Tinnitus and Trigeminal

General General TN & GPN (Old Site)
21

Since I last posted, I have developed an echoing. At times, I can hear my own voice in my head. I can hear it if I have indigestion. It does not happen each time I talk or have tummy troubles but it is happening. My research suggests it could be related to the Eustachian tube or a hole in the ear bone. The Eustachian tube disorder is PET P for Patulous. The ear bone hole condition is a long name and escapes me at the moment. I have an appt with another ENT at the office I went to two weeks ago. My MRI/MRA came back with no findings and the aneursym unchanged since 6 months ago. Neither of the above conditions will show up on MRA but will on CT. I am once again having to be my own physician and advocate.

Re bio-esthetic dentists or holistic dentists as the one whom I came in contact with some 15 years ago called himself - I would be careful. I was referred to this guy from an ENT who had referred another patient with the exact symptoms I was experiencing - and she had success. This was a last resort attempt at relief for horrible ear pain - same ear as now as a matter of fact that has tinnitus and ? of Eustachian tube. This ear pain was following a whip-lash injury. This dentist promised me hehad a cure and my life was so controlled by horrific nerve pain that I thought I had nothing to loose. I did have some thing to loose - my bite. I was fitted with a custom mouth insert that I had to wear 24/7 and it was awful. I even asked him if it would alter my teeth jaw and was told "NO" Over the course of several months I realized I could no longer chew food. Thought I was crazy till my regular dental hygienist noticed my bite was way off during a routine cleaning session. The holistic dentist unbeknownst to me was charging between 400-800$ per visit - don't worry your lawyer will take care of the bills - when I asked to see statements. My pain did in fact ease up but I could not eat without choking.

In the end, we took him to court. He ended up getting 4000$ from me for moving my jaw around and I had to pay for braces with a real orthodontist of 3300$ to fix what he had broke. We cannot assume that all holistic medical persons are quacks, but please check references and don't assume that if only one doctor has a cure he is good. The adjudicating lawyer said I had given the guy a hard time within his practice. I don't quite know what that meant. However, he is still practicing and has no law suits attached to his name at least online. He has become a lawyer as well as a dentist since I saw him. I hear he is still selling his custom make jaw pain relief system to others with the same tactic he used on me - guaranteed pain relief for life

Judy, judy, judy - echoing

22

forgot to add to this --- "I was referred to this guy from an ENT who had referred another patient with the exact symptoms I was experiencing - and she had success". Upon my follow/up visit with the referring ENT I told him of my situation with the dentist he referred me to. He responded that he was very sorry and had heard that in fact the first gal he referred ended up in my situation as did a patient after me.

Sunshine - If you were fortunate to find a well intended and caring practitioner that is absolutely wonderful. Whether a holistic physician or traditional medicine physician they are some that are not good and some that are. We each will learn for ourselves which is best. I would not tell one to go or not to go to a certain type of doctor based solely on my own experience positive or negative. I would state my experience and advise to be cautious and ask a lot of questions.

Judy

sunshine said:

thanks for such a nice response Scott! People scream about so called "expense", when if they calculated their lifetime expenses for dental care with those who do bridges, root canals etc. etc., it would far outweigh the cost of treating with a bioesthetic dentist who will do it right the first time and might even save your teeth and gums. Think about the mouth as a house or a foundation! If the foundation is not solid, the rest of the house will fall. Gum deterioration? Think about the constant weight of your bite? Common Sense!! If it's not broke don't fix it, but if it's broke, you will have to fix and stabilize the foundation in order to gain balance and harmony in your chewing system. Sometimes it's as simple as a short term bite splint called a MAGO which will gently and slowly help your joints position correctly. I can only share my experience and the MAGO took my pain completely away. The TN and nerve damage I have was surgically caused by standard Oral Surgeons who actually cut and severed my nerves, so outside of looking for alternative therapies, natural nerve healing products and possibly now a new surgeon who specializes in nerves and gum treatments, my problems are permanent.

Scott said:

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

23

they were more than just well intended doctors. They were intelligent, trained and experienced doctors who know what to do about Jaw Joint Conditions.

Judyd said:

forgot to add to this --- "I was referred to this guy from an ENT who had referred another patient with the exact symptoms I was experiencing - and she had success". Upon my follow/up visit with the referring ENT I told him of my situation with the dentist he referred me to. He responded that he was very sorry and had heard that in fact the first gal he referred ended up in my situation as did a patient after me.

Sunshine - If you were fortunate to find a well intended and caring practitioner that is absolutely wonderful. Whether a holistic physician or traditional medicine physician they are some that are not good and some that are. We each will learn for ourselves which is best. I would not tell one to go or not to go to a certain type of doctor based solely on my own experience positive or negative. I would state my experience and advise to be cautious and ask a lot of questions.

Judy

sunshine said:

thanks for such a nice response Scott! People scream about so called "expense", when if they calculated their lifetime expenses for dental care with those who do bridges, root canals etc. etc., it would far outweigh the cost of treating with a bioesthetic dentist who will do it right the first time and might even save your teeth and gums. Think about the mouth as a house or a foundation! If the foundation is not solid, the rest of the house will fall. Gum deterioration? Think about the constant weight of your bite? Common Sense!! If it's not broke don't fix it, but if it's broke, you will have to fix and stabilize the foundation in order to gain balance and harmony in your chewing system. Sometimes it's as simple as a short term bite splint called a MAGO which will gently and slowly help your joints position correctly. I can only share my experience and the MAGO took my pain completely away. The TN and nerve damage I have was surgically caused by standard Oral Surgeons who actually cut and severed my nerves, so outside of looking for alternative therapies, natural nerve healing products and possibly now a new surgeon who specializes in nerves and gum treatments, my problems are permanent.

Scott said:

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

24

Rick, Pulsatile Tinnitus is the one that can be remedied if my memory is correct from all of the reading I have been doing these past few days. It can be caused by plague in an artery or some similar cause. It can also be from what I am now discovering - eustachian tube problems or a hole in the ear bone - Superior Semicircular Canal Dehiscence. Google these conditions to see if they apply to you.

Judy



Rick Bruce said:

I've had tinnitus for decades; with the standard constant ringing, buzzing, crackling and popping. In the Spring of 2004, I woke up one morning with a loud whooshing sound in my left ear. It was a pulsating, whooshing sound that was constant. It kept me up at night and made it difficult to impossible to concentrate at work (DOD engineering/logistics). Now, I was dealing with the standard old obnoxious tinnitus, PLUS a new rare malady known as Pulsatile Tinnitus.

It became impossible to enjoy listening to/playing music, reading and doing my daily crossword puzzles. At work, attending required meetings, putting presentations together for leadership and speaking to groups, etc., was impossible due to all the noise in my head. Then, one morning in Dec. 2008, I woke up and the pulsing noise had stopped. The days slipped by and the whooshing had just gone away! Whoopie!!

In December of that same year (2008), I had my first Trigeminal Neuralgia TN (think Face Taser) attack; onslaughts of pulsing electrical pain jolts to the face, the likes of which, I Never could have imagined. Suicidal agony. My pain still breaks through the pain barriers that my meds provide because the neuro. docs are very conservative about dosage strength-I totally agree with that. Even at the daily dosage mgs., I'm very forgetful, tired and spaced-out all day. That's no way to live.

Rick

25

Dear Red and anyone reading!!

I came back to this site yesterday to research again - dizziness and trigeminal neuralgia or dizziness with head/face pain. I found myself reading my own bit above and thinking wow someone with my exact symptoms! Okay I admit it, I do get brain fog on a daily basis. About 2/3 the way, down I realized it was me and my story.

An update. I continue to have facial and head pain daily. I did go to Lahey Clinic in Boston for Autonomic Nervous System disorder that I was dx with nearly 3 years ago by my neurologist. The neurologist at Lahey did order the testing for this disorder and findings - I do not have this condition. The neurologist did believe me in that I have these strange 'dizzy like' episodes in my head that are transient and last less than a half minute. Thus he referred me to an endocrinolgist at Lahey and I was able to be seen the same day. Lahey Clinic staff are very efficient and treat patients with great care and consideration. Neurologist wanted me tested for Adrenal system. Endo, did not like the fact that I was on a compounded T3 thyroid med and wanted to get my blood work to see if I had too much T3 in me which could cause my spells, heat intolerance, sweating, weakness. Results - T3 too high and I was put on Synthroid. I am now awaiting results of my first blood test to see how Synthroid is working with my hypothyroid. However, I still get the wonky spells. When I hear from the endocrinologist I will ask where do I go now?

I have had my hearing aids now for 6 mths. There has been no effect on my tinnitus save that at times it can be quieter with the hearing aids on. I have a 'zen' mode on my aids that has a subtle background musical sound and I do use it frequently. I believe that helps the tinnitus and it helps me relax at times as well. Well worth the monies. I do get flare-ups of tinnitus ie increased noise and volume when I an in an environment with loud sounds. I saw a Christmas Carol last week (ghost of xmas past was loud!) and the next day my tinnitus was very loud. It is slowly tapering back to normal tinnitus normal for me. I was fitted yesterday for noise plugs to wear at such events. This will filter noise so that my ears will not be harmed further. I do have a mild to moderate hearing loss and the hearing aids are a wonder. We are not able to realize we have hearing loss without formal testing. Much like our eyesight we simply compromise over time to the lessening of sight and sound. Over the past 8 mths, I have had two separate episodes wherein my tinnitus was gone - for a short time ;(. The silence was profound. It is amazing how quiet no sound is. Does that make any sense? I don't know how the two episodes happened but I totally enjoyed those hours without ringing, hissing, high pitched rattling noise and enjoyed the sound of no sound.

Facial pain/head pain - off the charts now and for some weeks. I had an occipital nerve injection into the back of my head yesterday and I am hoping that when the pain of the injection wears off I will have some relief. I have so much pain throughout my body - fibro, severe spinal stenosis, severe degenerative disk disease, flare-ups of hip bursitis, shoulder bursitis, tri-geminal, tmj, cervical (2 whiplash), occipital, headaches, ear pain. Yet to look at me one would think I am healthy save for the dark circles under my eyes.

Pain doctor (anesthesiologist) has given me a perscription for a compounded medication for pain. It is something used for achologics but in small dose can help folks with pain. Will post an update after 4-5 weeks on this..

Also - I do not have or do anything for tmg save wear my nightguard and remember to take small bites of chewy food.

happy holidays

Judy



Judyd said:

Thanks Red, I appreciate your thoughts.

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.

thanks again.

Judyd



Richard A. "Red" Lawhern said:

Several thoughts here.

(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.

Regards and best,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

26

Hi Judy...Thanks for the recent report-back. I'm sorry you are having such a rough time. However, from your recent post, I don't read any questions or issues where I may be able to contribute research on your behalf. You seem to pretty much have your arms around what has happened to you. I can only encourage you to keep trying.

Regards and best,

Red


27

Here I am some one year plus still dealing with all the symptoms and pain that I originally posted about. In fact, in inserting tinnitus and tri-geminal neuralgia into Google, I came upon this my own post to the group here - da..... I will assume that others who live with severe nerve pain also have forgetfulness.

The only progress I have made is one more condition added to my list - atypical migraines. This was from my ENT group and my pain doctor (anesthesologist). The good part is the concur, the bad part nothing will work. I was given an over the counter HeadAche Free pills, a combination of magnesium and B2 in a multivitamin format. I do not think it is working. I have had injections into the occipital area for occipital neuralgia - they help. I had injections into my eyebrow (yes and it hurt like hell) and into my temple. These did help with facial nerve pain for a couple of months. It is now back and I must admit that these two injections are soo very painful that I fear getting them again. I intellectually know that the short pain of the shots far outweighs the benefit of the long term relief. The only way to describe the pain of the injections is knife searing into your skin in the eyebrow which is a thin layer of skin on bone and ditto for the temple. My tinnutus was raging for a few days following these injections. That is another deterent.

I now have a return of ear pain the past few days. A few weeks ago, I had a colonoscopy and when I was in post procedure I noticed that one of my hearing aids was out and the dome missing. I thought it might be in my ear but since I could not feel an obstruction assumed it fell elsewhere. Although it is not easy to get the come off of the part of the hearing aid that is inserted into the ear. I now wonder if it was lodged into my ear and finally has reared it's head with pain. Fortunately I have an appt with a NP for review of blood work this morning and hopefully she can determine if it is the dome or just an ear infection - I hve chronic sinus draining on my right side face as well.

The hearing aids with zen mode have not helped much in assisting me to focus on the zen sound rather than the tinnitus sound. Tinnitus will increase if I am anxious which is impossible to not be - anxious - with all of the nerve pain I endure. I find it hard to focus, hard to get anything accomplished, hard to simply live. I am totally exhausted.

My husband has aspergers and is not able to absorb the totally of what I have. He is not able to inform himself about what I have nor be very empathetic. He is not able to take over on overseeing some of this. He simply walks away just as he did a few minutes ago. My two adult sons are also on the spectrum and thus not available.

Accupuncture - I have not tried this for facial pain/tinnitus and I do not know if I have medical coverage on acupuncture.

Massage therapy - anyone find this to help with head/facial nerve pain?

Craniosacral works helps a bit but it costs about 300$ and change a session even with BC coverage.

Naltrexone - I have done a trial of this but feel it might increase my tinnitus.

Excedrin Migraine - sometimes help with the headaches but could be the catalyst to my having tinnitus.

Medication for trigeminal neuralgia - causes lightheadedness and loss of words and fatique (cannot recall name of med at present)

With today's visit to NP I hope to discern if there is an object in this right ear which might be adding to the tinnitus.

If I press around the facial area ( in front of ear, cheek, temple, jaw) near to my ear, the tinnitus increases vastly. Simply putting my head down onto a pillow increases the tinnitus. No one knows why.

My primary care physician has been dealing with cancer for 2.5 years and I have not had her input to direct me as to where to go, how to proceed. I just learned this weekend that she has passed away. She was a very good doctor and a dear person. I will be needing a new PCP and as you all must know, it is hard to find a PCP that gets the reality of nerve pain. I have a neurologist but I do not think she knows either what is truly wrong as it is soo complex.

Where does one go? Boston is only 1 hour away from me and I do see an endocrinologist at Lahey Clinic for thyroid. Initially I went there some 2 years ago for Autonomic nervous system disorder. The testing proved that I did not yet I still present with some of the symptommotology. The neurologist there refered me to endocrinologist and we have been tweeking out my thryoid for 2 years. There is a Mass ear/eye clinic and I am not sure if that is what I need or to persist at Lahey for nerve pain.

My sugar and cholestrerol levels have been high and the thought was that with thyroid being off that might be effecting sugar and cholesterol. New blood work shows a decrease in sugar by 10 points 115 to 105 - good news. Cholesterol is still high despite a whole foods diet and very informative eating measures enacted. I go to a pool 2-3 xs a week walking and running in water.

I am at wits end yet again and have no resources for information or leads. It is a continuous merry-go-round that is anything buy merry.

any advice or input is would be greatly appreciated.

Judy

28

I also have tinnitus.

And TN1, MAV(Migraine Associated Vertigo, vertigo-attacks like Menieres) and Otological problems (ETD (Eustachian Tube Disfunction), tinnitus, pulsatile tinnitus, earfullness, pressure, earpains, etc.).

Otological problems I have for over 25 years now but TN1 and MAV kicked in three years ago at 46. Feels like everything worsened at that time and ever since. I think for some of us women around here the onset of peri-menopause (which can start from 40) can play a big but unknown role. I wonder anyway.

29

Interesting perspective! I have had pain since the age of 23 and some 36 years later it just progresses every couple of years with a new pain problem added to my list. The concensus is that I have some sort of overall nervous system disorder yet to be discovered by the medical world.

Judy

30

I have similar. Rather than tinnitus. I have what they call vestibular neuritis in my ears. This results in vertigo, dizziness, and I also have lost much of my hearing. Is it all connected, Mr. Doctors say ???they also say I’ve had bad luck. I am however seeing a new neurologist at Cleveland clinic on march 20th who specializes in the connection between the ear issues and TN. Can’t wait to hear what he has to say.

31

Oh, Please post back about your experience at Cleveland Clinic and any insight they might have!!

Judy

32

I know this thread is a few years old, but I have the same symptoms. TMJ, TN, hearing loss and ringing/tinnitus/pain all on left side of head/face. Hearing loss came after a bout of Labyrinthitis in the left ear as well. If anything happens, it's on the left side of my face/head.

33

Hi, I have not been here in a very long time. Most of my head pain problems are on the right side of my head. I have tinnitus in both ears but louder on the right. I have hearing loss in both ears. I have Tri-geminal neuralgia pain on my right side and sinus problems on the right i.e. get stuffy. I have a brain aneurysm that came on a few years ago, on the right side. No physician sees any correlation,, but I think there must be one but science is not there - yet..

34

How did you know you had an aneurysm?

35

I had a CAT scan done at my request as I had a lot of pain on the right side of my head for a long time. A CAT scan had been done 6 months prior to this one and the neurologist was not going to do a 2nd one but she relented when I said that I felt something was wrong.. ( I know my body well). Then I rec'd a follow up call from her with the results... small anneurysm and we had to do another type of CAT Scan called an MRA. My aneurysm is small 3 mm. It is checked yearly and has not grown,, next check will be 2 years from now. An aneurysm does not cause pain. But I have read that if it is pressing on a nerve, it could. The thing is they cannot tell if it is against a nerve without doing a CTA or catheter angiography to get a good picture or upon surgery. If it grows to 5mm they will do further testing. For now, I know that if I ever have "the headache of a lifetime" I need to get to a major hospital asap and call my neurosurgeon's office. I do not think there is a correlation between an aneuryms and tinnitus, or trip-geminal neuralgia. I do wonder why it is the right side of my head.. Oh and I also have occipital neuralgia on the right side of my head,, knew there was one more thing.. Don't go thinking you have an aneurysm..