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  • Dizzy 10 years, diagnosed for 4 years, my story

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    Old 04-18-2016, 08:58 PM   #1
    dizzyear
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    Dizzy 10 years, diagnosed for 4 years, my story

    Hi All,

    I have read many posts and I am hopeful that my story will help someone on this site that is having trouble getting a diagnosis for a long term dizziness.

    One day about 10 years ago, I noticed a mild dizziness that I would describe as unsteadiness. I have never felt any spinning. For me this is a constant feeling that has not gone away sense but also doesn't have any dizzy episodes like is common with Meniere's or BPPV. I went to my general doctor that referred me to a Neurologist and I had an MRI that showed a completely normal result, no Acoustic Neuroma, no signs of MS. Neurologist ordered up up other tests but I never followed through since the symptoms were minor and I was relieved that my MRI came back without any negative results. Time went by and my dizziness slowly increased but was nothing that I couldn't handle, more of an annoyance, always there. One day many years later I woke up with a feeling like my ear was clogged, as if I had water stuck in my ear. I could still hear but there was a pressure/irritation, sense of fullness. I also was hearing my own voice loudly in the affected ear. I tried some over the counter solutions that failed and then made an appointment with an ENT. During my visit, the ENT was able to determine that something wasn't quite right. When he placed a tuning fork on my head, I could hear it much louder in the ear showing symptoms. Next, was a hearing test from the audiology department. The hearing test came back quite normal, with only a minor difference in my problem ear. Based on my other symptoms (No headaches, etc) it might be a Perilymph Fistula. I was extremely fortunate to find this ENT that was not going to give up until he could explain the dizziness. So for completeness he ordered up a CT scan of my ear. A day later, I received a call indicating he likely knew the problem. It turned out that I had a small hole in one of the semicircular canals in my ear called the Superior Semicircular Canal. This condition is called Superior Canal Dehiscense Syndrome, SCDS and was first documented in 1998. A follow up test called a VEMP was used to confirm the finding.

    For many years I experienced dizziness as I have read in some of the posts on this board. I would encourage anyone that is experiencing dizzy conditions to continue working with your Dr to find the cause. If your current Dr is out of ideas, seek out a 2nd opinion. If you think you might have SCDS, some additional information is below to help you better understand the symptoms and what is needed for diagnosis.

    First, many ENTs have not heard of this condition since it is still relatively new in the literature, and most have never had a patient with this condition. Second, based on research, I have found that the symptoms are very different for each SCDS sufferer. Some don't have any dizziness, for others, dizziness is the main or only symptom. Based on research of others with this condition, I can say that almost all have been misdiagnosed more than once (Allergies, MAV, Menieres, etc) before getting the correct diagnosis.

    The primary way to determine if you have SCDS is to get a high resolution CT scan of the ear to look for the hole in the Semicircular Canal. Since the hole may only be the size of a pin head, the CT settings and directions from the Dr are very important. Some others have been told the didn't have SCDS only later to find out the CT wasn't collected with enough resolution. This test is very different from a general CT of the head.

    Symptoms associated with SCDS 1 or more of the following
    - Cronic Dizziness/disequilibrium
    - Autophony, hearing your own voice loudly in the affected ear and or hearing other body noises, like heartbeat, eyes moving, etc.
    - Tullio Phenomenon, sound induced dizziness/vertigo
    - Hyperacusis, over sensitivity to sound (like sensitive to the sound of clapping)
    - A feeling of fullness/pressure in the affected ear (like you have water in your ear)
    - Tinnitus, a high pitch ringing in your ear.
    - Fatigue due to brain compensating for disequilibrium.

    My symptoms developed over time starting from dizziness and are currently:
    - Cronic unsteadiness/dizziness (not Vertigo no spinning)
    - Autophony (hear my voice, eyes movements, heartbeat, movement of my neck)
    - Sensitivity to specific sounds, (kids squealing, clapping, etc).
    - Fullness of the affected ear.

    Hope this helps someone out there.

     
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    Old 04-19-2016, 03:53 AM   #2
    skipster1
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    Great story with excellent details on your progress. I too do not have a diagnosis, just passed two years since mine started. Wondering what treatment is being done for you, have the doctors found a medicine that helps etc?

     
    Old 04-19-2016, 07:39 AM   #3
    Tanahym
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    Have same symptoms .. But on and off with interval of months .. Is it the case ??!! Or once start never stop???

     
    Old 04-19-2016, 09:37 AM   #4
    dizzyear
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    Unhappy Re: Dizzy 10 years, diagnosed for 4 years, my story

    Quote:
    Originally Posted by skipster1 View Post
    Great story with excellent details on your progress. I too do not have a diagnosis, just passed two years since mine started. Wondering what treatment is being done for you, have the doctors found a medicine that helps etc?
    Treatment for SCDS is mainly surgical. Many patients have had good results with a surgery to plug or patch the hole. However, this is a rather big surgery and most people wait until they can no longer handle the symptoms. To fix the hole, the common surgery is to open the skull, gently lift the brain off the hole, and then plug or patch the hole. I am still trying to manage without surgery. I believe some people take meds to deal with Nausea but this doesn't address the dizziness.

     
    Old 04-19-2016, 09:40 AM   #5
    dizzyear
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    Quote:
    Originally Posted by Tanahym View Post
    Have same symptoms .. But on and off with interval of months .. Is it the case ??!! Or once start never stop???
    The symptoms for SCDS vary a lot. For me the dizziness/fullness is constant and hasn't come and gone. However, I have heard others say the fullness in their ears comes and goes. Do you have any other symptoms in addition to dizziness?

     
    Old 04-19-2016, 10:12 AM   #6
    Tanahym
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    Yes , ear fullness ,but never in one ear ... Alwayes bilateral ... blurring of vision, nystagmus , the condition always starting by headache for 2 days or more and the headach decrease and the dizzziness and the foggy head persist for a months , loss of memory and concentration , fatigue, numbness ( don't know if related to topamax tab they gave me for migraine , this feeling make me crazy .. And the cycle of anxity and depression start .. Diagnosed as , MAV, Lateral or Horizintal canal lithiasis .... Still suffering

    Last edited by Tanahym; 04-19-2016 at 10:13 AM.

     
    Old 04-19-2016, 11:30 AM   #7
    dizzyear
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    Sorry to hear about your struggles. I have not not really had migraines or anxiety myself. I have read through many posts and these symptoms sound very tough. I hope you get a handle on this.

     
    Old 08-10-2016, 05:08 AM   #8
    lintek55
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    tanahym,
    your symptoms sound very similar to what my sister is going thru and we have no diagnosis yet other than "vestibular neuritis" from the ENT. they did hearing tests and others.. she was referred to a neurologist who requested and MRI, an MRA with and without contrast, a CT angiogram of the brain, a pet scan of brain and we're waiting for nurse to call back with a date for a spinal tap to be peformed.. my sister has had 3 prior cancers all caught at early stages. the neuro is checking for EVERYTHING, including something viral , bacterial, that can effect the brain.
    my sisters cognitive ability has declined so quickly that its frightening us.. at times she has clarity though.. it's strange. her vertigo is so bad that she has to use a walker, we got rid of the canes. she can't shower, she can't do dishes, she can't bend down, period. it sets her off balance. she has frequent headaches, her vision is effected and she's lost 60 percent of her hearing.
    did you find out yet what you have? and if so, could you PLEASE let us know what it is. the only thing the dr prescribed for her makes her extremely sleepy. nothingelse.
    it doesn't stop the dizziness. I'm am frantic and time is of the essence here. she wants to sell her house, go to an estate lawyer to settle up everything but she can't even make the call to schedule appnt because lawyer won't notorize or allow a person who's cognition is not normal. so she's waiting to feel normal.. we don't think this is going to happen. I feel like the neuro isn't doing enough. we feel she sld be put in a hospt. and tested all at once there. rather than having my weak sister go from place to place for weeks on end for different appointments. it's exhausting for her to do one thing. any suggestions would be helpful.

     
    Old 08-10-2016, 05:11 AM   #9
    lintek55
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    thank you dizzyear for writing your story.. it just might be the answer to the problem my sister is having.. we are HOPING it's not a brain tumor because she's had 3 cancers at separate times in her life which neuro is testing for. plus anything viral, bacterial, etc... I am going to suggest your diagnosis if her tests come back negative for a malignancy of any sort. thank you SO much and I'm very happy for you that you found the problem. Blessings to you.

     
    Old 08-10-2016, 09:59 AM   #10
    dizzyear
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    Re: Dizzy 10 years, diagnosed for 4 years, my story

    Hi lintek55,

    I am truly sorry to hear about your sisters struggle. Hopefully, the MRI tests come back clean. These vestibular symptoms can be very difficult to diagnose and overlap with many conditions. Wishing you the best. Let me know if you have any questions on symtpoms, etc.

     
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