№16677008[Quote]
Hi everyone,
I am a 23-year-old male, bedbound for 3 months after a whiplash concussion in January and a severe adverse reaction to Zoloft in April. I am feeling completely hopeless after reading negative stories online, and I really need some honest positivity and hope today.
My Symptoms:
• Severe Closed-Eye VSS: A constant, violent "galaxy" of flashing rainbow stars, moving shapes, and circles attached to the corners of my vision behind my eyelids. It makes me dizzy and carsick even while lying completely flat.
• Severe POTS: My heart rate spikes to 125–130+ just from sitting up, causing air hunger, weakness, and internal tremors. I can only use the restroom twice a day at most.
• PEM & Neuro-Fatigue: I’ve been to the ER 6 times since April due to fearmongering and acute spikes. The PEM from these trips brought on the severe visual snow 2 months ago. I am very lean and fight to keep my weight up, often falling asleep during dinner from pure exhaustion.
The Good Signs:
My body is structurally fine my advanced ARUP labs are 100% negative for autoimmune brain antibodies. My stomach works perfectly, I digest fine, and I crave my favorite foods. I also have an amazing boyfriend, supportive friends, great parents, and good health insurance.
My Pacing Dilemma:
Total sensory blackout is the only thing that calms my symptoms. However, when I did a 3-week strict dark rest block, my eyes became so un-adapted to light that I got severe Alice in Wonderland Syndrome (things distorting in size) and extreme dizziness when I opened them. I feel stuck between starving the VSS and making myself hyper-sensitive to the real world.
I see a neurologist on July 27th and a top autonomic specialist (Dr. Chen at Cedars-Sinai) on September 30th for my POTS.
I just want to move up to a moderate or mild baseline so I can feel human. I want to take a shower, watch TV, play Roblox, and FaceTime my friends.
Has anyone with a concussion + drug shock trigger improved from severe back to mild/moderate? How do you balance resting your brain without triggering light sensitivity and distortions when you open your eyes?
I just feel so alone and scared today. Any honest reassurance or pacing advice would mean the world. Thank you.
№16677011[Quote]
show us your butt op
№16677099[Quote]
>>16677008 (OP)I read when managed properly, POTS has a good prognosis.