Has anyone developed tinnitus along with TN? I recently developed tinnitus following a Rascal Flatts concert. I have seen my PCP and referred to an ENT. They discovered that I have mild - moderate hearing loss in both ears and recommend hearing aids which will bring my hearing up to snuff and the tinnitus will be masked when I have Hearing aids on. I have an appt soon for starting the process for hearing aids.
My TN is on my right side. Mine is not constant but will come in major flare ups that can last for several months. I believe two whiplash injuries were the catalyst for my TN. My ear on the right has louder tinnitus sounds than my left. Perhaps it is just the one ear as it really is hard to discern if the left ear is involved. I also have TMJ on the right side and a small aneurysm on my right side brain. My neurologist says the pain in my right ear is the TN not tinnitus and I do in fact get pain in my ear in flare up of TN. Now I have the pleasure of listening to a constant humming high pitched tea kettle along with the TN, TMJ and occipital headaches - right side as well. Is it possible to have tinnitus be a part of TN?
When I ask doctor's what is the cause of all of these things on my right side - bad luck is my answer to each condition and where it is located. I do have other nerve pain in my body due to spinal stenosis, deg. disk disease and fibromyalgia. I have dx with autonomic nervous system dysfunction as well. So, do I have a nerve disease through out my body and slowly new areas of pain manifest themselves? What type of a physican can dx this other than to say 'live with it'
(1) You're dealing with multiple neurological disorders and problems. They will tend to interact, and it may not matter exactly which is which or which of them is most responsible for the right side pain.
(2) With this combination going on, I'd suggest respectfully that you be very careful about any solutions that may be recommended to you for "TMJ". This disorder is very imprecisely defined, and I personally believe much over-diagnosed and over-treated. Unless you have positive X-ray evidence of deformity or debris in the TM Joint, it may be VERY inadvisable to have surgery to correct problems there.
(3) There are papers in medical literature suggesting that Tinnitus can sometimes be caused by vascular compressions of a ganglion in the auditory nerves. MVD has been used with some success to correct cases where the compression is clear on MRI.
(4) Likewise, hearing aids do appear to help some people to suppress their awareness of tinnitus, but it's debatable as to whether the disorder actually goes away. I have tinnitus also, experienced as a high-pitch hissing in both ears, somewhat similar to what one might hear when your head is underwater and a speed boat passes by with a high-speed prop in the water. I was exposed to a lot of jet noise during my firsts career as an officer in the Air Force. My hearing aid hasn't helped the tinnitus in my right ear, and so far I haven't chosen to afford the additional $2700 for another hearing aid in my left. I wouldn't want to generalize unfairly, but you'd best not upset yourself if you still find yourself hearing the hissing after you can hear the rest of the world better too.
(5) The pain in your ear might be nervus intermedius neuralgia, sometimes called "geniculate" neuralgia. Piercing ice pick pain deep in the ear is a primary symptom of that disorder, and it is treated much the same as Type II Trigeminal Neuralgia.
(6) With your combination of medical problems, I suspect you need to be seen regularly by a Board Certified neurologist, and occasionally by an orthopedist who specializes in spinal problems. If you're dissatisfied with the feedback you've gotten on your right side difficulties, then get a second opinion from another neurologist. If herniated discs are involved in your spine, then talk to your physicians about newer outpatient treatments that can repair herniation without fusing discs in surgery. At least two such treatments are now in trials.
I have had tinnitus off and on for many years, a slight ringing in both ears. Since getting tn the tinnitus has gotten more severe and occurs every day. It is worse in the morning with a loud buzzing like standing under high voltage power lines along with ringing. I now get dizzy spells and sudden partial deafness that can last from a couple days to several weeks. My regular dr sent me to a ent clinic and they are testing for menieres disease. The next step is an mri of the inner ear to look for small benign tumors.
Scott, I have always had tinnitus too. And it has gotten worse with TN. Because it is in both ears now and louder. I have had several hearing tests since TN started. It's probably time for another one. The last one about a year ago showed slight hearing loss on high pitched sounds on the left ear. But recently I did notice a dizzy spell. But that's it. Good luck to you. I hope everything goes well !!! Min
Scott said:
Greetings Judyd,
I have had tinnitus off and on for many years, a slight ringing in both ears. Since getting tn the tinnitus has gotten more severe and occurs every day. It is worse in the morning with a loud buzzing like standing under high voltage power lines along with ringing. I now get dizzy spells and sudden partial deafness that can last from a couple days to several weeks. My regular dr sent me to a ent clinic and they are testing for menieres disease. The next step is an mri of the inner ear to look for small benign tumors.
I know that hearing aids are not to be assumed to work for each individual with this problem. I am looking into any/all modalities that might provide me some relief of pain and now noise. I 've long ago learned that it is never one thing that will ease the condition but a multi task assault and then a lot of accepting that which cannot be changed. I believe that one can have a trial of the hearing aids with reimbursement. I will not be making any large investment without some chance of return. The hearing aids simply mask the tinnitus by providing better hearing. I know I am stuck with this ringing/hissing/popping and clucking in my noggin for life and it hurts psychologically. When at the computer, having the radio on (music) helps some. Watching TV - does not.
I do have valid TMJ findings years ago and have a night guard to wear. It is old and thus I have made an appointment to see the orthodontist to find out if it is time to replace it. My tinnitus varies in sound when I move my jaw, my neck and move from sitting to standing and reverse and when I lie down it is at a higher level of sound. I have not found anything yet re postural changes to tinnitus but sure there is something out there.
I see a pain doctor - anesthesiologist for many years and do get injections into the facet joints in my spine, as well as epidermal injections. Occasionally we need to do the coccyx as I have pain there too that radiates out and down. Back surgery is on the horizon at some point but I am holding off until my gate is truly bad and my quality of life worse than it is currently. I do water exercise 2-3 times a week as well as regular walking. I have had two opinions as to what should be done Neurosurgeon - lamenectomy and spinal fusion, orthopedic - just the lamenectomy as the fusion will cause more issues down the line and not provide me with much pain relief in the long run compared to the lamenectomy (wrong spelling I know!)
I do have a neurologist and thought to be one of the best in the state. She has told me that the Autonomic Nervous System dysfunction and Trigeminal neuralgia will play off of each other and quite possibly are the cause of strange waves of dizzy like sensations I get in my head. It is not room spinning dizziness nor vestibular (had that testing done 2 years ago ) but a wave in my head that I can feel and I get weak, increase heart rate and feel like I am going to tip over if standing. I have had one 'drop fall' resulting in a broken arm. I fear another fall and at 58 (today!!) I don't need a broken hip or other major break. I have experienced that these spells come on in high stimulating places - large group of people chatting, restaurants that are busy and noisy, in stores, and I am always talking when they happen. Strange by far. I try to avoid known nosy places if possible. I am going to a Red Sox Game in June (cannot avoid that as it is 100th anniv year) and last year I found it hard. I will bring ear plugs and if I had an Ipod I would use that to drown out the noise of well intended fans.
"You're dealing with multiple neurological disorders and problems" This is a concern of mine that I might have some nervous system disease or disorder. My sister has Parkinson's. My neurologist states that I should not assume that I will get it as well. In fact she stated that my problems are worse than my sister's. I though she was worse off than I. Perspective.
I have been tossing back and forth whether to see someone in Boston. We have Lahey Clinic, Mass Eye and Ear and Beth Israel within a one hour drive. When my tests are all done and info provided, I will make a decision as to 2nd opinion and it will be in Boston. I am in R.I.
yes, I have problems with my right ear and have not dealt with this. Just living with the ringing in my ear and hearing loss also! It's so funny that they medical feild knows very little about this. When I first began having symptoms I went for hearing tests, and with a known jaw problem, they told me that I had menieres disease! lol, I was in my early twenties and basicly they just did not know anything about the connection or relationship of the joints and their possible affects on your ear canal. I also have slight drainage, at times.
Sunshine, you have been dx with hearing loss and tinnitus and have TN, TMJ as well? I have not had mention of Menieres Disease yet. What do you do to ease your symptoms? It is hard for all of the many doctors we see to read up on all of our many conditions and put them all together. Sometimes I feel that their area of knowledge is so constrained that they cannot assume some correlation might exist between symptoms and dysfunctions. That is where we come into play to be our own advocates.
The ENT that I saw last week told me to just live with it - tinnitus - or get hearing aids. I was visually upset and she said I had to get control of my emotions as that would make the condition worse. She mentioned my pre-existing fibro and depression medication and noted that I had to again get myself under control. I could have kicked her. When I told her I already was living with mod/severe nerve pain she look doubtfully at me. I asked her if she had read my full medical history and she noted she had not!!!!!!!! I informed her. Her response was - calm down. I asked re holistic modalities and she seemed shocked. She gave me a brochure on gingko Bil0ba and noted not to spend exorbitant monies as nothing could help tinnitus. Such a relief to hear that. I asked re craniosacral work and again she looked astounded. She said to let her know if it worked and the practitioner so she could refer out. She is not interested in atypical patients nor in dealing with the emotional well being of patients. I won't go back to her.
Thus - no doctors cannot always correlate coexisting conditions to one dx because they don't care or don't have the knowledge and won't state thus.
Thanks Scott, Seems you are in a holding pattern as well for a dx. I cannot but help to think that there is some corelation to having both Tn, TMj and Tinnitus all on the same side. When does common sense come into play in dx's..
thanks
Judy
Scott said:
Greetings Judyd,
I have had tinnitus off and on for many years, a slight ringing in both ears. Since getting tn the tinnitus has gotten more severe and occurs every day. It is worse in the morning with a loud buzzing like standing under high voltage power lines along with ringing. I now get dizzy spells and sudden partial deafness that can last from a couple days to several weeks. My regular dr sent me to a ent clinic and they are testing for menieres disease. The next step is an mri of the inner ear to look for small benign tumors.
Min, I had a hearing test and had loss of the lower tones in my right ear which is the opposite side of my tn. The tinnitus is in both ears with it usually a little loader in the right ear but not always. Good luck to you also and I hope you have many pain free days without any more dizzy spells ahead!
Scott
Min said:
Scott, I have always had tinnitus too. And it has gotten worse with TN. Because it is in both ears now and louder. I have had several hearing tests since TN started. It's probably time for another one. The last one about a year ago showed slight hearing loss on high pitched sounds on the left ear. But recently I did notice a dizzy spell. But that's it. Good luck to you. I hope everything goes well !!! Min
Scott said:
Greetings Judyd,
I have had tinnitus off and on for many years, a slight ringing in both ears. Since getting tn the tinnitus has gotten more severe and occurs every day. It is worse in the morning with a loud buzzing like standing under high voltage power lines along with ringing. I now get dizzy spells and sudden partial deafness that can last from a couple days to several weeks. My regular dr sent me to a ent clinic and they are testing for menieres disease. The next step is an mri of the inner ear to look for small benign tumors.
I am in a holding pattern waiting to see if the insurance will cover and how much of the mri. I was told they have to eliminate other things to get to the diagnosis of menieres if that is what I have. I believe also there might be a connection between the diseases also as the body is interconnected within itself. The body is a wonderful thing until it gets derailed! Common sense not always is in the equation it seems. I always say that if you transfer your pain/what you feel to the doctors even for a minute that things would be a lot different! Take care and I hope you have many pain free days ahead!
Scott
Judyd said:
Thanks Scott, Seems you are in a holding pattern as well for a dx. I cannot but help to think that there is some corelation to having both Tn, TMj and Tinnitus all on the same side. When does common sense come into play in dx's..
thanks
Judy
Scott said:
Greetings Judyd,
I have had tinnitus off and on for many years, a slight ringing in both ears. Since getting tn the tinnitus has gotten more severe and occurs every day. It is worse in the morning with a loud buzzing like standing under high voltage power lines along with ringing. I now get dizzy spells and sudden partial deafness that can last from a couple days to several weeks. My regular dr sent me to a ent clinic and they are testing for menieres disease. The next step is an mri of the inner ear to look for small benign tumors.
Thanks for the response and info. I am going to my dentist on the 30th and will discuss this with him. It has been awhile since I have been so it will be interesting to hear what he has to say. He has taken alot of measurements and pictures when I first went to him about 3 years ago or so. I am going for a cleaning that I haven't had since the bad lightning strikes began. I hope that it doesn't cause it to flare up. I have heard the "I don't know" alot of times but haven't been told "depression and mental, emotional" yet. I am going to do some research before I go to the dentist. It is always good to hear about other avenues to explore and maybe find something that will help. Thanks again and I hope you have many pain free days ahead!
Scott
sunshine said:
Scott,
I have been around the block with problems relating to ear and jaw! It all started when I was in my early twenties and post orthodontics. A move to Alabama created what I now believe was an equalibrium problem, and the tinnitus began then also. This was when I was told that I had meneires. I"m so surprised to hear that they are still resorting to this diagnoses and not addressing possible bite/joint or jaw disorders. Personally, I hate to see you go around with Ent's who know nothing about teeth and joints. I don't know the details of your situation, but I can tell you that I wasted a whole lot of time with medical doctors who knew nothing, nor did they ever even suggest a bite disorder or joint problem. I'm serious! I was told I had ear infections that I did not have! I was told I had allergies, that I did not have. As honest as I can be, it was not until I went to a Biosethetic dentist that I was finally diagnosed properly with unseated condyles. You would be surprised to know that your jaw can discern even a micrometer of discrepancy in you bite and the joints can create so many other symptoms! It is a problem in dentistry and medicine that has been for a very long time. Also, I believe it is a money issue.. If it is your bite, a bioesthetic dentist can help conservatively. They will do a very extensive test called a Tomogram or some are using what is called an ICat. Special care and training is involved in bioesthetics as it relates to the joints and tooth relationship. OBI Institute has a list of dentists who are practicing all over the country. I might do that before I go for any MRI's! REally.. they will do anything to us to make a buck sometimes and then tell us "we don't know."
Scott said:
I am in a holding pattern waiting to see if the insurance will cover and how much of the mri. I was told they have to eliminate other things to get to the diagnosis of menieres if that is what I have. I believe also there might be a connection between the diseases also as the body is interconnected within itself. The body is a wonderful thing until it gets derailed! Common sense not always is in the equation it seems. I always say that if you transfer your pain/what you feel to the doctors even for a minute that things would be a lot different! Take care and I hope you have many pain free days ahead!
Scott
Judyd said:
Thanks Scott, Seems you are in a holding pattern as well for a dx. I cannot but help to think that there is some corelation to having both Tn, TMj and Tinnitus all on the same side. When does common sense come into play in dx's..
thanks
Judy
Scott said:
Greetings Judyd,
I have had tinnitus off and on for many years, a slight ringing in both ears. Since getting tn the tinnitus has gotten more severe and occurs every day. It is worse in the morning with a loud buzzing like standing under high voltage power lines along with ringing. I now get dizzy spells and sudden partial deafness that can last from a couple days to several weeks. My regular dr sent me to a ent clinic and they are testing for menieres disease. The next step is an mri of the inner ear to look for small benign tumors.
No problem with ranting or venting, this site is a good place to do so. We understand your frustration and the pain. I am truly sorry that you have had a rough time and gotten a bad deal for so long. I hope you can find the best treatment and get better every day! I learn all the time from this site and the members stories and successes and failures. Unfortunately alot of drs/dentist/ health care professional are not held accountable for the damage they do. That is why I always recommend researching the best you can before going to the health professionals. Thanks again for your info and experiences and hang in there! Scott
sunshine said:
I just have to add one more comment because this issues makes me so upset after all! My whole life has been turned upside down because of stubborn, untrained, unrelenting rivalry between medicine, dentistry and Oral Surgeons. I was twelve years old when an orthodontist decided that I needed braces. He refused to listen to my pain symptoms of ear, joint and even lock jaw! He wasted over four years of my life, ruined my right joint, created the problems with tinnitus and spent my parents money for NOTHING. All of my teeth relapsed only one year post ortho! I was twenty years old by the time it was discovered by an out of state dentist that what I actually had was a jaw disorder called retrognathia. So I finally plan with caution at the age of 40 to go forward with the proper treatment, and BINGO.. The oral surgery folks at a teaching hospital completely ruined my face, joints, nerves, teeth and throat! Oral Surgeon number one, sent me for ENT evals after he damaged my joints and refused to diagnose and treat! Oral Surgeon number two, DID NOTHING.. it' goes on and on with these folks who are not being held accountable, nor are the being trained in school to treat the whole mouth and most of them do not admit that the joints can cause things like "back pain, neck pain, sinus pain, migraines, leg pain and even other organs! ok.. i'm ranting!!! Many problems of this nature can be attributed to the jaw. not always, but more times than medicine can admit, because no one is training them in these areas.. (just my two cents) my ear problems would not exist if it weren't for poor dental care!!!
Dentists are on the whole miserably mis-trained in the recognition and assessment of neurological pain, Sunshine. I would be much surprised if this is not equally true of so-called "Biosethetic" dentists. We've published demographic studies of the patient population here at Living With TN, under our Face Pain Info tab in the site menus. In those studies, I assessed outcomes when a dental practitioner is the first professional to see a patient whose pain is neurological in origin. In a sample of somewhat over 400 cases, fewer than one in four of the dental practitioners recognized what they were seeing, and referred the patient immediately for treatment by a neurologist or other neurological specialist.
I personally believe that bite, occlusion, and TMJ problems are still very imprecisely defined and perhaps vastly over-diagnosed and treated by practitioners who are financially self-interested. For our members who may be considering bioesthetic dentistry, please be aware that this sub-school of dentistry is also not without its controversies. It is expensive, and the science underlying the dental model it is based on, seems quite shaky. The following may be worth reading and thinking about: http://www.dentalwatch.org/questionable/bioesthetic.html
Thanks for weighing in Red, it is good to have more than one side of any form of treatment. Thank you for the link, I will read it when I get a little more time. This is what makes this site great! As I use "alternative" therapy as part of my treatment plan I am always interested in what else is out there. I also am an advocate for thorough research of any treatment and practitioner. I also believe that dentists have done more harm than good in misdiagnosing TN. Since having TN I am very leery of having any dental work done at all for anything. I have followed your postings and have learned a great deal from them.
Sunshine. I will also research and look at the info you have provided. Believe me I do research and look at everything before doing anything. Your concern for me is wonderful and I have concern for you and all of us afflicted with the monster(s) within.
I truly appreciate both of your inputs as I am sure many others do! Keep up the good work! Thanks again,
Scott, what I find interesting in your last response to me... is that your tinnitus hearing loss was in the opposite side of your TN. Well when I told you that my hearing loss was in my left side high pitched sound..I have a slight loss. WELL that is the opposite side of my TN. BUT now I am bilateral....but.. I have always gotten the tinnitus on both sides,, in both ears. It's weird that the hearing loss is in the OPPOSITE ear of the original TN side. STRANGE!!! I wonder how many other people have this...
Sunshine, although I have not been treated myself for "occlusion problems" or TMJ, I have talked with many patients over the past 17 years who have been -- quite a number of them members here on Living With TN. I have also read fairly widely on issues of contemporary dental treatment, in order to appropriately refer patients to specialists who may be able to help them. Even dentists and endodontists admit in their own literature that a significant number of chronic face pain cases emerge not from naturally occurring biological processes, but from errors and mis-treatments by dentists. And the literature on TMJ is littered with case reports of failed treatments for poorly-defined TMJ "syndromes" that turned out not to be TMJ at all.
I made the statements above from that background, and I stand by what I've said. The science beneath so-called "bio-esthetic" dentistry is questionable, the costs are high, and the qualifications of its practitioners are highly questionable in the evaluation or treatment of neurological conditions whose symptoms overlap those of more common dental problems. Other forms of dentistry also suffer from these debilities. None of this means that we can or should choose to give up the services that dentistry and orthdontics legitimately provide. But it does suggest that there is ample room for expanding the very few hours of training which dental schools provide their students, in the recognition and referral of non-dental forms of pain in the face and head.
I can tell you this much! My bite has not moved an inch, nor have my joints deteriorated one single bit since treating with a bioesthetic dentist. Prior to this, I could show you countless photos of my changing bite for over forty years after treating with standard dentists and oral surgeons. My bite has remained stable for ten years!!
sunshine said:
Red, I speak from a place regarding people with known TMJ problems or with TMJ pain along with TN. I'm not saying that bioesthetics can necessarily cure TN. Please don't misunderstand me. I do know that as it relates to TMJ Bioesthetics are specifically trained and experienced beyond what is given to them in medical school. I cringe when I hear of people having TMJ because I know what these docs can do for this condition to halt further damage to the joints. Cheers!
Richard A. "Red" Lawhern said:
Dentists are on the whole miserably mis-trained in the recognition and assessment of neurological pain, Sunshine. I would be much surprised if this is not equally true of so-called "Biosethetic" dentists. We've published demographic studies of the patient population here at Living With TN, under our Face Pain Info tab in the site menus. In those studies, I assessed outcomes when a dental practitioner is the first professional to see a patient whose pain is neurological in origin. In a sample of somewhat over 400 cases, fewer than one in four of the dental practitioners recognized what they were seeing, and referred the patient immediately for treatment by a neurologist or other neurological specialist.
I personally believe that bite, occlusion, and TMJ problems are still very imprecisely defined and perhaps vastly over-diagnosed and treated by practitioners who are financially self-interested. For our members who may be considering bioesthetic dentistry, please be aware that this sub-school of dentistry is also not without its controversies. It is expensive, and the science underlying the dental model it is based on, seems quite shaky. The following may be worth reading and thinking about: http://www.dentalwatch.org/questionable/bioesthetic.html
I couldn't agree with you more about their training. After what I've lived through for over 35 years, it makes me sad and angry at the same time. Some are coming around to understanding how what they do can affect more than just our teeth, but we must look at the teaching institutes and the Medical Associations for help in further training orthodontists, dentists and Oral Surgeons with regard to things of this nature. I just wonder, if you did a thorough study (maybe you have) of how many TN patients had or have had underlying dental problems, early dental interventions or mistreatment by orthodontists and dentists what the numbers would be? I'm angry Red. Very angry at the fact that I went through years of dental care without proper treatment and diagnoses and when they said that I had meneirse disease at the age of 20, what in the world was I to do with that? It took twenty more years to find the truth of what ailes me. There is a disconnect Red. A true disconnect between medical doctors and dentists and I still have to stand up for good dentists who are victims of poor training in their field. Take Care
Let's try to make this a teachable moment for all who are involved with the thread.
I realize that you are angry, Sunshine. Many pain patients get very polarized, and that response is quite understandable to a physician's or dentist's incompetence or lack of compassionate engagement with patients. There is a balance to be struck, however between our own feelings and the needs of other members. When you have something to contribute here that is pertinent to an expressed concern or need of others who post to our forums,then I won't hassle you (or anybody else). It is legitimate to relate your own experience. But I'll weigh in if I see a thread being diverted from its original member concerns. That's what I read as happening in the present thread.
Beyond that concern, if someone seems to be over-generalizing or advocating for a particular approach to treating face pain, then I or other Moderators may weigh in with questions. It is legitimate to ask "Says who? -- where is the published work that supports this assertion? What is the medical evidence?" As pointed out in the link I provided earlier, the relative efficacy of bio-esthetic dental practice doesn't seem to have been established in controlled randomized trials. Likewise, you won't find the term in any of the millions of abstracts in the NIH Pub Med database. That omission should give us reasonable pause.
Feel free to comment on dental issues when they arise, or to discuss your own experience. However when you make assertions that practitioners of some branch of medical practice are "lying" because their conclusions differ from yours, then you can expect to be at least minimally edited. We won't support slander or defamation here.