New — Questions, Questions

[Candy]

Hello all, I've had tinnitus coming up to three months. Was too busy having a breakdown to post.

Live in London, am 41. Tinnitus has been a major curve ball for me, it has stricken me at a very unfortunate time in my life where I had finally returned to work (only signed contract a few months ago) after being a full time mum for several years. I have two young kids, a job, a pretty busy schedule. On top of that need to and want to be a happy and strong mummy for the kids, which is what they deserve.

I have been off work, on sick leave, since June when my world as I new it came to a stop. Usually solution orientated find myself lost.

Still missing MRI, have had audiogram and tympanography. Hearing fine. Reason for T (seems one sided) unclear, there are a few "leads" that I am following.

Planning to return to work in one week, it is now time. Let's see how much I'll be able to concentrate. Have been given wearable maskers by the NHS, providing me with a crutch at least.

Questions:
1. Why in 2016 is there such little awareness of tinnitus given the stats are supposedly 1 in 10?
2. Is the whole BTA 1 in 10 campaign diluting the message, given that the reality is that there is mild tinnitus and tinnitus?
3. What advocacy and campaigning on a large scale is anyone aware of? What are we going to do about it?
4. Why is the UK government not funding research?
5. Are there any governments that are?
6. Am 101 doesn't seem promising - can someone explain to me given my lack of scientific background why like in the case of pain receptors there can't be a pill to numb the oversensitive neurones?
7. The condition can be debilitating per se'. On top of that fear of worsening symptoms, which is by no means irrational, looms over the sufferer. Young kids left to deal with this on their own. This is simply not acceptable. How can we raise more awareness of the lack of support people are getting?

@Lgunal I hear u, darling. Keep strong, try the new job before giving up. Brain will hopefully adapt to situation xxx

 

[Andrea White]

Hi Candy, I developed T last November - had the same reaction as you, I couldn't see me ever being happy again. Since then, I have learned -

1. There are some things that can help lessen the perception of the T noise - depends on what is causing it and there could be several different reasons, mostly it is because there is some hearing loss, but if you can find out what is most probably the cause, that will point you in the right direction. I can let you have a summary of my researches into what has helped some other people to be more at ease with it and push it into the background. There are supplements, drugs and off-label drugs (drugs developed for other purposes but found to help with T)

2. Over time, you can habituate to the sound ( a bit like living near a busy railway line where, after a while, you forget to hear the sound of a noisy train rushing by at full tilt!

3. My work, hobbies, activities have all helped me to forget about the T - so don't give up on anything you do. Personally, I sing in a couple of choirs, play bridge and I paint - they all take the attention away from the T noise and this helps a lot. The very best thing I've found is to relate to others and concentrate on them - again this takes your attention away from the T noise. I deliberately make a lot more time for friends and loved ones and never turn down any opportunity to be with them.

4. At the beginning of my T I went to see a Hypnotherapist who took me through Mindfulness. Again its another way of focusing your mind on the present moment and not worrying about the future. It really did help me in the first three months to get over the terrible shock of it.

5. Today, I still have T, but I'm not frightened of it any more. I have looked at all the latest research and I am heartened to see that although there is no cure, some people have found ways and means of making it bearable.

6. My T has been caused by a small hearing loss in the upper registers of my hearing. I have been given (via the good old NHS) some small and discreet hearing aids programmed to replace the missing tones and they are absolutely brilliant - I can forget all about Tinnitus when I am wearing them. Sometimes I walk around with an MP3 tuned into Radio 4 and that's a nice change and again cannot hear my T.

6. Having said all of that, I am starting a course of rTMS (repeat Transcranial Magnetic Stimulation) next week. This is designed to calm down overexcited neuronal activity in three separate parts of the brain, which is now believed to create the T sounds. This approach has approval from the US FDA for this purpose and has a good chance of turning down the volume. We'll wait and see.

7. Sometimes just treating the depression that T brings is very helpful - won't cure T but makes you feel good anyway. Be very careful about anti-depressants, some of them can actually make T worse. Talk to your doctor about it as the SSRI drugs made my T worse.

I hope this helps Cindy. Don't know why more hasn't been done to help generally. There are a number of Clinical trials going on (AM101 most notably) which you might want to take part in? Take a look at PubMed on Google using Tinnitus in the search - you'll find lots of info on the results of clinical trials and researches.

 

[Candy]

Thank u so much Andrea for you detailed reply. Forgot to mention am doing CBT which helps with the anxiety - cause of T leaves me baffled as no hearing loss. Do have TMJ issues but not particularly when T started. Will leave no stone unturned, however may never know.
rTms sounds very interesting, will look it up. Where will you be getting this?

Many thanks

 

[Aaron123]

This is designed to calm down overexcited neuronal activity in three separate parts of the brain, which is now believed to create the T sounds. This approach has approval from the US FDA for this purpose and has a good chance of turning down the volume.

As far as I know, rTMS has only been approved by the FDA for treatment resistent depression. Could your provide a link to information about its approval for calming "down oversized neuronal activity"?

I just saw an earlier post of yours where you mention rTMS:

I am going to start a course of rTMS in late August - this has a fairly good chance of making a positive difference - its non-invasive, with no side effects.

Could you share your research that leads you to the conclusion that rTMS has a fairly good chance for improvement? Also, pretty much every treatment has the possibility of side effects though the more common side effects of rTMS appear to be mild.

 

[Andrea White]

Thanks Cindy and Aaron

Aaron, I do have clinical evidence for rTMS efficacy - see PubMed Neuro Endocrinol Lett 2010;31(2):238-49 I have also seen it in writing that the FDA have approved it for both Depression and Tinnitus. I am going to receive this treatment from a private Hospital in Hove, UK. It is also available from Private Psychiatric Consultancy in Harley Street, London.

I will certainly report back on findings, it will be three times a week for at least 3 weeks, possibly 4. Apparently, whatever the outcomes, it makes you feel very happy!!

Wish me luck!

 

[Candy]

Keep us posted, a dose of happiness wouldn't be such a bad side effect...

 

[Horizon]

Have you had an MRI done of your TMJ? My tinnitus improved a lot with TMJ treatment.

 

[Candy]

@Horizon Waiting to see the consultant in September, then will get a referral for MRI. What was your TMJ issue? Did the MRI make it visible? What type of treatment are you getting? Thanks...

 

[Horizon]

I didn't know I had a TMJ issue, all I knew was I had tinnitus, headaches, dizziness and something in my ears. I thought the tinnitus was the cause of the headaches and dizziness as I noticed it first.

The first MRI scan done via ENT was normal. ENT Dr said he would see from the scan if my jaw was causing my problems. He was wrong. Two weeks later on the advice of a chiropractor I went to an orthodontist who sent me for an MRI scan at the London Imaging Centre. It showed the discs had slipped out and the bones were wearing down. For this scan I had to open and close my mouth, for the first one I didn't move. Make sure you get the right scan done.

I was given a splint which stops the jaw from fully closing. For most people this is all that is needed but because of the position of the discs I was referred to a maxiofacial surgeon. If you want to know more let me know.

You could try keeping your mouth open. Before the splint was made I was told if I kept my mouth open my symptoms would go away. I slept with socks in my mouth to keep it open at night and ate soft foods. Things began to improve. I also find that not moving my jaw helps.

If your tinnitus is not caused by your TMJ many people on this forum have been helped by other things. The main thing is to try and relax.

 

[Candy]

@ Horizon thanks will bare the Imaging Centre in mind. Had a splint 20 years ago, since then not needed it. Will look into it again. My plan so far:
- maxillofacial
- scan
- possible splint

Are u doing anything else for the discs? Thanks. Where was your dentist in London?

 

[Horizon]

@Candy good plan. Orthodontist is in Wimpole St. Maxiofacial operated on me 8 weeks ago to put the discs ( menisci ) back where they should be and anchored them with little hooks so they won't slip out again. Still wearing the splint to take the pressure off the joint. The Orthodontist and the maxiofacial surgeon he referred me to have been excellent. Before the first visit to the orthodontist I was desperate, the tinnitus was extremely loud. Now it is much, much quieter and I am fairly confident that it will fade away eventually, if it doesn't I can happily live with it as it is today. The volume does fluctuate so I am not 100% sure at this stage but on the whole it's definitely heading in the right direction. If you find you have problems with your TMJ it could be your way out of the situation you are in now. Good luck.