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New to group, trying to find some support and answers


AmyS
 AmyS
(@amys)
New Member
Joined: 2 months ago
Posts: 1
Topic starter  

Hi, My name is Amy, My symptoms started a little over a year ago and I am searching for answers as to what is wrong with me.  Having this in the middle of a pandemic has made seeking help very challenging, and some of it is my own stubbornness to admit something is wrong.  I have episodes that start  with tinnitus, fullness in the left ear which leads to hearing loss, followed by severe dizziness, nausea and vomiting.  When I had my first episode, my family doctor gave me meclizine for the dizziness and phenergan for the nausea and vomiting.  My symptoms subsided after about 4-5 hours and then returned about a week later (though less severe) and then again about a week after that.  So after three cycles of this weirdness I went to an ENT.  By the time I saw him, most of my symptoms had cleared, except for some tinnitus and the hearing loss in my left ear.  He said he was unsure but thought it might meniere's.  At that time he recommended some balance therapy, MRI and hearing aids.  Because of the pandemic, both the therapy place and the MRI center were shut down, and I had difficulty finding an audiologist that took my insurance.  Sooooo I just gave it some time and my hearing returned and I carried on with life, and like everyone else tried to avoid COVID.  I had a couple more very mild episodes (one in September and another around Thanksgiving but other than that I was relatively symptom free. Then I had a pretty bad episode in early 2021 that prompted me to go back to my Primary care doctor.  He sent me to a different ENT who thought maybe I had basilar migraines (although a headache had never been a part of my symptoms), offered to put me on Topimax, but I declined since my symptoms had once more cleared up and the thought of taking an anti-epilepsy drug on the daily for something that had only happened a few times over the course of a year seemed overboard (again my stubborness)--plus he couldn't say for sure whether it would help of even if basilar migraine was what I have (his bedside manner was also very lacking).  Fast forward to present...I have been dealing with my last and most severe episode for almost three weeks.  I can't seem to get past it.  Last night I went to the ER because we could not get the vomiting to stop with the phenergan.  He gave me Zofran, more meclizine and started me on a diuretic (can't remember the name). I'm scheduled to see the original ENT again tomorrow.  Hoping we can find some clear answers and that I can get past this latest episode and return to my life.   Half the time I feel like I'm going crazy because the tinnitus is so bad, then the dizziness and nausea hit and I just get so sick.  Hoping someone here will read this and provide some insight into what might be happening and some hope that there is a way to keep it from happening again. Thank you. 


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Momofboys
(@almeeko11)
New Member
Joined: 4 weeks ago
Posts: 1
 

Hi Amy,

I am sorry to hear what you are dealing with.  I have similar symptoms, and have been diagnosed with Menieres disease.  When I have an episode many of things you describe happen to me except mine is my right ear.  I have tinnitus then a fullness or muffled hearing in my right ear followed by veritgo than can cause the nausea and vomiting.  After the episode my hearing returns, but each episode can cause some hearing loss so it is important to see an audiologist.  I was diagnosed by a neurotologist who checked my hearing and ran several other different tests on me to rule out other things.  I lowered my sodium intake and was put on a daily prescription diuretic along with an antiviral to help decrease my episodes.  I recommend looking for a neurotologist over an ENT as they are more specialized and typically have more experience with Menieres (if that is what it is).  I hope you find the help you are looking for.  

 

Take care.


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tobi alinsky
(@tobialinsky)
New Member
Joined: 2 days ago
Posts: 1
 

Hi, Amy. im sorry for what you're going through i hope all your bad times convert int good very soon. i would suggest you to massage your ears with essential oils to soothe the pain (if you have any) and or any discomfort you're feeling.


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