Finally a Place Where People Will Understand Me!

Hello,

I have tinnitus since last March – I had a pain in my ear that would come and go and then started having vertigo every time I would stand up from bed or lay down. I went to the doctor, he was not there, I was seen by his trainee (not a good idea!) that decided to give me ear drops. It was a disaster: the ear drops blocked my ear and caused all kind of noises inside my ear.

Everyday it would be a different variation: in my left ear, I had (and have) the high pitch sounds (the whistle and the ringing); in my right ear, the ear where I put the ear drops, I had (and have) the low pitch sounds – lots of variations, I called them the truck engine (the worst of all, that just happens every time a doctor observes my ear – it usually stays for 2 or 3 days – very scary and disturbing), the fridge engine, the car engine, the glass vibration, the air conditioning, the electric device sound… you name it!

I went back to the doctor, he told me to wait that it would pass away. It didn’t: I went to the hospital and managed to get an ENT appointment. Meanwhile my noises were better to the point I just had the high pitch ones (whistle / ringing) so when I did the hearing test my “sick” ear was perfectly fine and the left one (where the high pitch sounds developed) had some hearing loss in high pitch sounds.

I also did a vertigo exam to check if it was Meniere’s disease – it wasn’t, it was BPPV and with the exercises the doctor did during the exam, the crystals were back in place and the vertigo stopped (last time I had a little one when changing position in bed it was more than one month ago).

The doctor that made the vertigo exam told me the tinnitus I have has nothing to do with the BPPV – so of course it was caused by the ear drops. I have talked with several doctors about the ear drops having caused me tinnitus but all of them say it is impossible. Well, I can’t see why it is impossible and I really think they don’t want to admit that a medicine prescribed by a doctor caused this.

After 3 wonderful weeks in May only with the high pitch sounds (with all the respect for the ones who suffer with the high pitch, the low pitch noises are much worse), I did something that caused me a terrible cost: I went to the dentist and had a electric cleaning – I think it was the vibration that caused me the low pitch sound to come back. I couldn’t believe I have been so stupid. I have it for almost 2 months now and it doesn’t go away.

Except for last Sunday, the 13th July: I have no idea why, but it stopped suddenly in the middle of the afternoon and I was able to sleep on that night without the car engine in my ear! I thought it was a miracle, but it came back the next day, while I was watching TV at dinner time. I cried for hours.

So, what I have now? High pitch noises in my right ear (a mix between a whistle and a ringing – can be louder or quieter, depending on the days) and low pitch noises in my left ear (a rumbling, car engine and glass vibration all together).

In a good day, I can disguise the low noises with sound around me: walking in the street, washing machine working or even talking to someone. In a bad day, I can hear the vibration all the time, except when walking outside. The high pitch sounds are permanent, even in the street.

It is scary, it is annoying, it makes me sad, it makes me angry – I try not to think about it, but it is impossible – I am always comparing what I hear.

I have the luck of falling asleep the minute I go to bed, so I manage to do it even with the ringing, the car engine and the glass vibration. When I wake up in the morning I have to stand up immediately to avoid feeling anxious.

My biggest concern is that it gets even worse – I know it’s possible because the experience of the truck engine sound (an engine extremely loud and vibrating) is the scariest thing that had happened in my life.

I am going to another ENT at the end of the month, this time in my home town (Dutch doctors are too relaxed in my opinion) - I am happy and nervous at the same time: happy because someone I trust is going to listen to me and observe my ear and nervous because the truck engine sound can come back.

How do I avoid depression? I have a son, so I always think I have to stay calm for him, and I fight it with being busy and especially thinking that as long as I don’t get the truck engine again, all the other sounds are bearable. And, of course, thinking about the 13th July, the day of my little miracle – maybe it will happen again!

 

Hi Rachel, Quite the story you have. Regarding avoiding depression, I think you answered your own question.

"I have a son, so I always think I have to stay calm for him, and I fight it with being busy and especially thinking that as long as I don’t get the truck engine again, all the other sounds are bearable"

If that truck engine comes back you will find a way to work through it. A drug like Xanax will help with anxiety and take the edge off the of the engine noises. I would request a prescription for Xanax or what ever the equivalent is for Xanax is in the NL. Try it and see how it goes. Be sure to keep posting and update us on your condition.

Also have a look around. "The Positivity Thread" under Support is a good place to start....

 

Thank you, Gary! It really worries me the fact that the truck engine noise can come back, especially because I will be observed again by a doctor next week.

About my current vibration / car engine, it makes me feel tired and worried.

I just wish this would end.

 

Rachel, your mind is very powerful, it can make things happen. If you keep telling yourself the noise will be back "especially because I will be observed again by a doctor next week" then chances are it may come back if that is what you believe" Try not to add that type of thinking to your situation, it will just make it worse. Do all you can to think good thoughts. I know it is not easy, but which way would you rather think, it is going to get worse, or it is going to get better.

Being tired because of stress is very common, it can wear you down. I know, I was that way when I first got T. I finally realized how you look at your problems makes a big difference about how you feel.

 

@gary thank you for your advice, you are right! The most difficult is not having answers: why did it stop last Sunday? Why did it start again on Monday? It drives me crazy.

 

Exactly Rachel, when we have a good day or bad day we want to back track and see if we can figure out what we did to have a good or bad day, unfortunately that is very hard to do.

The only thing predictable about T is that it is non-predictable, I read that right here on TT and it is so true, T is very elusive, like trying to catch something in a jar we can't even see.

 

@gary Having a bad day today, can't mask vibration, even with music or going outside. Will try to remain positive! Thank you for your help!

 

Hi Rachel, I just saw your post. Are you doing better today. Is /was it the truck engine noise. Sometimes we just have to wait it out and do the the best we can. Just remember it will go back down like before....

 

Sometimes when m T's are at there worst I take an Oxicototin very small dose and it does help. Yes I know its addictive but I have been taking this stuff for years and know myself well enough just to take a minimum amount to take the edge oft my racket upstairs.

 

@gary Hi Gary, Thank you so, so, so much for caring! You always have the right words! It was not the truck engine noise but I couldn't mask my usual vibration / car engine / rumbling / roaring at all - usually I am able to disguise it with sounds around me. Today I am better, back to the "no silence=no low frequency" routine. Thank you for dedicating some of your time helping strangers with positive words and excellent advice.

 

I'm still trying to find more people with low frequency tinnitus (rumbling, roaring, drone, vibration, engine sounds) as I think we are a minority here. If you have it, please join the discussion at "Low frequency tinnitus" thread.

 

Hi Rachel, I was just looking around and saw this post here you made and was going to suggest you post over on the "Support" forum, I went there and see you already have. You seem to have some supporting people helping.
Hoping you are having a good day. For eleven days in a row I had that loud roaring noise, finally today it has eased up quite a bit. I just had to ride it out...

 

Hi Gary, thank you for your suggestion and for your care. I'm sorry about your roaring noise and I' m glad you are feeling better now.
I'm on holidays and for some days my roaring noise was much better but yesterday I did something stupid - I went to a disco party at the hotel garden - and today it's a disgrace again, I'm really angry with myself!

 

Rachel, don't be to hard on yourself, for all you know the T could have came back anyway. For me loud noises do not seem to cause loud T. Mine just comes out of nowhere. When I get up in morning that sets the tone for day as far as T goes. If it's loud it stays that way all day, sometimes for almost two weeks. Then I may wake up and T is very low, and will stay low for 3-6 days. It really is one day at a time....

 

@gary Hi Gary, thank you for being always so positive, it really calms me down! My low frequency T (the roaring) is back to normal now, thank God! Annoying , but not extremely loud. However, I have now a new sound in my left ear (the ear of the high frequency T): it is like a cicada/cricket and I have observed it is related to exterior noises, as it stops when I cover my ear - and my ringing is also louder now. It is the first of my noises (I have 6 different ones now) that is not interior.
I guess it is as you say, Gary, you never know... one day at a time!

 

Glad the low frequency T is back to normal. For the exterior noise, have you tried using ear plug or those ear protection devices the look like headphones.

I am on my 2nd day of low T It was very loud roaring hissing for 10 days, when I woke up yesterday it was down to a very low level. I did not do anything different. I just waited it out knowing sooner or later it would be better....

 

Hi Rachel,holiday over,glad it's good it's gone back( shame there in first place ) to before holiday.It is what it is ,never fathom it out none of us can. Hope the other noise vanishes,won't forget this holiday,that said you got that holiday break.the flying went well,so you know you can continue doing that.
That hymn that says One day at a time sweet Jesus,comes to mind.
You just take care okay.xx

 

Sweet Jesus has bailed me out many many times....

 

Rachel,

I have had a multitude of sounds in my bad ear (left). I have been diagnosed with a form of Meneires. I don't have the vertigo. I do get slightly dizzy off and on. Sometimes the sound was so loud it moved to my head and then over to my good right ear. It seemed that when my hearing was down, my tinnitus got worse. My hearing is up now and the T seems to be lower.

It can make a person very anxious and depressed. I have gone through a multitude of emotions. Please know that it will get better. It really does. Yes, it is unpredictable and the bad days will come. Hang in there and keep positive. Don't let your anxiety and depression spin out of control.

 

@Teri thank you for your advice - my ENT was absolutely convinced I had Meniere - I had all the signs, except for the big vertigo attacks - I just had vertigo when changing position from vertical to horizontal and vice versa and only for a few seconds - they still come back once in a while. My tinnitus (especially the roaring one) is much worse now than it used to be when I started the vertigo. Let's see how it goes, it is really tiring.

I am positive now, you can't imagine how this group helped me (and a special thanks to my friends @valeri , @Marlene , @Della , @ampumpkin and @gary that are so present in my life and are so important to make me feel better), I used to feel scared, lost, thinking of death, frustrated... here I found some peace and a lot of support - it is so good to know that there are more people living everyday this nightmare and still being positive and energetic! I am much more adapted now, I stopped fighting (but sometimes I still wonder why me, why this...) and finally accepted it!

 

@Rachel Murray on the other post, I asked you the cause of your T now I know... for sure, the eardrops are related to your T. We've heard many testimonies on here about those eardrops!!

I didn't know you had a son As you can tell from my avatar, I have 3 wonderful children, 2 girls and a boy. I am a single mother. Things have been hard but I can't let T bring me down. My children need me and if I am feeling down because of T, nobody will be able to relay me.

Like @gary said, the mind/brain is VERY powerful... I try to condition myself to be happier, to think about something else other than T, to live a normal life... Anything that you can do that makes you stop thinking about T even for 30 minutes is GREAT. After a while, you will spend more and more time not thinking about your T. That's what is happening to me right now.

Bigs hugs to you my friend xx...

 

@ampumpkin you are beautiful and your kids are so sweet, lucky girl! How did you got your T? You look very young!

I am also doing it now: trying to live a happy live and avoid obsessing about this - but of course for several months I was so revolted again those ear drops and that doctor! Now I try to forget how it all started... it helps me to accept it.

 

@Rachel Murray I'm 31. My T was caused by ototoxic meds.

 

Hi lovely people! How nice to know that there are people who understand me. I'm an English teacher suffering with tinnitus and Ménière's and there are days where I can't even get out of bed, let alone teach 20 students. My colleagues think that I'm "making this up" and many aren't sympathetic to this. In fact, someone told me to take some antibiotics and the "infection" would go away. My boss wants me to see a "company-approved" doctor to diagnose me (again) when I've already seen 4 doctors in the last month! It's tough being in a job where listening to students talking and trying to correct their mistakes is one of the main things I have to do as a teacher when I can't hear half the things they say and my dizziness gets really bad when I'm walking around and trying to listen to my students.

Oh and more background info, I was off work for 6 weeks and thought it was enough to manage my tinnitus and when I went back to work again, it got worse. 6 days prior to that day back at work, my tinnitus was slowly reducing and I actually had 6 really great days of minimal sound in my ear. Now I'm off work again with the most severe high-pitched ringing sound.

I've had tinnitus for the last 5 years but it's never been as bad as it is now. I try to stay positive by eating the right food and doing some light exercises but my inability to prove that my tinnitus is bad to my colleagues is really upsetting me. Apart from passing out in class in front of the students or passing out in the staffroom, what else can I do?

I'm so angry and frustrated and I don't know how to deal with this. Please help me

 

Hello KarinaK
Sorry to hear you are having a tough time - my colleagues are incredibly supportive luckily, also was off work with tinnitus for 3 months as was in total breakdown. Don't have Menieres know it can be debilitating, print a sheet from the NHS website and show it to them.

Also this is a powerful article:
https://themighty.com/2015/03/a-letter-of-complaint-to-menieres-disease/

Show them the Tinnitus Talk video so they can see what it's like. You should get a medal for still carrying on with teaching when u feel so debilitated.

Hugs xxx