Hello April,

I can share in your frustration. My ENT was also on the ATA list and treated me about the same as yours did. I have seen 4 ENT's and they are at a lost as to what to do other than the routine checks and maybe an MRI if you have pulsatile t like I do. I think seeing Dr. Levine is probably money well spent because he knows the condition very well. He may recommend a doctor that is covered under your insurance afterwords. Since you are making the trek to Massachusetts I would write everything down beforehand so you can give him an instant understanding of your symptoms. I would be very interested in how he handles you and what he says. I would also ask his opinion on how long he thinks it will be before there is a cure or at least a drug to neutralize the noise. All the best to you April.

-Mark

Mark said it well. And you're smart in holding onto your dollars, April. For better or worse the truth is there is no immediate avenue to take that will fix your tinnitus and I would strongly advise not to throw money at vitamins, arches formula, t-stop or other suppliments as it is money wasted. When you do spend, make sure it counts, as you are doing by seeing a _speciaist_. ENTs are good for cleaning your wax, otherwise I always deal with audiologists and tinnitus specialists. All my best to you, April, and nice to see your watching your dollars. We all need to.

Boy when I think about the money I spent during the first 6 months, including over $500 on accupuncture. Best thing I did was get a hearing test and a full physical to make sure there were no medical symptoms. Looks like you are going down the right path.

I spent the equivalent to 24 thousand dollars (in quetzales, Guatemalan currency), on meds, ENT, MRI, homeopathy, acupuncture, reflexology.... nothing helped to stop the t to keep rising its volume. Perhaps the only med that helped me was Remeron. Other than that I will save my money because I learned that currently there is nothing doctors can do for us, either you are in China or in the US. The doctor that gave me Remeron told me that this drug will help to fix the "hearing system in my cortex". I have no idea what that means, but I have experienced a little bit of reduction on the noises with this drug. I hate medications though, so I have been trying other alternatives like being exhausted (going for long walks) and taking Camomila tea every night. Sometimes works, some others don't.

I understand the awful feeling of needing some help now! When I first got it, I was petting my dog bending over. When I got up, I heard all kinds of noises, then the tinntus started. It never went away since. I went to the ENT right away. He gave me an MRI and laughed and said he also had it and I would get used to it.
I then joined the Tinnitus Ass. They send out a publication three times a year with alot of info. on research that they are doing. I guess alot of our men coming back from war has tinnitus now. I also found that the tinnitus clinic in Oregon was very useful. They try to help you understand your situation with tests, and support. They have an Otolaryngologist, a professor of Orolarynogology and an a certified audiologist with extensive experience in tinnitus. They also work with hypercusus. I have a kind of T. that gets worse with loud sounds. Not hypercusus they said, just a rare form. My husband has the form that when he plays loud TV or something he masked it. We have been together since we were in highschool, married 43 years and I never wanted to strangle him before. This is very hard for us. I can't talk to him about it because he says it makes him think about his tinnits. So I joined this group hoping to be able to gain some understanding of what other people are going through, getting some needed support and understanding for myself etc. Anyway the clinc is Oregon Health and Science University or OHSU. The phone number is 1-503-494-7954. If this is to far away, they can direct you to a research clinic nearest you.

I wish you all the luck in the world. It will get easier.

Kasnandra

Thank you all for your replies.
I am having such a hard time dealing with this right now and feel panicky. I just want something to take this away. My ears and head hurt at times and I really don't have much faith in doctors. I am pretty depressed, but really don't want to take an antidepressant as medication is what made my tinnitus worse to begin with. At least I think so. I am trying to cope day by day, but it seems to be getting harder. Sometimes I just break down in tears and can't imagine living like this the rest of my life as I feel that I have no quality of life. I may go to see Dr. Levine, but I am doubtful that any doctor can really help and my funds are limited. I also have an appointment set up to see about TRT, but I am not sure this is the right approach for me due to the Hyperacusis and it is very expensive. I have a pink noise CD and I am trying to listen to it when I can. How do people habituate to this? It seems some do and others have a difficult time with this. I just pray that this gets better in time, but so far nothing. Thank you for the support.

April,
I'm really sorry you're going through this. It just continues to hurt that you and many others are suffering.

I felt like this previously and then I decided to try to make the best of it. What choice is there. This is where the secret lies and the beginning to better health.

Take a step back and a deep breath and say I currently have T, but I'm going to allow myself to feel ok. This noise is not going to hurt me and I'm allowed to enjoy things even if there is ringing/hissing/buzzing or an annoying neighbor.

Mandy says "don't make it important". Four words that mean so much. Begin with a distraction. Be real kind to yourself (because you suffered to much). Therefore select your favorite distraction. It may be a hobby, a nature walk alone or with a friend, reading, etc. as there is no limit. Find additional favorable distractions even things you may not have done since your were a child. (Can't keep me off of a bike)

A transformation process starts to happen. First you were distracted from T, and because of this you felt and your body felt relaxation therefore causing a reduction in anxiety and stress. This gives your mental and physical body a chance to increase its immune system and ward off the worst symptoms of T. Add a good diet and the process accelerates. It is a process, but you begin to feel better over time. Eventually this becomes noticable to you and your T is reduced. On the worst T days, you can deal with it because you-April have developed a coping mechanism.

I still have bad days, but I really keep them to myself and I think as positive as possible that this will pass and I'm going to make the best of it.

We all have worries and concerns, but April allow yourself the opportunity to look at things optimistically. It takes just as much effort and you're giving yourself a chance to feel better.

I too have tinnitus and TMJ... unfortunately there is no REAL CURE for either of them. They can do certain things [bite correction- ect.] to attempt to alleviate some of the symptoms, but all in all- it's probably not worth the hundreds or thousands of dollars for treatment.

At least not for me- I'm pretty broke.

But hey, if you can afford paying a lot of money for minimal results, it's all up to you. I'd personally do it myself if I could afford to.

Good 'ol American healthcare system... ha ha.
But in all seriousness- Good luck.

I have both TMJ and T - TMJ since 1991 and T since 1994. When my TMJ flares, my T gets worse. The doc probably felt disallignment in your jaws and since there is no cure for T, thought the mouthpiece might relieve some of the T's intensity. Mouthpiece worked great for my TMJ and thus my T, but only when TMJ was flared. Don't use anymore.