Vesties’ Village

Notifications
Clear all

New to group, trying to find some support and answers


AmyS
 AmyS
(@amys)
New Member
Joined: 6 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. 


Quote
Momofboys
(@almeeko11)
New Member
Joined: 5 months 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.


ReplyQuote
tobi alinsky
(@tobialinsky)
New Member
Joined: 4 months 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.


ReplyQuote
David Morrill
(@wolf1476)
Active Member Moderator
Joined: 1 year ago
Posts: 44
 

Hi Amy,

     So very sorry you are going through this, I know how difficult this can be. Unfortunately your case is very typical in the Vestibular community as it usually takes healthcare professionals 3 or more times to correctly diagnosis a patient. However there are some things you can do to help advocate for yourself, first get yourself educated as  much as possible about you current symptoms. https://vestibular.org/article/diagnosis-treatment/trouble-getting-a-diagnosis/
Keep pushing forward as your symptoms come and go this is also very common with vestibular disorders as well, also keep pushing your doctors to help get you a correct diagnosis. After you get the correct diagnosis it will be much easier to treat your correct disorders. I truly hope you start to feel better real soon.


ReplyQuote
Tony
 Tony
(@tonys)
New Member
Joined: 2 weeks ago
Posts: 4
 

Good morning,

Just came across your site and forum. I would like to report the following:

Caucasian male, 72 years old

21 October 2021 2nd Pfizer dose

2 November 2021 walking up a fairly steep hill I suddenly got dizzy/vertigo and almost fell down due to imbalance. Now 2 months later these symptoms persist. The first hospital I visited on 4 November gave me an MRI and ruled out central vertigo (oof) and diagnosed me with BPPV. They prescribed Serc 24 mg 3 per day. Two months later there were no improvements and I visited a second hospital where they did far more extensive testing. First a vascular specialist gave me a ABI which was normal. Then an ENT specialist examined my ears which were normal, followed by a hearing test, also normal for my age. Lastly a neurologist examined me and gave me an MRI of the brain, MRI of the arteries leading to the brain and an MRI of the whole vertebral column. All normal. Lastly he gave me an echo doppler of the carotid arteries. Normal.

So could anyone please point me in the right direction because after all these "normal" results, after 2 months I am certainly NOT normal.

Any help or advice would be highly appreciated. 

 

P.S. Whenever I asked a specialist if it could be a side effect from the 2nd Pfizer vaccination they all scoffed at this suggestion


ReplyQuote
Lissa
(@uhsecretary12)
New Member
Joined: 2 weeks ago
Posts: 1
 

@almeeko11 Hi my name is Lissa, I hope and pray you have found out some answers and have gotten relief by now January 2022. My symptoms started in July 2021 and 2nd on going episode started in October 2021 this one is still ongoing. Like you I have been on antibiotics and steroids with no relief. Now I'm currently seeing an ENT. He inserted a tube in my right ear for drainage but to date nothing has drained out. I have constant fullness, pressure and some ringing in my right ear only. It is very hard to work with this issue. I work in an office as a secretary. I'm constantly looking for answers to my ear problem. 


ReplyQuote
David Morrill
(@wolf1476)
Active Member Moderator
Joined: 1 year ago
Posts: 44
 

@tonys hi I know that this is very frustrating as I am a patient as well. These disorders sometimes take several doctors visits to diagnosis correctly. Keep insisting that your doctors dig deeper to look for your diagnosis and educate yourself as much as possible, by visiting vestibular.org. Also don’t discount the Covid vaccine as a possible side effect, we have an entire page dedicated to that https://vestibular.org/forum/dizziness/covid-19-vaccine-side-effects/paged/893/#post-19746  

best wishes on your journey and remember we have an entire community that can help!


Yahni liked
ReplyQuote