Need Some Urgent Advice... (Tinnitus Has Become an Existential Threat, Looking for Relief)

[FlyFish]

Hi everyone,
Excuse the length.

I've been suffering with tinnitus for 3 years and I think the cause was a single dose of Wellbutrin in Oct 2012. Anyhow, we bombed it with psych meds and a well intentioned psychiatrist put me on Xanax in Apr 2014, I developed severe tolerance and got very sick from this and became disabled while tapering earlier this year. I'm nearing the end of tapering using Valium and will be done in about 6 weeks. While I got windows of relief from T my CNS was severely damaged in the process.

The problem is the tinnitus is returning, it is mostly in my left ear and is very reactive in nature. It's at about 12khz and is a hissing type of ring about the same pitch as a running refrigerator...only louder. Here's what I've tried:

1. Soundcure Sernade. Not really happy with this, might be making it worse and doesn't mask the T.
2. Multiple failed attempts to mask...currently using a Siemans device my audiologist loaned me that does brown noise and ocean waves. Fail. Audionotch...fail. Sleep Machine iPhone app...some relief from a couple programs not much. Bose SoundDock and a whole host of sounds streamed to the device on nightstand. Simply Rain. Tinnitus Pro. Starkey Relax app. Just not much relief and sleep is pretty compromised.
3. Neurofeedback. Not effective but Valium withdrawal interfering.
4. Dentist says I'm grinding so did a mouth guard.
5. Cranial Sacral massage. This provided some very temp relief. An hour or so.

I guess I'm at my wits end, pretty scared and my T has ruined my life. There are times it goes away but those are not that often.

This has become an existential threat and I'm willing to try about anything. ENT work up of course shows nothing. I'll travel, spend money, whatever. I think I need to get into a leading expert where we can experiment with some things, think outside the box etc. I'm not looking for a cure, just some relief for sleep and some coping skills to be able to have a bit of a life.

Thanks so much...another desperate sufferer in need of help.

 

[Bertman]

Might be worth looking into TRT. As you state, it won't be a cure, but a good TRT specialist (since you are willing to travel and spend money, try and find the best one possible) may be able to help give you coping skills and the proper tools to help with your sleep. From what I can tell, the only people who are against TRT are the people who haven't tried it. Also, maybe try some natural sleep supplements (many people recommend melatonin). Last of all, give it time. I know you've had T longer than I have, but maybe after awhile of being off hard meds it will help.

If I think of anything else I'll be sure to post.
Best.

 

[Dubbyaman]

FlyFish Contact Sven Vanneste out of Dallas. He's currently trying to get funding for an upcoming clinical trial.

 

[FlyFish]

Thanks...doing natural sleep stuff.

I guess what I really need is a masker or sound generator that works...any ideas? In the interim that is...

 

[SoulStation]

FlyFish Contact Sven Vanneste out of Dallas. He's currently trying to get funding for an upcoming clinical trial.

Have you spoken to him.?

 

[Dubbyaman]

Yeah, I hope to fly down there sometime next year.

 

[Dubbyaman]

SoulStation meant to quote you in the previous post haha...my bad

 

[Bertman]

Well if you have an iPhone, try using your Bose dock and downloading the app MyNoise to your phone. It has the best selection of noises to choose from IMO, including nature sounds, coloured noises, and everything in-between. Then you can customize each sound with different frequencies to make it specifically for your T.
https://mynoise.net/noiseMachines.php This is the website, I highly recommend checking it out.

 

[FlyFish]

I have MyNoise I think I need something directly pumping into the ear.

 

[Bertman]

Fair enough. I know what you mean though. I used to be just fine with white noise playing from my tv, but now since my T has increased I can't have my ear on the pillow cause it just is too loud

 

[Bertman]

Might be worth looking into pillow speakers

 

[valeri]

FlyFish Contact Sven Vanneste out of Dallas. He's currently trying to get funding for an upcoming clinical trial.

What's this about?

 

[undecided]

This is a bit off-topic but this Wellbutrin seems like some nasty stuff.
I've definitely read various people on the forum mentioning that it caused their tinnitus.

 

[lctx]

Luckily I've been able to make peace with my wellbutrin-caused tinnitus and tune it out (even though it is quite loud, especially in my left ear). i actually live in dallas and attended a seminar series put on by UTD's Callier Center. my take-away from that is tinnitus treatment is in its infancy and for most types, there just isn't treatment yet. i even participated in one of their clinical trials for a non-invasive treatment. it didn't help. interestingly, the clinician said i wasn't the only person who reported their permanent tinnitus was caused by wellbutrin.

 

[WayneG]

FlyFish. I'm sorry for what you're experiencing. I feel like it's very similar to mine.

My T began on Dec 4. Had mild sinus congestion, and was feeling out of sorts, but not very sick, and it passed within the day. Was accompanied by ringing in my right ear, which has always been troublesome on plane flights.

The ringing continued. It was a humming, which wasn't too bad, except when it got loud at times. I made a doc appt, who set me for a ENT appt a couple of weeks later.

In the meantime, it has grown progressively worse. The humming was accompanied by high-pitched crickets at times, which became more and more common. Now they're the norm. When it gets real bad, the crickets morph into high-pitched cicadas, which makes sleep real hard.

The disturbing thing is, the usual T go-to - Masking sounds - worked on the original humming, but not the cicadas. Too loud, too high. And any sound seems to drive the screeching louder.

Had my ENT appt day before yesterday. Everything looks fine physically. I have hearing loss. Strange they said, because it was in the mid-range. ENT doc suggested the T was due to congestion and stress. My dentist says I'm a grinder/clencher, and it is that same side that I have a popping TMJ as the damaged ear.

Used valium last two nights to sleep. Quiet room; no masking helps. Woke up feeling ok this morning. Crickets and buzzing were at a very low level. Until I read your post about Valium withdrawal. *sigh*.

My T has remained at a low level thus far this morning, been trying to control the sound levels around me.

Super depressed. In mourning for the life I had before. Even with hearing protection, bass goes right through to traumatize my ear. Not looking forward to militantly avoiding sound for the rest of my days.

 

[Michael Leigh]

@WayneG
Sorry to hear about your discomfort, it's best see your Dr. If you have been attending gigs or concerts where loud music has been played then please keep away for a while. If you have been listening to music through headphones, I advise you to stop even at low volumes. Try to avoid quiet rooms and surroundings particularly at night by using low level non intrusive music such as classical. Try to keep the sound below your tinnitus. If the T persists consider buying a sound machine which is better. Please click on the link below as you might find the posts helpful. Many things can cause tinnitus including a build-up of ear wax.

Michael
https://www.tinnitustalk.com/search/member?user_id=3134&content=thread