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benign intracranial hypertension
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benign intracranial hypertension

I have a 20 yr. old daughter who was just diagnosed with benign intracranial hypertension based on the result of a spinal tap that was ordered by her ENT.  He said the initial pressure of 20 was abnormal and gave her this diagnosis, a Rx for Diamox and referred her to a neurologist.  The neuro looked at the results of all her tests which included an MRI, MRA, CT scans and the lumbar puncture.  He said he was 100% certain she did not have this condition because she is not overweight, does not have headaches and her eyes checked out fine on his exam.  Her main complaint has been that her right ear felt like there was something in it, was painful, had popping and a whooshing noise as well as hearing her heartbeat in her ear.  The ENT removed her adenoids (adenoids) since they were quite large, but she experienced excruciating pain in her ear as a result and the surgery did not improve the initial symptoms.  Then he inserted a tube into that ear, which did not alleviate any of the symptoms.  All hearing tests were normal, except for the balance test, which revealed a 40% loss of balance in that ear.  She states that the heartbeat noise in her ear is unbearable still and this resulted in the ENT ordering the spinal tap as a last resort.  So we now have two specialists, an ENT and a neurologist, who disagree on the diagnosis.  My daughter did try the Diamox, but the side effects are not worth the temporary relief of the pulsatile tinnitus.  She has vomited continuously over 36 hours on two separate occasions of trying this drug.  So, my question is this:  Is the heartbeat in her ear of a neurological nature or is this an ENT issue?  The ENT said the initial pressure of 20 was out of range enough to give the diagnosis since the range was 7-15.  The neuro said that 20 was borderline and there are too many variables that can effect the initial pressure, such as stress or the way she was laying on the table at the time of the puncture.  He said not to take the Diamox and that she  had had way too many tests.  He prescribed an anti-anxiety med and some prescription "vitamins" I've never heard of - Deplin & Metanx.  She cannot tolerate the anti-anxiety med, but tried the Diamox one more time out of desperation and has been vomiting for 36 hours now.  (I've since taken her to another physician to get a shot of Phenergan).    Where do we go from here?  She left the neuro's office feeling hopeless and said she could not live with this noise in her ear.  
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Hi, this could be meniere’s disease, has she been investigated for meniere’s disease?

“Ménière's disease is an abnormality of the inner ear causing a host of symptoms, including vertigo or severe dizziness, tinnitus or a roaring sound in the ears, fluctuating hearing loss, and the sensation of pressure or pain in the affected ear.

The symptoms of Ménière's disease occur suddenly and can arise daily or as infrequently as once a year. Vertigo, often the most debilitating symptom of Ménière's disease, typically involves a whirling dizziness that forces the sufferer to lie down. Vertigo attacks can lead to severe nausea, vomiting, and sweating and often come with little or no warning.
Some individuals with Ménière's disease have attacks that start with tinnitus (ear noises), a loss of hearing, or a full feeling or pressure in the affected ear. It is important to remember that all of these symptoms are unpredictable. Typically, the attack is characterized by a combination of vertigo, tinnitus, and hearing loss lasting several hours. People experience these discomforts at varying frequencies, durations, and intensities. Some may feel slight vertigo a few times a year. Others may be occasionally disturbed by intense, uncontrollable tinnitus while sleeping. Ménière's disease sufferers may also notice a hearing loss and feel unsteady all day long for prolonged periods. Other occasional symptoms of Ménière's disease include headaches, abdominal discomfort, and diarrhea. A person's hearing tends to recover between attacks but over time becomes worse”

Taken from website http://www.nidcd.nih.gov/health/balance/meniere.asp

Vomiting is not because of diamox as this drug is not associated with vomiting but probably is because the inner ear disease only.
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Avatar_n_tn
Thank you so much for your response.  According to her ENT, she does not have Meniere's Disease.  I remember him stating this from the second visit.  How is a diagnosis made for this?  Is it just based on the symptoms or are there specific tests?
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Hi, “proper diagnosis of Ménière's disease entails several procedures, including a medical history interview and a physical examination by a physician, hearing and balance tests, and medical imaging with magnetic resonance imaging (MRI). Accurate measurement and characterization of hearing loss are of critical importance in the diagnosis of Ménière's disease.

Through the use of several types of hearing tests, physicians can characterize hearing loss as being sensory, arising from the inner ear, or neural, arising from the hearing nerve. Recording the auditory brain stem response, which measures electrical activity in the hearing nerve and brain stem, is useful in differentiating between these two types of hearing loss. Electrocochleography, recording the electrical activity of the inner ear in response to sound, helps confirm the diagnosis.

To test the vestibular or balance system, physicians irrigate the ears with warm and cool water or air. This procedure, known as caloric testing, results in nystagmus, rapid eye movements that can help a physician analyze a balance disorder. Since tumor growth can produce symptoms similar to Ménière's disease, an MRI is a useful test to determine whether a tumor is causing the patient's vertigo and hearing loss”.

http://www.nidcd.nih.gov/health/balance/meniere.asp
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Avatar_n_tn
WOW! I can't believe that a ENT would diagnose Intracranial Hypertension! 20 is NOT that high! My first opening pressures were 38, and I was told that was not even that high. (Obvoiusly high enough for diagnosis and nerve inflamation (inflammation)) They usually see patients with much higher pressures than that. (50's)

Do the MRI's show fluid in Her Mastoid Air cells? I'm curious because I have 'noises' popping, squeaking, etc, and my bi-lateral mastoid air cells are filled with a 'significant amount of fluid' based upon the MRI. I see an ENT today. But I wonder if that could be the noise thing? I seriously would consider a second opinion on the ENT...........
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Avatar_n_tn
wanted to add..... The other sound I hear is the "heartbeat" sound too. If you have ever heard a babys heartbeat while in the womb, its exactly what I'm hearing. I guess I'm hearing my own though...its very odd! And ANNOYING! So I can so understand her frustrations.
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