Hi, Jack from the Boston Area...

[Jack Mccarthy]

Long time sufferer from a plane flight during work in which I got severe barotrauma and foolishly took the return trip back a week later upon the advice of an ENT in my network thinking everything should be fine but ended up with tinnitus upon the plane's descent. Bad advice which I now have to live with for the rest of my life. Thankfully it's a mild case, but it can still interrupt my concentration and sleeping and I've been taking benzos for the past 9 years to mitigate it. Been living with the side effects to help keep my sanity from the ringing.

Need to find a new neurologist who specializes in Tinnitus as the one from Mass Eye/Ear retired back in 2011. Now looking at Lahey Clinic in New York City as an option, but the 3.5-4hr trip isn't comforting since I've been told not to fly ever again for the possibility of my condition getting worse.

 

[DinaS]

Hi Jack,

I also just joined this forum and I too am in the Boston area. I am currently under the care of a brilliant Neurotologist at Mass Eye & Ear. This is the top place in the whole country for eye/ear/throat, etc., so I am not sure if a trip to NYC would be worth your time and expense.

I have T but also had TTS (tensor tympani syndrome) in my left ear last year. I had surgery for the TTS last March while I was living in NC. The surgery was a success but my ear drum never healed after that surgery (found out in Aug.) which caused all sorts of new issues in my left ear. I just had surgery to repair my eardrum in January and it's healing nicely. I still have the T (pulsatile) but have learned to manage it. What concerns me now is possibly having TTS in my other ear. I REALLY don't want to go through more surgery!

You mentioned being on benzos for 9 years - I assume to deal with T and the anxiety that it causes you. Was that 9 yrs straight? Has a Doctor suggested an SSRI to you? If so, any luck with them? (I have tried 3 brands and all gave me unacceptable side effects).

I cannot sleep without my white noise maker. I have a few different kinds - currently using Dohm I purchased from Bed, Bath & Beyond.

 

[Jack Mccarthy]

Hi Jack,

I also just joined this forum and I too am in the Boston area. I am currently under the care of a brilliant Neurotologist at Mass Eye & Ear. This is the top place in the whole country for eye/ear/throat, etc., so I am not sure if a trip to NYC would be worth your time and expense.

I have T but also had TTS (tensor tympani syndrome) in my left ear last year. I had surgery for the TTS last March while I was living in NC. The surgery was a success but my ear drum never healed after that surgery (found out in Aug.) which caused all sorts of new issues in my left ear. I just had surgery to repair my eardrum in January and it's healing nicely. I still have the T (pulsatile) but have learned to manage it. What concerns me now is possibly having TTS in my other ear. I REALLY don't want to go through more surgery!

You mentioned being on benzos for 9 years - I assume to deal with T and the anxiety that it causes you. Was that 9 yrs straight? Has a Doctor suggested an SSRI to you? If so, any luck with them? (I have tried 3 brands and all gave me unacceptable side effects).

I cannot sleep without my white noise maker. I have a few different kinds - currently using Dohm I purchased from Bed, Bath & Beyond.

Good to hear from someone local. Do you know who replaced Dr. David Levine since he retired to Israel? I only heard there was a female doctor who's speciality was more toward dealing with the psychology of tinnitus and not the neurology of it. Even getting an appointment with her was impossible as I was put on a waiting list since last October. I've only been prescribed Klonopin after going through one clinical trial with him since he felt it was the most effective and yes, I've been taking the drug for 8 years straight (forgot I had a 1 year wait to see Dr. Levine). My current ENT will only prescribe the dosage I have of several mg/day due to the fact he knows Dr. Levine so well and frankly I'm scared he'll retire within the next 10 years and I won't have someone who'll be willing to prescribe it to me. Thankfully, I don't suffer from anxiety and the drug is used for it's effect in desensitizing the nerves to dull the noise of the ringing in my ear from what I understand.

 

[DinaS]

Good to hear from someone local. Do you know who replaced Dr. David Levine since he retired to Israel? I only heard there was a female doctor who's speciality was more toward dealing with the psychology of tinnitus and not the neurology of it. Even getting an appointment with her was impossible as I was put on a waiting list since last October. I've only been prescribed Klonopin after going through one clinical trial with him since he felt it was the most effective and yes, I've been taking the drug for 8 years straight (forgot I had a 1 year wait to see Dr. Levine). My current ENT will only prescribe the dosage I have of several mg/day due to the fact he knows Dr. Levine so well and frankly I'm scared he'll retire within the next 10 years and I won't have someone who'll be willing to prescribe it to me. Thankfully, I don't suffer from anxiety and the drug is used for it's effect in desensitizing the nerves to dull the noise of the ringing in my ear from what I understand.

I am new to the area so I don't have a long history with MEEI. If you would like, I can give you the name of my Neurotologist. Another suggestion is you may want to call the main line there and ask if there is a similar Doctor to the one you were put on a wait list for. A year wait list is ridiculous! But I guess that shows you how in demand doctors at this facility are. Every time I go there for an appointment, I see people leaving with suitcases. People travel to MEEI from all over the place. That's how good it is.

did your previous Doctor do imaging (MRI, MRA, CT Scan)? Some forms of T are curable but I am sure you know that. I can't imagine being on Klonopin for 9 years straight. You definitely need another Doctor who specializes in the treatment. I have to believe there are other ways to deal with this other than being on benzos permanently.

 

[Jack Mccarthy]

I am new to the area so I don't have a long history with MEEI. If you would like, I can give you the name of my Neurotologist. Another suggestion is you may want to call the main line there and ask if there is a similar Doctor to the one you were put on a wait list for. A year wait list is ridiculous! But I guess that shows you how in demand doctors at this facility are. Every time I go there for an appointment, I see people leaving with suitcases. People travel to MEEI from all over the place. That's how good it is.

did your previous Doctor do imaging (MRI, MRA, CT Scan)? Some forms of T are curable but I am sure you know that. I can't imagine being on Klonopin for 9 years straight. You definitely need another Doctor who specializes in the treatment. I have to believe there are other ways to deal with this other than being on benzos permanently.

Yeah, I've had an MRI which included a close look at the auditory canal since it's all in my right ear. What SSRIs have you tried and do they supposedly work even with the side effects? I'd be curious who you saw at Mass Eye/Ear as well. It's hard to find a caring specialist. Usually the ones that suffer from a mild case of it themselves are the best since they can relate.

 

[STi]

Hello and welcome to tinnitus talk....I'm in Rhode Island.

 

[Jack Mccarthy]

Hello and welcome to tinnitus talk....I'm in Rhode Island.

Hi, glad to meet you. How are you coping with your tinnitus?

 

[STi]

I'm use to it now....it's just an everyday annoyance .....I have bigger issues than this T....So whatever lol

 

[DinaS]

Yeah, I've had an MRI which included a close look at the auditory canal since it's all in my right ear. What SSRIs have you tried and do they supposedly work even with the side effects? I'd be curious who you saw at Mass Eye/Ear as well. It's hard to find a caring specialist. Usually the ones that suffer from a mild case of it themselves are the best since they can relate.

Interesting that you didn't have an MRA - which checks the blood vessels. I am sure there's a good reason why you didn't have that too, but I've had all 3 imaging procedures mentioned above (not at the same time). Nothing came up, which I am both grateful for and sad at the same time!

I've tried Zoloft, Celexa and Luvox. Celexa gave me the absolute worst side effects and only after 1 dose. You're supposed to give it time to build up in your system, 4-6 weeks, but I couldn't take it. Allegedly the side effects go away after the build up period. They all raised my anxiety level and some made me feel so sick that I couldn't take it. I do take Xanax as needed. Unlike your T, mine is stress and anxiety related. No Doctor ever told me that but my T started after I went through some pretty brutal stuff. (these meds were/are prescribed by my PCP)

Dr. Santos is who I see at MEEI. He is wonderful. I was referred to him by my Neurotoligist in NC when I moved here in April.

 

[Jack Mccarthy]

Hello and welcome to tinnitus talk....I'm in Rhode Island.

Interesting that you didn't have an MRA - which checks the blood vessels. I am sure there's a good reason why you didn't have that too, but I've had all 3 imaging procedures mentioned above (not at the same time). Nothing came up, which I am both grateful for and sad at the same time!

I've tried Zoloft, Celexa and Luvox. Celexa gave me the absolute worst side effects and only after 1 dose. You're supposed to give it time to build up in your system, 4-6 weeks, but I couldn't take it. Allegedly the side effects go away after the build up period. They all raised my anxiety level and some made me feel so sick that I couldn't take it. I do take Xanax as needed. Unlike your T, mine is stress and anxiety related. No Doctor ever told me that but my T started after I went through some pretty brutal stuff. (these meds were/are prescribed by my PCP)

Dr. Santos is who I see at MEEI. He is wonderful. I was referred to him by my Neurotoligist in NC when I moved here in April.

Thanks for the info. Not sure if an SSRI would help if mine isn't stress or anxiety based T. I'll have to read about other's experience here to find out if it's working for them due to barotrauma. Yeah, since my injury is work comp related, I think doctors are reluctant to do other tests like an MRA. I had to go out of my way to find one who'd do an MRI.

 

[Carlos1]

@Jack Mccarthy hi Jack I too am from the area and my T was due to dental work. I have had TMJ surgery at Mass Gen and I then was put on Klonopin and been on a dose of .25 - .50 at nite. I have noticed over the last couple years the K does help quite down the ringing the problem is the body building tolerance. I have been doing a cycle of being on .5 for couple weeks then cutting down to .25 couple weeks and that's when I get louder ringing which then I go slowly back up to .5 and I keep doing this so hopefully my body doesn't get use to the same dose.
T is a beast and we need to get a handle on it or as we all know it can have devastating effects on normal life.
Stay Strong

Carlos

 

[DinaS]

Thanks for the info. Not sure if an SSRI would help if mine isn't stress or anxiety based T. I'll have to read about other's experience here to find out if it's working for them due to barotrauma. Yeah, since my injury is work comp related, I think doctors are reluctant to do other tests like an MRA. I had to go out of my way to find one who'd do an MRI.

Your insurance should cover an MRA if the Doc feels it is warranted. Good luck to you!