Tinnitus, My Story...

Hi my name is Barb but that name was taken so my handle is Zita.

In April I fell on tarmac onto my face, my hands and arms went on holiday and didn't help me at all! I managed to split my lip, make myself partially blind in one eye with a bleed behind the retina and almost a month to the day I had sudden onset of screaming Tinnitus.

I spent the first two weeks totally panicked, rocking in bed, smacking myself round the head with a hair brush, crying and trying to think of ways to kill myself but being just too scared to die yet not wanting to live!

My poor husband was beside himself and I think it was his upset that made me take stock and investigate what I could do....

Went to GP who was kind and said he would try to help (because he also has Tinnitus, he said his is stress related) gave me Betahistine which did nothing. Went back to GP after doing extensive reading on every Tinnitus site I could find to ask for blood tests and a scan and an MRI, he gave me blood tests (all normal) gave me a ct scan (only from top of my head to jaw though, not the neck) all normal, still waiting for an MRI unfortunately we are low priority and the wait could be 18 weeks!

I had to find some answers, feeling desperate and just waiting all the time, we paid for me to go to an Audiologist at Nuffield Tinnitus Clinic (£200) who also suffered from Tinnitus, she said I had lost a little of my high pitched hearing which was normal for my age, I am old! she felt that my Tinnitus was a bit early and had not settled and couldn't offer me any other form of treatment until I had suffered for three months!
She did give me some pointers.......

Buy a pure tone box and don't listen to silence.

Mask wearing a headband with Bluetooth (not earphones in your ear).

Do not cat nap (I learned the hard way that a little nap can give me 24 hours of crippling Tinnitus).

Sleep on your back with a low pillow.

She told me I had somatosensory tinnitus, chewing food, having to stand up or lie flat (no sitting) moving my jaw, sticking my tongue out any of these things just made the noise louder to the point my head vibrates!
It doesn't help that I grind my teeth so mornings my tinnitus is worse!

She measured my tinnitus at 5000mh on a good day and can only assume I am around 12000mh on a bad!

Next I went to my dentist who said my jaw was a little out and gave me an excercise to even it up, I do these daily and it has helped with chewing food if nothing else. (he didn't charge me bless him). I couldn't wear a device to stop me grinding I would just spend the whole night gagging so that's a no no!

Next I went to a cranial osteopathy who said my back, neck and shoulders were solid, the cranial massage was good and I could actually feel my ears filling and my head crackling and then....she yanked my neck so hard I spent two days crying and rocking (which of course made the noise worse)! That cost me £35

My ENT appointment came through, what a dick! Nothing wrong with your nose, (large probe stuck up both sinus) you do have sinus disease but no infection, steam and blow up balloons to keep them open and clean and your throat is fine. He understood that I could be depressed (did he have a clue?, angry was nearer the mark! ) and that Tinnitus could be annoying (I think he meant crippling) he had no understanding of what it is like and I am surprised we weren't all on roller skates to get us out of his office quicker! The final outcome was he would recommend me to the Tinnitus clinic, still not heard a thing! Oh and my hearing wasn't bad enough for any hearing aids so off you trot, no treatment necessary!

So what now, waiting for an MRI, waiting for Tinnitus Clinic, I decided I could do more, so started reading research papers and one Doctor in Sweden said that an excercise called Qi Gong seemed to stretch out muscles in the upper back, neck and head (Lee Holden is my choice of tutor) so went on Utube to have a nosy and I can only tell you that it has saved my sanity. I excercise half hour in the morning and night, I do it on my own and really try hard to do it properly..... Today is medium to bad, 5/10 but the last two days I have got the volume down to 1/10 and though I seem to get deafer as my ears fill it is more manageable that 12000mh in your head!

I have tried a TENS machine, but a bit scared of where to put the stickers so that's on hold for the moment.

I think that I am less panicked by it, more in control of my emotions. I firmly believe that Tinnitus is a symptom of damage not illness but nobody understands what that damage is let's hope that one day they will find a reason and we will all benefit. I have tried food and drink changes and nothing seems to help or hinder, the only really bad habit is I smoke (I had cut down from 25 to 10 a day, but right now you can forget that!). I also have a small glass of red wine with my evening meal.

We are not financially well off but the restrictions the NHS is under makes it very hard for us sufferers, so I have asked that when I have my MRI can I have the actual scan, so that I can take it to a Maxillofacial or a Muscularskeletal specialist (which we will have to pay for) to rule out a medical reason for my Tinnitus, which I think we all deserve, if there is no medical reason then I will handle that when I am told.

That just about does it, I hope I haven't bored you all to death and that by telling my story we are all in one form or another In the same boat. Let's hope the wonderful doctors and researchers who are trying to help us succeed!

 

Welcome to the forum

Lots of kind people here that have tinnitus and they are here to give support 24-7....

Take care

 

HI @Zita/Barb

Welcome to the forum.

You are new to tinnitus and like most people will probably find the intrusion quite annoying and you will want to get rid of it as soon as possible. This is quite normal but I advise you to take things slow and if I were you, not spend anymore money on private hospital treatment for this condition. In the UK, you will get the best help and long term aftercare for tinntius under the NHS that no private healthcare practice can match in this country, I assure you. Please read the post below and then click on the link and read my article: Tinnitus, A Personal View. There are also other links containing articles that you might find helpful.

All the best
Michael

The onset of loud intrusive tinnitus can be very traumatic for most people. I use the words loud and intrusive, because tinnitus comes in many forms and intensities. When it is mild, moderate or occasionally heard in quiet surroundings it is usually not too bothersome and a person can go about their daily affairs quite happily and unperturbed by this anomaly. This type of tinnitus usually comes on gradually and in some cases it’s associated with hearing loss, as we get older and the usual treatment is the wearing of hearing aid/s.

Tinnitus can be caused by other things: an underlining medical problem, build up of ear wax (cerumen). Jaw problems. Some medications and even irregular blood flow through the body causing Pulsatile tinnitus. There are a plethora of other conditions that can be responsible. However, the most common cause is exposure to loud noise or music that has been played at high levels causing some damage to the cochlear in the inner ear.

This type of tinnitus can be loud, intrusive and very debilitating. Often leaving a person at a loss and not knowing which way to turn to escape the nightmare that has suddenly come upon them. Your Dr has probably told you, it’s tinnitus and nothing can be done, you’ll just have to learn to live with it. I remember those words as if it were yesterday resonating through my mind and thinking, live with this for the rest of my life, impossible. So I fully understand how difficult it can be for someone new to this condition to take this in and believe it to be factual.

If you are having difficulty sleeping you might have been advised to try a night time sedation or an ant-depressant to help cope with the stress and anxiety that often accompanies tinnitus. These medications can be helpful especially in the early stages and they don’t have to be taken long term, so it’s something to consider. They can act as a safety net so you don’t become too down.

A referral to ENT will usually be recommended. In the mean time try to keep occupied with something you like doing, as it helps to distract the brain from focusing on the tinnitus. Avoiding quiet rooms during the day by playing low level non intrusive music such as classical in the background can be helpful.

At night a sound machine placed by the bedside playing nature sounds or listening to favourite mp3 tracks or Cds are good. Keeping the volume just below the tinnitus is ideal and set to play throughout the night until morning. It takes time to get used to sound therapy so please stay with it. Whilst in a deep sleep it supplies the brain and auditory system with sound enrichment. Over time the tinnitus is pushed further into the background helping to make its perception less noticeable during waking hours.

In the early stages of tinnitus, if one chooses not to use sound enrichment sleeping can sometimes be difficult and there’s also the chance of the tinnitus becoming more intrusive as sleeping in a quiet room can allow the brain to increase it’s own background activity. In doing so it will also increase the tinnitus making it more intrusive during waking hours.

There is a tendency for newbies to try and cure their tinnitus which is quite understandable. There are many remedies, treatments and concoctions out there. Some affordable others quite expensive. I am not adverse to trying to help myself but want to say, there are charlatans and con artists eager to relieve someone in distress of their money so please be careful. Even tried and tested treatments I wouldn’t recommend a person try until they have been seen at ENT. Often a person after been seen at ENT is advised to wait a while.

The reason being. Many people habituate to tinnitus within six months sometimes a little longer and it has been known to go away. The ear is a very delicate organ and many Drs prefer to wait before investigating further and then suggesting a treatment. If other problems are experienced such as: pain in the ears, deafness, dizziness or balance problems this is of more concern and a person will usually been seen quicker.

It is best to have a word with your GP if you’re feeling stressed or depressed in any way, as previously mentioned there are treatments available. Leaving things alone until ENT advise you of the next step is the best thing to do in my opinion. Don’t try to fix anything or throw large sums of money at treatments that you have no way of knowing whether you’ll get any relief.

It is not advisable to listen to audio through headphones even at low volume and keep away from loud sounds. By all means go out but anywhere that plays loud music then wear noise reducing earplugs.
Take things slowly and one day at a time. Read some of the positivity threads and ask other members for advice. Many people eventually habituate to their tinnitus and go on to lead a happy and fulfilling life even though it may take a little time.

Michael

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

https://www.tinnitustalk.com/threads/tinnitus-and-mental-health.21978/

https://www.tinnitustalk.com/threads/is-positivity-important.23150/

https://www.tinnitustalk.com/threads/the-big-picture.19308/

https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/

 

Michael, thank you for all the info, I cannot believe you have had Tinnitus for so long and are so positive.
I will take on board what you have said about private medicine but.... I have to know in my own head whether I have something wrong medically. Wishful thinking maybe?
The problem is your scan is only as good as the person looking at it which is why I would like specialists to see it.
I too use magnesium cream/oil but have not been offered any meds?
To get the sound or pitch down do I want my blood flow to be better or slower?
Anyway I wish us all luck and thanks again xx Barb