Hi from Pittsburgh, Pennsylvania!

[Rosemerry]

Hi everyone! I'm a long time tinnitus - I hate to say the word sufferer - harborer maybe? I dunno, anyway. Mine came from Meniere's Disease diagnosed almost 30 years ago - right around the time my sister was diagnosed with breast cancer and died, but I don't know if that was the reason. My dad, and a couple aunts and uncles also had it, so I think perhaps there's a genetic component? Recently, the tinnitus has been getting louder so I took to Twitter one night and found this forum. I'm so excited to be here and learn from you all! For example, I didn't realize I had habituated to the tinnitus, but that makes perfect sense as it's always there but most of the time, I lead a normal life. I have total hearing loss in the affected left ear, so I'm used to telling people to speak into my good hear and walk on my right side.

The last few days it's been loud one day, quiet the next, today it's loud again. Yesterday my yoga teacher - I get private lessons once a week although I'm not good about practicing daily - wants me to do the balance part of my asana practice regularly. She also taught me the nostril breathing technique to help when I get a little panicky - breathe in for 4, hold my nostril closed for 4, breathe out for 8. I told her I actually read something on this forum about the nostril breathing too.

I hope I can be of help to someone, having lived with it for so long. But am also grateful for any support too. Thanks for having me, and I look forward to getting to know everyone! xoxo Rosemary

 

[Dominic1955]

@Rosemerry nice to meet you, I live in Waverly Pennsylvania!
I am suffering from meniere disease and I lost my hearing in my left ear 13 months ago
I have loud T and I am not habituated, now I also developed terrible vertigo
Could you give us an idea of how your symptoms progressed or improved?
How is your vertigo?
Dom

 

[Rosemerry]

Hi Dom!
When I was first diagnosed with Meniere's, I had terrible vertigo. Then as it progressed, I had a couple drop attacks which I think meant my ear was effectively burnt out. Not great, but the good news was I never had vertigo again. However, when I did have the vertigo, I was prescribed very low doses of Valium/Klonopin to help and it did the trick. I was seeing a psychiatrist at the time who prescribed it and helped with me deal with my fear of more attacks. This was over 25 years ago so I'm not sure what they're prescribing now, but that's what helped me. Then, I guess I got habituated to my T and it was a relatively mild annoyance until recently where it's really annoying.

Nice to meet you too and let me know if you have any other questions. Where is Waverly - eastern PA?
Rosemary

 

[Dominic1955]

I live 30 minutes north of Scranton.
How long did the vertigo last ? Years?
How is your hearing?
I am worried that I am not going to improve
Dom

 

[light rain]

I also had adjusted until recently. My T started in 2010 right before our first Christmas after my husband died suddenly of a heart attack at 44. I also wonder if stress initiated the tinnitus.

Also my Dad has Menieres but Dr doesn't seem to think this is related. Nerve testing shows I have unilateral weakness and I don't have spinning around vertigo but a feeling of falling over. Did you have any nerve testing done? I'm supposed to have an MRI done soon.

 

[Rosemerry]

Hi Dom
I can't remember exactly since it's been so long ago, but the vertigo lasted less than a year I think. I have almost no hearing in the left ear but the hearing in my right ear is fine. Don't worry, the vertigo should improve. Are you taking anything for it?

 

[Rosemerry]

I am so sorry to hear about your husband! I think I have read that it Meniere's can be genetic - I think it's odd that me, my dad and a couple of his siblings all had it. I don't recall having any nerve testing done, but possibly this time around I will. What does the nerve testing show?

 

[light rain]

Rosemerry

I had a battery of tests that seem to pinpoint it being the balance nerve. The one test puts hot and cold water in your ear and causes nystygmus. I had very little response from one ear. The doctor however is not very forthcoming and I am not entirely sure how they can be so specific. I asked about Menieres being a possibility but he dismissed it.

Also I am puzzled because the hearing issue and T is on the right. Dr suggested whatever is going on with the left may be starting on the right but I think he just wants the MRI done (lol).

I just signed on to the forum myself not realizing there was even such a place. Do you have balance issues in general or just with a menieres attack. My Dad had to retire because of drop attacks. I'm not entirely sure how the balance issues are with menieres. So I'm just trying to compare. Thanks!

Lynn

 

[Dominic1955]

@Rosemerry how many episodes of vertigo did u have and do you remember when it first started did you develop vertigo with hearing loss and tinnitus and did the vertigo last several days initially?
Or did the vertigo occur after the hearing loss?
Thank you

 

[Dominic1955]

@light rain is your dad better from the menieres ?
Did he also have hearing loss and tinnitus ?
Dom

 

[light rain]

@light rain is your dad better from the menieres ?
Did he also have hearing loss and tinnitus ?
Dom

My Dad has lots of health issues so its hard to say if his current dizziness is related to the menieres. However I don't think he's had any hearing loss and he hasn't had drop attacks in a long time. We talk on the phone but I live several states away and neither of us can drive that far so I haven't seen him in years. I did ask if he had any testing done and he doesn't recall anything like I had. For him the T and the drop attacks affected him but it seems like it got better. His dizziness now seems low blood pressure and afib related.

 

[Dominic1955]

@light rain, thank you for your response.
How are you doing with your symptoms, do you get vertigo?
and did u have your mri?

 

[Dominic1955]

thank u

 

[light rain]

@light rain, thank you for your response.
How are you doing with your symptoms, do you get vertigo?
and did u have your mri?

Hi Dom

I don't know if I have true vertigo because it is not the complete spinning around thankfully. I have a feeling of falling over to one side and being unbalanced. I tried balance therapy with mixed results. It helped but not as much as I thought. I do have episodes though were it is like someone is pressing a reset button where I'm tilting over and over. That makes me feel sick. I fell and hurt my arm and shoulder back in Dec and ended up in the ER. That made me scared so the therapy did help with that. Being afraid of falling can make it really inhibitive.

My MRI isn't for another week. I'm in a rather rural area so only a couple of places around here to get one. I had one scheduled before but the Dr didn't really want an open machine so I'm going to try this place with a wide bore.

Do you have Menieres or are they still checking things. I supposedly don't but I wonder since my Dad does.

 

[Dominic1955]

I am pretty sure that I have meneires had 4 episodes of vertigo since I lost 60% of my hearing on my lt ear 13 months ago. Last episode was bed lasted 1 hr of vomiting and I could not walk for 4 hrs. I am not sure what to do next, I did see a otoneurologist but he was not helpful, I will see someone else in 2 weeks
Luck to you Dom

 

[Rosemerry]

Hi Dom
I don't remember how many episodes of vertigo I had - it was so long ago. I think I had tinnitus first, then vertigo, then hearing was the last to go. After a couple drop attacks, no more vertigo. No more hearing either! Rosemary

 

[Rosemerry]

Hi Lynn,
I no longer have balance issues or Meniere's attacks, just tinnitus that has gotten louder lately. Rosemary

 

[Dominic1955]

@Rosemerry i am glad your vertigo is gone, sorrry about your hearing loss. Do have any balance problem now?
It's unusual for menieres to burn out in just one year, I hope I develop similar outcome.
My tinnitus is very loud and I hope to habituate
Did you have complete hearing loss?

 

[Rosemerry]

Hi Dom!
Yep, I'm glad the vertigo is gone too, but the result of it being gone is pretty much total hearing loss in the left ear. I have no balance problems now. It's hard for me to remember, but I truly do think the entire menieres experience lasted within a year. I have total hearing loss in the affected left ear - right ear is still pretty good.

I was just talking to the PA in my doctor's office today, and he said he would characterize my Menieres as being inactive.

When it was active, I saw a psychiatrist who prescribed the benzo's to help with the vertigo and balance, and to talk about my fear of drop attacks. I even saw a couple surgeons and we talked about minor brain surgery - compressing the 8th cranial nerve - I don't know if they still do that. One surgeon said if I was his daughter, he would recommend the surgery, and another surgeon said if I was HIS daughter he would NOT recommend it lol. I played it safe and didn't do anything, just waited it out, and really I've had 25 good years. I'm confident of the same outcome for you!

As far as the tinnitus, I read you take Xanax to help at night, right? I had to do the same when it seemed really loud this weekend. I took the tiniest dose - a half of a half of 2.5 mg - twice one night but it helped. During the day when I'm at work it doesn't bother me as much. I'm also confident you'll habituate soon! Rosemary

 

[Dominic1955]

@Rosemerry , thank you for your response, its amazing that you improved so quickly from this terrible illness
I am at work and I had to use all my energy to stay and finish my day.
I have an appointment next week with otoneurologist ( 2nd opinion) will see what he suggests
keep me posted, I like your story !
Dom

 

[Dominic1955]

@Rosemerry how are you doing?
How is your tinnitus?
I have been diagnosed with Ménière's
Dom

 

[Rosemerry]

@Dominic1955 Hi Dom
Good to hear from you! I'm doing pretty well actually. My tinnitus seems to have settled down somewhat - some days louder than others - but I just ignore it and get on with my day. I've been meditating daily and that's really been helping. Did you just recently get a definitive diagnosis for Ménière's?
Rosemary

 

[Dominic1955]

@Rosemerry, how are you doing?
I am still struggling with the loud tinnitus and fluctuating hearing loss, I had a drop attack 1 month ago but I don't feel dizzy now.
Dom

 

[Rosemerry]

@Rosemerry, how are you doing?
I am still struggling with the loud tinnitus and fluctuating hearing loss, I had a drop attack 1 month ago but I don't feel dizzy now.
Dom

@Dominic1955 Great about the dizziness. How did the appt/2nd opinion with the otoneurologist go? RM

 

[Dominic1955]

@Rosemerry I was told that I have menieres disease, he suggested gentamicin injection but my vertigo is not so bad, I only had one drop attack 6 weeks ago. My problem is the intrusive tinnitus, ear fullness and hypercusis.
Dom
How is your tinnitus are you able to habituate again?

 

[zombiechick]

@glynis may have some insight @Dominic1955 on your vertigo attacks

 

[moomoo]

Hi fellow Pittsburgher. I see that you said you habituated to the tinnitus - that's good. I too live a normal life but sometimes it is so hard to ignore the tinnitus on bad days. I keep a calendar and found that I can almost project when a bad loud day is forthcoming. I take melatonin on those nights. I think the key is to concentrate on things to make the noise subside to the subconscious.
How about those Penguins! ! Looks like the Pirates will never get out of the basement.
Do love this city.

 

[Rosemerry]

@Rosemerry I was told that I have menieres disease, he suggested gentamicin injection but my vertigo is not so bad, I only had one drop attack 6 weeks ago. My problem is the intrusive tinnitus, ear fullness and hypercusis.
Dom
How is your tinnitus are you able to habituate again?

@Dominic1955 Hey Dom, when my drop attacks started to be few and far between, it was a sign that the Meniere's was kinda burning out. Left me with T and deaf in my left ear but I was happy that the DA's and vertigo stopped. I'm hopeful that I can habituate again; it's only been a little over a month since it got louder. My T is not terrible - some days it's louder than others. For example, yesterday it was annoying but I just ignored it for the most part. Today it's better - still in the background but kind of meshes in with other background noise. I slept beautifully last night - didn't get up once which is rare - so that helps too! I have trained myself to welcome the T as kind of a white noise so I haven't been having many sleep issues. I did go to an arena concert the other night but wore Down Beat earplugs and the noise level was quite comfortable, although I was a little nervous going. I haven't noticed any worse for the wear from the concert. xoxo RM

 

[Rosemerry]

Hi fellow Pittsburgher. I see that you said you habituated to the tinnitus - that's good. I too live a normal life but sometimes it is so hard to ignore the tinnitus on bad days. I keep a calendar and found that I can almost project when a bad loud day is forthcoming. I take melatonin on those nights. I think the key is to concentrate on things to make the noise subside to the subconscious.
How about those Penguins! ! Looks like the Pirates will never get out of the basement.
Do love this city.

@moomoo Woo hoo another Pittsburgher! This seriously makes my day! I know - what is up with that? I can almost predict it too. I totally agree with you about concentrating on other things so it takes a backseat. For example, when I'm at work it rarely bothers me. I will have to remember about the melatonin - sleep isn't too bad now thankfully. Did you go to the Pen's parade? I went to a Pirate game a few weeks ago - I swear the main draw for them is our adorable PNC Park! xoxo RM

 

[Dominic1955]

@Rosemerry how are you ?
I definitely have Ménière's and significant vertigo, are you better?