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Old 09-21-2003, 06:18 PM   #1
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Post vertigo and clogged ears from TMJ

I am new to this forum. I am at wits end and I need to know if anyone else out there has chronic clogged ears, and vertigo? I feel like I am going mad. I get facial numbness too and have had every test in the book for everything from MS to Lupus and everything else under the sun. I was diagnosed with TMJ from many doctors. The final one scoped my sinus and ears down into my larnex. He was an ENT. The diagnosis was TMJ. I still cannot believe this to be true. I am at a neuromuscular dentist and a chiropractor now and a splint is being made for me by tomorrow. The anxiety is horrific to say the least and I have tried many meds for depression but they add insult to injury exasperating the dizziness. I am taking nothing right now but am failing at this misreably. I do not know what to do. Can anyone identify with this?

 
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Old 09-21-2003, 09:28 PM   #2
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Hi,
You are not alone my MAIN symptom is ear pain and problems and I occasionally get the clogged ears. I also have vertigo but not very badly I will just sometimes get dizzy. http://www.healthboards.com/ubb/dizzy.gif Do you have ANY ear pain do to your TMJ???? Let me know!!

[This message has been edited by Ouch-ear-pain (edited 09-21-2003).]

 
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Old 09-22-2003, 02:43 AM   #3
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Hi TMJ girl,

Did they do the rotary chair/ENG and caloric tests? Hearing tests? These are the correct tests to ascertain if you have an inner ear disorder. Your symptoms could just be down to tmj, but until you've had those tests it's impossible to say. ENT's actually have very little further training in the inner ear, the specialists in this field are called neurotologists (different from neurologists) I have dizziness/vertigo and initially plugged ears, although thankfully the plugged ears have cleared up. I was diagnosed with tmj at 8 months in, but then at 10 months my general dizziness turned in to vertigo, I got sick of being messed around by ENT's and got a referral to neurotology - they did the CORRECT tests (because they know what they're doing, unlike ENT's who often don't) and was diagnosed with vestibular neuritis also - (similiar to labyrinthitis.)This means I have damage to one of my balance nerves.

Personally I believe anyone experiencing plugged ears and vertigo should never assume their problems are definitely tmjd related until they have been to a good neurotology department and had an inner ear disorder ruled out. There is a tonne of excellent info over on the inner ear disorder board. Neurotologists are super specialists in the ears/brain and dizziness - many people on the inner ear board were given the run around by ENT's before someone told them about neurotologists and they finally get the answers they're looking for.They are also very good at working out if something other than an inner disorder is causing your vertigo/plugged ears. If the tmjd diagnosis is correct they should be able to confirm this. Most ENT's don't bother to confess that dizziness is not their speciality (arrogance) or bother to tell their patients that these specialists exist. I think they work on the assumption that they can tell you what's wrong and why should you need someone with more training in this field than them. My GP didn't even know what a neurotologist was, but was very happy to refer me to one. You may notice I'm not very fond of ENT's - one told me I was a complete mystery - the other said I definitely didn't have an inner ear disorder. They were both completely wrong, I have both tmjd and vestibular neuritis - they missed BOTH entirely.

Apologies is you've already seen a neurotologist and had the tests I mentioned - if a neurotologist has told you your symptoms are caused by tmjd, after all the correct tests etc.. then they probably are. If not, see a neurotologist.

Most importantly, don't panic, these symptoms are not uncommon, there are many people on the inner ear board who will be able to relate to exactly what you're going through. There is help out there, it's just a question of seeing the right specialist. Also, the sooner you do this and start with the correct treatments, the quicker you are likely to experience relief.

[This message has been edited by hbep (edited 09-22-2003).]

[This message has been edited by hbep (edited 09-22-2003).]
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Old 09-22-2003, 02:59 AM   #4
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Sorry, forgot,

One other thing. If you go to the inner ear disorder board, go in to the search engine and type 'Which specialist to see' in to the search engine, it will bring up an excellent article by a vestibular (balance) research nurse, who explains the stuff I've said above much better than I can.
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Old 09-22-2003, 07:35 AM   #5
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Thank you for answering, folks. To hbep, yes, I had seen 5 ENT's. Have had a brain MRI, blood work up, facial CT, several internists, neurologist, etc. Of the five ENT's they came up with several diagnoses, and all were different. Non had seen fluid in the ear. Five hearing tests proved normal. Two said I had Meneire's and said it was just a quess. Two wanted to put tubes in my ears, regardless of no fluid. The last one scoped me and actually saw the eustachian tube from the inside, whereas the other clowns told me that they weren't able to view my eustachain tube from the inside. Yeah, right. He told me the tubes were functioning normally, not patulous, not blocked. So I accepted his word. He was the one who told me that I had TMJ after handing me a print out from JAMA. He said he sees patients constantly with the same complaints. I even went to a ReHAb place to be evaluated for balance disorders and they did the excersises that induce eye movements and vertigo. The tech thought that it was not coming from the inner ear. So I scrapped that. My sinuses seem to be involved too. They feel swollen way inside. I was told that my head is in huge spasm. I have alot of anxiety and stress over this. The amount of doctors I had seen is unbelieveable. I was even told by an internist that I had a pituitary tumor because my cortisol level was high. After seeing an Endocronologist, that was ruled out. Now I am in a Psychologists couch twice a week. I cant cope any longer. I have a daily panic attack as soon as I wake up. I know the rest of the day is going to be hell on earth. I am an active person, a mom, and a wife. I cannot function. My family is at wits end and my adult children run away from me now. This is effecting my marriage. I would rather die. No suicide thoughts, but sometimes I feel I should never wake up in the morning. I had gone 10 months with no answers. Just speculations. I am reaching out to the world on this internet to see if I am crazy and alone, or if others are like me. I don't even know what caused this! I have read about Burt Reynolds and his personal hell with TMJ for 4 years. He lost weight and everyone thought he had AIDS. Turned out to be his TMJ. He had tubes in his ears, he had vertigo and he was misreable. I tried to write to him on the net, but being a celeb. that was impossible. I wonder if he reads this sight. He had dental work and his problem went away. That is so the story goes, anyway. I just cannot believe that the TMJ can effect the head in this fashion. The neuromuscular dentist told me that 30% of the nerves go through the joint into the brain and if they are compressed it sends referred pain and numbness to other areas. I could go on and on, but I will stop complaining now. I think of other people with cancer and somehow this seems small. God Bless us all.......

 
Old 09-22-2003, 07:45 AM   #6
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PS: I did just look up that specialist reply. Thanks for the info, hbcp.

 
Old 09-22-2003, 08:32 AM   #7
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Hi tmjgirl,

I have been suffering with constant imbalanceand clogged ears (esp right) for the past two years. I was also told by an ent that my problem is tmj. I have been seeing a neuromuscular dentist and am using a repositional splint. I also see a physio therapist and both agree that my symptoms can definately be tmjd. The p.t. is teaching me how to release the muscle tension in my neck (I only have 15% range of motion) which seems to be helping the ears somewhat. The splint has definately reduced my jaw pain, I used to take a tylenol every a.m. and haven't done that for about a month. I also saw a chiropractor who specializes in the upper cervical spine to make sure the c-1 was ok because the muscles can't loosen if the spine is not in adjustment. I also have bad posture which I am working on.
Like hbep, I have an inner ear problem, however with stress reduction and daily activities the brain does manage to conpensate. I also used to have panic attacks and have been diagnosed with general anxiety disorder so have resolved myself to taking paxil and diazepam. I know it is addicting but I cannot tolerate the panic along with the other problems. I feel that at my age (50) I could be addicted to many worse things.
I understand about your grown children because I have the same. At this point I have a very limited social life and I used to have a friend who I spoke with every day but we had a falling out, so now I consider the people on this board my friends.
I am trying to get back into crafts because I hate dwelling on this condition and I know my family is uncomfortable hearing about it.
Take care and I hope you soon feel better!

Grace

 
Old 09-22-2003, 09:03 AM   #8
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Dear Grace,
Thank you for responding. I am 47, just about your age. I have tried the zoloft 5 times and I get dizzy side effects. I am afraid to try other antidepressants for fear of the same reaction. Menopause doesn't seem to help matters either. I get the panic attacks every single morning. I dont know how to make them stop. I think they are worsening the vertigo. Today I get my splint from the dentist. He is very kind. I also have a c-7 problem from the posture that I have taken from this for 10 months. I do go to a chiropractor for that and have better range of motion with my neck. Before it was stuck in the middle! Please tell me how you fare on Paxil. I see a psyciatrist also who has been trying to get me to take meds for a long time and I won't. Had a major reaction to penicillin last Dec. just before Christmas, so that did me in for pills. I am afraid of the vertigo getting worse on the antidepressants, but my blood pressure is really high now, and the anxiety is taking it's toll on me physically. Otherwise, I am a healthy person. Only draw back is that I smoke. That seems to make it worse. Trying to stop, but the nicotine holds me prisoner also. Everyone tells me not to stop now. But I think smoking is making it worse. Thanks for the reply. God Bless....

 
Old 09-22-2003, 09:07 PM   #9
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Hi TMJgirl,

I can certainly relate to your hesitation to take medications because I actually have a phobia about them for fear that they will make me dizzier. When I first started on paxil for the anxiety I started with 10 mg per day and was pretty good for about4 years..2 years ago I got the labrinthitis and the anxiety was phenonemol! The dr got me to up the dosage to 20mg and it just didn't agree with me. The anxiety was worse, the dizziness was worse and all I wanted to do was sleep. That was when I went back to 10 mg and started on the valium. I still take both and ever though I feel the brain fog and plugged ear I don't have the anxiety over it that I had before.

I feel that if I could see someone (psychologist etc) that it would help alot to deal with the psychological aspects of this however I have no medical coverage for this and it is $200. per hour. I saw a psychiatrist once about a year and a half ago and am still waiting for another app't because they put me on a list. Given up on that!

I wonder if your anxiety is causing your high blood pressure. I know at one point in my life I had such high blood pressure from anxiety that the dr's thought my kidneys the problem. Thank goodness that wasn't the case.
By the way I smoke too and I don't think it has affected me either way. Could be denial but I guess I'm not ready to quit yet.

I kind of wonder if menopause has some effect too. When I see my GP on the 14 I am going to request some blood tests including thyroid, liver function (because of the meds) and hormone levels.

I have found that the trigger point release that the physio therapist is teaching me has helped with the clogged ear feeling. When I do the release on the upper sternocleimastoids I can feel my ear start to kind of pop and open up a little bit. Also I have some itching starting occassionally which from experience tells me that there is some healing going on.

I sure hope this finds you feeling alot better. How is the splint working out?

Take Care,

Grace

 
Old 09-23-2003, 06:21 AM   #10
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Hello Grace: Love your name! I got the splint yesterday and it feels rather cumbersome but if it helps I will put up with it. I too had all the blood tests, ie: liver function, kidney, etc. and I am the healthiest human on the USA east coast! Yeah right. Feel like I am 90. Hormones were definately array tho and have missed a couple of menses. The night sweats are awful so I really cant sleep to well. I took the bottle of Zoloft out this morning and placed on the counter. I know that if I take it will make me dizzier by the 4th day. I dont know if it agrees with me, but I cant stand this anxiety to much longer. I tried water pills for the high BP but that didnt work at all. They want me to take Ace Inhibitors but I am afraid to take it. My insurance covers the psyco therapy, and this girl is trying to teach me relaxation techniques like listening to tapes of the ocean, and breathing techniques. I told her the anxiety over rules the excersises and she thinks I am a candidate for meds. Catch 22 for me. What kind of trigger points do you refer to help the ear drain? I wonder what is causing the vertigo from my ear also. Maybe I should try the paxil too. At this point they will give me anything I ask for! Does the paxil numb your emotions? Lexapro was awful for me. It is very potent and my whole body felt numb. It was very wierd unless, once again I was having anxiety over taking the medication. Stay well.....

 
Old 09-23-2003, 01:50 PM   #11
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Hi,

I just wanted to mention that I also have ear symptoms. I have not had any dizziness. I think that would be awful to experience. I have symptoms of fullness and some muscle spasms in my left ear. I too suffer from major anxiety and depression. I found that taking medications that are SSRI (selective serotonin reuptake inhibitors)such as Paxil, Celexa, Prozac there are many of them; they made my grinding worse. I do not think this is the case with everybody. It just happened to be with me. I am currently taking an old antidepressant called Elavil and Ativan at bedtime. I am also taking a muscle relaxer called Zanaflex, which seems to be helping. It is such trial and error when it comes to psych meds. It is hard to find out what helps and what does not. I hope you can hang in there with your treatment. I know it is hard. I have been there just recently. I am close to your age. I will be 40 this Friday. I mention my TMJ to my family, and they no longer have any comments. It is hard when there is not anyone to talk to about your ailment. I hope you keep posting to the board.

 
Old 09-23-2003, 05:05 PM   #12
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Thank you Grace for the med info. I to am afraid of pills like these. That is why I have tried Zoloft 5 times and hoping that it will "G" up with me, but it seems to not agree. Now I am scared to try anything else, although I admit, I NEED it. I feel like I am hanging by a thread anymore. This is the second day on the splint in my mouth, and it is cumbersome, but my ear is still clogged and I still am dizzy and spaced out. The brain fog is horrible. I saw my chiropractor today and he snaps my neck and back because he says it is all connected and some day it will all fall into sink. I really trust this guy and he is very kind to me.
To those of you without the vertigo, you are lucky. You cant imagine how much so. Today I called the last ENT I had seen, (the guy who scoped me) and spoke for half an hour to his kind nurse who tried to comfort me. She told me that the TMJ does in fact cause these awful symptoms, but as I sit and suffer daily and have lost my entire life, I find it hard to believe that such a simple joint can cause such mayhem and upheaval in a life of one small human being. Everyday I put the vial of Zoloft out, along with the Ace Inhibitor trying to get up the nerve to take it and I just dont. I wait until 3PM and have a glass of wine. Then I have another. Seems that is what calms the nerves. Oh well, I still try to think of others with far worse health then my own. But for me, this is turning into a total body involvement. It is far to crazy to even go into but I do not feel that this will ever end. Thanks for responding and God Bless us all. No one else understands, not even my own. Stay well....

 
Old 09-23-2003, 05:19 PM   #13
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Grace:
I looked up what the Scotsman said and I did what he said about pressing on a point in the neck. The right side of my neck was a sore point, same side as the jaw, ear and sinus problems. Wow. I will research this Sternocleidomastoid muscle and syndrome and will ask my chiropractor and neuro. dentist and let you know what they say! Interesting. I see my dentist tomorrow to check on the splint. Will run this by him and will post after the appointment. Great lead, Grace. Thanks.

 
Old 09-24-2003, 12:20 AM   #14
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Does anyone know how I can find a Neurotologist or what type of test they should be ordering to test the balance nerves?

 
Old 09-24-2003, 05:49 AM   #15
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I went to a Rehab Center. They gave me a full eval there. If you have one close by to you, they can do that. Call your local hospital and inquirer or your primary guy.

 
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