My Life Is Ruined

[Lilyboo]

My journey with tinnitus started In November 2014 when I was 30 weeks pregnant.

I developed a very severe head cold which caused pain and swelling in my ear. It was 3 days into the head cold that the ringing in my right ear started. I went to the gp she said my ear drums looked very dull which indicated congestion etc but no infection.

I paid privately to see an 2 ENT consultants Plus one on the NHS all three have said its my hormones/fluid retention causing the ringing. Apparently progesterone swells the muscus membranes which causes tinnitus. They all said it will subside after delivery but I had to give it time. They dismissed the head cold as the cause as my hearing tests shows perfect hearing, no loss or damage etc (I should mention that in September 2014 before the head cold I started to hear my heartbeat in my left ear when I layed on the pillow. At the time i didn't realise this was a form of tinnitus and put it down to all the extra blood in pregnancy).

January 2015 I had my daughter. The ringing persisted, in fact it went so loud i started to have panic attacks.

I'm now 12 weeks post natal and still have tinnitus. I feel like I have been robbed of precious time with my daughter. I had to stop breastfeeding her as the night feeds were unbearable!
I can't help but feel my sinuses are reponsible. The pulsatile started not long after my 1st sinus infection. The head cold I had turned into a another sinus infection. I have had constant post nasal drip for the last 5 months. I'm desperate for answers!

Please please someone tell me that they have heard of pregnant women developing tinnitus that dissapeared. Or tinnitus caused by sinus infections. There is not many success stories on the web it seems that once you have tinnitus it stays!

I'm 31 and I'm too scared to drink, go to concerts, festivals, bars, clubs ect in case I'm exposed to loud noise. im terrified to fly in case it gets louder. I feel like my life is ruined. I just can't believe this has happened to me.

 

[Carlos1]

I'm so sorry for you Lilly T is really tough at the beginning give it some time your still young it might even go away . There are allot of trials going on right now maybe one of them will be successful and we'll all rejoice. The only advice I can give you for now is be kind to your mind and think positive. Congratulations on having a baby girl.

 

[Lilyboo]

Thanks for your reply. I just cant imagine ever learning to live with this. I can't believe that they can send people to live on planet Mars but have no cure for tinnitus!!! It's such a lonely thing to live with. People who don't have it just don't understand. My dad can't believe the state I have got myself into over "some noise in the ear". I know he doesn't understand but I hate that he thinks I'm overreacting! I would love him just to experience it for one week and see how he handles it.

 

[astronomer]

lilyboo,
your life is not ruined, i am sorry for you and just maybe things will work out,but i do know i got this 3 years ago yesterday and i am doing things i never thought i would do again,most of the time i forget about it,brain adaptation as my doctor said it would,but yes, i have to wear plugs for theatres,cutting grass,that stuff,i very much enjoyed playing in rock bands for many years,touring from town to town, what a blast,but i had to stop due to the severity of my tinnitus but through the depression of losing that thrill of playing on stage i adapted to what i can do such as soft fingerstyle instumental classical music,dont expect some close people to you to fully understand, however,you have a child that needs your love,please try to not overthink and take it one step at a time,and i have learned to be good to myself ( and those around me ) , that just makes me feel better and keeps the stress level down, its not your fault and not worth beating yourself up over,please take care !

 

[billy43]

hi lily.the tinnitus you have is pulsatile tinnitus.i also have PT.only someone who has tinnitus and especially pulsatile tinnitus can understand how difficult it can be to deal with.the good news is in some cases pulsatile tinnitus is curable.also the fact that you developed PT while pregnant theres a real good chance it will go away on its own.ok good luck with things and im sure things will get better for you. billy43

 

[david c]

Hi sorry to hear about your recent problems. I can't really give advice on pregnant women and tinnitus. But I think you are right to be cautious about exposure to loud noise as this is one thing that can make tinnitus worse. Ear protection can help but I will still avoid any lengthy exposure to high level amplified sound eg as at rock concerts/ noisy clubs, more every day situations at restaurants/bars should be OK. Also I've flown with tinnitus frequently and not had any problems though again earplugs may be a good idea. All the best

 

[david c]

Oh - forgot to mention that both NHS and private ENT consultants I saw were all useless. Don't expect to get much useful advice from any of them.

 

[billie48]

Lily, don't despair and don't panic. Your T is relatively new and you are a bit traumatized by T, such that you are most likely functioning in the fight or flight mode of the limbic nerve. Given some time and using some strategies learned from others (such as advice here and from success stories), you will be just fine like many members.

In all my 6 years reading various tinnitus forums, I did come across many young mothers with tinnitus. Yes there were the usual struggles like everybody else. This struggle for new T sufferer is quite common regardless of one's position in life. So you are reacting quite normal as a new sufferer should. Take comfort that this initial phase of suffering will pass. If you don't believe it, just read up the many success stories and you will find the same journey for most people. So you will be just fine. The thing about young mothers is the love they have for the innocent baby. After the fear of tinnitus rubs off a bit, then the love & care of the young innocent child can take over and it can help the mother to focus on some other important things than this ringing. Why not take this approach, after reading enough success stories, knowing that you most likely will get better over time in a year or two like others, then you say to T whenever it rings loud "I am too busy taking care of my kid, why don't you take a ticket while I am busy and why I need to deal with you while I know in a year or two I will be just fine like most people?" Then focus your attention on the needs of the baby for a year or two. Then if you feel you still need to deal with tinnitus after that, then give it some time.

This is what I call 'min-breaks' from T, that we don't keep monitoring and worrying about T which is very important in the journey of our T life. Once you know you can break from the oppressing tyranny of T, then it will give you some hope for the future that you will be ok. In the mean time, make sure you have gone through the necessary steps as a new T sufferer and try to have masking going to calm your nerve. Here is a link to TT resource on helping and guiding a new sufferer and it comes with masking tracks. So don't panic. Calm down & be positive as much as you can. Take care & God bless.

https://www.tinnitustalk.com/panic/

 

[Ricky81]

Hey I fly a lot for work. . Make sure you have noise cancelling headphones. Yea stay away from loud bars etc.. or wear ear plugs. It's easier for females to hide them with hair.

 

[Danny Boy]

Oh - forgot to mention that both NHS and private ENT consultants I saw were all useless. Don't expect to get much useful advice from any of them.

All they do is an hearing test and then basically get outta my office!

 

[NiNyu]

I just cant imagine ever learning to live with this. I can't believe that they can send people to live on planet Mars but have no cure for tinnitus!!! It's such a lonely thing to live with. People who don't have it just don't understand.

Exactly! I totally agree with you. The thing is, there is nothing. Well, maybe one treatment called HIFU. But there hasn't been a clinical trial on T yet. If they did, it could be the cure. Or at least a real treatment.

My kind ENT said, if the hearing comes back (usually) the T resolves. My hearing loss is extreme. I can only hear up to ~2400Hz (left ear). And when I hiccup, shake my head I can hear a bubbling in my ear. Thus I presume something is damaged inside.

Do you have any hearing loss?

 

[Lilyboo]

Thank you everyone for your replies. Today has been one of them days where the tinnitus seems so loud. Most days I feel I'm coping great, probably because I'm obsessed with my new daughter. However saying this I havent had a day where I haven't gone into quiet rooms to see if I still have it. Does this mean I have mild tinnitus? Some days I'm slightly aware of it when the TV is at a certain volume or when commercial ads come on and that 2 second silence between each advert I will hear it. Some times I hear it in the car and need to have the radio on and if I'm having a spike I may even hear it over that!

I think the ENT consultants who I have been to see over the last few months have really built up my hopes saying give it 3 or more months and it will fade away. I have therefore been counting down the days to three months and now that I'm 3 months pp the panic has really kicked in because I still have it.

I have been taking Benadryl over the last few days and I've found that it is reducing the volume for hours at a time. I have also noticed less post nasal drip! I don't have allergies but I read this tip online.

I cant believe how soul destroying this condition really is.

 

[Lilyboo]

Also I have had 2 hearings tests and I have no hearing loss or damage. In fact I have "excellent hearing" according to the ENT. I'm obviously pleased by this but so frustrated as I have no idea what has caused this. It's just guess work really. Is it my hormones? Is it my sinuses? Is it inflammation from a virus? the lists are endless!

 

[Danny Boy]

Also I have had 2 hearings tests and I have no hearing loss or damage. In fact I have "excellent hearing" according to the ENT. I'm obviously pleased by this but so frustrated as I have no idea what has caused this. It's just guess work really. Is it my hormones? Is it my sinuses? Is it inflammation from a virus? the lists are endless!

I have great hearing too! But you can have hidden hearing loss, so that might explain it.

 

[Ricky81]

Well there is no cure for T. I know it is what it is. It might go away After a few years.. if not the chances of it going away are slim but you never know.

Did your Ent recommend an inner ear and brain mri?

 

[JohnnyMx]

Most days I feel I'm coping great, probably because I'm obsessed with my new daughter. However saying this I havent had a day where I haven't gone into quiet rooms to see if I still have it. Does this mean I have mild tinnitus?

Hi lilyboo, i have some things to tell you, and most of them are good things.

1) 99.9% of us, that got T, the first months are the worst, we think our life was over. I did. But most of us get to a point called "habituation", is a state where your brain does not bother for the sound.

2) As you don't have so much time with your T, and the cause could be a sinus problem, cold, ear infection, there are big chances that your T will reduce or disappears in some time. I have already habituated, but 2 years ago i thought my life was over.

3) If most of the time you need to be in a very silent place to hear your T, then you most have mild tinnitus (in my case, i hear it 100% of the time, over anything, only the shower mask it, and for sure some fellows here have severe cases), so in case your T won't go, your chances of habituation are very high, you are blessed for being in the group of the mild T

4) Stress, tired, depression, anxiety, all this things make your brain to increase the perception of the sound, and while you are always worried about your T, or thinking that your life is over... for sure your sound will increase.

Said this, an as a father of 2 lovely boys, i encorage you to give T a break, stop thinking, worring or looking for the sound. If you hear it, don't pay attenion, feel nothing, just hear it. At the same time start enyoing your little baby, because they grow so fast!, she won't be a baby again, and you need to enjoy her completely.

I can assure you will be fine.

 

[billie48]

I agree that if you have to try to listen for your T in quiet room, than count your blessing that your T is likely mild. It will probably fade if not according to a predetermined schedule. Even if it stays, most people will habituate to mild T in due time. Just keep busy and don't give time to pay attention to T and it will gradually be faded out of your consciousness because it is not considered a threat. But remember that there will be setbacks at time along the way to habituation.

 

[Lilyboo]

Thank you for replying to me. I feel better just talking to people who are going through the same thing as me. I know i need to stop listening for it, I just cant help it. I've become so obsessed with waiting for it to go. The thought that I may have this life is unbearable.

I know that my tinnitus is low because I no longer need White noise to sleep. When I was pregnant I couldn't even think of going to sleep without white noise playing on my phone. I haven't used any white noise for 11 weeks. I think my fear is that it may go louder and I won't been able to do anything about it.

Thanks for all your support guys

 

[Lorenzo74]

Hey @Lilyboo

Try to stay in the "Here and Now" as much as you can.. Don't think about how the future could be but concentrate on how the present is and how you can make it better for you and your baby girl..

The more you will concentrate on her and her needs the less you will think about your T and eventually it will fade in the background.. You are early into it and it will take sometime but be patient and be positive.. T cannot kill you, but it can make you a hell of a lot stronger )

Big hug and take care of yourself and your ears !

 

[Valentina]

@Lilyboo Your life is not ruined, you have a daughter!!

The first months with tinnitus are the worse, they're nightmare, a total desperation. With time and much patience you will learn to accept it and to live with it. You will find your way, I'm sure In addition, for some people tinnitus vanishes spontaneously, maybe you are one of those lucky persons!

A big hug from me too

 

[Danny Boy]

@Lilyboo Your life is not ruined, you have a daughter!!

The first months with tinnitus are the worse, they're nightmare, a total desperation. With time and much patience you will learn to accept it and to live with it. You will find your way, I'm sure In addition, for some people tinnitus vanishes spontaneously, maybe you are one of those lucky persons!

A big hug from me too

Totally, agree! I had fluid behind my ear which basically made it 2oo times louder!

 

[Danny Boy]

My journey with tinnitus started In November 2014 when I was 30 weeks pregnant.

I developed a very severe head cold which caused pain and swelling in my ear. It was 3 days into the head cold that the ringing in my right ear started. I went to the gp she said my ear drums looked very dull which indicated congestion etc but no infection.

I paid privately to see an 2 ENT consultants Plus one on the NHS all three have said its my hormones/fluid retention causing the ringing. Apparently progesterone swells the muscus membranes which causes tinnitus. They all said it will subside after delivery but I had to give it time. They dismissed the head cold as the cause as my hearing tests shows perfect hearing, no loss or damage etc (I should mention that in September 2014 before the head cold I started to hear my heartbeat in my left ear when I layed on the pillow. At the time i didn't realise this was a form of tinnitus and put it down to all the extra blood in pregnancy).

January 2015 I had my daughter. The ringing persisted, in fact it went so loud i started to have panic attacks.

I'm now 12 weeks post natal and still have tinnitus. I feel like I have been robbed of precious time with my daughter. I had to stop breastfeeding her as the night feeds were unbearable!
I can't help but feel my sinuses are reponsible. The pulsatile started not long after my 1st sinus infection. The head cold I had turned into a another sinus infection. I have had constant post nasal drip for the last 5 months. I'm desperate for answers!

Please please someone tell me that they have heard of pregnant women developing tinnitus that dissapeared. Or tinnitus caused by sinus infections. There is not many success stories on the web it seems that once you have tinnitus it stays!

I'm 31 and I'm too scared to drink, go to concerts, festivals, bars, clubs ect in case I'm exposed to loud noise. im terrified to fly in case it gets louder. I feel like my life is ruined. I just can't believe this has happened to me.

I've hope that it wold get better as would get better as better!

 

[NiNyu]

Also I have had 2 hearings tests and I have no hearing loss or damage. In fact I have "excellent hearing" according to the ENT.

They just do the hearing test in speech range, up to 8kHz. But the human ear can hear up to 22.000Hz. So you might have hearing loss after all.

You can check it yourself,
http://plasticity.szynalski.com/tone-generator.htm

But be careful with the volume!!! Don't put earplugs/headphones on before having checked the volume.

You have mild/faint T if you have to be in silence to perceive it. Anyhow, you may get lucky and it resolves after time. You never know.

I cant believe how soul destroying this condition really is.

Neither do I. Honestly, I think nature did mess up huge time.

 

[Danny Boy]

I've hope that it wold get better as would get better as better!

What did I just say? I must've been on trobalt when I wrote that..Haha

 

[ampumpkin]

@Lilyboo

Hello dear!

I am also a mother of 3 who got T shortly after giving birth to my first daughter in 2007. My pregnancy was ok but I went through post-partum depression and had to take antibiotics. They caused my T.

The first few months were horrible. I was just a shadow of my old self. Life sucked and I wanted to end it all. I almost did. In addition to the PPD, there was my T. My life was over.

My daughter saved my life. Thinking about that dreadful day brings tears to my eyes. The image of my daughter popped in my head and I just couldn't do it.

The following day, I discontinued the antidepressant. Back then, I didn't know they were causing my T. The T went down slightly but remained. I went to an ENT and had my hearing tested. I had 105% hearing. He dismissed me after that and said to live with it.

Well you know what? I did just that! I went back to work in March 2008 with my T and I "habituated". It took me about 6 months for 100% habituation. I had been feeling good for 6 weeks when I got pregnant again. My pregnancy went well, I had a second daughter.

Through those years, my T level remained the same: mild. I almost never "listened" to my T and never cared. I lived a normal life, went to concerts and clubs, always with my ear protected.

100% habituation means: I NEVER thought about my T. Never listened to it. Never looked for it. I may have had spikes but never noticed.

From 2007 until 2014, that was my life. Fast forward may 2014. My left ear clogs and I had to take antibiotics (Biaxin). I thought it was penicillin. But it was an antibiotics from the -MYCIN family, therefore toxic to the ears.

My T went thought the roof. It was awful, the loudest it had ever been. I could hear it above the shower. I lost part of my hearing. Then I looked on the Internet and realized that my antibiotics was probably the cause of my discomfort I wish I had checked before.

I discontinued it of course. My T remained loud. Oh my god, not again

In 2014, my situation was different. I was the single mom of 3 children, my 2 girls and my boy, aged 1 only.

It was so hard. I joined this community and they helped me a great deal. It was difficult for the first few months. The T was louder but started going down slightly. My hearing came back. I did another hearing test, no changes, 105% hearing.

I had my ups and downs. Then fast forward September 2014. I signed up for my first half marathon. And I did it. I have said on here that this day in September was a true turning point for me and my new louder T. If I could do it, I could do anything. I was stronger than T, I had ran 13.1 miles with no training, I was a beast and a winner!!

Now, I have to say that my T is slightly louder than from 2007 until 2014. But I habituated again, I would say 95% this time. Life is almost back to normal. I met someone new shortly after running my half marathon and we are still together. Love brought even more happiness upon my life. He has a daughter of his own and we have a lot of good family time together and with our 4 children.

Do I hear my T from time to time? Yes. More than before. But I chose to live with it. And life is good.

Your story touched me because it brought me back to the very beginning... a 25 years old mommy with a baby wanting to end it all... but look where I am now! 32 years old mommy, happy and with a fullfilling life.

So I want to tell you...hang in there! Time will heal your pain. Because it does hurt... I compared it before with going throught a bad break up...in the end, you have to reach the acceptance stage. As for me, it happened on that day in September.

Hugs for you and your little one. You can always message me if you have questions,

Anne-Marie, from Canada

 

[Lilyboo]

Another reason I think it's my sinuses every morning I have thick yellow/mucus stuck to the back of my throat (vile I know sorry) and for the whole I will constantly swallowing this( postnasal drip) This alone makes me feel ill. Plus my turbinates in my nose are so swollen and red but I do breathe fine through my nose but it's makes clicking noises. I'm not making any sense right now am I? No wonder the ENT consultants always look confused during the consultations! I just know it's not my pregnancy hormones that started this, I know it's my sinuses!

I also find Benadryl reducing the ringing to a really low humming noise.

I go back to see another ENT consultant in two weeks and I'm explain exactly whats going on. I refuse to be fobbed off with the "it your hormones, give it time it will go" Does anyone feel like ENT consultants don't listen to a word you say?

 

[ampumpkin]

I don't think these are your hormones. Most likely, your sinuses don't help. It could very well go down after the swelling / infection has been reduced.

But keep in mind that maybe it will no go down and it may be permanent. Always be prepared.

As for an increased, in 2007-2014, my T NEVER increased. It increased because I took some new medicine, otherwise, it would most likely be the same. For the past year, it has always been decreasing and remained stable.

 

[Lilyboo]

Anne-marie- I have literally cried my eyes out reading your post! Finally someone who knows what it's like having T with a newborn. It's just so hard because I finally have the daughter I longed for but I have been to hell and back to have her.

I had an horrendous pregnancy, nonstop problems. I then got T! I had a c section and got a wound infection. It took 4 courses of antibiotics to clear. I then got e-coli and needed more antibiotics. I then had blood tests which came back showing I had vitamin D deficiency and low serum calcium. I'm also anaemic from my 1st menstral cycle (sorry guys) since the pregnancy. It really has been the worst time of my life.

I can't believe how much you have also been through. Your post really does give me hope. I'm aware that my T is low compared to some people on here. My heart goes out to them. How they cope is unbelievable. Thank you so much for replying to me and congrats on the marathon, the feeling must have been unbelievable passing th finishing line.

 

[Karen]

Hi, Lilyboo,

I'm so sorry you're going through this at a time that should be one of the very best times of your life. I also have pulsatile tinnitus, and certainly understand what you're going through right now. I've had PT, plus increased T, for nearly five years now, and I wanted to let you know that things really do improve. Even though I've had a lot of tests, and no cause has been found, my PT has calmed down a lot since the beginning, so that could happen to you, too.

Also, my daughter, who is 34, had a baby three years ago, and she also had tinnitus during and after her pregnancy (not pulsatile). In her case, the tinnitus gradually faded away, and today she doesn't even notice it any more.

It's quite possible your PT is related to your sinuses, but there's another possibility you might want to read up on. A common cause of PT is called "benign intracranial hypertension". It has to do with fluid buildup around the brain, and is a controllable condition, once it is diagnosed. I've heard of other women who have had T right after having a baby, and they were diagnosed with this condition. You could read up on it, to see if the symptoms are similar to yours.

Good luck, and please know that there are a lot of us out here who also have tinnitus and/or PT, who can help you as you go through this.

Very best wishes and hugs,
Karen

 

[ampumpkin]

@Lilyboo

You are right when you say that I have been through a lot. I was sharing my story so that you can have hopes for a brighter future. Even when times are hard and get harder, it is still possible to be happy eventually, despite T.

I just don't want you to lose hope. You have a lot on your plate right now. Giving birth is also hard on your body, it takes 9 months to create a baby and at least 9 months to get back into shape. You had a C-section and that is certainly not to be taken lightly. If you have iron deficiency on top of that, the feelings you're experiencing are normal. I was also anaemic after giving birth the first time and it probably made me more depressed. I hope you're taking some iron supplements to help you

It's also important that you challenge yourself. That you go out everyday and get some fresh air. It's good for your mind and body (and also for baby!). Taking a daily walk is a good idea. Do you have friends with young children too? It's nice to meet people and chat. What I mean by challenging yourself is that sometimes, you have to make an effort in order to feel better eventually. You have to kick yourself in the butt (sorry) and go out, even if you don't feel like it.

I also know for a fact that young mothers put a lot of pressure on their shoulders. Being a first time mommy is hard on its own, and even harder with T.

The key that helped me habituate twice to T: keeping busy. When you're busy and focused on something else, your mind doesn't think about the T. I know for a fact that putting T in the back of my mind helped reduce the volume. The brain is a very tricky organ!!

Things will get better and better. And even if the T remains, you can still live a happy life. Believe in yourself and a bright future. You are a hero, you created life and the sun will come back.

big hugs And I am happy if my posts can help you on your recovery path. I mean every words.

Anne-Marie