Pure Torture

Hello, I am 57 and have had tinnitus for at least 25 years. Up until approx 3 years ago my tinnitus was very mild, but then it has become so severe and intense that it seriously makes me want to end life at times. I know that is not an option, that would be committing the ultimate sin, and I won't do that. But I sure think about it often.

I sometimes have to pace around the house in the middle of the night just to keep my sanity.

I cannot sleep at all without the help of benzos, and I do not take them every night like I wish I could because I do not want to become addicted.

I have Meniere's disease and have had what they call a endolymphatic sac surgery, and after that is when it became so loud I cannot stand it.

I have tried hearing aids with a masker, white noise, ear buds, and nothing seems to help.

What the hell am I supposed to do?

 

@GP55,
Hi Glenn,
@Michael Leigh tagged me in another thread so I have replied to that one.
Welcome contact me anytime on and off the forum.
Love glynis

 

Thanks a million, how can I contact you off the forum? Thanks

 

By PM for now but happy talk with you on the phone or whatsapp or Skype chat after next weekend.
( my mum died and will be laying her to rest next week after Chappell of rest so having a quiet week )
After that your welcome talk with me any time and happy for you have my mobile number.
Love glynis

 

Very sorry to hear about your Mum, God Bless you!

 

Hello again,
I have T so bad that I cannot think straight, I cannot focus, or hear very well. It is a constant loud high pitched hissing sound that sounds like its coming from the middle of my head, in between my ears. It never eases, or fluctuates. Constant, severe, and driving me mad.....I do take klonopin about every other day, I don't believe it helps with the T but it does help me sleep that's for sure. Problem is it seems to make me drag during the day even at 1 mg. If not for klonopin I honestly don't think I would sleep at all, that's how intense it is. After reading some of the posts I may try magnesium and a antihistamine. My ENT which is a menieres specialist says there is absolutely nothing that will work, I'm not buying it, I will try different things and fight this tooth and nail. I appreciate the feedback all ready and this is my first day here. Thanks for being here and I hope we can help each other.
Have a great day/weekend
Glenn

 

@GP55,
Hi Glenn,
Just got home from my in-laws.
Last year Glenn my tinnitus was so sever in both ears and head and wasn't getting the support I needed and could not function at all or eat and had take time off work and wasn't sleeping.
I was on sleeping tablets and my doctor said he wanted me on Nortryptaline as was better long term for sleep than sleeping tablets he said if my signals were missfireing that it will help also.
I started to sleep and it also stopped my head tinnitus and low drone but still have it in my ears but a big help and now doing better.
I know we all can react differently to medication.
Cinnarazine 15mg states on the leaflet inside its for Menieres and reducing tinnitus so might be worth a try for you.
I know steroid injections can help but for Menieres Sufferers if have gent injections it destroys your middle ear function and hearing but I know even deaf people get tinnitus .
Nortryptaline and Amitriptyline are the only AD meds I know to be known to help relieve tinnitus for some people.
I totally know what your going through and this kind of tinnitus due to Menieres needs extra help as Menieres is progressive and at burn out stage leves hearing loss and Sever tinnitus and no cure.
I would look into trying Cinnarazine 15mg but will make you tired or the AD.
I'm around on here everyday so will reply to you as soon as see your post.

Love glynis x

 

Thanks again!

 

@glynis
Sorry to hear that your mum had passed away. My condolences to you and your family. It is so admirable that you are dealing with the grief of losing your dear mum and yet have the heart to reach out to a struggling member. God bless you for your care & compassion for people in needs.

@GP55
Sorry that you are struggling so much with the high pitch T. I have ultra high pitch T too like a dentist drill with 10 times the pitch. It was very hard for the body to take on such an alien and highly irritable sensation initially. Then on top of that, I was also soon hit with severe hyperacusis which turned all normal sounds so loud and piercingly hurtful. I was in a mess initially with relentless anxiety and panic attacks, coupled with depression and struggling to sleep. I was on Ativan, Prozan, and sleeping pills just to survive each long dark day of immense suffering. I never thought I could survive this and the future looked very bleak. Yet today I live a normal, productive and absolutely enjoyable life. I wrote my success story like others did and share some helpful strategies. For brevity I provide the link if you wish to read it.

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

Don't panic and despair. Things will get better with time and with some helpful strategies. Try masking your high pitch T even partially. Try torrential rain with wind sound or waves, shower sound, waterfall, cicadas etc. Sometimes I had to use squeaky faucet if all else fail. But initially when my H was hurtful, I could only do partial masking with low volume. But anything was better than hearing that high pitch scream all by itself. However, the body does have its miracle of healing and getting hardened to something with the same repeated stimulus. I couldn't handle the high pitch shrill of T before. But today the body is hardened to such sound and it just doesn't react negatively to T like it was before. So give it some time. Take good care. God bless.

 

Thanks for the encouraging reply, I def believe in mind over matter but man this is a tough one to handle. I try and stay positive but sometimes it just gets a hold of me and I can let it go. It's a daily battle and I won't give up. I can tell you this that just by joining this forum and reading other peoples struggles and ideas has helped me all ready.
Thanks again for your time and response.
Glenn

 

@GP55

Hi Glenn. Have you tried Ambien or Lunesta? I've found these to be very effective for sleep. Unlike benzos, they don't cause much withdrawal or tolerance.

 

Hi Glenn

I'm only in the early stages of Meniere's compared to you but I understand how you feel about feeling like ending it. I am also constantly thinking about it. In fact endless sleep is the only thing I look forward to in life. In any case I would never actually do it.

Have you tried acupuncture? I think it helps my tinnitus somewhat. Not much, but anything is better than nothing.

Has your Meniere's affected both ears? Mine is only in one ear for the moment. Admittedly the t is the least of my concerns, with hearing loss, hyperacusis, pressure, dizziness, and those terrifying vertigo and drop attacks causing more problems for me. I can live with the t, but those other symptoms are what makes me think life is not worth living.

Do you believe the surgery caused the unbearable t? Do you still suffer dizziness and vertigo?

 

Yes I have tried them, unfortunately they do not work for me, and the calming effect of the benzos I believe actually lower the severe loudness of my T, but just ever so slightly, it's still insanely loud. Thanks for the recommendation. Best regards.
Glenn

 

I have bilateral Menieres, so yes in both it started out in one and went to the other. This does not happen to everyone and I hope it remains in just one ear for you. My symptoms of pressure, fullness, vertigo, dizziness have eased up but in the mean time the T is through the roof. My main issues right now are I still get vertigo and pretty much constant diziness/off balance which I have had therapy to help me deal with that. I hope your T remains the same or calms down some, but at this point the T is so bad that it makes it hard to do anything, sleep is the best way for me to get peace of mind. But I try to remain positive and currently am on a water only diet for 48 hours, 24 more to go. Maybe I will hear a difference, fingers crossed. Hope you get better soon and just hang in there and keep it positive.
Glenn

 

I actually do believe that the surgery caused my T to be so severe, but really hard to say. And yes I have tried accupuncture for my T and no luck. But wouldnt discourage anyone from trying it.

 

Hey @GP55 so sorry your T is that terrible! I hope you get some relief soon. I am not against using medicine when it is needed and necessary. If it helps you to better your life and stay calm use it. You can taper down if you ever actually need to anyways. However, I noticed you say you only use it every other night. On the nights you are not taking it I recommend trying Melatonin if you haven't already. There is this one melatonin that is 10mg extended release and I love it! It has an instant release coat on top and than the rest of it is extended release to keep you relaxed and sleeping the whole night. "They" say that melatonin helps some people with T and I noticed mine was quieter with it. Just an idea. Not sure if you already tried it? Good luck to you. I wish you all the best. I haven't had T very long but mine was crazy loud all day long and nothing could take that sound away. HUGS!

 

Oh and my T is in the middle of my head too. Not just in one ear!

 

I will def try melatonin, I will try almost everything that is suggested. Thanks for the idea. I wish you the best!

 

Does yours fluctuate, or is it a constant screaming/hissing sound? Mine is consistent with no change at all.

 

IT has been a constant loud hissing. I can hear it over white noise and pink noise/songs/talking etc. YOU name it I hear it. Today it is a very high pitched hiss still but not as screaming loud as it has been. I think mine might be ETD related though and I been popping my ears to try and help work out the fluid in them if there is any which may have helped a little bit.

 

I sure hope you get some relief soon! have a great day!

 

Hey GP55, stay strong. Don't have much inspiration at the moment but just know that you got all of us going through it with you. Stay strong and focus on!

 

Have you tried any sounds besides white noise? I found that no noises work well for me, except the sound of crickets. Some sound machines have many settings. But before you buy one, you could try the various sounds on YouTube. Then you could play those sounds in all of the rooms where you spend time... I realize that most likely you had already tried all of that. I am making this post, just in case.