Hi from Ireland

[cocobean]

Good Evening

I am a new member from Ireland. I am posting on behalf of my husband who has been struck down with tinnitus noises in his left ear in the past month. His gp tested his hearing this week and is experiencing significant hearing loss in that ear too.

We are looking for support, help, suggestions and help from those of you who are experiencing similarly.

Many thanks

 

[Cher69]

Welcome and I'm sure you will find the support you need on this forum. Firstly anyone with this condition needs the support of those around them as its a lonely place when no one can see the problem and you are struggling with noises that your friends and family can't hear. So you are already doing a great job helping your husband taking this first step.

At the start from what I have learnt as a newbie to T - nearly 4 months for me - most of us go though a similar pattern of feelings fears and eventually starting to adjust and pick up life again!

Sleep is the first thing to suffer so try things to help sleep masking noises herbal and relaxation ideas to keep a decent sleep pattern. Try to keep busy the more you can push T to the background the better that's hard at the start but it will happen! I fully support relaxation to try and focus the mind maybe listening to music etc

It gets better but it is bumpy road at times but I guarantee someone on here can help and answer questions suggest ideas and understand where you are on the road and offer support.

Welcome and well done you for taking this step - together you will get through these early stages! My husband has been a rock to me so your support is vital. . Cher x

 

[Karen]

Hi, Cocobean, and welcome!

I agree with Cher's comments above. Your husband is very lucky to have your caring and support during this difficult time! Just knowing that you are there to offer that support is vital to his well-being right now, and I'm sure he appreciates it.

Did your husband have any sudden change in his lifestyle or habits that might have brought this on, or did it come on gradually? Sometimes, being under stress can bring on an increase in tinnitus. Also, a recent illness could have brought it on (or made it worse), or it could be a new drug that he is taking. There are many reasons that might have caused it to occur or get worse, but the main thing now is to try to help him remain calm, and to get some rest.

Did your husband's doctor suggest hearing aids? Some people on this forum have had success with hearing aids (the kind for both hearing and masking), and it might be worth looking into to see if they might help him. In the U.S., most audiologists will offer a 30-day free trial of the hearing aids before you purchase them, to see if they will work for you.

I'm sure others on this forum will have additional suggestions for you. Please let us know what types of questions you have, and we'll do our best to answer them.

Best wishes,
Karen

 

[cocobean]

Good Evening

Thank you so much for taking the time to welcome me on board!
Yes, both myself and my husband have decided that it might be better for him if I do the research because he started to stumble across 'scary' information courtesy of Google and really he does not need the stress. I will filter the information and will pass on the helpful information to him.

Some background information:

• In April he became very busy at work. He is a Senior Software Engineer and so his project work reaches busy times as deadlines approach. During April and for most of May he was working for 14-15 hours a day in front of 2-3 computers with very noisy fans in them.
• In May, we travelled by Ferry to France ( 18 hours) and on our return journey we both experienced 'sea legs'. This was not unusual for us because we would often feel dizzy for a day or two after arriving home. My husbands didn't fully disappear and within a week he had a fairly bad dose of vertigo which responded fairly well to Serc 16. At this point I should point out that as soon as he started to feel fairly alright he completely stopped taking his medication.
• On and off since May he has felt mild dizziness but nothing that he felt warranted a visit to the gp
• Since the beginning of July he started to feel a sensitivity to noise in his left ear. Our 3 young boys are noisy and make quite a bit of noise when playing indoors. I noticed him becoming quite intolerant to their noise. I have to say I find them to be quite noisy at times too.
• July and August have brought on other worries too in that his sister has been diagnosed with Lymphoma and is currently receiving Chemo and although he admits to not being overly worried I know that he is.
• At the end of July he visited our Gps surgery but he had a locum in place as he was on holidays. She put the now ringing noises in his ear down to congestion brought on by hayfever and a possible virus. She prescribed a decongestant. These didnt make any positive difference.
• By the middle of August he noticed a notable difference in his ability to hear low sounds in his left ear and the ringing/noise in this ear had gotten worse and almost constant.
• On Monday morning last he became very distressed ( not really in keeping with his personality) because he had had an awful nights sleep with the noise. We returned to our Gp on Monday morning. He did a clinical hearing test which showed up the hearing loss in his left ear. He noticed that his ear drums are retracted. He is treating him with Steroid drops to be taken 4 times daily and then on their completion to take a spray daily too. He has also referred him for an MRI scan which he is having in a private clinic tomorrow afternoon. I was not present at his consultation on Monday but he mentioned that the gp briefly mentioned Acustic Neuroma ( he thinks this is what the go mentioned) and that the scan would more than likely rule this out as it is very rare.
• In the meantime, I am trying so hard to keep him positive. He is worried that something bad will appear on the scan. He simply cannot tolerate the sounds in our house. I am keeping the children out of his way as much as is possible but this is upsetting him quite a bit as he is feeling v guilty!
• He has had pretty miserable nights sleep this week. Last night was ok. I gave him a back massage, he took a magnesium supplement before going to bed and a nice herbal camomille tea.
• He has noticed that the noises are different at different times of the day and mornings are particularly bad.
• I have forgotten to mention that he had a long haul fight with some internal flights to China in July and again to Europe in August.

I may have omitted bits and pieces but this is a much as I can recall to date.
Any words of wisdom would be very much accepted.
Many thanks to you all for reading
CB

 

[cocobean]

MRI results came back clear this afternoon which in itself is a relief. Tomorrow we have an appointment to see an audiologist.

Has anyone here ever been prescribed Betnasol steroid for the nose?

 

[Karen]

Hi, Cocobean,

That's good news about the MRI results! Maybe the audiologist will be of help to your husband, and can make some recommendations. How is his dizziness now? Any improvement?

I haven't heard of that particular steroid, but I do know that my neurotologist put me on a short course of steroids three years ago, when my severe tinnitus first began. I think the idea was to rule out any problems related to sinus congestion, etc. It didn't cause me any harm, but it didn't help me, either.

I'll be interested to hear what the audiologist says about his condition. Thanks for the update!

 

[Karl]

cocobean-
What you describe does not fit well within the typical causes of tinnitus. You mention a lot of stress that your husband has been going through. I don't think that stress by itself can cause tinnitus. However, in your case, it almost sounds like your husband has pushed him beyond his limits. He's overloaded with a multitude of issues in his work and private life. I'm not a doctor, but I can relate to pushing beyond my limits about 10 years ago. There are only so many things one person can juggle.

To my knowledge, tinnitus can be initiated by a few causes:
1. A loud noise or physical trauma to the cochlear hairs,
2. An ototoxic drug, damaging the cochlear hairs (this is how I got tinnitus)
3. Somasensory nerves (non-auditory nerves) that are getting their signals mixed up with auditory nerves signals
4. Age related hearing loss

There can also be "real" non-auditory damage - such as a brain lesion - which doctors need to rule out....but only a small percentage of people with tinnitus have such causes. Doctors do MRI's to "CYA" (cover your ass) most of the time. If a doctor can find a "real" problem, it can usually be treated by a drug or surgery.

You and your husband will need to learn that tinnitus is a viscous cycle. Certain personality types are more prone to creating this viscous cycle than others. Most of us get some hearing loss as we get older, and some of us start hearing tinnitus noise. We each respond differently to this noise. Some people make a big deal about a little whisper of a sound in their heads, whereas others are able to cope with a much louder sound.

@Dez Dog posted a link to a very informative presentation which explains the issues of tinnitus:
http://oxfordlearning.org.uk/westberksprimarycarelearning/Presentationswb/pdf/A/L_Waite_GP talk powerpoint.pdf

My suggestion: There may be a psychological component involved. As another first step, perhaps your husband should see a psychiatrist. That's what I did when I first got tinnitus. I was given a drug called Remeron (Mirtazipan) which helps me sleep. If he can get some sleep, then he will be able to start addressing what the real issue is. Is it one of the four things mentioned above, or is it a psychological ?

Also, the more you learn about tinnitus, the less you/he will freak out. Tinnitus has been a learning process for me. Read "Tinnitus Retraining Therapy" by Jastreboff and Hazell. It goes beyond the above PowerPoint, explaining all the facets of tinnitus. In particular, it mentions how some people become overly sensitive to sound - which you say is your husband's complaint.

 

[cocobean]

Thank you for your replies. It is great to log on and see that people are supporting you.

We were with the consultant today. He examined my husband, did a few tests and asked lots of questions. He then sent hubbie for a detailed hearing test which confirmed hearing difficulties at low tones ( speech) in his left ear, right ear was perfect.

After assessing those results the consultant is considering a diagnosis of Menieres Disease. He has taken my husband off the steriod drops as he knows there is no congestion and has prescribed Serc16 x3 a day for the next 3 months until he meets with my husband again and repeats the audiology assessment.

In the meantime he suggested that salt intake is closely monitored ( we currently do not add salt to cooked food and only use a very small amount in the cooking process of pasta, rice etc..), alcohol intake is lowered ( no problem here as we rarely drink), eliminate coffee ( hubbie would like the odd coffee in the afternoons), and try your best to keep stress levels to a minimum. He feels that my husband is in the throws of a particularly bad whirl of it at the moment more than likely being exasperated by the stress of not knowing what was wrong with him.

Relaxing background music /sounds was also suggested and so my husband is downloading sounds of the ocean at the moment!!!

I'll keep ye informed of any further changes. Anyone here with Menieres Disease?

 

[Karl]

I recall that gary has Menieres Disease. @gary ....?

Tinnitus at low frequencies is unusual. High pitches are the first to go bad.

 

[gary]

Thank you for your replies. It is great to log on and see that people are supporting you.

We were with the consultant today. He examined my husband, did a few tests and asked lots of questions. He then sent hubbie for a detailed hearing test which confirmed hearing difficulties at low tones ( speech) in his left ear, right ear was perfect.

After assessing those results the consultant is considering a diagnosis of Menieres Disease. He has taken my husband off the steriod drops as he knows there is no congestion and has prescribed Serc16 x3 a day for the next 3 months until he meets with my husband again and repeats the audiology assessment.

In the meantime he suggested that salt intake is closely monitored ( we currently do not add salt to cooked food and only use a very small amount in the cooking process of pasta, rice etc..), alcohol intake is lowered ( no problem here as we rarely drink), eliminate coffee ( hubbie would like the odd coffee in the afternoons), and try your best to keep stress levels to a minimum. He feels that my husband is in the throws of a particularly bad whirl of it at the moment more than likely being exasperated by the stress of not knowing what was wrong with him.

Relaxing background music /sounds was also suggested and so my husband is downloading sounds of the ocean at the moment!!!

I'll keep ye informed of any further changes. Anyone here with Menieres Disease?

Hi, I just your post & Karls, my ENT has told me the most likely cause of my T is Menieres Disease. He did a test for it and my good non-T left ear is a 9 my right ear is 39 according to a ECOG test. This tests the pressure being exerted from inside the ear. Clinically you have to be at 50 on a ECOG to be considered having Menieres Disease, but he said there is such a big difference he is convinced that is my problem.

I went to a ear doctor that does cochlea surgery and he differed from my ENT. I believe my ENT is correct. He said as long as there is such a big difference in pressure between each ear he stands by his diagnosis.

I did get a hearing aid with a masker, it does help some what.

In my case I rarely get dizzy or nausea, that's why the one Dr. ruled out Menieres Disease. My ENT said I can have Menieres Disease without the dizzy or nausea feeling.

ENT put me on Valium & a low sodium diet. To much sodium in the ear tells the body, hey I need water, when the water gets there it causes the pressure to build up in two sacks in the inner ear causing the T.

ENT told me I would have to get my right ear down to at least 9 on an ECOG test before I would see a difference.
That's it in a nut shell. pressure has gone down to the low 30's as of three weeks ago, so I have a way's to go.

When I say ECOg is a pressure test, it does not measure the pressure directly, but through a rather complex system which I can't really explain here. here is a link that may give you more insight.

http://www.dizziness-and-balance.com/testing/ecog.html

The best thing you can do for him is to understand that this can be really tough in the early stages. I used to yell at my wife for no reason, well actually because the noise was making me very edgy, still does but I have learned to deal with it.

Hope this helps, I will pray for you both.....

 

[cocobean]

Thanks to everyone once again for your replies.

Gary, I am working hard on understanding his situation. He is at his most fragile state at the moment but, thankfully last night he had a good sleep...woke up once or twice but managed to fall asleep very quickly with out the aid of masking music/sounds. Today he was more positive and attempted to do some work in his home office. I think that his stress levels and anxiety of not really knowing this time last week what we were dealing with was causing him dreadful fear.

Tomorrow I am bailing out and taking our 3 boys to visit relatives for the day to give him a restful day without responsibilities. He is considering returning to his Kenpo Club for a few warm up exercises. Gently gently I remind him! I know that with his long walks these days and his eagerness to try to return to some form of reality can only be a positive thing for him.

We are considering some acupuncture with a lady who deals with tinnitus sufferers. Has anyone ever tried this?

Wishing you all a safe and happy weekend. I thought Friday would never come!

CB

 

[Sherri786]

Thanks to everyone once again for your replies.

Gary, I am working hard on understanding his situation. He is at his most fragile state at the moment but, thankfully last night he had a good sleep...woke up once or twice but managed to fall asleep very quickly with out the aid of masking music/sounds. Today he was more positive and attempted to do some work in his home office. I think that his stress levels and anxiety of not really knowing this time last week what we were dealing with was causing him dreadful fear.

Tomorrow I am bailing out and taking our 3 boys to visit relatives for the day to give him a restful day without responsibilities. He is considering returning to his Kenpo Club for a few warm up exercises. Gently gently I remind him! I know that with his long walks these days and his eagerness to try to return to some form of reality can only be a positive thing for him.

We are considering some acupuncture with a lady who deals with tinnitus sufferers. Has anyone ever tried this?

Wishing you all a safe and happy weekend. I thought Friday would never come!

CB

I've tried acupuncture, didnt do anything for the T , but during the session I would relax and fall asleep.

 

[Karen]

I've tried acupuncture, too. For me, the tinnitus stayed the same (no change), but it was soothing and calming. It might be worthwhile just for that alone. Since he has Meniere's, it might help with his balance, etc.

Best wishes,
Karen

 

[cocobean]

The relaxation element would be beneficial. Regarding the dizziness...thankfully he hasnt had a 'attack' since May. He 'just' has tinnitus at the moment

 

[McGee]

Hi Coco, I think it's absolutely wonderful the support you are giving your husband I am fairly new to this (3 months in) and still in the throws of anxiety myself so I can't really offer up too much but I hope what little I can offer helps.

This part is more for you actually. When I first got T I was thrown into an abyss of absolute panic and doomsday thinking (I suppose I'm still there right now, but I'm working on it ), everything was a hopeless dead end in my mind "How will I live like this" "My life will never be the same" "No-one understands" etc. I became extremely volatile and prone to outbursts of anger one minute and desperate sobbing and begging the next and and my poor poor boyfriend copped the brunt of this. I would always profusely apologize and he always reassures me that there is no need and he's fine but I can see that this is extremely stressful and upsetting for him. I'm a little better now but I still have my moments. Take some time for yourself whenever you need a break, this is stressful for you too! It's hard watching a loved one's world fall apart and in a way your own too. I can say from my own heart that I never mean to snap at my boyfriend or upset him and stress him out but sometimes I just can't control the reaction I have to the T and the fear it brings me and I'm sure that this is the same with your hubby if he gets cranky or snaps etc.

Sleep is so so important in the early stages, I remember my first month in and I was sometimes not sleeping for periods of 40+ hours then only sleeping for 3 or 4, it just wrecked me and gave me no energy to even attempt to get better. Trying to and being unable to sleep became a stressful and negative time and I started to associate the bedroom with negative feelings and would become anxious when I knew it was nearing time to hop into bed. I worked through this by sleeping on the couch for a few nights with the tv on (my boyfriend dragged a mattress out so I wasn't alone). I reminded myself that I was on the couch and I didn't have to sleep if I didn't feel I could, the TV was right there and I could watch a movie. Eventually I started to doze off while doing this and that got my pattern somewhat back to normal. I did this for as long as I needed and I don't see the bedroom and bed as a threat anymore.

I don't have Meneire's as far as I know but I also cut out sodium in my diet as I have read that it can, in some reduce the T. My audiologist also suggested I do this. I had no idea how many foods had such high sodium content. I limit or have completely eliminated things like gravy's, pre-packaged dinners and soups and sauces and like you don't add any addition salt. (Ugh everything is so plain now!! )

I think the acupuncture is a great idea, I've also been considering this myself and have also toyed with the idea of hypnosis. Now if I could just get myself out of the house. Tomorrow I say, I will be OK to leave the house tomorrow... sheesh!

Hyperacusis is a dreadful thing. He needn't feel guilty about being a bit intolerable around the kids. I thought dishes clanging together were bad until a friend bought her 3 year old over, dear god was I happy to see the back end of that kid! I've been heeding the advice I've read in various places and subjecting myself to as much everyday environmental noise as I can tolerate and it does seem to be helping...even if just little by little, but every bit counts.

When things get really bad and the noise is just too much I go and hide away in the shower for a little while, (I've actually considered buying a plastic seat for it). It's the only thing that completely masks the T and gives me a bit of peace and some time to try and rationalize my incoherent panic stricken thinking. My boyfriend tries to keep my mind and thoughts occupied by asking me questions that need more than a yes or no answer like "So what should we do with the garden this spring" or "What did you think about this or that" etc. It seems kinda trivial but I'm amazed by how often I get distracted by this. Does your husband like game shows or crossword puzzles? These are a great distraction. Computer games or the Xbox etc are good too if he's into that sort of thing.

I hope this was helpful and I think it's fantastic that he wants to get back out and doing things, what a champ!!! I think you are also just amazing Coco, what a wonderful support system your hubby has to lean on. I wish you both the best of luck and I will be following your story, I'm sure you will come out smiling! xxx

 

[cocobean]

Mc Gee, you are very kind to reply. I am a 'fix it' type of person. I suppose, Like most people, I don't like to see loved ones upset and in pain. It was/is better for me to research on his behalf. That way the negativity associated with the condition can be filtered to a sensible level. My husband did begin to read up on dietary changes but kept stumbling upon negative findings which in the whole scheme of things were not doing his moral any good what so ever!

My husband has had a 'good' week. He is walking 7-9 kms daily and loves this. Yesterday, he returned to his Kenpo club to have a chat with them and to gently ease himself into practice again. He had an air of achievement about him yesterday evening. He did very well.
During the week he bought some new headphones and has downloaded nice relaxing sounds. The one positive thing about night times is that he goes to bed once he feels tired, has a read for a few minutes while listening to his downloads, and then takes them off once he feels like he is about to sleep. In comparison to last week, he is finding it easier to get back to sleep without aids when he wakens at night.
We have lavander oil in the room which is meant to help with relaxation.

You might find this link useful...the breathing exercises I find very useful myself.

http://www.deafnessresearch.org.uk/...ion/what-can-help-me-get-a-good-nights-sleep/

I came across a 'shower sound' online this week which was incredibly relaxing. It is on a loop and so will play for hours....this way you dont have to get wet and wrinkly in the shower!!! I'll try to find the link for you.

In the meantime. Its well past breakfast time here in Ireland, so, I need to feed my crew before they get cranky!

Thank you all for the support, it really is important to be in contact with others who understand.

Take Care
Cocob

 

[cocobean]

Good Evening

It has been a while since I posted about my husband's tinnitus etc... and so tonight I thought I would attach an update on how things have been.

In late August we set of on our journey of trying to find out what was wrong with him. He had significant hearing loss in his left ear as well as tinnitus on the same side. Eventually after meeting with a consultant who deals with these things he was in fact diagnosed with Meniere's Disease. We were advised to take a look at diet and to minimise salt in take, alcohol intake, caffeine intake and stress!!! We have taken all of those elements into consideration and on the few occasions where some convenience food was consumed ( shop bought pizza for example) my husband certainly felt that his tinnitus was much much louder the following morning.

In December we returned for a follow up meeting with his consultant. He had another hearing test done to check for changes and we were absolutely thrilled to find out ( although he had been a bit suspicious) that his hearing had returned to perfect levels. It has been suggested that he stops taking the Serc 16 while things are good but to keep them to hand as well as Stemetil. Since Christmas he has not taken either medications and just returned from a Long Haul trip to India without any dizzy episodes ( one of our concerns with flying).

So, things have improved. The tinnitus is still there but most days he can 'ignore' it. I hope our update can give hope to other sufferers. We are aware that things can change very quickly but for the moment my husband is enjoying some respite from full blown Menieres.

Kind Regards to you all

CB

 

[Karen]

Cocobean,
Thank you for the update!! I'm so glad to hear that your husband's condition has improved, and that he was able to make that trip without experiencing dizziness.

Great news, and I hope he continues to make progress! It's wonderful to have an actual diagnosis, because now at least you know what to do and how to manage his diet.

Best wishes,
Karen

 

[Greg Clarke]

Hi Cocobean, I'm also based in Ireland and will be looking to go the route of a consultant in the near future, any chance if you were happy with the consultant you could pass on the details via private message? Thanks!!

 

[MichaelM]

Anyone here with Menieres Disease?

hi there, Meniere´s Disease here, unfortunately.
We have been writing about in in here.
a Long ang lonely battle ahead for many of us with MD. Let´s keep things going together.