Hi guys, I am 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. 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'm over people telling me to just get over my tinnitus, I'm over others saying the only way out is suicide, I'm over the whole damn lot. I'm 29 and I feel like I've been handed a life sentence.
I can identify. Believe it or not but you probably can habituate to the tinnitus. I thought I would never be able to cope with it, but now it's just a minor annoyance . Most of the time I don't hear it until I listen for it. Try this site . https://www.tinnitustalk.com/threads/does-masking-tinnitus-make-it-worse.7628/
Thanks Melc. How can anyone get used to ultra low frequency tinnitus though? The doctor said many people with menieres have this variety of tinnitus, but it seems no-one does except me. I feel like people are talking about suicide on the tinnitus talk website with far less intense tinnitus than this.
Read about antivirals on this forum. I had awful low oitched tinnitus and some very peculiar sounds at night. I got used to the night sounds, my little lulliby. But the daytime jet engine was tough. Antivirals worked for me. Search on acyclovir, valtrex, famvir on this forum. Good luck! Have faith.
I've started antivirals and John Of Ohio a couple of weeks ago. How long does it usually take to start working?
Which brand of antivirals are you taking? What dose? My tinnitus actually made my head rumble. Eventually, I got used to it.
I was taking generic AntiVirals, but now am moving onto Valtrex as of tomorrow. The dosage is 1000mg, three times a day.
That's good! If you can get name brand Valtrex, all the better. That's what i take. Please keep in mind that many people take a long time before seeing full relief. I believe that Santa (member here) took 6 months or so. Also, bear in mind that the symptoms may get worse before they get better, and this is attributed to the virus fighting back in the early going. I would personally add any other antivirals you can think of like Lysine (take 1000 mg 3x per day on an empty stomach) and Vitamin C (http://www.vitamincfoundation.org/www.orthomed.com/titrate.htm). Good luck and keep us posted!
For me, the tinnitus, actually the autophony which was the most dread part of the distortion, began to cut in and out a little in about a week. Even though that was a small change, it gave me heart. Then i noticed other distortion changed, it didnt go away, it just changed. Then gradually things got better but there would be two steps forward and one back. One day, i noticed the tinnitus was only there after dinner and sometimes and not as bad. It has been 8 years now but that might have taken a month to get that far. Then i was in a sort of holding pattern and i started allergy treatments. Gradually over time almost all my symptoms went away. However, to this day, caffeine is not my friend.
Hi June, Reading what you write is encouraging. My ENT said he did not believe in the viral theory as in his opinion the evidence does not support it, however he said it is low risk and therefore wrote me a prescription for it, to try it out, which I am thankful for. Anecdotally, have you got an idea of how many people have benefited from it?
Based on reports from Dr. Gacek, his son, the Tampa Hearing Center, and other sites (including my primary doctor who is scripting it out now after my success), it's well into the thousands now. Most are reporting the same 90% success rate that Dr. Gacek published in his seminal paper.
Just reading on this forum, a whole lot of people, some with longstanding symptoms have benefitted. Also i know dr derebery continues to use it i believe based on her success with her own patients and some research she has done. I dont know of any stidues that prove it will help everyone. I also dont know of any studies that prove anything else will help everyone yet doctors continue to prescribe more scary drugs as well as destructive surgeries and treatments. They dont always work either and stuff can go wrong. Kudos for your doctor for taking a common sense approach. If they will rx it for chicken pox and cold sores, seems reasonable to rx it for a life altering progressive condition. That is what my family dr did and it changed my life. She said 'you know, if a mother thas cmv (herpes virus i had had recently) the baby can be born deaf. ' sometimes, a good doc doesnt have to see it in the text book to put two and two together.
scot tom i live near tampa and would be interested in anyone who's had tx and is able to work. i pray i won't have to have surgery. marie
Wondering what people's opinions on the laby are if you haven't experienced severe vertigo yet? I had a couple of episodes of what I thought was vertigo but compared to many on here, I just think it was severe dizziness. I had to lie down, couldn't walk straight and go to sleep to wait it out. Objects in my field of vision were kind of moving back and forth a bit. The real problem though is the severe sound distortion and tinnitus mainly in my left ear and head. It booms with all kinds of sounds, and booms loudly when I'm lying down. I test pretty well in hearing tests, but they don't measure how distorted I hear a lot of sounds. I had a hearing loss recently across all frequencies in my left ear which then recovered, but sadly this low frequency generator bass type tinnitus is louder than ever. I would honestly rather be deafened than hear the distortion I get. Air Conditioners, generators etc. all make my booming noises to me which are like the tinnitus but even louder and it's incredibly distracting.
I know exactly what you mean about the distortion vs deafness. I had it. I hated it times 10 and no one knew what the heck i was even talking about, not even the specialists. Hearing aids just make it worse. I will also tell you it is all gone now. Primarily antivirals did the trick but it took time and a pretty heft dose. A laby isnt going to keep the cirus from spreading tomthe other ear. And how many ears do you have? I only had one hearing ear and it had the dreaded distortion. Please give antivirals a try, not just two weeks of a light dose either. Do not expect instant success and do expect setbacks. Yet after a year of this, i am 8 years down the road to the good. Do not give up.
The laby works for some people, but it won't stop the spread to your other ear (25-40%) and it won't work if you have MAV. So make sure you know what you're doing. As June said, try everything and hit it hard with antivirals in case that is what your cause is. I had all the distortion you're talking about plus hyperacusis, and now my hearing is 100%.
I've been reading posts here so as not to feel alone in this sometimes isolating change of life. I thank all of you for taking the time to post your experience. The vertigo, vomiting and brain fog have only been disabling for 15 days now. I've chosen not to tell anyone at work that I was diagnosed with Meniere's disease about 2 yrs ago. I'm not sure how it would effect my ability to work and wonder if I'll have to go on disability. I realize that each case is different but would value hearing about any work/ disability experience. I wish everyone the best possible outcome.
So an upsetting update. I went to a second otologist who works closely with the one who diagnosed me with atypical menieres and he does not believe it's menieres as I do not have a typical menieres hearing loss, nor vertigo. He believes my severe obesity and intracranial hypertension are contributing to my symptoms. This is all so frustrating, I have what I think is the worst tinnitus imagineable although I'm sure it'll still get worse for me. My head honestly feels like there is a nightclub down the street from me playing non rythmic fast bass music. During the day when I'm out it's ok even though I still have some sound sensitivities and distortion, but at night the tinnitus is just overpowering and so incredibly low frequency, the only thing which can mask it is me deeply humming. For a month this horrible condition went away, I have no idea whether it was due to the antivirals or not, but now gradually over a week it's come back. I just can't live like this. My head constantly feels a bit woozy, and the tinnitus is unbearable. The distortions suck too. I guess I'm just coming here to vent as I've tried and I'm failing. I have a newborn baby and as much as it pains me as I look into his eyes and love him more than anything in the world, I think I am going to leave him behind with my wife. I am useless and no good to anyone and am absolutely at my limit with what I can take with this. No-one understands.
You should also get tested for MAV, PLF, SCD, etc. Menieres is not the only disease with those symptoms.