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I believe neurologist is misdiagnosing me with epilepsy/seizures.

Discussion in 'Your Living Room' started by Union Man, Oct 1, 2021.

  1. Union Man

    Union Man New Member

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    Oct 1, 2021
    Here are my common symptoms:

    For the past 10 years I have chronic tinnitus in my right ear, don't notice it unless it's really quiet and sporadic nystagmus (eye shake slightly not always with tinnitus but never without).

    Early stages of attack: Aura preceding an attack, a general unease or agitation, or a legit stressful situation, and tinnitus in my right ear will get louder until it feels like it's filling with water and I go almost completely deaf in that right ear.

    During attack: I experience a lot of tension in my head, but not quite a headache, sometimes I recover, other times it will progress to vertigo. Turning my head all but slowly will make the room feel like it's spinning violently, lose control of my eyes and they will dart back and forth like watching a ceiling fan spin. I usually lay down or sit depending where I am and close my eyes. Nausea, sweats and bowel movement will creep in depending on how well I can control the vertigo (by keeping still).

    End stage: I can tell I'm beginning to recover when tinnitus comes back, it's like loud popping and clicks like the sounds you hear when under water. As I recover, frequency increases and it begins to sound like a geiger counter until it goes back to baseline high pitched ringing. I usually will feel exhausted depending on how long it took and have a headache. Sometimes I will regain my balance but the deafness will persist for hours, or it all comes back very quickly.

    All that being said, the ENT said because the hearing test didn't show any noticeable permanent hearing loss in my right ear they think it was vestibular migraines and sent me to a neurologist. Neurologist on the first day issues me migraine medicine and anti-seizure medicine. Migraine medicine did not help at all, and I never retrieved the anti-seizure medicine.

    I argued with the neurologist today about his seizure diagnosis because he's been very dismissive of my hearing loss and didn't seem interested in the distinction between being "dizzy" and having serious vertigo. He's very confident I'm having seizures based off the EEG (brain scan) made a point to tell me that other states require he report that diagnosis to the state where they could take my license. Sounded like a veiled threat and really pissed me off.

    What I understand of menier's is that there is a lot of overlap with other conditions, and it's not diagnosed unless all others contributors are ruled out. I'm upset because I feel like this doctor hasn't listened to me, when I told him (again) that I have hearing loss with every attack he acted like it was the first time I told him, then quickly dismissed it as anything worth noting, insisting I'm having seizures.

    I will browse other posts, but I would love some input.
     
  2. Punture

    Punture Member

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    Sep 4, 2021
    It sounds like you are quite frustrated with your doctor. But, dismissive as he is, he is a trained neurotologist who has seen many patients. He just may not have great communication and beside manners but may know what he is talking about.

    I am obviously not an expert.

    If you actually look up the diagnostic criteria of Meniere’s it requires you to have a characteristic lower frequency permanent hearing loss. If you dont have that then the best they can do is give you “probable meniere’s” diagnosis or something like that. It sounds like you got an EEG which picked up seizure activity. This would be very weird for meniere’s as obviously it is not a seizure disorder.

    At the same time the symptoms you are describing does overlap with Meniere’s. You might want to get a second opinion. However, it is not like having Meniere’s is any better of a diagnosis… in fact I would say it is worse.

    also, many of the treatment for meniere’s you can start without the doctor formally diagnosing you. You can start low sodium diet, try JOH regimen and other supplements and see if they help you at all.

    hopefully you will get to the bottom of this.
     
    • Fistbump/thanks Fistbump/thanks x 1
  3. Union Man

    Union Man New Member

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    Oct 1, 2021
    I read that meniers can progress to permanent hearing loss. Maybe I'm just not there yet? I work in construction so I was relieved when they said my hearing tests look good. I wear ear protection often.

    Considering the legal implications of an epilepsy diagnosis I really don't appreciate them making it official until they can convince me they are right. Doctor even drew me a diagram and the symptoms he was describing didn't match up with what I'm experiencing.

    My ENT doctor is referring me to another specialist that they claim knows a thing or two about meniers.
     
  4. Punture

    Punture Member

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    Sep 4, 2021
    Ah you are right then. I think the doctor should be cautious of the epilepsy diagnosis - That makes more sense now.

    I think it is a good idea to get second or even third opinion. Your ENT sounds like a nice doctor willing to send you to different subspecialists.

    In a weird way though I still hope you don’t have Meniere’s (and epilepsy). It is truly a terrible disease. I do not even wish it upon my enemies.
     
  5. Union Man

    Union Man New Member

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    Oct 1, 2021
    I got a second opinion and this other doctor does not believe it is epilepsy. New doctor thought it was vestibular migraines because I haven't experienced permanent hearing loss.

    Until this past week.

    I woke up with terrible vertigo and my hearing in my right ear has not recovered. Everything is muffled, and I have constant ringing in that ear (I always had varying degrees of tinnitus in that ear).

    I am starting to wonder if it's related to blood pressure, or even posture. The day before I lost my hearing I stood up in my work van and jammed my neck. This is something that has happened repeatedly through my career in construction. Hardhats save your head, but don't save your neck.

    My tinnitus and vertigo symptoms come from my right ear. I have tightness and discomfort in my right side neck, and shoulder, and upper back, and lower back/hip. All the chronic issues I have are on my right side. I just think something else is going on that no one doctor seems to be figuring out. Chiropractors will crack your back, but they don't seem to care about physical therapy and correcting posture. Doctors want me to change my diet, or take pills, but never seem to mention muscular/skeletal imbalances.

    It's all very frustrating. Has anyone tried a chiropractor and physical therapy to correct their neck posture?
     
  6. teesdale

    teesdale Active Member

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    Oct 24, 2014
    Sorry you're having these issues and particularly having different diagnoses. In their defense, they do call it practicing medicine for a reason. I am certainly no expert but with everything pointing to the right side I would suspect menieres after you rule out other more severe possibilities with an MRI or Catscan.

    I have tried physical therapy (aka vestibular rehab) and a chiropractor.

    The chiropractic science has changed over the years. Roughly 15 years ago it was all about the Atlas vertebra, which is the top vertebra. The practice was a miniscule adjustment of the atlas to take the pressure off the one side of your head and thus free up fluid flow through the ears. I cannot attest to the efficacy of the treatment because at the time I was so desperate for relief I tried at least 7 different treatments simultaneously so not sure which worked. I think having your alignment checked is not a bad move anyway. I believe most atlas practioners have expanded to include more of the spine.

    Vestibular rehab is another treatment with a difficult success rate to pin down. But when I start to experience syptoms, it is one of the first things I do. You can easily google vestibular rehab exercises or if you have decent insurance coverage visit a specialized physical therapist.

    Best of luck to you.
     

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