Going Nuts, Cannot Sleep

[katcar0001]

So, I was preparing for bed on Wed. night, Oct. 19 after a social night with friends (no loud music). Turned on my white noise fan as usual and heard this high pitched whining/ringing above it. Thought it was my fan. Turned it off... still ringing. Could not sleep so took a 1.5 mg Melatonin. Woke up with the world tipping upside down like a fair ride and super dizzy. Could not even get up to relieve myself, it was that bad.

I have had issues with Melatonin causing me similar symptoms in the past, but never this bad. I didn't really connect it with the ringing. The following Monday I had my ears irrigated--compacted full of wax which I expected as I often have this problem, and my ears get plugged with water from showering, bathing, swimming. Forgot to tell doc about vertigo nausea incident. No relief from ringing after the ear cleaning, although I could hear a lot better. Took a shower on Wed., Oct. 26th--ears clogged with water again, esp. on left side.

Went to see another ENT. I thought she was brilliant. Told her about vertigo/nausea incident. She took me through some exercises and looked carefully at my ears while I held my nose and blew. Right ear drum moved; left did not. She could see mucous in my left ear that was evidently from my nasal passages and deduced I had a eustachian tube problem. Took me off Afrin (had no idea how bad that stuff is), put me on Prednisone (60mg 3x a day for 9 days with taper off program), nasal steroid spray and nasal lubricant spray. I thought I'd be better by now...

Friday went out for Day of the Dead celebrations (I live in Mexico). Could hear the horrible, high-pitched whining over the din of crowds, mariachis and LOUD church bells. Have had a really bad time trying to sleep. I have found only one tinnitus masking video on youtube that drowns it out, but I find it hard to sleep to. Have tried benzos to calm down at night, but still do not sleep much.

Last night was really stressful--we had a massive, wild hailstorm for an hour and a half! and the patio drained clogged, roof leaks everywhere, loud noise... a real mess. However, for the first time, my buzzing was much quieter. However, I still did not sleep much. Today, the noise is my head is even louder and debilitating.

I do not know what to think--why I finally got my first bit of relief last night but it is worse today? Or I perceive it that way. I feel like I am doing all the right things with the ENT's program and using the masking video... not really sure what else to do. She does not want me doing the nasal irrigation thing right now because my nasal passages are so dry, and she thought the saline would make it worse. Maybe if I did the turmeric version?

BTW, I am a breast cancer survivor and have been on Tamoxifen for almost 2 years. I did find one article that said it can be ototoxic when combined with loud music... but I don't ever use head phones and listen to music in my car at moderate levels. Not sure what else to think or even what to ask. But between this and the cancer recurrence fear... this is no life.

 

[MikeL1972]

Hi katcar,

Welcome to the board and sorry to hear of your troubles.

To begin, I would like to congratulate you on kicking cancer's rear end. As you know, your first and foremost concern should be to keep yourself as healthy as possible and get regular check-ups (ie. blood work and other screenings) in light of your battle against cancer. Cancer as we all know is lethal; tinnitus is not!

Based on your message, you seem quite stressed and anxious, both of which feed tinnitus. I know it is not easy because back in March when I first got it, I too felt like a character in a "Twilight Zone" episode. After fighting it for about one or two weeks, I finally got smart and convinced myself to give up and let it win. Once I did that, I started to gradually habituate and now my nervous system could care less about the ringing. As for getting a good night's sleep, that is essential for everyone - regardless whether you have tinnitus or not.

One thing you can do is to keep a journal and track your progress. Some days will obviously be better than others, but as time goes on and your mind accepts it, it should become more manageable for you.

Lastly, I would like to underscore the importance of thoroughly researching any and all pills you ingest. I know meds come with what seems like a book about potential side effects, but most of us are too lazy to read it.

You will be fine!

 

[glynis]

I have trouble sleeping as my tinnitus is way to loud.
At the moment I'm on sleeping tablets but break one in half some nights or try miss one out but I know it won't be long term and might need find another treatment ....lots of love glynis

 

[billie48]

Sorry about your struggle with T. Your T is new and alien to your body. So every thing appears so hard to deal with and you have problem sleeping and concentrating. That is the initial struggle most of us have gone through. Don't worry. It is normal. These bad days will pass. If your T will fade over time, all the better. If not, you can still learn to habituate to it like many members do.Try read up the success stories to learn their insight and to feel hopeful about the future. I was in a mess initially with ultra high pitch T and severe hyperacusis. I thought my good life was over and I panicked to no end. But today I live a happy and absolutely enjoyable life. I wrote my success story like others do and I share some helpful strategies which has helped me turn around. Read it up if you have time. So keep positive. Things will improve over time. Take good care. God bless.

https://www.tinnitustalk.com/threads/from-darkness-to-light-how-i-recovered-from-tinnitus-hyperacusis.3148/

If you need more masking sounds besides the youtube one you mention, try these:

TT's audio player: https://www.tinnitustalk.com/audioplayer/

or this online sound library, particularly the self-mix nature sounds: http://mynoise.net/

or download free sound generator 'aire freshener': http://www.peterhirschberg.com/mysoftware.html

 

[katcar0001]

I am sorry I forgot to check back here sooner to see if anyone responded. I was surprised and grateful to see your kind compassionate words. I know tinnitus is not lethal, but it sure does a number on your psyche. I appreciate hearing of your similar struggles, Mike, and that you habituated. I think I have already calmed down quite a bit--with momentary bouts of panic (I realized a couple of days ago that I also have hyperacusis--the fridge or a shower can really spike the tinnitus and send me running for cover). I have found some solace in binaural beats, and I am getting used to sleeping with them. For some reason, the ones with bells or beeps with some white noise in the background work the best so far. Billie, your story also sounds similar, and I am going to try the links you suggested and also read your entire story. Success stories are a real help.

Glynnis -- I am sorry that yours is so loud you cannot sleep without assistance from a sleeping pill. I really feel for you as I have lots of sleeping issues. I would really like to wean off my pill, but now may not be the best time. And, I have read that one of the withdrawal symptoms is tinnitus! But who knows if is not also a side effect? There is some literature to support that. What a curse :-(. I am sorry you suffer so much, and it's wonderful you are of such support to others.

 

[Candy]

Have you tried the my noise website or app, it has loads of sounds, the first weeks are the darkest, we're all here for support x

 

[katcar0001]

Candy, That site is amazing--so many sounds to explore! Thank you so much.

 

[katcar0001]

I wanted to report back on my progress: My T& H showed up out of nowhere on Oct. 20. I tried steroids for 9 days--no change. Acyclovir for 2 weeks--no change. Ditto with Arlevert. Tried blowing through a balloon several times a day and steroid nasal spray for weeks--you guessed it, no change. But within the past 2 weeks, I have been getting better. I still have T & H, but not like the first month. The fridge, shower, vacuum cleaner and other "ordinary" sounds do not put my teeth on edge. I wake up to pretty much in silence every morning. The T is there if I listen for it, but it's not the 3-headed serpent with a bell. I think the things that have helped me the most have been time and trying to live my life as normally as possible. I read this over and over on the forums, and I think the advice I read on here about acceptance and living normally was the absolute best. I will never know what caused my T & H, and I have stopped caring about that. I am having my doubts that it was eustachian tube dysfunction that caused it. Other things that have helped me include tinnitus masking sounds (this one is the absolute best for my hissing/ringing monster: ). I cannot sleep without it now. In addition, I have been doing my own version of "sound enrichment" for the hyperacusis, which includes listening to electronic music, esp. dubtep (go figure) without headphones and at low volume. Things that still make my T & H go crazy: concerts and loud venues. I have been to two concerts since this happened to me, and both times I used acoustic earplugs. They saved my a**. I go everywhere with them, but only use them for extreme situations--including the dentist. I use noise-canceling headphones on the plane. The other thing I noticed and try to avoid is SALT. And I have low blood pressure, so I do not get this one at all. But the minute I eat something salty, I get a spike. Other than that, alcohol and coffee do not seem to affect it. I am still learning, but these are the major things that have helped me so far.