Why Me?

[Worker]

Until 5 june 2014 i enjoyed my life and had taken care of myself. On that day i discovered i could hear a noise in my left ear and neck that sychronised to my heartbeat. It is 24/7 high pitched and sounds like sleighbells. It fluctuates in volume for no reason throughout the day and night. I can change the pitch and volume by various neck and jaw movements. I can move it to the right ear with jaw, neck and pressing on right mastoid bone. I can change the pitch by pressing on my head anywhere. If i drink a glass of wine it gets very loud and swaps to my right ear! It is reactive to loud noises so therefore i cannot go to cinema, parties, theatre. The noise becomes incredibly loud. Nothing drowns it out at all. Four months ago i heard ringing in my right ear which has stayed but i can filter that out. At the same time I started to get flutters to peoples voices but if I cover one ear it stops! I hear another heartbeat noise which sounds like a metal drum in the distance. I hear intermittent ticking in my left ear.
I have normal hearing! I have had every scan possible and the best consultants have reviewed my scans and they are all normal. I cannot sleep and have no desire to sleep.
Could anyone shed any light on what is causing this? According to research it is blood flow or bone causing pulsatile noises. But I beleive that it has nothing to do with that cause. Ithas the characteristics of normal t. Unlike t I cannot find any ongoing research to this.
I just feel like giving up now. It has been hell. However can anyone function with such loud intrusions? I just want to be normal.

 

[glynis]

A warm welcome to come the forum Worker.

The pulsatile tinnitus will be from your Carotid Artery and you might notice it more with your BP when more active.

Tinnitus can be caused by neck and jaw problems and this might be adding to your problem and shows when you move your neck and jaw in certain ways .

Tinnitus and the unwanted emotions can effect your life especially in the early days but by dealing with unwanted emotions and staying positive you find out you can do most things in life still and just protect your hearing around loud sound above 80db.

Tinnitus can cause problems with sleep but with sound therapy you adapt to better nights sleep but some people do need medication short term.

Dont let tinnitus take away your smile,social interactions and confidence and fight back doing everything you normally do and dont let the sound control your life.

We totally understand how you feel and I promise in time your life will get back on track and you wont notice your tinnitus as much as you do now...lots of love glynis
(Have a read up on Tempromandibular joint problems )

 

[billie48]

Welcome @Worker. I agree with everything @glynis has posted above. Bad emotions from T can hamper our quality of life. A big part of T suffering is mental. If we can just begin to shift our approach to T a bit, even if T hasn't changed, we can still improve the quality of our life. Acceptance of the new normal without painful resistance will help to turn around the suffering. I used to suffer a lot from my ultra high pitched dog whistle T which to me is like 10 times the pitch of a dentist drill. Then severe hyperacusis joined in the misery, making every normal sound so loud and piercingly hurtful, even the soft voice of my wife spoken too close. Then on top of that, T & H triggered the flood gate of hell of relentless anxiety and panic attacks from the moment I was awaken by the loud scream in my ears, being that I had suffered decades of anxiety and panic disorder prior to the arrival of T & H. My panic prone brain just had no chance against the horror of T & H and it just caved into a mental black hole daily and even hourly. The mental sufferings were too much to bear with no end in sight. That was pure hell for me and I never thought I could survive and recover.

But never say never. I have learned to change my mental approach to T and now I live a normal and absolutely enjoyable life. T and its tyranny is over. I wrote my success story like many other members do and I listed many helpful points that influenced my turnaround. If you are interested to read about them. for brevity, here is the link to the post:

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

Here is Jade's story with T louder than the 800 tons truck she drives, suffering until she realizes that more than 70% of her work colleagues have T too and not suffering like her. Her change of mental attitude brings an end to her T suffering. This illustrates a big part of T suffering can be helped with a change of mental approach:

https://www.tinnitustalk.com/threads/6-months-tinnitus-still-going-strong-but-so-am-i.3226/

There are so many success stories with lots of helpful insights and positivity. Do read them up to help lift your spirit. Don't despair. Just follow some of the insights and see if they help you, whatever works for your situation. If a panic prone person like me can turn around from T & H, have faith you can too. Take care & God bless.

 

[Worker]

My pt has nothing to do with my carotid artery. I have ad two mris and 2 ct with contrast. I have had the best consultants look at my scans. I have somatosensory pulsatile tinnitus which has nothing to do with blood flow. I do not have tmj, neck problems in fact I have no pain in my body! I have been living with this for nearly 2 years, it is not new to me! It is very difficult to continue with your life when the reactive pt gets soooooo loud in my head. I have tried maskers but when I take them out for three hours the noise is so loud I dont know where to put myself! I know everything there is to know about the condition but there is only one piece of research on the spts. It is so to the forefront unlike normal t. TMJ produces a continuous noise whereas mine synchronises with my pulse! I have tried evrything to sleep including zopiclone but now taking Mirtazepine 30mg. I dont always sleep taking that! I took Citalopram for 7 months but when I stopped it two days later t moved into my right ear and my ears started fluttering to certain pitched noises. I have never suffered from depression or anxiety before this. H sounds awful to live with and I am thankful I dont have that. I have tried everything during the past two years. I joined tt soon after my pt started. I dont mind living with t it is easy to habituate and yes I have discovered that there are a lot of people with t. It depends on the loudness and character of the noise as to how you can habituate.My husband has t due to hearing loss but it doesnt change and when he is busy he doesnt notice it. Mine has a different nature to that. Every time I walk, move, eat and talk it changes. Just wish I knew what is going on. Could anyone shed any light? I have 7 noises in total.

 

[glynis]

Hi worker ,
Have you used any sound devices to help you ?
Playing natural sounds throughout the night can help.
Set it below your tinnitus sound and keep it going all night.
Your brain tunes into your natural sound you have chosen set below your tinnitus and helps your brain adjust and is noticeable through the day after a while as helps you not notice your tinnitus as much.
This can take time but really worth trying.

Talking therapy can help too with CBT as it isn't nice having your quiet time taken away with tinnitus and emotions can build up and mood lower.
TRT is good to if given maskers to wear but only work best under instructions and not left to your own devices .

Keep posting on hear as we all together have a great wealth of knowledge to support each other when need some one to understand .

Great to hear your tests were clear so that is some positive news .
Tinnitus comes in so many forms and by understanding all aspects of tinnitus gives us some positivity it will get better.
Take care ...lots of love Glynis

 

[noisebox]

As you have had all the tests to rule out serious things. Though yes T is flipping serious. You say you can basically manipulate your T, so it sounds somatic, forgive if I've missed this, but have you tried a chiropractor to see if adjusting your neck helps, or been looked at for TMJ

 

[Worker]

Yes i bought oasis sound machine from bta the first week it started. My pt is way above that. It is good for t. I was given a sleep pillow which connects to pillow which was given to me at tinnitus clinic. Again my pt is way above. I have tvs on in various rooms but again my pt is way above and if too loud my pt competes with the noises like it does with maskers. The tinnitus clinic says to set below but when it fluctuates throughout the day and night that is very difficult as again it competes. Pt eminates from the back of my head and this is where it is manipulated. It works for t no probs when tv, fan pillow and oasis on but not pt. I had 10 sessions of cbt and that finished 3 weeks ago. Tft is only available at ent in london once a week. That is a long way to travel. My pt is reactive and every time i turned the maskers up the pt goes louder and so fourth and like said when i took them out for three hours the noise was so loud shrilling through my head. I am having different ones on 12.11 but i really understand that they are aimed at t. I have been researching for 20 months.

 

[billy43]

hello worker.i also have somatic PT mixed with reg.T.Mine is also loud.In the morning im talking really LOUD.mine is a hissing that changes with anything I do .and I mean ANYTHING.chewing,bending over .head, neck jaw tongue,you name it.when i exercise?louder than my mp3 player at its max.setting.Ialso have had this condition for 2 years.I know how bad this can mess you up mentally.Ive been there.I know what its like to feel isolated.to beg God to end it all even if it meant leaving my wonderful family.like you i researched for months and months and also had every test done except an angiogram.Now heres some good news.I get by fine in life.treasure my family.enjoy everything i did before PT.Crazy noisy sounds and all.do i hear it?of course i do .but i learned somehow to stop reacting in a negative way emotionally.Stopped going on sights like WHOOSHERS.not that theres anything wrong with whooshers but everything on there is about finding a cure.What about the 75% or so of people who have PT and aren't gonna be cured.are their lives over .NO!For me i started to turn the corner when i started to accept PT/T.Stopped paying attention to it 24/7.got back to doing the things i liked or needed to do.no matter how extremely tough this was.Stopped saying to myself over and over WHY ME?Started realizing theres a lot, and i mean A LOT of people who have things much much worse than me.got back to thanking god for all the good things i do have and can do.I hope things do get better for you.please keep fighting .Somehow try to focus on any thing positive.like Billie48 says, read up on the success stories section here on TT.dont give up hope that things can improve.God bless and good luck! billy43

 

[Worker]

Thank you very musch Billie43. I have had everything done as well except angiogram and if I had that I dont think anything would be found. Why do you think yours started? Have you tried anything to make it go away. Whooshers have been very supportive and have been my lifeline. But there is another cause other than blood flow do you think? I have only found one piece of research and it didnt continue.
I WISH SOMEONE would research our cause. I have been told by ent that it is an overspill of chemicals on the dorsal cochliar nucleus. I feel very lonely with this condition. I get in a very dark place now. Who diagnosed you? Did you diagnose yourself? Have we spoken on Whooshers? Is your spts reactive to noise?

 

[linearb]

 

[billy43]

hello Worker.im so sorry you are not doing well at this time with your PT.Please do not feel alone with this maddening condition.i cant tell you how many times I said to myself :HOW CAN ANYBODY LIVE WITH THIS #&$%#*.What caused my PT?I don't know and will never know.IT may have been caused by a severe concussion I had 60 days before my onset of PT.I saw 5 specialist in search of some answers and obviously a cure.3 didn't think so.1 said maybe.the last one had the best answer;it doesn't matter .its in the past.its what you do going forward that counts.His name was Dr. Maksim Shapiro out of NY city.by far the best and most caring dr. I saw.I also agree 100 % in regards to my PT.Its not blood flow . I believe all my tests confirmed that.one very good ENT speculated possible nerve damage. I do believe we talked a while back when you first joined TT.As far as the diagnosis of PT and somatic pt.all 5 specialist confirmed I have PT. Its in sync with my heart beep.the somatic PT.That was strictly self diagnosis.Upon hours and hours of research of PT I stumbled upon a study or studys of a Dr Robert Levine.His study totally matched the type of PT that I hear.last thing.No my PT is not reactive to external noises.its very predictable.very loud in the morning .settles down as the day goes on.You are not alone.it is rare but more people than you think suffer from somatic PT.Feel free to PM me If you would like.Do not give up hope.Things can improve and hopefully will.God bless. billy43

 

[Worker]

Thank you for your kindness. I am pleased you agree that it is not blood flow related. Yes I have done extensive research and wanted to satisfy myself that nothing could be found on scans. I have seen the best consultant in UK and have sent my scans for review by De Eisenman who is very thorough. I do beleive the fact there is nothing found. My ent consultant explained that it to do with overspillage of chemicals. I can do everything virtually that is explored in Robert Levine research papers. I cannot find any other research on this. I have found research on somatosensory tinnitus but that does not synchronise with heartbeat. It has a different cause. I have found maybe 10 others who have this. There could be many more on whooshers but I dont think they want to see it. I find every day difficult to live with it. Like you I have found patterns. Normally it goes quiet during the evening like wind tinkling. i wish someone would continue with the research. I have written to various establishments but I have not received any replies. Have you tried pstims as suggested in the research. I cannot buy these here in the UK. I have written to the suppliers but they did not reply. Thank you for your offer of pm. I will take you up on that.