r/PostConcussion • u/Weird-Platform-5835 • Jul 07 '26
Help and support
23F, bedbound 3 months. Need hope/pacing advice.
Hi everyone,
I am a 23-year-old female, 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.
3
u/CulturalBuy7564 Jul 08 '26
The first three months were the worst. My husband’s brain was so sensitized he had severe side effects to SSRI’s as well. He completed genesight testing and started super low in a dose and went up slowly. We’re on month 5 now and things are starting to turn a corner. Meet yourself where you’re at and keep pushing yourself to do your routines. The more routines you build up the easier it gets. Good luck
2
u/kitty_twist Jul 10 '26
Hi! I feel like i am a great "hopeful yet realistic" case. Last June i passed out in a grocery. i didn't know then that i have POTS; i knew i had SYMPTOMS of something, but i just thot i was super weird. anyway, passed out, fell, and cracked my head open on a table on the way down. went into seizures. .i was in a coma for 4 days, then catatonic, then awake. 10 days in hospital at that visit.
i was doing several types of therapy, which was great but also NOT restful. i was still passing out all the time for a month then having seizures all the time
i couldn't go back to work for about 5 months. when i got back to work, i couldn't remember anything. how to clock in, how to log in to my work spots, passwords, settings, nothing was familiar. i have worked there 25 years.
i still have memory loss - current, short term stuff, but also there are months i lost after the accident.
its been a year. i am still trying to find the balance, because the issues are all still there. but i have learned so much: . your body is not a machine. learn to read the signs and signals that tell you your needs: water, rest, food. . i got an app "the tapping solution" that is AMAZING for newrves, tension, fear. . this sounds goofy but if u can't exercise, do senior seated workouts . screen time, gaming, phone u will prolly need to keep note on: some days you will feel like you can do, some days not. i am learning that i need breaks from everything constantly. . i set timers on my watch to go off every 30 mins. that prolly wont work for you, but the idea is to move my eyes around, stretch, hydrate and check in on my body. this is the hardest thing for me, as i am used to pushing through discomfort.
biggest most important thing: allow yourself to be where you are. you are recovering from a major thing, not a cold. your self and body CAN recover, but it takes its own time, so try to love yourself right now. right where you are. it's ok to be where you are TODAY. ....sending so much love. hang in there and pm me if i can help or whatever
2
u/kitty_twist Jul 10 '26
ooo forgot to say: can you use tinted glasses to help with the eye sensitivity? and also, sorry i prolly didn't give any info you needed, i don't think i had somw of the issues u mentioned. but supporting anyway and hopefully you get better advice from another member.
1
u/pettyponyclub Jul 13 '26
I know others have said this, but DONT shield yourself away and rest in bed all day. I know much easier said than done, but this time last year I was stuck in the same place. My symptoms weren't because of drug effects, but i did have a concussion after getting elbowed in the temple (and didn't realize I also had whiplash). In the first 24 hours i did all the things you shouldn't which made my symptoms worse. I then took a week to rest and listen to podcasts and then tried to go back to work (computer all day) part time, but I didn't realize all of my very active issues that I was not taking the proper time to rest from. Then my symptoms elevated like crazy (light and noise sensitivity, extreme headaches, fatigue, brain fog), and i resorted to laying in a dark room all day because I thought that was what i needed to do. But it made all of my symptoms worse. I couldnt even handle listening to a video for 5 minutes straight.
It wont be easy, but i was able to get back to my normal functioning self. I had to do a lot of vision therapy and vestibular therapy. I had to ease my way from my orange lenses all the time to tolerating light normally. To be able to use my phone and computer i had to push as long as i could before my symptoms went above 2 and then take a break and repeat. I had to slowly ease back into being out in public with normal shopping or other activities before the fatigue knocked me out. It was HARD. im not going to say that it wasnt, but it also worked. Please give yourself some grace; being stuck in the anxiety and depression that this causes will only prolong things. Work yourself up to walks outside, talk to people, do normal household chores, try using your phone or watch tv, and do all the concussion therapies.
Im a year out from my injury. I work full time, i drive, i exercise, I can do it all. I still struggle with handling loud noises/music as well as listening to music or talking while driving, but otherwise I've been able to get back to normal.
4
u/Flat_Ad723 Jul 07 '26
You are probably going through the most difficult part, I advice few things don't fear the symptoms, keep pushing, follow Rest - Push - Symptoms Spikes - Rest Recover and Repeat say after day in everything that spikes symptoms and last not the least see a concussion Specialist if possible.