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Tiffany K.
(@tiffanyk08)
New Member
Joined: 8 months 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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Kristidoz
(@cristinaf)
New Member
Joined: 3 months 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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Tiffany K.
(@tiffanyk08)
New Member
Joined: 8 months 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
(@alanna)
New Member
Joined: 1 month 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
 Jan
(@arabas)
New Member
Joined: 2 weeks 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
 Jan
(@arabas)
New Member
Joined: 2 weeks 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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