Any Help / Advice / Thoughts Gratefully Appreciated

[brentmeister]

I have been deaf in my right ear since childhood following Meningitis and am now aged 27.

Partial deafness hasn't really impacted me that much as I have had good hearing in my left ear and always tried to position myself to allow myself to hear ok. Obviously those who spend a lot of time with me eventually notice that I don't have perfect hearing but it has never impacted me at work or in social situations.

However, at the start of March I picked up a pretty uneventful cold. The cold itself cleared after a week or so but about 3 or 4 days into it I woke with a loud ringing and reduced hearing, plus a feeling of fullness and some popping / crackling in my ears.

As I have had always had quite waxy ears I was sure it was impacted earwax so sought to take drops to clear this. However, after all wax has cleared the problems have remained. Sometimes the ringing is very severe but my actual hearing not too bad, other times the ringing reduced but my hearing worsened. There doesn't seem to be much of a relationship between the tinnitus levels and my hearing. Even when my hearing is having a "better day" though it is still significantly worse than usual and is impacting my life, both at work and home.

A telephone referral resulted in me being told I had glue ear and subsequently through research of my own I thought I must have ETD. I have tried weeks' worth of decongestant tablets, as well as using nasal sprays and repeatedly performing the Valsalva manoeuvre (I seem to be able to pop my ears fine but it doesn't seem to do anything other than causing either a temporary crackling, squelching or changing in tone of ringing).

After 3 months I finally managed to see ENT who also prescribed a hearing test. The test showed my hearing levels were indeed quite a lot below what is normal. All the ENT did though is check my ear canal and say he had no idea what had caused it. He then referred me to an audiologist to see if a hearing aid would help and also referred me for a MRI. In terms of the scan though, he said he is sure it won't show anything, which leads me to think "well what then? all avenues exhausted?" I mentioned glue ear and ETD and he just frowned and said he didn't think it was that, so presumably if there is fluid in my ear that won't show up on the MRI.

I am still a few weeks away from both the audiologist and the MRI appointments and generally at a loss really - I have currently contracted Hand, Foot and Mouth Disease and both my tinnitus and my hearing are worse than ever.

Sorry to have rambled on, but if anybody has any thoughts I would love to hear what other people think.

 

[billie48]

Welcome brentmeister to TT. Well, ENTs are usually not very helpful for tinnitus. The thing you have to depend on them is to make sure there are no problem inside your ears and Eustachian Tube, such as the condition of the ear drums, wax buildup, or inflammation etc. If there are medical issues, then they can deal with it. You hearing loss may be what caused your tinnitus. I have hearing loss in the high frequency, so I have ultra high pitch T. It was hard to take on this alien high pitch ringing at first, but over time, the body just gets used to it. So you need to be patient to learn to accept its presence. It may fade in intensity as is the case for most people after the initial struggle. For the MRI, make sure you bring some ear plugs or ear muffs if they don't provide it. That scan can be loud. So protect your ears from that. Hopefully the audiology you are seeing has some experience on helping tinnitus patient.

Since you are partially deaf and have loud ringing, I recommend you reading the uplifting story of lovely Zoe Cartwright who was completely deaf at young 15. She said she has unmaskable T due to total deafness and it is loud. Somehow bless her and her amazing positive spirit, she decides to accept her condition and move on to pursue her goals in life. She even made it to university and made a short tinnitus film. I posted about her story in great detail on the Positivity Thread of the main Support Forum. It is sticky near the top in that forum. Read page 14 (post# 420) and page 15 (# 423) and you will meet Zoe Cartwright. Hopefully her story will inspire you in your struggle with T. T and deafness doesn't stop Zoe. It is how you react that determines the quality of life.
Here is post # 420 on Zoe's story and film: The Positivity Thread
Here is post # 423 on how Zoe views her life with unmaskable T: The Positivity Thread

Also, remember T being a new condition, you may be worried and stressed with it, perhaps even depressed and having trouble sleeping. It will get better. Try read the success story to give yourself some hope. I suffered a lot initially from both loud T and severe hyperacusis a few years back. I am back to living a normal, happy, productive and enjoyable life like others who post their success stories. So have confidence that you can get better. If you need masking to help, consider the masking sounds from TT as in this thread. It comes with nice tips for new sufferers too. Good luck and God bless you.

https://www.tinnitustalk.com/panic/

 

[Peter_Murry]

It's so uplifting to read a positive few words on one persons experience with T. I really need it right now..

On average, how long does it take someone with T to get used to it?

I've only had my T for approx 8 days! I can't imagine (at this point) how I'll ever get used to the noise?

 

[uae96]

It's so uplifting to read a positive few words on one persons experience with T. I really need it right now..

On average, how long does it take someone with T to get used to it?

I've only had my T for approx 8 days! I can't imagine (at this point) how I'll ever get used to the noise?

I was thinking the same in my 8th day THINGS will get better you will eventually not stress about it when u hear it later on

 

[Peter_Murry]

Many thanks for your kind words. I don't know what to do as I seem to have two different ENTs totally stumped with my condition.

 

[billie48]

Hi @Peter_Murry, if you read enough posts on TT you will know that your experience with your ENTs is just the norm - they don't have a clue how to treat T. It was not part of their training in medical school, and currently there is no effective licensed drugs to treat T. So most MDs and ENTs are without any tools to treat you if your T is not caused by a medical issue of the body or the ears. My ENT told me, while seeing me clearly desperate and panicky, that the only way to stop my T is to shoot me. So count yourself lucky that your ENTs didn't say anything that nasty. LOL.

The best way to help yourself as a new T person is to get educated on T (by asking questions and reading up), and to learn how to get better. This later part is best served by reading up as many success stories as possible. It is not exact science on how long to get used to T. It depends on your mental stamina, character, temperament, background & life's experience, as well as how loud or strange your T is. But if you read enough success stories, you will gradually have an idea the general time frame, from a few months to a few years. Don't rule out your T will fade or disappear as a new T. Also don't rule out that things can help, like taking supplements (such as NAC, Magnesium, B12, D3 etc), like changing diet (cutting down on coffee, alcohol, MSG, salt, sugar, eating healthily etc.), changing to healthier life style, doing exercises, enjoying hobbies etc., etc. Finally, do give it time. Things will improve. Your perception of T will likely change too. Be patient and stay positive. Read up the Positivity Thread to help you stay positive. Take care.