Feeling Hopeless

[Paulie87]

Hi guys,

After a pretty good 2 weeks, I am back to feeling so hopeless and down, my low frequency tinnitus which I have measured at between 65 - 75 HZ and which pulsates (But often doesn't match my pulse is driving me crazy. I have a newborn baby who is so beautiful and I need to be there for him and my wife, but I don't know how I can go on like this.

Right now I get through the day basically by constantly humming as that covers up and stops my tinnitus. As soon as I stop though, the noise is right back. It gets so bad when I put my head down at night and lie on my back, you would swear there was a nightclub on my street with bass noise thumping in the distance.

I feel grateful I don't experience severe vertigo yet, but my doctor still firmly believes I am suffering from atypical menieres the way my symptoms come and go so much.

I'm just so over it. I've read posts on this website particularly with low frequency tinnitus, saying the only way out is suicide, I'm over the whole damn lot. I don't want to hurt myself, but I feel like I'm 29 and I feel like I've been handed a life sentence. I guess I'm just wanting to vent.

 

[MikeL1972]

Hi Paulie,

Welcome to the site!

You've indicated that you've had tinnitus since 2008, so you are talking 8 years.

Generally speaking, you may be experiencing a spike for a multitude of reasons, ie. stress, poor sleeping patterns, noise trauma, etc. Have you seen an ENT recently and had a hearing test? That way you could compare previous results. Have you tried to use a masking device of some kind?

You are 29 and have a new son. Life could not be any better for you! Now you just need to take care of yourself so you can take care of your family. Some focus and mental discipline can help you move forward! Good luck!

 

[Paulie87]

Hi Paulie,

Welcome to the site!

You've indicated that you've had tinnitus since 2008, so you are talking 8 years.

Generally speaking, you may be experiencing a spike for a multitude of reasons, ie. stress, poor sleeping patterns, noise trauma, etc. Have you seen an ENT recently and had a hearing test? That way you could compare previous results. Have you tried to use a masking device of some kind?

You are 29 and have a new son. Life could not be any better for you! Now you just need to take care of yourself so you can take care of your family. Some focus and mental discipline can help you move forward! Good luck!

Thanks for the kind words MikeL1972.

I am very lucky to have a lovely wife and son and caring family. I realise that makes me much luckier than some out there. This condition just takes the life out of me. I have had tinnitus for years and did suffer greatly in the beginning, particularly with sound sensitivity, however that was high frequency tinnitus which almost everyone with tinnitus has.

Now with this ultra low frequency I feel I am all alone and doomed. No-one seems to have it, even menieres sufferers who I was told this was common with.

It's so damn frustrating.

 

[Jo Spencer]

I'm sorry you're suffering so much Paulie. I have had tinnitus for 36 years. Just recently I started experimenting
with a sound technique I found at this site, and for the first time, I feel like I have found a way to have some impact
on it. I am getting it reduced by about 75%, but then it slowly goes back to baseline. I can't say that I have much understanding at all about this condition, and I assume there are many different forms. I am sure mine is the result of taking cortizone for two weeks due to an extreme reaction to poison oak. I watched a video on YouTube that showed the audio center in the brain as being like a key board and if part of that gets damaged the signals are just going haywire. When I use this sound technique I can literally feel the noise calming down. I will give you the link. http://generalfuzz.net/acrn/

 

[Samantha R]

@Paulie87 I feel for you.... my tinnitus started one month after my twins were born.

I had a low hum to start with, but it went away and was replaced by a high frequency hiss.

The hum was loud, only sound that would mask it inside was the car with engine running.

A member on here - @glynis has Ménière's disease and recently developed a low frequency hum. Her doctor started her on Nortryptaline and the hum and her head tinnitus disappeared.
I'm sure she'll tell you more about her experience.

You have so much to live for - try to focus on your son - these early days go so fast, try to make the most of them.

Sam.

 

[Paulie87]

@Paulie87 I feel for you.... my tinnitus started one month after my twins were born.

I had a low hum to start with, but it went away and was replaced by a high frequency hiss.

The hum was loud, only sound that would mask it inside was the car with engine running.

A member on here - @glynis has Ménière's disease and recently developed a low frequency hum. Her doctor started her on Nortryptaline and the hum and her head tinnitus disappeared.
I'm sure she'll tell you more about her experience.

You have so much to live for - try to focus on your son - these early days go so fast, try to make the most of them.

Sam.

Thanks Samantha R. My doctor believes I have atypical menieres, as my symptoms fluctuate a lot. I get sound sensitivity, fullness and even hearing loss on occasion. I've had dizziness where I couldn't walk straight and had to lie down, but not severe rotational vertigo, so it's been hard to diagnose.

Apparently the low frequency tinnitus is more common with menieres.

 

[Jkph75]

You are not alone. I have had tinnitus for only 10 months, but it's managed to do a lot in this much time. I started out with some mid frequency tones, now I can't even count them all. I have several low tones one of which is the horrendous low one you are talking about that gets even louder when I lay down. It's like there is a generator in my head. I could sit here all day and describe all the sounds that I have. My sounds change all the time. Everyday is a new assortment of chaos. I have 2 little ones who need me. I went through hell to have them. I'm not about to let this stop me from being with them though some days Idk how I will make it. Today was especially bad as my higher tones have decided to compete with the generator. There has to be a reason for this. It's up to us to find it.

 

[Paulie87]

I'm sorry you're suffering so much Paulie. I have had tinnitus for 36 years. Just recently I started experimenting
with a sound technique I found at this site, and for the first time, I feel like I have found a way to have some impact
on it. I am getting it reduced by about 75%, but then it slowly goes back to baseline. I can't say that I have much understanding at all about this condition, and I assume there are many different forms. I am sure mine is the result of taking cortizone for two weeks due to an extreme reaction to poison oak. I watched a video on YouTube that showed the audio center in the brain as being like a key board and if part of that gets damaged the signals are just going haywire. When I use this sound technique I can literally feel the noise calming down. I will give you the link. http://generalfuzz.net/acrn/

Thanks Jo, I'll definitely try that.

 

[Paulie87]

You are not alone. I have had tinnitus for only 10 months, but it's managed to do a lot in this much time. I started out with some mid frequency tones, now I can't even count them all. I have several low tones one of which is the horrendous low one you are talking about that gets even louder when I lay down. It's like there is a generator in my head. I could sit here all day and describe all the sounds that I have. My sounds change all the time. Everyday is a new assortment of chaos. I have 2 little ones who need me. I went through hell to have them. I'm not about to let this stop me from being with them though some days Idk how I will make it. Today was especially bad as my higher tones have decided to compete with the generator. There has to be a reason for this. It's up to us to find it.

I feel your pain. I measured it between 65 HZ and 75 HZ as a BB noise on Audio Notch and played it to my wife and she thinks it's sounds like a car idling outside. I find it difficult explaining the noise. It's so subjective unless others can hear it.

I really think this low frequency is worse than the higher frequency tinnitus I have, as that can be masked easier. In saying that, I do know that ultra high frequencies would be their own piece of hell.

I don't want to give up either, this condition is so shitty though. Were you diagosed with menieres at all, having low frequency tinnitus? My doctor thinks they go hand in hand. As if tinnitus wasn't already bad enough, Menieres takes 2 conditions which are arguably even worse (Vertigo and drop attacks), adds a frustrating disability like severe hearing loss and then throws in aural fullness for good measure and then to top it off, it's non lethal which means it makes you suffer through each and everyone of these lovely ailments with no end date, while people around you say "Oh, at least it won't kill you".

Great fun!

 

[glynis]

@Paulie87,
Welcome to Tinnitus Talk.
I totally understand what you are going through as go through and been through the horrid symptoms of Menieres and had it l2 years.
Vertigo ,room spins
Bouncy vission
Drop attacks dizziness
Motion sickness
Sick most days
Pressure pain
Hearing loss
Bilateral high pitch tinnitus
Low drone tinnitus
Head tinnitus
Blocked ears
Not been able walk around
Could not bend over
Hard function day to day

Life was really hard and having breathing problems for life also.

I take Betahistine and backed up with
Cinnarazine if needed.
Any help and support I can give you just ask and understand what it's like.
I have white noise generators and also duel purpose hearing aids.

My tinnitus this year went off the scale and really pushed me to the limit and could not cope.
The high pitch bilateral ringing 24/7 was bad enough and developed a low drone sound and I could not mask it and both sounds were in my head also.
I could not sleep and the doctor put me on sleeping tablets.
My doctor said he could not keep me on sleeping tablets and said he wanted try me on Nortryptaline to help me sleep and said he thought my nerves in my head were missfireing and this medication might help as known to help tinnitus.
I had already had head scans,CT scans and angiogram and lumbar puncture spending days in hospital.
Also now awaiting to se my Menieres consultant again and audiology.

I carnt thank my lovely doctor for trying me on Nortryptaline as it's stopped my drone tinnitus and head tinnitus and finally sleeping well.
I'm back at work and enjoying life again.
My sons are grown up age 29 and 21 and have a lovely grandson who's 3 and look after him a lot and I'n school hols and after school and he's a ray of sunshine.

Your life will get better I promise .....lots of love glynis

 

[Jkph75]

Iher't want to give up either, this condition is so shitty though. Were you diagosed with menieres at all, having low frequency tinnitus? My doctor thinks they go hand in hand. As if tinnitus wasn't already bad enough, Menieres takes 2 conditions which are arguably even worse (Vertigo and drop attacks), adds a frustrating disability like severe hearing loss and then throws in aural fullness for good measure and then to top it off, it's non lethal which means it makes you suffer through each and everyone of these lovely ailments with no end date, while people around you say "Oh, at least it won't kill you".

I think you are getting way ahead of yourself here. I was the same way when they first told me that they thought that I had Meniere's Disease. I am already deaf from birth in one ear so getting Meniere's would mean no more hearing for me. Then there are all the things that you read on the internet that will scare you even more. Meniere's Disease is like anything else. It exists on a continuum. Some people have very mild symptoms and others have a more severe case. At this point, it doesn't even sound like you know if you have it or not. I can tell you that you are going to need a lot more than tinnitus and dizziness to get a diagnosis of Meniere's. Have you had a hearing test yet? Without hearing loss that fits a Meniere's profile, they are not going to say that you have Meniere's. And they don't care what your tinnitus sounds like.

I haven't been diagnosed with Meniere's. My hearing is in the normal range (well in my ear that works I have had dizziness but no rotational vertigo. Those are the things they are looking for. I have read of several other people on here who don't have Meniere's but have low frequency tinnitus. As for me I believe that I have Hydrops. It is possible that you have that too. What have you done so far to try to get rid of this? Are you on a low salt diet?

 

[Jkph75]

@glynis

He is adorable!!

 

[Paulie87]

@Paulie87,
Welcome to Tinnitus Talk.
I totally understand what you are going through as go through and been through the horrid symptoms of Menieres and had it l2 years.
Vertigo ,room spins
Bouncy vission
Drop attacks dizziness
Motion sickness
Sick most days
Pressure pain
Hearing loss
Bilateral high pitch tinnitus
Low drone tinnitus
Head tinnitus
Blocked ears
Not been able walk around
Could not bend over
Hard function day to day

Life was really hard and having breathing problems for life also.

I take Betahistine and backed up with
Cinnarazine if needed.
Any help and support I can give you just ask and understand what it's like.
I have white noise generators and also duel purpose hearing aids.

My tinnitus this year went off the scale and really pushed me to the limit and could not cope.
The high pitch bilateral ringing 24/7 was bad enough and developed a low drone sound and I could not mask it and both sounds were in my head also.
I could not sleep and the doctor put me on sleeping tablets.
My doctor said he could not keep me on sleeping tablets and said he wanted try me on Nortryptaline to help me sleep and said he thought my nerves in my head were missfireing and this medication might help as known to help tinnitus.
I had already had head scans,CT scans and angiogram and lumbar puncture spending days in hospital.
Also now awaiting to se my Menieres consultant again and audiology.

I carnt thank my lovely doctor for trying me on Nortryptaline as it's stopped my drone tinnitus and head tinnitus and finally sleeping well.
I'm back at work and enjoying life again.
My sons are grown up age 29 and 21 and have a lovely grandson who's 3 and look after him a lot and I'n school hols and after school and he's a ray of sunshine.View attachment 11941
Your life will get better I promise .....lots of love glynis

Glynis, you are so lovely.

Your grandchild looks so beautiful. My son is in my profile pic. He is my life (as well as my wife and other immediate family). Beautiful people. I am blessed in that way.

I truly think you are inspirational with how you cope. You definitely help give strength to many of us suffering. Please know you can always reach out to all of us when your own times are tough, we are all here to support each other.

Paul

 

[Paulie87]

I think you are getting way ahead of yourself here. I was the same way when they first told me that they thought that I had Meniere's Disease. I am already deaf from birth in one ear so getting Meniere's would mean no more hearing for me. Then there are all the things that you read on the internet that will scare you even more. Meniere's Disease is like anything else. It exists on a continuum. Some people have very mild symptoms and others have a more severe case. At this point, it doesn't even sound like you know if you have it or not. I can tell you that you are going to need a lot more than tinnitus and dizziness to get a diagnosis of Meniere's. Have you had a hearing test yet? Without hearing loss that fits a Meniere's profile, they are not going to say that you have Meniere's. And they don't care what your tinnitus sounds like.

I haven't been diagnosed with Meniere's. My hearing is in the normal range (well in my ear that works I have had dizziness but no rotational vertigo. Those are the things they are looking for. I have read of several other people on here who don't have Meniere's but have low frequency tinnitus. As for me I believe that I have Hydrops. It is possible that you have that too. What have you done so far to try to get rid of this? Are you on a low salt diet?

I have had fluctuating aural fullness, only mostly relieved by grommets, however even with the grommets I still get it sometimes. I have tinnitus which changes frequently, sound sensitivity and have had a flat hearing loss across all frequencies in my left ear which recovered. I have had dizziness, which I called vertigo as things were floating around, but it wasn't rotational.

My ENT diagnosed me with atypical menieres which is basically hydrops. The ENT said loud low frequency tinnitus is generally telling for menieres. It moves around though between predominately my left ear and my head, and the sound sensitivity effects both ears, so I have no idea if that's a menieres thing.

I have not tried a low salt diet yet, outside of a few days of good eating, as after a few days of doing it, if I don't have an immediate result, I just assume it won't work for me. Same with caffeine. My ENT believes I also have intercranial hypertension after looking at an MRI and CT scan of mine. They believe this could contribute, but I've only read of this causing pulsatile tinnitus. I am severely obese though, so they are strongly encouraging me to lose weight as they think this is contributing, but I don't believe it. I think they are clutching at straws.

 

[volsung37]

Right now I have a low drone with pounding pulse baseline (in pace with my heartbeat). This really only annoys me now at night when I'm trying to sleep. Sometimes I imagine I am in a big spaceship and the pulsing drone is the propulsion system while the various higher pitch sounds are the control systems. Helps me to externalise the sounds a bit and not worry so much about them.
Interesting that @glynis mentioned nortryptaline stopping the drone. This might be worth a try. The only thing so far to have stoppped my low drone for any length of time is a bottle of wine and a few beers. If I drink this at night the following day I will not hear the drone for up to 14 hours. Obviously this is not something I want to do too often!
I have had the drone for about 7 months now. Up to now no balance or dizzyness issues.

 

[Jkph75]

I have had fluctuating aural fullness, only mostly relieved by grommets, however even with the grommets I still get it sometimes. I have tinnitus which changes frequently, sound sensitivity and have had a flat hearing loss across all frequencies in my left ear which recovered. I have had dizziness, which I called vertigo as things were floating around, but it wasn't rotational.

My ENT diagnosed me with atypical menieres which is basically hydrops. The ENT said loud low frequency tinnitus is generally telling for menieres. It moves around though between predominately my left ear and my head, and the sound sensitivity effects both ears, so I have no idea if that's a menieres thing.

I have not tried a low salt diet yet, outside of a few days of good eating, as after a few days of doing it, if I don't have an immediate result, I just assume it won't work for me. Same with caffeine. My ENT believes I also have intercranial hypertension after looking at an MRI and CT scan of mine. They believe this could contribute, but I've only read of this causing pulsatile tinnitus. I am severely obese though, so they are strongly encouraging me to lose weight as they think this is contributing, but I don't believe it. I think they are clutching at straws.

Sounds like you have a fantastic ENT. Do you mind if I ask who you see? How much hearing did you lose before it recovered?

You have to give a low salt diet a whole lot longer than that to know if it's working or not. They say it takes 6 months to fully see the effects of a diet change on your health. I doubt it will take that long for you to see the effects. Intercranial hypertension and obesity are tied, as is both of those to Meniere's Disease. They give diuretics for both intercranial hypertension and Meniere's, though you may not even need that. I would be willing to bet my last cent that if you change your diet and lose weight that your problems will go away. You should also start drinking a ton of water that will help too.

Meniere's Disease often occurs in people who are in poor health. Improve your health and the Meniere's symptoms dissipate minus the damage that it has already caused. I am almost envious that you have something so concrete and simple to fix. I feel like I have tried everything and I can't get rid of this thing. I had just had a c-section and was exhausted from being up days on end when my T began. I was probably in the worst physical shape I have ever been, but that was almost 11 months ago now. I would think that I would be fully recovered at this point.

 

[Paulie87]

Sounds like you have a fantastic ENT. Do you mind if I ask who you see? How much hearing did you lose before it recovered?

You have to give a low salt diet a whole lot longer than that to know if it's working or not. They say it takes 6 months to fully see the effects of a diet change on your health. I doubt it will take that long for you to see the effects. Intercranial hypertension and obesity are tied, as is both of those to Meniere's Disease. They give diuretics for both intercranial hypertension and Meniere's, though you may not even need that. I would be willing to bet my last cent that if you change your diet and lose weight that your problems will go away. You should also start drinking a ton of water that will help too.

Meniere's Disease often occurs in people who are in poor health. Improve your health and the Meniere's symptoms dissipate minus the damage that it has already caused. I am almost envious that you have something so concrete and simple to fix. I feel like I have tried everything and I can't get rid of this thing. I had just had a c-section and was exhausted from being up days on end when my T began. I was probably in the worst physical shape I have ever been, but that was almost 11 months ago now. I would think that I would be fully recovered at this point.

Thanks Jkph75,

I appreciate your encouragement. I am in poor health with chronic asthma and coughing fits, IBS and a BMI of 44, so it is encouraging to know if I do the hard yards, there is a good chance of resolving some of these health problems. Certainly when I read about it, menieres is linked with obesity, so it's interesting.

As for my ENT, I am located in Sydney, Australia and see Dr. Sean Flanagan and Professor Paul Fagan. http://sydneyentclinic.com/sean-flanagan/sean-flanagan/

Not that my ENT believes in it, but have you tried anti-virals at all? They certainly work for some people.

As for your symptoms being hard to fix, you mentioned you had a C-Section? I've read a lot of reports of women giving birth who have these symptoms come up and eventually go or taper down. My symptoms are almost identical to yours. I had a flat hearing loss in my left ear across all frequencies which then recovered within a month or so after. Otherwise the sound sensitivity problem seems to be more brain related as it doesn't matter which ear I hear from. Don't know what type of tinnitus you have though?

Let me if you want any more information.