoms). It's such a misery!

 

Welcome to Tinnitus Talk@andreus ,

I have just read your story and see you have been through so much with your tinnitus journey.
I came off AD meds after 12 years for a back problem and little did I know they were helping me sleep with sever tinnitus.
My brain was use to AD meds for sleep and emotions even though they were for back pain and did not know what they had done to me.
I had to go back on AD meds for sleep and emotional support as coming off them after 12 years for a back problem gave me depression That I never had before as naturally a bubble positive person.
Think I will be stuck on them now for good.

You have done so well coming off medication but remember you don't have to prove you can cope without them.
Talking therapy is good but remember you come first and it's doing what's best for you to manage any medical condition.
I'm so glad you had great care in hospital and the support you needed.

Keep posting for support as we are here around the clock for you....

Love glynis

 

French army giving you salute. I believe definitely u know how to fight with enemy and gain. I Pray that you could stay positive and win against the devil T.

 

Hello glynis,

I had a psychotherapist when I had eyes problems: she works too in hospital and she either didn't prevent me from the dangers of anxiol. and she told me to go to psy emergencies if I had suicidal ideas/ I followed her advice which was completely stupid because psychiastrics only give drugs. Most of these doctors are useless. France is the first country for anxiol.: what a shame. My doctor gave them to me as if it was paracetamol! You didn't understand me: I didn't have in hospital great care and support: only drugs which increased T and H after 3 months. They thought I had T because I was depressed but I was depressed because I had T and H.

Hello Bidyut Saha: Tinnitus was given to me by the army because they didn't give us good ear protections during shooting exercises!

 

Yep ! I stopped taking showers. Now only baths at night..

 

Tonignt H and T became worse. Even touching the sheets in my bed is too noisy!! I feel so desperate!

 

Dear @andreus,
I read your story. My heart goes out to you. I just cannot accept the fact that in 2017 and yet there isn't at least a medical protocol, if not yet to cure, but to soften those symptoms. What was the cause of your first worsening? Have you narrowed down any particular reason? If it was random, then can you really be sure the second time was from all those drugs? Many members here claim that ADs and/or benzos did harm them. I'm not sure yet but i may have also made mistakes on drug therapies. Anyway, have you found any member with similar symtoms who can help you? Before joining this forum and while lurking, i had been reading posts of @Danny Boy. He doesn't seem to come here often anymore, but maybe you can ask him. I thing he managed to address his H with Keppra. I'm not sure. I'm just suggesting to contact him and ask for info and then consult a good doctor before you try any other drugs. On the other hand maybe you should stay away from drugs and give this time. There must be something. Stay strong please. Guys anyone here with experience?

 

I am sympathetic because I've been in your shoes and I know what it feels like. Stay strong. Hopefully your body will readjust its hearing levels with time and your H will start fading away. Some people swear by TRT type of therapies - maybe that's something you can look at if you haven't already.

This happens too often unfortunately: read up about gaslighting here.

 

Hello Vermillon and Greg,
thanks for your help. My first T was because of loud noise concert but this T was woken up by benzos (anxiol.), AD and neurol. (but not sleeping pills). They are potentially ototoxic and they were for me; I'm sure after many months of research. I know now everything about benzos ant T and H is a very common symptom of end of tolerance or of withdrawal. Pr. Ashton says these T and H are particular (really in the head) and difficult to cover. I don't know why it increases every week or day and are so heavy. It can increase too in post withdrawal symptom. All these drugs are dangerous: the most dangerous is neuroleptic, after it's anxiol. and sleeping pills and AD. Some people react really well to them. I slept so well with anxiol. during one year but it's avery perverse drug for dependance and its withdrawal is considered more difficult than heroin withdrawal. I stopped sleeping pills, neurol and AD. I stopped about 90% of anxiol. but the last ones are the more difficult. All my life, I'v preferred homeopathic and alternative medicine without refusing usual medicine when necessary (operation for example). I don't know why I trusted my doctor with anxiol., asking no question (but I was so anxious with my eyes problems at this time) and whenT and H strongly came back, it was as if I was in the fog, following all these stupid doctors, who just follow protocols. When they tell me to have a rest in a psy clinic, I never thought: "You have an ear problem, not a psy one" and I stayed in the hands of these dangerous psychiastrics. In july, before having suicidal ideas, I red the book of an ear doctor who wrote that anxiol. and AD can increase T and I didn't react...I was really confused at this time.
Do you know there's a scientific study which was made about AD int the USA by a psychologist. There was the same number of improvement in the placebo group than in the group with AD! So never take these drugs, especially if you have ear problems...
Vermillon: the first cause of my worsening was eyes problems: myodesopsies that means a high number of big floaters in the eyes, very invalidate for me (I couldn't use a computer any more). I was ready to be operated in Lyon but it fade away (for the third time) thanks to an homeopathic collyre, after one year, at the same time as T suddenly came back: a nightmare vanished away and another took its place...
Greg: I want to end my withdrawal before trying an ear therapy because I think it will put confusion in my nervous system.

 

@andreus
I have also few floaters. They never bothered me, but since T they seem to be more in attention. I believe there is a connection between floaters and tinnitus. Anyway, it basically seems for you to experience a serious withdrawal syndrome. You should connect with members who have similar experience for advice. Few weeks ago, i trusted a very bad neurologist that also bombarded me with meds, among others diazepam and phenobarbital. I stopped cold turkey after 1.5-2 weeks for the reasons you already now. You can not feel guilty and punish yourself for your choices. The only thing that you wanted after all was for your health condition to improve. You've been quite long on those meds so this withdrawal will probably take time to subside. You should taper off these drugs slowly. @GregCA might be right. Your body needs time to readjust. One big wish for you. Keep us updated.

 

Would you happen to have a link to that study?

Makes sense.

 

Greg how are you doing? Any better?

 

Today is a new nightmare: T stronger and I must eat soft food for less noise in the mouth.
I don't have the link for the study, about AD, sorry.
Thank you to support me, Vermillon and Greg.

 

My T is quite constant and stuck in high gear. No better or no worse than 6 months ago. I don't really feel much in terms of fluctuation.
I was hoping some natural softening and habituation would take place, but it doesn't look like it's happening for me.
I don't really have much anxiety anymore. Just frustrated by the impact it has on my cognitive abilities and related anhedonia.

 

Greg, could you please explain this a little more?

My whole career depends on my ability to concentrate and I still can't figure out what to do about it. I'm just scared.

 

Sure. What would you like to know?

 

Thanks Greg.

Is it the sound itself that is distracting? Or (some kind of) your reaction to it?

How bad is it? Does it affect your work or "fun" stuff like watching a movie or following a conversation too?

Have you found anything that helps so that you can get something done?

Do you think that a person with your tinnitus level could work? Could a person with your level of tinnitus do a (relatively) mentally challenging work?

 

The sound is distracting, which prevents focus, which then leads to frustration (which is my reaction to the inability to focus, not to the sound). I'm not anxious about the sound anymore.
My brain requires silence to focus (I used to wear headphones to work, but not to listen to anything, simply to block noise, i.e. noise cancelling) so the T intrusion is not easy to "forget about" for me. I need to train my brain to ignore it.

I'd say it's pretty bad. I can hear it in the shower (although I admit it almost masks it), when I brush my teeth (electric toothbrush) or shave (electric shaver), and of course anytime I go out, even at the beach (waves), or driving with the windows down, etc.
I don't think it fluctuates that much, even though it seems easier to handle in the morning.

It does not prevent me from hearing a conversation and understanding the words however (I have good word recognition, and I still have one "good ear"), but if the conversation requires cognitive focus, I'll have a hard time providing low latency responses.

Not really, but I do end up being able to get stuff done, just more slowly. I challenge myself with personal projects/tasks to:

1. "get back on the horse"
2. get a feeling of accomplishment (important morale impact)
3. learn and trend my "new velocity"
4. enable habituation
5. try to figure out what helps and what doesn't

That is exactly what I'm hoping my process will reveal, for me (I can't speak for others).
So far what I'm finding is that it is doable but at a slower pace. Also at the price of a lot of frustration and its related feelings. I'm hoping that velocity can ramp up with time (through some kind of habituation), and when that happens the frustration (and everything downstream from it) should get better.
Only time will tell though. I do think it's improving though, albeit slowly.

 

Thank you @GregCA

I really appreciate your answer. I keep getting spikes and I almost forgot how my baseline sounds, I have to make some career choices now too, so this is why I was asking.

I'm very sorry you have to deal with this. I hope you will improve to the extent where you can accomplish everything you want.

 

@maltese try not to be too hard on yourself as you've still only had tinnitus for 6 months. Tinnitus usually spikes for a reason but not always. If it keeps happening something could be causing it. Do you have hyperacusis? If you do and this hasn't been treated it can cause tinnitus to spike. Are you having any treatment at ENT?

 

Are u using an hearing aid?
My T seems to fluctuate badly, I have persistent loss of high frequency sounds but my low frequency changes up to 30 to 40 decibels!
When my low frequency drops I have a very loud hum in addition to my constant high frequency tinnitus. It's hard to habituate to these changes.
I may have cochlear hydrops and started myself on a diuretic today. If my low frequency hearing improves I feel 80% better!
Dom

 

Have you considered keppra for your h?

 

Yes I am, but it's not helping that much.

I understand. It's a moving target.

I was originally (mis)diagnosed as having hydrops and given a diuretic. Just a day after the first dose of diuretic is when my T appeared. I just had hearing loss before that. I don't know if the diuretic is responsible for the onset of T, but it's certainly something I'll always wonder.

 

Dear @GregCA,
The above is a helpful post. You seem like you have set up a well-balanced approach. Even though "albeit slowly" but hopefully steadily for the good. I hope for the best.

@andreus any progress? @DebInAustralia also mentioned Keppra. Did you look it up? Keep us updated.

 

Today worse than yesterday without any surprise and tomorrow will be worse. Benzos, AD, neurol have so completely disorganized my nervous system that I can't take other medication which reactions can be strange. H and T are so loud in the right ear that I must eat soft food on the left side of my mouth: the right one makes bad noises in the ear and I must put a towel in the "lavabo" (the place with water) because water is too noisy when I wash myself...Such a nightmare. I'm fed up having been surviving for monthes without any day of hope. These drugs stupid doctors gave me will kill me because of these incredible T and H.

 

T & H are known to be unpredictable especially when T is new or relatively new. That is why we heard so often of the word 'setbacks' in members' posts. This unpredictable aspect of T is also why it inspires so much fear, as it seems to convey the message of our health 'going out of control'. If we resist this reality of its unpredictability or setbacks, T can only generate more fear and anxiety and these can aggravate it or its intrusiveness. Somehow, at some stage, we need to learn accept the new normal. Accepting the 'new normal' without painful, negative emotional resistance is very important in recovery, as this doctor posted above this new reality in this one post:
https://www.tinnitustalk.com/threads/curing-tinnitus.4136/page-5#post-40854

By accepting the 'new normal', it doesn't mean we have to like T, but that we accept the reality of T in our lives and willing to do whatever adjustment it takes without painful resistance. It means we accept the total package of T much like when we have a flu we need to accept the total package of the flu with its various uncomfortable symptoms. Of course there is a big difference in between flu and T, one likely to have an end and the other seemingly for life, and thus the difficulty of practicing acceptance. But if you read many success stories, you'll come out with the pattern in many stories, that only after eventually surrendering our painful resistance to the T reality, that the process of recovery will hasten and meaningful changes occur.

The ultimate stage of acceptance is when someone says T is now considered part of his/her being. It is of course very difficult to do so with highly intrusive T. No doubt about it. It may take longer to get there for that. That is why sometimes you hear someone saying it takes then only a few short months to habituate, and others take much longer. As far as I know, some famous T personalities who are or have been advising new T sufferers have gone through years to get better. My first mentor Paul Tobey, a concert pianist, and once a featured speaker for ATA, and Kevin Hogan who sells a T remedy course, plus many others including myself, we took years to get better.

So be patient and hang in there. Try to learn some helpful strategies that work and try them out with patience. It may not turnaround overnight but it will help facilitate eventual habituation, and hopefully some of you can get there faster than some T veterans did. Here is a link to Paul Tobey's story published on ATA and it took him 4 years to finally changed course for the better when he changed his approach (you bet he might not be able to change course within a year even if he wanted to. This thing will take time.

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

Take good care. God bless.

 

thank you for not forgetting me and your helping.
I'm completely desperate; I can't leave my room with constant anxiety because of two noises, yesterday evening and this morning, which increased my left T. Even when I'm typing this mail, I'm breathing with difficulties. Every day, S seems the only choice to free me of this nightmare. And I've two children and a wife I love... My T a reactive. Were yours T and H reactive too? With this so heavy H, I can do very few things. I'm in a a jail, inside me (T) and outside (H). I've got them for one year now and it has so degenerated...

 

I really feel for you Andreus, I really do! I have T that is mild and comes and goes, so for having T, I think I have the "best" condition...and it still drives me crazy. I can't imagine what you are going through.

My question is, T that is caused (or worsened) by Benzo or other meds, doesn't they go away or become better over time? Doesn't your body just need time to adjust to the reality without the meds? Can meds really cause a chronic T?

 

Benzo withdrawal can cause permanent damage to nerve cells.

https://en.wikipedia.org/wiki/Benzodiazepine
https://www.ncbi.nlm.nih.gov/pubmed/12467378
https://en.wikipedia.org/wiki/Excitotoxicity

What benzos do is increase the effect of GABA. This results in an imbalance of glutamate and GABA which causes the body to increase glutamate so that there is balance. Tolerance to benzos happens when there's balance which typically takes a few weeks to occur.

Once the benzo is stopped then there becomes too much glutamate and not enough GABA basically. What happens next is that too much calcium enters the nerve cells and causes all sorts of damage (excitotoxicity). The damage may eventually destroy the cells. Certain sensorineural tissues in the inner ear do not grow back and can't recover. So then you get tinnitus as a result and it'll most likely be permanent because there's typically no recovery.

This is why slow benzo withdrawal is important because the imbalance between GABA and glutamate won't be so great and so not much calcium will enter the cells and cause all sorts of damage. Also vitamins A, C, E, and magnesium could possibly help stop with the negative effects of too much glutamate while the damage is being done. You can also get too much glutamate from other sources such as MSG.

 

That feels me more desperate.