I'd Like to Say It's Nice to Meet You, But...

Jessikweh

Member
Author
Apr 19, 2015
32
31
Australia
Tinnitus Since
01/2013
Cause of Tinnitus
Unknown. Misdiagnosed as Meniere's Disease.
While it is nice to meet everyone, it also means you're probably in a similar situation to myself, & that isn't fun!
I just joined the site today.

My name is Jess. I'm a 21-year-old student living in Australia. In 2013, I was diagnosed with Meniere's Disease. The vertigo, headaches, mood swings, nausea have all become manageable. However, the tinnitus has not. It's been two years & I have not learned to deal with it in the slightest. & each time I have a Meniere's attack, the tinnitus becomes permanently louder (not my hearing, that's perfect for now!). It's in both ears (worse in my right) & it sounds like my head is constantly roaring. Life has definitely been difficult & my biggest pet peeve is when people who don't have the condition say "just ignore it" or "yeah I know how you feel." No you most certainly do not!

But that's me & my condition! Hope to talk to you soon :)
 
& each time I have a Meniere's attack, the tinnitus becomes permanently louder (not my hearing, that's perfect for now!).
It's hard for me to suggest the following as a treatment not proven in a clinical trial in relation to tinnitus, but I thought I would mention cold laser therapy (also known as low-level laser therapy). I, myself, underwent 10 hours of clinic grade therapy and saw a decent boost in my hearing thresholds over a 2-month period:

www.tinnitustalk.com/threads/my-introduction.1862/#post-39035
www.tinnitustalk.com/threads/my-introduction.1862/

While the treatment did improve my hearing up to 25db at 8 kHz, it did little for my tinnitus (at the time). I still consider the treatment "interesting" in the sense that it clearly had some effect on my hearing, and as a consequence I started corresponding with several other patients who had gone through the therapy - one of them also suffered from MD, specifically:

https://healingmenieres.wordpress.com/

I tracked down testimony from the person who hosts the above blog (which can be seen here):

www.tinnitustalk.com/threads/my-introduction.1862/page-4#post-60596

I also spoke with a woman who underwent therapy in the same clinic as I did, but who otherwise resides in Australia (but who also underwent LLLT in Adelaide):

  1. http://laserhelpfortinnitus.blogspot.de/
  2. www.tinnitustalk.com/threads/low-level-laser-therapy-lllt-for-tinnitus-%E2%80%94-experiences-dr-wilden-etc.295/page-9#post-73178

As I say, it is difficult to recommend something which is unproven in a clinical trial, but I have now shared what I know. I leave it to you to decide what to do with the information. so-to-speak.
 
While it is nice to meet everyone, it also means you're probably in a similar situation to myself, & that isn't fun!
I just joined the site today.

My name is Jess. I'm a 21-year-old student living in Australia. In 2013, I was diagnosed with Meniere's Disease. The vertigo, headaches, mood swings, nausea have all become manageable. However, the tinnitus has not. It's been two years & I have not learned to deal with it in the slightest. & each time I have a Meniere's attack, the tinnitus becomes permanently louder (not my hearing, that's perfect for now!). It's in both ears (worse in my right) & it sounds like my head is constantly roaring. Life has definitely been difficult & my biggest pet peeve is when people who don't have the condition say "just ignore it" or "yeah I know how you feel." No you most certainly do not!

But that's me & my condition! Hope to talk to you soon :)

Welcome Jessikweh! You are definitely in the right place, even though I think we all would agree we'd rather not have to be here.
 
First of all I have to say you should be able to feel as beautiful as you look. Nice pic. I have the same condition here. Just recently started taking lipoflavinoid vitamins and small doses of xanax. Seems to be working by helping me not think about it. I hate the haters too. I wish they could hear it.
 
Wow, thanks, everyone :huganimation: My main concern right now is being able to sit my exams. I have three two-hour exams, meaning six hours in total, in silence. I personally can't do that. I think I'd end up having a mental breakdown, lmao. Someone offered to send me an in-ear white noise maker which would help SO MUCH (but sadly I'm not sure if they were legit or not), which would make life easier, since I can't take in an ipod due to "cheating possibilities." :( I've tried almost every treatment under the sun & had nothing help. It's one thing accepting it's never going anywhere, it's another to actually learn to live with it!
 
@Jessikweh: Hi - welcome to the forum. I have a colleague who had meniere's disease for years. In your case...were just diagnosed or had it for a few years?
Intratympanic steroid injections -may- assist for your situation, to being helpful at the early stage to (possibly) be effective. It's not helpful for late stages. Need to really discuss this with a knowledgeable Dr.
My colleague who is extremely well knowledgeable in this field, states there's really no drug/treatment for it at this time, however takes anti-motion pills and uses a "masker". Her vertigo attacks are random & unexpected. Has good days - sometimes for very long periods. Hopefully, you will have the same.
Since this is affecting your ability to focus for exams, you can discuss this issue with the Disability dept. in your college with an order from the Dr. to provide some form of accommodations to help you pass (if you require a masker or more time).
http://www.dizziness-and-balance.com/treatment/ttg.html
 
Jessikweh,

G'Day and welcome! The only good thing is, you're young enough to hopefully see a cure and live a long and beautiful life without MD and T!

Read what Valentina has written, in the same forum and keep a hopeful outlook.

Have you discussed your condition with your profs at school? Maybe they can allow you to use a sound masker, like the nature sound unit I use to sleep with? Ask to be placed and monitored in a separate room, so not to bother others, with the noise.

People who have no idea what T Is like, don't get it. But don't blame them. When you have no outward appearence of a malady, they can't really sympathize with you. That is, until they get the nasty bugger themselves! I always say, it's like 100 high pitched insects, hissing and buzzing in my head, 24/7/365. They usually say....."you poor bastard!" I say....."thanks so much, for your understanding and sympathy!"

My heart goes out to you, as well as my prayers! keep the faith Luv!

Sailboardman
 
While it is nice to meet everyone, it also means you're probably in a similar situation to myself, & that isn't fun!
I just joined the site today.

My name is Jess. I'm a 21-year-old student living in Australia. In 2013, I was diagnosed with Meniere's Disease. The vertigo, headaches, mood swings, nausea have all become manageable. However, the tinnitus has not. It's been two years & I have not learned to deal with it in the slightest. & each time I have a Meniere's attack, the tinnitus becomes permanently louder (not my hearing, that's perfect for now!). It's in both ears (worse in my right) & it sounds like my head is constantly roaring. Life has definitely been difficult & my biggest pet peeve is when people who don't have the condition say "just ignore it" or "yeah I know how you feel." No you most certainly do not!

But that's me & my condition! Hope to talk to you soon :)

G'day mate! Sorry about having meniere's disease! Sounds worse than just normal tinnitus! Just wondering does tinnitus come and go, just wondering as I don't know much meniere's disease...Anyway, lovin' your rocking red hair!
 
While it is nice to meet everyone, it also means you're probably in a similar situation to myself, & that isn't fun!
I just joined the site today.

Hi Jess :) Welcome! Do your teachers know about your T? I could not wear headsets during exams either, but the professors let me sit close to the windows of my classroom, which was close to the street, so my T could be masked by the traffic noise, somehow. The concentration (and the fear!!) did the rest.
 
Hey @Jessikweh o/

I've a brief affair with the symptoms of MD when I first got T. I was on meds to treat it when my T began, the helped & now I only have minor symtoms of it with actually having the disease itself. My heart goes out to you!

I'm really glad you aren't suffering from it as much & hope you find some help with the T being here with us :)
There's some really positive threads on here & some real advancement on treating diseases such as MD out there.

Here's hoping & take care! :)
 
G'day mate! Sorry about having meniere's disease! Sounds worse than just normal tinnitus! Just wondering does tinnitus come and go, just wondering as I don't know much meniere's disease...Anyway, lovin' your rocking red hair!

Unfortunately no. The tinnitus is 24/7, haven't had a moment's silence since January 2013! & thanks :)
Hey @Jessikweh o/

I've a brief affair with the symptoms of MD when I first got T. I was on meds to treat it when my T began, the helped & now I only have minor symtoms of it with actually having the disease itself. My heart goes out to you!

I'm really glad you aren't suffering from it as much & hope you find some help with the T being here with us :)
There's some really positive threads on here & some real advancement on treating diseases such as MD out there.

Here's hoping & take care! :)

I'm not holding my breath for a MD cure or treatment. Hearing issues don't seem to be too big of a deal compared to, say, curing grey hair or finding a way to stop fingernails from breaking :p but thank you! Hopefully maybe someday a miracle happens :)

Hi Jess :) Welcome! Do your teachers know about your T? I could not wear headsets during exams either, but the professors let me sit close to the windows of my classroom, which was close to the street, so my T could be masked by the traffic noise, somehow. The concentration (and the fear!!) did the rest.

No the teachers don't know & to be honest I don't think they'd care if they did :( but someone has sent me an in-ear white noise piece so I'm really hoping that will work! They'll never know I'm wearing it, heh :p

Jessikweh,

G'Day and welcome! The only good thing is, you're young enough to hopefully see a cure and live a long and beautiful life without MD and T!

Read what Valentina has written, in the same forum and keep a hopeful outlook.

Have you discussed your condition with your profs at school? Maybe they can allow you to use a sound masker, like the nature sound unit I use to sleep with? Ask to be placed and monitored in a separate room, so not to bother others, with the noise.

People who have no idea what T Is like, don't get it. But don't blame them. When you have no outward appearence of a malady, they can't really sympathize with you. That is, until they get the nasty bugger themselves! I always say, it's like 100 high pitched insects, hissing and buzzing in my head, 24/7/365. They usually say....."you poor bastard!" I say....."thanks so much, for your understanding and sympathy!"

My heart goes out to you, as well as my prayers! keep the faith Luv!

Sailboardman

I'm sure there will someday be a cure! But sometime preferably before I lose my hearing would be nice. There's no way I could live with being deaf (or close to it) AND having tinnitus :(
@Jessikweh: Hi - welcome to the forum. I have a colleague who had meniere's disease for years. In your case...were just diagnosed or had it for a few years?
Intratympanic steroid injections -may- assist for your situation, to being helpful at the early stage to (possibly) be effective. It's not helpful for late stages. Need to really discuss this with a knowledgeable Dr.
My colleague who is extremely well knowledgeable in this field, states there's really no drug/treatment for it at this time, however takes anti-motion pills and uses a "masker". Her vertigo attacks are random & unexpected. Has good days - sometimes for very long periods. Hopefully, you will have the same.
Since this is affecting your ability to focus for exams, you can discuss this issue with the Disability dept. in your college with an order from the Dr. to provide some form of accommodations to help you pass (if you require a masker or more time).
http://www.dizziness-and-balance.com/treatment/ttg.html
I have had MD/tinnitus for two years so I think it's probably too late for me :( my vertigo is hardly ever a problem, sometimes to the point where it makes me wonder if I got misdiagnosed!

but thank you so much to everyone :huganimation:it's so good to finally speak to other people who truly understand!
 
I'm sure there will someday be a cure! But sometime preferably before I lose my hearing would be nice. There's no way I could live with being deaf (or close to it) AND having tinnitus

Heaven forbids that should happen. But I did post about a pretty young lady who went completely deaf at 15 and then with unmaskable loud T. She struggled with it first but then decide to accept it. She went on to university against all odds, and there she made a short tinnitus firm which we can view on youtube. She is an inspiration and a guiding light to me for overcoming her tough challenge with a positive attitude. She even said she loves her life despite the T which she just treats it as a slice of her life. You can read more about this and view the film on page 14 (bottom post) and page 15 of the Positivity Thread (a sticky thread at the top of the Support Forum) as in here:

https://www.tinnitustalk.com/threads/the-positivity-thread.3142/page-14

https://www.tinnitustalk.com/threads/the-positivity-thread.3142/page-15
 
Heaven forbids that should happen. But I did post about a pretty young lady who went completely deaf at 15 and then with unmaskable loud T. She struggled with it first but then decide to accept it. She went on to university against all odds, and there she made a short tinnitus firm which we can view on youtube. She is an inspiration and a guiding light to me for overcoming her tough challenge with a positive attitude. She even said she loves her life despite the T which she just treats it as a slice of her life. You can read more about this and view the film on page 15 of the Positivity Thread (a sticky thread at the top of the Support Forum) as in here:

https://www.tinnitustalk.com/threads/the-positivity-thread.3142/page-15

That's really inspiring and so sad at the same time...15 and went deaf with tinnitus...I feel so sorry for that person, I'm glad she's ok...This is why we need a cure, so it will help people live a normal life.
 
Unfortunately no. The tinnitus is 24/7, haven't had a moment's silence since January 2013! & thanks :)


I'm not holding my breath for a MD cure or treatment. Hearing issues don't seem to be too big of a deal compared to, say, curing grey hair or finding a way to stop fingernails from breaking :p but thank you! Hopefully maybe someday a miracle happens :)



No the teachers don't know & to be honest I don't think they'd care if they did :( but someone has sent me an in-ear white noise piece so I'm really hoping that will work! They'll never know I'm wearing it, heh :p



I'm sure there will someday be a cure! But sometime preferably before I lose my hearing would be nice. There's no way I could live with being deaf (or close to it) AND having tinnitus :(

I have had MD/tinnitus for two years so I think it's probably too late for me :( my vertigo is hardly ever a problem, sometimes to the point where it makes me wonder if I got misdiagnosed!

but thank you so much to everyone :huganimation:it's so good to finally speak to other people who truly understand!

I think white noise generates will help you, as it will distract you from the tinnitus! Anyway, good luck with the exams!
 

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