i'm back -- no help, still dizzy

[LynnSB]

I've written before.summary: i've been dizzy since April also had some swelling of the left side of my face, ear pain, burning, tearing,deep itching pain across my cheek. I had a root canal in June ( no abcess (abscess) but a dead tooth); immediately afterwards, all pain disappeared ( but not the dizziness). by the end of the summer, I was experiencing room spinning vertigo episodes -- one lasted for hours and i went to the er. I would fall over if i bent my head backwards or forward. CT scan was normal; CT of sinus normal. MRI essentially normal. NO NYSTAGMUS was ever noted , even during horrible vertigo episode at er. I've had vestibular testing, normal.finally went to neurologist, says probably neuralgia but so atypical.. doesn't hurt to the touch. I'm sick allthe time. going to an endodontist for a second opinion on Thurs. Questions: how can i have vertigo ( worse with head movements) and have no nystagmus? could i have nerve involvement with vestibular system somehow that didn't show up in vesti. testing? i think my parotid gland onleft side is swollen, very subtle but i feel it. would a parotid tumor have shown up in ct scan, or mri? I am desperate. I feel dizzy, weird, almost constant ear pain, off balance, yet doc after doc says they can find nothing wrong.. although do see puffiness in face. does neuralgia cause swelling? any help? it is so hard to function like this..no one seems to care or take this seriously

[CCF-Neuro-M.D.-JT]

If this is a neuralgia, it is very atypical as that usually involves pain rather than swelling and vertigo. Unfortunately, despite the fact that dizziness is one of the most common complaints heard at a neurologist's office, no cause is ever found in up to 50% patients.  Nystagmus does not have to always be present with vestibular dysfunction and there are many neurologic as well as non-neurologic causes for dizziness/vestibular dysfunction.

As for the anatomy questions, the facial nerve controls movement of the face rather than sensation (except for one branch to the ear) and the auriculotemporal nerve carries information regarding salivation and blood vessel dilation rather than vestibular and/or pain sense. A couple of diseases that do relate enlarged or abnormal parotid gland and dizziness include mumps infection and Sjogren's disease, a rheumatological disorder that can causes dry eyes and mouth as well as other systemic complaints. Technically, an abnormal parotid should have shown up on the MRI, but it's possible that this was missed especially if they weren't looking for anything there and the finding was subtle.  If this is really disabling, consider a second opinion by a neurologist who specializes in vestibular disorders.  Bring your films to be re-reviewed. Dr. Oas here at the clinic is board certified in bothe ENT and neurologist and has a dizzy clinic. Good luck.

[LynnSB]

PS... I also had the testing where the ENT doc looks through special goggles and maneuvers you up and and down and sideways, etc. trying to provoke and see nystagmus. NO ONE HAS EVER SEEN ANY. But I am not imagining this dizziness and I don't see how anyone could imagine vertigo that makes the world seem to spin not only around but up and down and around.

I woke up with such jaw/ear pain... and , of course, dizzy, but i guess there's nothing else left to be done. I can't help but try to find out what on earth to do next. thanks for any comments or suggestions.

[headproblemz]

Perhaps you are not sleeping in a proper position. Maybe an orthopedic pillow would help. This is just a suggestion. I could be entirely wrong!

[ToddR]

hi Lynne, I am in a similiar situation. I developed left ear pain and "fullness" back in Sept with associated mild vertigo but mostly lightheadedness. I have been to my general practioner, dentist, endontist, ENT, and now a dental oral surgeon. He believes my wisdom teeth are causing all my problems so I am having 3 extracted. I am not sure this is the problem but I am at my wits end and need to try something. CT scan of my sinuses and ear are all negative. Dental X-rays do not show any infection or abcess (abscess). The lightheadedness is what's bothering me the most. It occurs randomly without notice and when it's bad, I can't function at work. I feel so out of it. The symptoms are hard to explain. I just wish someone would find something so I can deal with it and look toward recovery. I am also going for a hearing test next month just to rule out any inner ear disorder. I know what you are experiencing and keep me updated on your progress.

[LynnSB]

Well, we sure do have a lot in common. I've had the hearing tests, too ( results were all not just normal but outstanding!). I can't think of any test I HAVEN'T had done, except perhaps a nerve conduction test. I am in such pain -- not stabbing, a fullness, pressure kind of pain -- with my ear right now as I type this.. It is uncomfortable to talk,now, too. And, no, I do NOT have TMJ which my internist first suggested.

The only thing that helps at all is very high dosages of ibuprofen ( 800 mg). which sure sounds to me like inflammation is involved. I had a low white blood count initially, then it went up to low normal. You'd think I'd have an elevated WBC if this were a bacterial infection. Mostly, I feel exactly how you describe it -- lightheaded, with spurts of vertigo sometimes.. just rotten. I don't understand how nothing, NOTHING canshow up on any tests. My dentist did find a "calcified pearl" thing sitting right above the root of the tooth that was dead ( the one i had the root canal in). He said it was not attached to the tooth and was sitting on the floor of my sinuses. The neurologist and ENT doc said it couldn't be doing anything. I also have pain on the side of my nose. This is not a little discomfor, it is wrecking my ability to work and care for my son. I don't want to do anything. Do head movements precipitate your dizziness at all?

[LynnSB]

Just back from yet another consult. this time with an endodontist. He found no sign of an abcess (abscess) but some tenderness and slight redness over the bone on the left side -- said if its a bone infection, not from my teeth. He DID find that the tooth with the root canal is very, very loose, which it shouldn't be. He said the bite was terrible -- my regular dentist didn't fix the tooth right and every time I closed my mouth , the endodontist said i was pounding the teeth on my left side.  He said it should firm back up and if it doesn't it means there is something wrong with that tooth that isn't showing up.

Anyway, he fixed the bite by grinding down the tooth and crown beside it. But he doesn't think that is the explanation for my constant pain, ear pain, and dizziness, though.

I'm so disappointed. The endodontist wants me to go to an oral surgeon next. I do not want to doctor hop. I HATE this, but I can hardly function. I feel systemically ill 24/7.... if anyone has any suggestions please let me know

[eloridas]

Hey,  Listening too your frustration--I just wanted too let you know that you are not alone with this.  I have delt with oral surgeons/maxifacial surgeons for a long time and they might be able too help you simply with a glider, which is a mouth piece you can wear at night too give your jaw a break.  I had too have my jaw recontructed twice so I am used too this feeling and know that I can do a few exercises also too help with the pain.  One is too hold a lifesave too the roof of your mouth with your tongue--always helps my muscles too relax some and could help relieve this pain some alittle for you if this is what yo uare having a problem with.  Also the vertigo since you already said that it is with certain positions.  There is a disorder that is call benign positional vertigo--I went too a neurologist and never got any relief through him for it--but simply looked the conditon up on the internet and found an exercise that helped me greatly with it.  Hope some of this will help--or make you mor comfortable until you see the oral surgeon.

[LynnSB]

I’m leaning more and more to thinking the key to my bizarre symptoms lies in my salivary glands.

Way back in April, one of my first symptoms was a very, very sore and swollen palate. No one seemed interested.

Now that dental, neurological ( except for possible neuralgia), ear and sinus problems have been supposedly eliminated, what am I left with? Well, I have  some visible physical signs and symptoms if I can get a doctor to bother to look at them – I have set from the get-go that my left parotid gland is bigger than the one on the right. It is now even larger but non-tender. AND, I am slightly red – sometimes quite red – on my palate to the left of the top of my palate over my teeth . The endodontist noticed this. Well, I just found out that is EXACTLY where some small salivary glands are.

To top it off , and I pray someone will look at this and give me a clue, I read this: >>Parasympathetic secretory afferents to the parotid leave the inferior salivary nucleus with the glossopharyngeal nerve and travel via Jacobson's plexus in the middle ear to synapse in the otic ganglion. Post-synaptic fibers are distributed to the parotid by the auriculotemporal nerve.
Facial nerve passes through this gland<<

SO COULD PROBLEMS WITH THE PAROTID GLANDS CAUSE FACIAL SENSATIONS, PAIN? COULD THE FAT IT IS CONNECTED TO THE AURICULOTEMPORAL NERVE BE RELATED TO DIZZINESS?

[LynnSB]

>>>COULD THE FAT IT IS CONNECTED TO THE AURICULOTEMPORAL NERVE BE RELATED TO DIZZINESS?<<<

I MEANT to write could the FACT it is connected to the nerve be a clue here...

[joyceb]

Two things to check for:  1. Sounds like there's a dental connection. Check out www.hugnet.com (read about root canals).  Also do a Google search on jawbone cavitation.

2. Also sounds like there might be some food allergies or sensitivities.  I've been going through some similar problems and have finally gotten about 80 percent better by eliminating certain foods.  My palate gets swollen, red, painful, and sometimes itchy after eaten certain fruits (citrus or plums).

Also, it turns out I've become extremely allergic to soy, which is in about 90 percent of all foods and many vitamins, as well as the estrogen I was on.  The symptoms, very similar to yours, had become so severe that I seriously thought I was going to die.  But all the doctors' tests came back normal and they decided it was all in my head.  (They love to say that if they don't have a clue.)

Unfortunately, many allergists only test you for the few most common food allergens.  The way I finally did it was to keep a log of everything I ate and pay careful attention to how I felt just after I ate.  Then I looked for overlapping symptoms.  For example, the soy immediately started a feeling like a mild current, tingling and/or numbness in feet and hands, lightheadedness and dizziness, etc.  Anything acidic--citrus fruits, tomatoes, vitamin C, ascorbic acid added to foods, vinegar--almost immediately gave me burning pain in my shoulder joints and arm bones.  The symptoms typically last several days, once they are triggered.

A more thorough but drastic way is to eliminate everything but a few things that aren't usual allergens, such as rice and cooked green vegetables and maybe chicken or fish (though everyone's different).  Eat only those things for a week, then slowly reintroduce other foods one at a time and watch for reactions.  Be careful about labels.  For example, a can of tuna in spring water, I was surprised to discover after I had a drastic reaction to it, also contained soy protein.

Two things seem to make you more prone to food sensitivities.  One is going through menopause or having a hysterectomy (as I did).  The other, which a lot of people think is hokey but I'm seeing a link in my own body, is some sort of constant toxin that makes your body hypersensitive, such as a mouthful of mercury fillings like I have.  But I'm finding that there are only a few dentists who believe they might cause a problem and are willing to replace them, and it's extremely expensive.

A great article I found that's the best explanation of what happened to me is called Sick All Over Syndrome (I didn't write down the website, but you can do a Google search).

[armistead]

I know how you feel. I walked around dizzy for months. Then pain took over my body and i was diagnosed with PN. Then my ears started hurting. MY Neurologist says ears have nothing to do with PN. Went to my ENT, said ears looked fine. Did a hearing test and some other test spraying water in my ears. All normal.
The pain and dizziness got worse, not including the sense of pressure. I went to him a few more times and he just thought I was stressed. Gave up. Got so dizzy that I couldn't walk and went to ER and got sent home and told to see my Neurologist, which already said not from my Neuropathy, not that I can ever get in to see her. My ears ring so loud that I can hear them over the TV. So dizzy now that I can't drive and will probably lose my job. I'm lost as what to try next. The PN is bad enough without the ear pain. So I'm broke and still in pain from all the testing. At least the Doctors are having a good time.

[jersam74]

My wife had symptons similar to yours, especially the vertigo and the fullness on one side of the head.  She started with small bouts of vertigo while we were living in California.  After we moved to Vermont she had a session that was debilitating.  None of the doctor's knew how to help so I got on the Internet and discovered what her problem was.  She has Meniere's disease.  There is no cure but we have learned to control it to the point that she functions pretty much like she used to.  She did lose her hearing in her right ear but so far it hasn't progressed to her left ear.  We found that lowering her sodium intake and being on water pills periodically seems to help.  Do some research on your own on this disease.  Just type in Meniere's disease in any search engine and you will find tons of information.  If I can be of any further help please let me know.  My email is ***@****