Vesties’ Village

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(@tiffanyk08)
New Member
Joined: 2 years ago
Posts: 2
Topic starter  

Hi!! I haven’t been on the forums since I signed up on the VeDA site, so I’m just introducing myself & sharing my story! 

In June 2021, I woke up to room spinning vertigo when I rolled over to my right side. I’d been sick a few weeks prior to this. After seeing a PCP, it was twelve days later when I saw an ENT & was diagnosed with BPPV. The Epley maneuver was performed twice for bilateral BPPV. Each time I sat up I didn’t feel right. Head pressure, dizziness, tinnitus, & nausea. At the end of July 2021, I had vestibular testing which revealed vestibular migraine. By this time, more symptoms had continued popping up & worsening. I felt that off-balance, 24/7 drunk feeling.

After seeing another ENT in mid-August & starting medication, I wasn’t improving much & remained dizzy 24/7. In mid-September 2021, I was diagnosed with PPPD. 

In November 2021, I made it to my ninth doctor, but third neurologist & finally was prescribed a treatment plan that’s been working! I got involved with VeDA as an Ambassador to help bring awareness to vestibular disorders. 


   
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(@cristinaf)
New Member
Joined: 2 years ago
Posts: 2
 
Posted by: @tiffanyk08

Hi!! I haven’t been on the forums since I signed up on the VeDA site, so I’m just introducing myself & sharing my story! 

In June 2021, I woke up to room spinning vertigo when I rolled over to my right side. I’d been sick a few weeks prior to this. After seeing a PCP, it was twelve days later when I saw an ENT & was diagnosed with BPPV. The Epley maneuver was performed twice for bilateral BPPV. Each time I sat up I didn’t feel right. Head pressure, dizziness, tinnitus, & nausea. At the end of July 2021, I had vestibular testing which revealed vestibular migraine. By this time, more symptoms had continued popping up & worsening. I felt that off-balance, 24/7 drunk feeling.

After seeing another ENT in mid-August & starting medication, I wasn’t improving much & remained dizzy 24/7. In mid-September 2021, I was diagnosed with PPPD. 

In November 2021, I made it to my ninth doctor, but third neurologist & finally was prescribed a treatment plan that’s been working! I got involved with VeDA as an Ambassador to help bring awareness to vestibular disorders. 

 

Que bien! Y cómo te ha ayudado este último médico?


   
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(@tiffanyk08)
New Member
Joined: 2 years ago
Posts: 2
Topic starter  

@cristinaf Hi! I think you are asking how the last doctor helped? I’m sorry, I just saw this. The last doctor actually took a thorough look at my history to confirm diagnosis & prescribe an accurate treatment plan. It’s a doctor that actually specializes in vestibular disorders.


   
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(@alanna)
New Member
Joined: 1 year ago
Posts: 2
 

@tiffanyk08 

I am new to the forum.  I have been dealing with chronic recurrent BPPV for 3 years, and think I might have vestibular migrane.  I cannot seem to find competent care.  Did you have neck pain also, and a dizziness sensation in your neck even when BPPV was not active?  I feel like I have had PPPD for 3 years.  I wonder also what medication or treatment plan helped you.  Do you still get BPPV episodes or is that gone?  

Thanks for sharing.  I am so desperate to know what others have done.


   
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 Jan
(@arabas)
New Member
Joined: 1 year ago
Posts: 2
 

Hi folks,

I have balance problems from hydrocarbon poisoning that led to polyneuropathy. I'm starting vestibular therapy at Spaulding Rehab in Boston next week and hope this will help. I've fallen a few times, so I'm using a cane to prevent future falls. I get very dizzy and unstable when turning or changing direction, like when walking down a flight of stairs with a landing. This seems to be worse when I turn left, which is  the same direction I fall in taking the Romberg test. I wonder if anyone here has similar problems? Anyone with peripheral neuropathy? Any advice? Thanks and heres hoping for everyone to get better.

 


   
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 Jan
(@arabas)
New Member
Joined: 1 year ago
Posts: 2
 

@alanna Hi, I was diagnosed with vestibular migraine by a neurologist after a full workup at the ENT center at a teaching hospital. I had a tilt table test, a caloric test, and other balance tests. My neurologist prescribed Emgality, a monthly prophylactic injection that has controlled my migraine very well for three years now. I no longer get vertigo, headache, etc. I sometimes get a visual aura but without headache or other symptoms. Can you go to a teaching hospital? I found that the comprehensive services and doctors at a major medical center affiliated with a medical school were well equipped to help me. Good luck --it can be tough to find the right people to diagnose and help someone with vestibular migraine, but they are out there. Don't give up!


   
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(@akenealy)
Active Member
Joined: 1 year ago
Posts: 7
 

Hi Vesties:

 

I’ve been living with vestibular neuritis for about 4 years, though getting an actual diagnosis has been fairly recent. For the first few years, I had terrible brain fog and felt that I was walking on the deck of a ship in a pretty good swell much of the time. My internal steadi-cam would jump with every other step. It wasn’t it until my general doctor sent me to a very helpful neurologist (whose brother in law is a neuro ent, who later diagnosed me), that I started to get some answers. I had a couple rounds of vestibular PT, and that helped me gain some knowledge of this “new” body and coping skills. 

Still, for the first two years the brain fog was terrifying. It felt as though there was this fuzzy spot in the middle of my frontal cortex that I just had to maneuver around to think. I’m a grant writer, and this fuzzy spot really interfered with how I mapped out proposals and reports. My team was amazing and a huge help — and I learned to rely on them. I had to drop being a perfectionist — something I wish I’d done decades ago. Getting to work every day, what with crowds, subway trains, buses, etc., left me nauseous and holding on to corner light poles most mornings. I don’t think I could have done it much longer, and then COVID lockdowns hit. Skipping the vestibular nightmare commute gave me a time and space to heal and regroup. Silver linings!

Getting the diagnosis that my right inner ear nerve is basically shot (“flying with your left engine only” doc said) was kind of a relief. I don’t have to think I’ll get “back to normal” and I can move on with whatever I can do now to live my life. It also made me braver about being honest with family and coworkers that I have a disability, instead of trying to pretend I am my old self. I’m buying hiking poles and am going to get training in how to use them. I’ve returned to my favorite hobby, glassblowing. (My studio mates are truly brave people!) 

I am so happy I found this website and forum! Thanks!

 

DizzyBroad

This post was modified 1 year ago by DizzyBroad

   
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