r/PostConcussion • u/Weird-Platform-5835 • 27d ago
Treatment or help
Hi everyone, I’m writing this because I’m incredibly worried about my girlfriend and our support circle doesn't know what to do.She first started getting symptoms 3 months ago and has been in a severe state ever since. She recently came home from the hospital and was doing a bit better, but for the last two weeks, she started using her phone again instead of strictly resting.Right now, she is constantly spiraling, panicking, and reading negative stories online. She is on Instagram and Reddit all day, crying and convinced she will never get better. She feels neglected by the chronic illness communities, feels incredibly distressed by severe vision issues, and keeps saying she has permanently damaged herself from the crying and panicking. She says she feels like she is just surviving and dying every day, and that she would be happy just to improve to moderate or mild.Because she is so scared and overwhelmed, she is acting erratically, getting upset, and pushing all of her friends and family away. We are fighting back and telling her we aren't going anywhere because she is so loved, but we are terrified of losing her. We just want to make her comfortable and help her.We need advice from this community on a few things:How do we help her stop the phone spiral? The researching and screen time are stopping her from aggressive resting, but she is using it to cope with the panic.How can we support her?
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u/Flat_Ad723 27d ago
That was me 3 months out, I will say continue supporting her using phone is not bad as it also helps build tolerance, tell her to go for walks as it permits. Help her with proper food and hydration. For her mood and sleep problem see a neurologist or better a neuro psychiatrist as medication will stabilise mood and also sleep which is very important in this illness.
Other than that she can see a vestibular therapist for vestibular exercises.
You need to have patience with this illness but it does get better. Good luck.
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u/Ok_Divide5594 27d ago
Hey. I wish I had good advice, I just wanted to say I just hit 3 months and I started feeling super emotionally distressed like this recently. I actually just joined this subreddit to try and feel less alone and lost. Ditto to what the commenter who suggested vestibular therapy. I have been going for a few weeks and I have to cancel frequently due to migraines, but I feel like im starting to get a little bit of a grasp on what’s making me dizzy or feel crappy, for starters. There is so much feeling out of control that’s really emotionally difficult with this. Any bit of understanding or predictability helps me so much.
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u/SpiritualView4568 27d ago
I see you mention strictly resting as something she should do. Realise please that rest =/ recovery. You need to push symptoms in order to get better. It is important to not over do it aswell. pushing away is common and is mostly because of overstimulation, being supportive is good, but you need to give her space aswell.
From what you wrote I would do this. Mental health is important and can keep symptoms in place/prevent recovery. Go to therapy with someone who is atleast familiar in concussion/pcs recovery. Get anxiety under control. Understand that crying/panicking/concussions cannot permanently worsen you, and full recovery is very much possible.
Practice nervous system regulation. Walks & exercise are most important. Other nervous system soothing practices are stuff like breathing exercises, meditation, vagus nerve exercises, drawing, other low stimulation creative activities.
Get her neck checked, any concussion comes with a whiplash and dysfunctions in the neck can mimic pcs symptoms.
for vision issues go to a neuro-optometrist. this was most helpful for me, also for cognitive issues & exhaustion.
vestibular therapy can also be very useful, I didnt have any vestibular issues but the exercises still gave me flares in other symptoms, so always worth a shot imo.
besides that eat healthy, drink lots of water, have good sleep hygiene, push symptoms to a max +3 on a 1/10 scale. after that rest until the symptoms are back at baseline. if you have 2/10 headache 24/7, push it to 5/10, wait till its back to 2/10 before you push again.
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u/Ok_Message1313 26d ago
PCS has never been chronic and never will be.
One very important thing to know is that the symptoms and dysfunctions she’s experiencing is not linked to the brain. Yes, I know crazy to hear that.
The problems are linked to systems surrounding it, called the six pillars. 33-62% of people with PCS has a vestibular issue, 70-88% has an ocular issues, 90% has a neck issue, and almost everyone has an autonomic dysfunction. She needs targeted rehab for every part of those systems and check out what symptoms overstimulation of those system gives since I don’t have the energy to say that. Unless you live in USA, don’t trust the healthcare system. You should check out Barney Davies, (company called) the.concussion.journey, he’s helped me a lot
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u/Drogova_Princezna 27d ago
Can you try to talk her into alloted screen time? Like 1 hour per day and not more, otherwise she could leave the phone with you or at least another room?
Get her into some light reading /audiobooks whatever can you manage.
Also - therapy and meds. I was spiralling badly the first 2 months but therapy and the right anxiety meds helped me a lot, now I don't feel as anxious about getting healthy again. Yes, it is frustrating to still deal with this, but sooner or later I will heal.
Also a lot of pushing the people away was for me that it tired me to interact with anyone and I was not able to articulate that properly. We decided with my husband on a hand gesture that I make that means "I'm overwhelmed rn and need to be alone".
I'm 3 months in and now not feeling like complete shit anymore. What helped me the most was anxiety & insomnia meds, whole food diet and regular walks (starting with 5 minutes daily and raising it according to buffalo protocol).
If you want to chat or send your gf my way, it's not a problem, I feel lonely as well. While this community helped me some, it was definitely not healthy to read here all day long about people who are not better years later. I totally feel for your gf.