The Need for Silence

This site has been incredible to get me through the first few weeks of this crazy sound in my head.

I am 3 months into having T.
I was driving on the road listening to talk radio mid September.
Then this awful feedback came through the station and I laughed saying " How can their sound engineer not hear that sound" Listened for a few minutes and said enough and turned off the radio.
As you all have amazing insight - you know that the feedback sound was still there. IT FREAKED ME OUT!
I work in the residential security industry and thought maybe a smoke detector / panel was blaring in my truck. I pulled over and nothing was generating the sound but was unbelievably loud in my head. I came home and told my wife.
Toughed it out for a few weeks by finding this site.
Then one morning had the awful thought that I was no longer going to be able to read in peace. ( I collect rare books). My kids talking to me amped the sound and made me very angry towards them. I didn't want to watch tv or service alarm systems because I kept thinking how pathetic people were to not know what I was going through and how shallow everyone is who "thinks" they understand my dilemma.

This caused panic and I went to the VA hospital ER (4 years service in the Air Force).
Once I was seen I completely broke down weeping uncontrollably and they asked me if I felt like hurting myself. I told them that I wanted to put a knife in my left ear to get this noise out of my head. MISTAKE.
They put a cop on me and monitored me for suicide watch or hurting others. Once I met with Psychiatrist in the ER I explained that a renaissance painter cut his ear off trying to rid T and it was not a literal statement but conveying the insanity going on in my head with the sound.

They perscribed me 30 pills of Lorazepam. 30 pills of Trazedone. The would not give me a perscription until I was given a consult by psychiatrist. They told me it would be December 4 before I could see an audiologist. (it was Oct 15th). They said I would see a psychologist within the week to help me cope. Right before leaving the doctor said " I don't know how you are dealing with this - 5 seconds with that ringing I would go crazy" This triggered another meltdown weeping.

Fast Forward - today I have yet to see a psychologist. They told me it would be February before I could be seen. I went to ER last week again and they said they had no record of me being given Lorazepam. I weened myself of of them within the last month 1. because of reading this forum 2. I just knew I would not get a renewal of meds or be seen by psychologist. I stopped taking Trazedone after 2 weeks because of the same doubts of any follow up. They agreed that February was too long to be seen and agreed to OUTSOURCE me to another doctor after a waiver was approved. I was ecstatic! Found a great referral doctor and called them. Said I needed the VA to contact them to notify of approval before APPT could be made. Called VA and they said they would call them. Guess what....nothing. NOTHING! And each day that passes puts me further in the appointment log of the doctor alone.

A big thank you to this forum because I would not have kept sane without all the other great people on here who are brutally honest and have amazing research to share and experiences.

So, with 5 kids it is hard to hear silence in any event but accepting that fact is the hardest part. I recently started taking Melatonin at night and after only 3 days I noticed a decrease to the point I had to focus on hearing the sound during some parts of the day. By days end though it was this constant sound like when the old TV's were turned off and you hear the high pitch "cooling" of the tube.

Does anyone get sick from the sound? When I try to block it out I experience anxiety and try to escape my body mentally and feel disoriented / dizzy. Understand habituating, masking, and other treatments but how do you function in the world without snapping on people or just shutting down. Some days I want to lay in bed and just zone out but I have a family to feed which with this T has caused even more stress during the holidays.

Is that Trobalt drug available in the US. Autifony is a Europe thing correct? 3 researchers / ENT in North Carolina are doing the AM-101 project but wanted to see results from my Audiologist first. Please accept my apology for this lengthy synopsis. It helps knowing others know your struggle with this.

 

Yes. It's called Retigabine in the US. Will send you what you require in terms of "evidence" (in a PM) for a consultation.

Needless to say, it is experimental in some way; needless to say, you will need to consider side-effects (vs. your suffering).

To the very best of my knowledge, it remains a "Europe thing", but the same compound is scheduled to be tested as a treatment for both tinnitus and hearing loss (in separate trials). The latter was originally scheduled to take place in the US (alongside the UK clinical trial for tinnitus), but has been delayed - again to the best of my knowledge.

The inclusion criteria may change/evolve, but does at the moment exclude a number of participants.