I hate Nystagmus, my eyes are so wobbly #nystagmus

#nystagmus is a challenging disability.

For the past two days, my peripheral vestibular dysfunction, for whatever reason, has exacerbated exponentially.

I am so sick of being trapped in this broken body. I am weary of the constant pain. Of knowing there is no relief to be found.

Even trying to rest in bed is impossible. My body feels like it is completely out of control.

#disabled #InvisibleDisability #Vertigo #Nausea #Nystagmus #Confusion #InnerEarParalysis #ChronicPain #MVA

[Automatic repost https://twitter.com/dystobot/status/1612356072148275201]

RT @caceytaylor4: Primary coenzyme Q10 deficiency: MedlinePlus Genetics https://t.co/i86JEihxC2 #cerebrum #Optic #opticnerves #dystonia #nystagmus #retinopathy #innerear #edema #anemia #abdominalcavity #blood #bloodcell #bloodcells

A very fascinating thing happened to me today. I got a #migraine. I rarely get them, so I did what I recommend to my patients: look for triggers. The only thing out of the ordinary was that I went to the playground with my 5yo and played on the spinning seat.

I gave myself 100% physiologic #nystagmus--and hours later got a migraine.

#neurology #neurotology #vertigo #vestibular #VestibularMigraine #MedMastodon

1/2

I’m trying to look for a new magnifier as the one I have is not strong enough.

#VisuallyImpaired #CVI #Nystagmus

One area I enjoy spending my time is writing to raise awareness about disability.

Here is a blog I wrote about Nystagmus. It is an eye condition I have.

http://pipxar.com/2022/06/20/1050/

#Nystagmus #VisuallyImpaired #Blog

A great #PhD opportunity working on #Nystagmus #zebrafish model at Mervyn Thomas lab
https://twitter.com/MervynTh0mas/status/1604728573335592960?t=po5aVfi2_cpto8wU99vbig&s=09

We'd never heard of #Nystagmus until our youngest boy was diagnosed. The Nystagums Network in the UK has been a valuable resource that we're so #grateful to have found. While there still may be more to our newborn's diagnosis it's comforting to have located information, research, & suggestions so we can help our little one get through the challenges he will likely face.

https://nystagmusnetwork.org/

Not a lot of new information after today's visit. He does have #Nystagmus, #Pendular 2-3 Hz. Too young to r/o #FovealHypoplasia (can be caused by #Albinism), back for another evaluation in 5 months. Discussed possible #GeneticTesting. Kind of playing the waiting game to fully understand #Etiology & potential treatment.

We have been referred to see #Pediatric #Ophthalmology tomorrow to investigate #Nystagmus for our little guy. This mom is a bit nervous. Never heard of this condition until a few days ago. I feel like I'm on pins & needles waiting to find out what this means for my #newborn.