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New, confused and scared

Discussion in 'Your Living Room' started by Diana21, Apr 16, 2019.

  1. Diana21

    Diana21 New Member

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    Apr 16, 2019
    hi everybody, I’m a 30 year old female, MOTHER OF 2 (which makes this even harder) and I’ll try to make this as short as possible.

    Here’s the background:
    -i was diagnosed with migraines with no aura in 2014, they are the typical “pain on one side of head that get better with imitrex” type of migraines and usually only get them during or right before my period.
    -early 2016 I started having this weird swaying feeling only when I stayed too still, went to the dr, all test came back normal and by the time my dr thought of sending me to a specialist the feeling has gone away so nothing wa done.
    -August 2017 started having ringing in my ears sometimes accompanied with clogged feeling, was prescribed nasal allergy spray but that didn’t do much
    -December 2017 the swaying, rocking feeling came back and was sent to the ent, as soon as I said I had migraines she got fixed on the fact that it was my migraines causing it and told me to find a neurologist, in the mean time sent me to vestibular rehabilitation which helped and the swaying feeling went away
    -February 2018 stablished care with a neurologist who ordered MRI which came back clear of any abnormalities, he didn’t seem too concerned about my migraines since they seemed to be hormonal but still started me on prevention medicine (trokendi) ...it gave me bad acid reflux so I stopped it
    -rest of 2018 went normal when it came to migraines and balance problems but was diagnosed with severe endometriosis after emergency surgery (telling this cause is kinda relevant) and in July 2018 I got the mirena iud, after the mirena I started getting more migraines but they assured me it was my body getting used to it and since it started working so well for the endometriosis issues I’ve stuck with it.
    -December 2018 the swaying rocking sensation comes back, this time it’s not only when I stay still, I can feel constantly through the day no matter what I’m doing and the only thing that seems to help is driving (weird) ...I go back to the ent and she order a VNG, hearing test and more vestibular therapy.
    Thw hearing test showed no loss, The VNG results were very confusing or at least the way that she explained them to me was, she said I showed problems in two variations (I swear this is how she explained it) and that one of them was mostly because of my migraines and the other variation was because of inner ear problems, my mistake was getting scared and not scaring for clarification.

    So here’s the current problem, the migraines are only getting worse to the point of going to the ER 5 times back in February-March because of the unmanageable pain, I had a ct scan done, blood work and even a spinal tap and everything came back normal, my neurologist started me on aimovig injection but it’s only being 3 weeks so I cant tell yet if it’s going to work, I have an appt at the end of April with my Gyno and I’m gonna ask her to get the mirena out, BUT the balance problem hasn’t resolved since December, I’m always swaying and rocking, sometimes it feels worse than others but the feeling is ALWAYS there. Last week I went back to the see the ENT cause now I’m having ringing in my ears again and since those bad migraine episodes in March I’ve been feeling pressure in my ears and she told me it could be a variation of Menieres and again told me about the variations that the VNG showed but didn’t go into detail, told me to start Valtrex to see if that helped but only gave me 20 pills and for what I’ve seen here I would need way more than that.

    I’m more confused than ever after that last visit, I did some research since I don’t feel like she’s the dr for me and now I have an appt at the Tampa bay hearing and balance center which has really good reviews but as of right now I’m just so scared, my mom hasn’t Menieres and I’ve seen her suffer, I’m always so anxious waiting for the bad vertigo attacks like the ones she gets but to be honest the only time I was spinning was when I had the VNG done and they put the hot air in my ears (I knock on wood and hope to never be as dizzy as that thing made me) ...

    I lost track of everything I wrote . I don’t even know what my question is, but what do you guys think, with your experience does this sound like a “variation of Menieres” like she said or does this sound more like MAV.
     
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  2. Clare

    Clare Active Member

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    Mar 31, 2018
    Diana, it's terrible to be having symptoms without a clear diagnosis to sink your teeth into. Many of us have been there before finding a doctor who could confirm the symptoms and diagnosis. In general, Meniere's is defined by all four characteristics: vertigo; hearing loss in lower frequencies; tinnitus; and a feeling of fullness in the affected ear. It doesn't sound like a great match to what you describe, and my personal opinion is that "variation of Meniere's" could be code for "I don't know what you have but want to say something."

    It's good that you have an appointment with a balance center; perhaps they can offer you something that seems to fit. Keep researching and looking for doctors who make sense to you and aren't brushing you off. In my simplified view of things, hearing and balance involve structures within the inner ear (cochlear and vestibular hair cells) along with nerves connecting to the brain that signal how to interpret or adjust for what is sensed. ENTs specialize in ears (and know very little about nerves and brain), and Neurologists cover the nerve/brain piece, but lack knowledge of the inner ear. However there is an ENT subspecialty -- Neurotology -- who seems most knowledgeable about the area between inner ear and brain where Meniere's is. There is also a Neurology subspecialty -- Otoneurology -- that studies the brain to ear connection from a different perspective. Maybe one of those specialists can help you. In my experience, we have to be our own navigators to find the right doctors. Be persistent, research, and trust your instinct for what makes sense with what you feel.
     
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  3. PleaseNoDizzy

    PleaseNoDizzy Member

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    May 12, 2014
    Hi Diana,
    Everything Clare said is spot on so I’m just gonna ditto all that.

    On a lighter note (sort of) I was also a mom of 2 who had gotten the Mirena the previous year when my Menieres came out of nowhere. I also had it removed out of desperation thinking it was involved in the onset of symptoms. That was in 2011. Will probably never know if that was the case or just coincidence, but my surprise #3 will be celebrating his 7th bday in a couple months. We love him to pieces but had he been a girl, some friends thought his name should have been mirena...
     
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  4. AmyLeigh

    AmyLeigh Member

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    Mar 26, 2019
    Diana - I have classic Meniere's, not any variation, so I'm not familiar with your symptoms and can't really provide feedback as to whether you have Meniere's, MAV, or something else. I can tell you, however, that my Meniere's symptoms have definitely been related to hormones. If you search on this site, you will see others have had similar experiences - so don't rule out a hormone component. This forum has been a wealth of information (and hope!) for me - I hope it provides you some guidance as well. I am also in my 30s with two little kids so I definitely understand where you're coming from - it's terrifying at times. Sending you healing vibes and happy thoughts - keep us posted on how things go!
     
  5. Rebecca

    Rebecca Member

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    Jan 19, 2019
    Hi Diana,
    I am glad you are going to see another doctor. I saw 4 before finding one that could give me a diagnosis and actually stated he couldn't "cure" the Menierer's, but he could help me manage the symptoms. Unlike the other's that told me I just had to learn to live with it. I have suffered with Menierer's for about 19 years. I am now 66. I totally understand the unsteady & swaying feelings you have, as can most people on this site. I hope your new doctor can give you some clarity, as being uncertain as to what is going on can make the fear worse. I wanted to tell you, also, that my son started having imbalance and some vertigo symptoms. (He had migraines when he was young), then years in between when he didn't have them. His doctor has diagnosed him with vestibular (sp?) migraines. He says he has been told it's basically migraines without the pain, but with the vertigo type symptoms. I am not sure what medication he is on for this, but said it has helped him. You might ask about this condition. Good luck to you. This is a good site to receive info, and encouragement when you need it.
     
  6. Pupper

    Pupper Active Member

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    Oct 15, 2016
    What Clare said.

    Getting Meniere's is like having an exotic foreign car with engine problems. You wouldn't take it to the local garage. They'll just act like they know. You have to take it to a garage that specializes in exotic foreign cars.

    Meniere's is still often an enigma to Meniere's specialists. So your average ENT will flounder on the subject.

    I was lucky to have a humble ENT, who pretty quickly said, "your problems are out of my league, I'm sending you to the big brains over in LA."

    I'm glad you're going to the Tampa clinic. They know their stuff from what I hear.

    Peace will be yours in time.
     
  7. Diana21

    Diana21 New Member

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    Apr 16, 2019
    Thank you all for your kind words and reassurance...the last 3 days have been the worst so far, constant feeling of movement even when trying to sleep or driving which were the only two things that hadn’t been affected.

    My husband took today and tomorrow off so I could rest and see if that helps ...I’m lucky to be a stay at home mom but seeing my husband having to take days off makes me feel so bad, I don’t want this to affect his career too, this is definitely taking a toll on my emotions as well, yesterday I cried more than I’d like to accept.

    I can’t wait for Thursday to see what the new dr says
     
  8. Pupper

    Pupper Active Member

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    Oct 15, 2016
    so sorry, gosh...
     

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