Tinnitus Since Birth

[Superunknown]

Hi I'm 27 and from the UK.

I'm profoundly deaf but I can hear about 80% with a cochlear implant.

Basically I was born deaf and I've suffered from tinnitus in both ears all my life. I don't even know what silence is. It must be an amazing thing to have silence.

My earliest memories is me trying to sleep and all I could hear (still can) is the sensation of people talking, shouting, whirring, screaming, beeping, scratching all through the night.

Fast forward to 2013. I'd worn hearing aids up to that point but it was determined they weren't helping me enough and so I decided to take the plunge and get a cochlear implant on my left ear. I was also told it would more than likely help my tinnitus (doctors said most patients report that their tinnitus disappeared after having the procedure).

I have to say it's helped me alot in regards to my hearing. I don't get tinnitus when I'm wearing it and although it's not perfect...speech is much easier to understand.

However...it seems to have made my tinnitus worse, particularly the implanted ear. I don't know if it's a coincidence or if it's a direct result of having the operation. When my implant is switched off ( I have it off at night), it's absolutely horrific. All I can hear is a high pitched whirring. This high pitched whirring is made even louder when I sit up or when I finish exercising. It's so loud it makes me dizzy. I lift weights every night at the gym. As soon as I finish an exercise...I put the weights down. Then suddenly....I can hear the tinnitus get louder. It intensifies so much I feel like I'm going to blank out. After about 2 minutes it dissipates to the normal level of tinnitus...until the next time I finish exercising.

It's keeping me awake at night and it's severely affecting the quality of my life. I'm having permanent headaches. I'm always feeling exhausted and stressed out because of it. I feel like an old man at the age of 27. I'm constantly looking haggard and I feel like I'm running on fumes.

I've been to the GP and the implant team and they aren't much help. My GP says there isn't much they can do and the implant team don't want to know. They say it shouldn't be happening.

I don't smoke, I don't take drugs, I drink alcohol every 2 weeks.

Has anyone experienced anything like this?

 

[Superunknown]

Hi Is anyone able to give me advice?

Thank you.

 

[Michael Leigh]

@Superunknown

I am sorry to know you are having a lot of difficulty with tinnitus at the moment. I haven't got a cochlear implant so can't help much on this. However, I would advise that you ease up a little on the exercising and lifting weights. In the passed I experienced an increase in my tinnitus after doing strenuous exercise. I used a total gym and had to stop because the tinnitus was so severe but had no problems using a crosstrainer/elliptical machine.

I have spoken to numerous people that have noticed an increase in their tinnitus when running, either on a treadmill or on ground. It seems the impact from underfoot travels up through the body to the auditory system and causes problems.

Everyone is different, so I'm sure there will be people that won't be affected by the exercises mentioned above. It's just a suggestion that you might consider trying.
I hope your situation improves.

All the best
Michael

 

[Dana]

Your post made me so sad that you had/ have to go through so much suffering since birth, having absolutely zero guilt. So unfair. Still under the impression of you posts. Very disturbing.
I can relate to one part of your post

I'm constantly looking haggard and I feel like I'm running on fumes.

I will think of you from time to time and send you a positive thought to be strong and get better.

I agree with Michael Leigh to ease up on exercising. Actually to change the type of exercising with something else that also keeps your body lean. I don't know...yoga, stretching, elliptical machine, swimming (is making wonders for me and not only me re T, it decreases it) I am sure there are many other types of physical exercise that don't do to your cardiovascular system, therefore to your inner ear circulation, what strenuous exercising like lifting weights does (a serious variation in pressure in a very short time)

My T gets worse just from carrying a heavy bag from the grocery store or doing a little effort, so I can't even imagine going to lift weights in a gym.

I have spoken to numerous people that have noticed an increase in their tinnitus when running, either on a treadmill or on ground. It seems the impact from underfoot travels up through the body to the auditory system and causes problems.

Same thing happens to me.


For people with T, like us, inner ear fluids circulation is not maintained at steady levels regardless of what we do/eat, those mechanisms that are supposed to keep levels constant are damaged or lost, so why put your inner ear through a variation in fluid circulations with consequences on your T levels?

I would recommend swimming instead.

Why do you think you were born deaf?
Your mother took ototoxic meds during pregnancy without realising the danger?

My heart goes out to you.

 

[Superunknown]

Hi thank you very much for your thoughts and replies.

I was born deaf due to genetics and my parents are hearing. One of those things I guess.

I have to say that lifting weights and exercising at the gym is one habit I can't quit. It helps me forget about the problems of life. Even simply standing up or excessively yawning causes it. I work in an office so I'm at the desk for fairly long periods of time. When I stand up...I can hear the tinnitus rise...it intensifies so much I need to put my hand on the desk to stop myself from falling backwards. It then goes down to normal tinnitus levels after about 2 minutes.

 

[Dana]

Even simply standing up or excessively yawning causes it. I work in an office so I'm at the desk for fairly long periods of time. When I stand up...I can hear the tinnitus rise...it intensifies so much I need to put my hand on the desk to stop myself from falling backwards. It then goes down to normal tinnitus levels after about 2 minutes.

It's clear, you are ultra sensitive to changes in blood circulation.
If you say that exercising in the gym and also lifting weights are habits you can't give up on, I understand. It is a known fact that exercising is addictive as it produces those "feel good" hormones, that's what it is.

I would only want you to keep you mind open that ANY type of exercising produces those "feel good" hormones, not only high impact types, and maybe switching to a more "fluid" kind of exercising is better for your cardiovascular system and inner ear circulation.
Swimming is also making us feel good and forget about our life problems, you know.
I don't want to pester you though. Do what you want. You suffer too much to be pestered by anybody.

 

[Superunknown]

Hi another thing I've noticed is that it tends to get much louder when I yawn or when I stretch my arms/move my shoulders.

Is this common? I'm used to the normal levels of tinnitus but the loud flare ups are rather annoying.

 

[Dana]

@Superunknown
Put you finger behind your ear, where the sternocleidomasoid muscle is inserted on the mastoid process (bone)
Do what increase your T :yawning/stretch arms/ shoulders and observe whether the SCM muscle gets contracts or not.
It may get contracted while you make those moves.
Contracting SCM increases the T for many people with T and it's called "somatic tinnitus", or, in layman terms, "muscular T".
SCM =a thick muscle on each side of the neck, the action of which assists in bending the head and neck forward and sideways.

 

[Superunknown]

Thank you for your reply. I'm afraid it hasn't made much of a difference. It gets worse if I sit up, move, exercise or if I'm really tired. My normal level of tinnitus is around a 6/10...just a constant high pitch whirring. I've taught myself to ignore it. Then if I move...it suddenly escalates in waves...and goes up to a 10/10 which is very disorientating.

Are there any people on here who was born deaf and suffers from tinnitus?

 

[Dana]

Are there any people on here who was born deaf and suffers from tinnitus?

Not, from what I know, there aren't.
I suggest you to begin a thread in the Support forum, and ask there this question. The people who are willing and able to help you with their advices/knowledge will find there easier your thread and will answer you.
I wish you to get many helpful replies.
Good luck!

PS The great majority of people here get worse after they exercise or when they get tired. With sitting up the situation may be different. In my case if I stand T gets better and laying down makes it worse.
I can understand how T can get worse when laying down (the head pressure increases) but not how it can get worse when getting up.