I Need Some Advice or Guidance — Possible TMJ? Upper Cervical Chiropractor Experiences?

[jmasterj]

I also have a question for others. Does your tinnitus fluctuate as you walk? Because after this spike mine certainly does. It is rather weird in that my tinnitus seems to fluctuate as my head moves up and down.

 

[jmasterj]

Well, I am quickly running out of options. I went to a specialized TMJ dentist and they could find nothing wrong. It is so disheartening and frustrating. I am slowly coming to the realization that I am stuck with this new high pitch. It just saddens me that for once life was really going my way and I had a positive outlook towards my future. Now this has really brought me back to a dark place. I had hope for Mutebutton, but if it is going to take time to get to the US I am not sure how I will be able to cope.

 

[SillyMama]

Hi, jmasterj,
I'm dealing with intermittent tinnitus that changes with my head/neck position. Sometimes it's louder or quieter, and sometimes I can even get it to stop, but I can't figure out how to maintain a position that keeps it stopped. For example, in commuter driving, starting and stopping... The constant shifting of my head makes it really hard to find that neutral position. My tinnitus makes my eyes jerk with it, which makes everything more difficult.
I'm a little bit scared of letting a chiropractor mess with my neck. First, I plan to take some classes to learn the Alexander Technique, which is training in whole body posture... widely used by professional musicians, performers, and actors.
I'm rather optimistic that it will help me. I'll let you know.

 

[jmasterj]

Thanks @SillyMama It is as bad as ever this morning throbbing away. The strange part again if I push in front of my ears around the temporal bone I can nearly take the ringing away. If I also scrunch my neck and look straight up it almost goes away. The TMJ dentist mentioned that it seems to be eustachian tube related based on my symptoms. I did have a cold when this started, but it has been 3 months. I am going to find another ENT and get another opinion, since the previous didn't really give me the time of day. Both of my ears click when I swallow, which some say is normal, but others say it is not. It also may make sense why I have a burst eardrum from flying.

 

[SillyMama]

Thanks jmasterj.
Are you having any eye movement with pulses of tinnitus? When mine started, I called it vertigo, but it's really just my eyes jerking with the tinnitus noise. That makes me feel off-balance, but I'm not truly dizzy.

 

[jmasterj]

No eye movement that I am aware of or dizziness, yet anyway. I first tinnitus sounds was a "eeeeee" sound. With this new change it is a high pitched shrieking sound, but I can take that away by scrunching my neck back or pushing near my temporal bones. It is bizarre which makes me think it is something physical versus hearing loss.

 

[jmasterj]

Another week and another upper cervical adjustment. Still no change in tinnitus. I still have the ability to scrunch my neck back or push around my temporal bones and nearly take the tinnitus away. I have another appointment with the UCC this week. The ear fullness sensation I had for the last almost four months seems to have gone away. I tried to enjoy the holidays and just forget about it, but it was a tough one this year.

 

[Lane]

Another week and another upper cervical adjustment. Still no change in tinnitus.

@jmasterj -- I've been getting weekly physical therapy treatments for the last several months, with a fair amount of time being spent on my neck issues. Impact on tinnitus has been fairly minimal. But this past week, I mentioned my right shoulder area, and she worked on it extensively, as well as going down my right arm, and my upper right area above the shoulder blade. Interestingly, I've gotten a sustained 10% reduction in tinnitus volume since having all this work done on my right shoulder and arm. -- You may want to ask your health practitioner (chiropractor?) about this.

 

[jmasterj]

I thought I'd post an update again. I still have been seeing the chiropractor and have 3 visits left on his three month plan. I really haven't had any change. Initially he was adjusting me every other week, but now it has almost been every week. I am getting a second opinion from another ENT in a few weeks for the possible perforated ear drum. After that I am going to take Lane's advice and look into physical therapy.

The good news is that I have quit taking amitryptaline for sleep. One of its side effects is weight gain, so between the drug and general depression I have gained about 30 pounds since this new spike.

Here's to hoping the Neuromod device comes out soon or that I can maybe jump into the phase three trial at the University of Minnesota.

 

[jmasterj]

Another week and another adjustment. I am nearing my 3 months, so I am not sure if I should continue or not. From my understanding it is that with cervical adjustments you can only heal after you have held your adjustment. At least I have another ENT opinion before I have to make a decision to continue.

 

[jmasterj]

Well I am officially at my 4 month mark since this new spike. I am guessing it is permanent at this point. I am just so sad and depressed at this point. Life was finally going good for me and things were looking up now this has just brought me down so far. I don't even feel like I am living anymore, but rather just sleep walking through the day to get by.

I still have no idea what caused this spike. I got to thinking that I did have to listen to some earbuds for someone at work and the volume was too high. I immediately pulled out the earbuds and didn't have any changing in ringing at all. I still don't remember if that happened the same day or not. I just woke up one morning with the new spike.

I just Neuromod would release their device or give me some hope, because it has been a tough day today.

 

[Digital Doc]

Well I am officially at my 4 month mark since this new spike. I am guessing it is permanent at this point. I am just so sad and depressed at this point. Life was finally going good for me and things were looking up now this has just brought me down so far. I don't even feel like I am living anymore, but rather just sleep walking through the day to get by.

I still have no idea what caused this spike. I got to thinking that I did have to listen to some earbuds for someone at work and the volume was too high. I immediately pulled out the earbuds and didn't have any changing in ringing at all. I still don't remember if that happened the same day or not. I just woke up one morning with the new spike.

I just Neuromod would release their device or give me some hope, because it has been a tough day today.

Sounds like the earbuds could have done it. Those things are terrible, and they include a set with every new phone we all buy.

Sometimes the spike can be delayed. In my case it did not start until the next day, and it peaked about 4 days later.

I would not assume the spike is permanent after 4 months. Mine is from end of September, and it is still changing, and generally improving, although it is 2 steps forward, and 1 back.

 

[Lane]

I am guessing it is permanent at this point.

Four months feels pretty early going to me. -- I think it's way to early to assume any permanency. -- Best!

 

[jmasterj]

Well two weeks left with the UCC until I have to make a decision on what to do. After three months I really haven't had any change, so I'm not thinking it is worth it. I have another opinion appointment with an ENT on Monday and quite frankly I am sure it is going to be more of the same. I am going to possibly try some physical therapy and massage of the neck and possible acupuncture.

I am on the list for the next phase of the trial at the U of Minnesota, so we will see. I wish Neuromod would hurry up!

 

[Mattv]

I have had very good luck with neck massage. It took me quite a while to find a therapist who knew what she was doing. She does very deep intraoral work and trigger point on my SCM''s. There is no doubt it helps. I doesn't eliminate it. The funniest thing is that when she is actually performing the massage, my tinnitus is almost nill. I think the reason is that I am focusing on the pain (yes it often hurts) of the massage, and it distracts me from the tinnitus. In fact, distraction seems to be the best therapy in general.

 

[jmasterj]

I went to another ENT for a second opinion and he couldn't find anything. He is suggesting I go to a tinnitus clinic to look at maskers or CR neuromodulation. I am kinda meh on that idea since I can hear perfectly fine and it doesn't really help the root cause. I was woken up at 6:30 this morning with pulsating tinnitus that shortly after went down to its regular tonal state. I still feel it could be in my neck.

About the only thing the ENT suggested was Flonase for a month. I really wish Neuromod would release or I could get in the Minnesota study.

 

[Lane]

I still feel it could be in my neck.

I've been massaging all around my head, ears, face, neck, etc. since I got this tinnitus a year ago. Just in the past couple of days, I discovered some areas behind my ears that were really painful (along the edge of the atlas, right behind the ears). I've only been focusing on these areas for a day or so, but feel the deep massaging I'm doing is somehow affecting the tinnitus. We'll see what happens in the coming days.

 

[jmasterj]

I had another CT scan on Friday to look for weak bone structures in my ear and everything us normal. I am started acupuncture on Wednesday from a Chinese MD, so we will see if there is any relief. Otherwise, I am going to see a neurologist about my neck and then I am pretty much out of options.

 

[Contrast]

Well I am officially at my 4 month mark since this new spike. I am guessing it is permanent at this point. I am just so sad and depressed at this point. Life was finally going good for me and things were looking up now this has just brought me down so far. I don't even feel like I am living anymore, but rather just sleep walking through the day to get by.

I still have no idea what caused this spike. I got to thinking that I did have to listen to some earbuds for someone at work and the volume was too high. I immediately pulled out the earbuds and didn't have any changing in ringing at all. I still don't remember if that happened the same day or not. I just woke up one morning with the new spike.

I just Neuromod would release their device or give me some hope, because it has been a tough day today.

Be very careful with headphones (in ear devices) with tinnitus, I only use them for video editing seldomly.

what originally caused your tinnitus?

 

[Lane]

I am going to see a neurologist about my neck and then I am pretty much out of options.

I've had major neck problems for literally decades, and have discovered many different ways a person can address them. Some involve going to various health care practitioners, others rely soley on doing things for ourselves at home. I continue to keep my open open for anything else that I've yet to discover. In my mind, it's kind of a never-ending odyssey, always trying to figure out things that will help me "manage" my situation. -- I've discovered a lot of "little" things can make a very big difference.

 

[jmasterj]

Be very careful with headphones (in ear devices) with tinnitus, I only use them for video editing seldomly.

what originally caused your tinnitus?

Wax buildup in my ear. Basically I have always had trouble with wax in my left ear and sometimes laying on a pillow it would push the ear canal closed and would snap (the best way I can describe it) when I would move my head from the pillow causing a ringing. It happened one time on morning in 2011 and never stopped.

 

[jmasterj]

I still think the odd part is that my left ear is the ear that is ringing primarily, but if I tilt my head to the right the right ear begins to ring. I guess it could be part of the somatic influence on tinnitus.

 

[jmasterj]

Ugh, what a rough morning. It seems to be worse than before. This has been such a strain on my relationship, my family relationships, and my work. I wish this would just go away. I am almost at the 5 month mark of this spike. I am pretty much screwed. If I didn't have too much to lose I'd probably just end it. Please Neuromod release your device!!! Please help us all!

 

[Lisa Harrington]

I have had very good luck with neck massage. It took me quite a while to find a therapist who knew what she was doing. She does very deep intraoral work and trigger point on my SCM''s. There is no doubt it helps. I doesn't eliminate it. The funniest thing is that when she is actually performing the massage, my tinnitus is almost nill. I think the reason is that I am focusing on the pain (yes it often hurts) of the massage, and it distracts me from the tinnitus. In fact, distraction seems to be the best therapy in general.

Matt, I'm in Somerville, MA. I've read a lot of your posts and we have extremely similar smyptoms. My care for my T is being managed by the Tinnitus program at Mass Eye and Ear. Who is your massage therapist? I'm working with 360 Neuromuscular out of Waltham. They have two people on staff who specialize in Tinnitus. Let's talk!