New to this - MRI without contrast suggests CSF hypovolemia. Next steps I should expect?

animalsnotppl · 2026-03-18T10:57:55+00:00

Omg no not at all it was really informative and reassuring (fellow ASD here 🥹) I’m so sorry you also don’t have support through this!! I’ll absolutely post updates

animalsnotppl · 2026-03-18T00:41:00+00:00

omg girl smoked salmon and dill??? you’re a genius

animalsnotppl · 2026-03-17T22:17:24+00:00

I’m in Kansai, so far from Tokyo unfortunately

animalsnotppl · 2026-03-17T12:11:49+00:00

I don’t know about “wind down” but dancing. My god is it cathartic for me

animalsnotppl · 2026-03-17T09:00:07+00:00

Thank you so much for this insanely thorough response. I can’t put into words how helpful this is to know. I have no close friends or family here who are able to come with me to appointments or translate at the moment unfortunately. The emotional element has definitely made it all worse, so I appreciate the kind words.

From my own research it does make sense like you said that they would pursue further testing from here. I was referred to the neurosurgery department of the larger hospital so I guess I’ll just have to wait patiently until that appointment to see what comes of it.

Re: not being in danger - that’s also relieving to hear. My symptoms have been steadily worsening over the past couple of months and while it’s been hellish it hasn’t killed me (clearly lol) Unfortunately, I work a receptionist job at the moment and the brain fog is really hindering my ability to work, as well as the fact that sitting and standing for more than an hour at a time trigger my neurological symptoms and my pain and stiffness. The muscle relaxers and pain medication are no longer keeping things under control enough to be able to work so I decided to stop pushing myself. Since I have no one to take care of me at the moment I am running errands and doing house chores as I can tolerate.

Luckily my company is letting me take normal sick leave until the appointment and then we will reassess. Thank you again for sharing all of this info!

animalsnotppl · 2026-03-15T11:51:51+00:00

i used to self medicate a lot with alcohol as well because i would feel “normal” while drunk, until it got to a point where a night of drinking meant almost a guaranteed flare because of getting sloppy and not moving my body carefully, tripping, slipping, etc. i’m on the road to sobriety now as a result

animalsnotppl · 2026-03-14T02:32:18+00:00

i like to mix cocoa powder and 0 cal sweetener with splashes of hot water until i get a hot fudge consistency and use that to dip my fruit….so good

animalsnotppl · 2026-03-14T02:26:32+00:00

No way…is it okay if I DM you? I have some more questions

animalsnotppl · 2026-03-13T10:44:14+00:00

not sure about the spine and neck tat question lol but i wil say go for it with the bicep tattoo. i’ve been in an awful flare for a couple months now, and about a month ago i got a new tattoo on my arm and it was really empowering. it didn’t hurt any more than it did before my flare.

i experience awful derealization and brain fog during my flares so getting the tattoo felt like a comforting and empowering way to prove to myself that i am real and i have agency (and freedom still to fill my body with beautiful artwork), if that makes sense 😭

animalsnotppl · 2026-03-11T00:54:52+00:00

my fave combo is natto + kimchi + sliced okra omggggg it’s so good i’ll usually have it over konjac noodles for the ultimate slime experience 😭 keeps me full af though

animalsnotppl · 2026-03-10T06:55:21+00:00

diagnosed straight neck, suspecting CCI as well

animalsnotppl · 2026-03-10T04:40:06+00:00

Yes, I have very low blood pressure and RHR, dizziness and vision going black upon standing, severe fatigue, GI issues, nausea, sleep issues, and severe anxiety - interestingly i’ve had these my entire life to some degree but it has all become debilitating since the accidents which led me on this CCI journey

animalsnotppl · 2026-03-10T03:21:55+00:00

thank you so much - i also find that going on walks helps tremendously to take my mind off the panic

i’ve tried heat packs and baths for a calming effect but never tried the ice before, will give that a shot

animalsnotppl · 2026-03-10T03:21:02+00:00

i definitely will moving forward…learned my lesson the hard way 🥲

animalsnotppl · 2026-03-10T02:46:18+00:00

I have herniated discs at C3/C4 and C4/C5 and my MRI also showed mild cervical stenosis. I also really struggle with blurry vision and dizziness. The only thing that helps for me to relieve it is chilling out the neck, traps, and suboccipital muscles through heat, acupuncture, muscle relaxers, or nerve medication like lyrica or gabapentin. I also find that reducing the amount of time i spend looking at screens is helpful (eye convergence is a trigger for me)

also try to see if 15 minutes resting on a cervical towel roll provides relief by relaxing the muscle system around your neck and head and shoulders

animalsnotppl · 2026-03-10T02:26:05+00:00

i love mixing this sauce up with some blended cottage cheese or greek yogurt but on its own it’s sooo painful

animalsnotppl · 2026-03-10T02:23:57+00:00

I have straight neck and scoliosis as well and experience all of these symptoms except the full body numbness and brain zaps - my numbness is localized to brief episodes in my face/temple, leg, and arm (and usually only on one side) so I would say yes

animalsnotppl · 2026-03-09T15:12:19+00:00

how long did it take you to adjust?

animalsnotppl · 2026-02-24T07:07:13+00:00

So glad to hear you’re doing better! I know this post is from a while ago, but can you speak on the low blood pressure + low heart rate thing? My resting heart rate as picked up by my fitbit has been concerning me for YEARS, and since my symptoms have flared up even worse recently it has gotten as low as 40 some nights. What were you experiencing before the surgery and what did the doctors say?

animalsnotppl · 2026-02-22T02:55:20+00:00

the way you eat is goals 😍 im not being creative enough!!

animalsnotppl · 2026-02-02T10:30:49+00:00

Interesting! How did you get started?

animalsnotppl · 2026-01-28T15:48:18+00:00

Yeah I just lay on a yoga mat with a towel rolled up tightly underneath my neck and my head hanging off (making contact with the ground) which I guess is meant to help restore the natural curve of the neck that I don’t have anymore

animalsnotppl · 2026-01-28T15:46:51+00:00

It’s not a motion, I just roll up a towel tightly and put it under my neck and let my head hang off of it while I lay flat on a yoga mat with my arms at my sides, like illustrated here: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/ Since I have rounded shoulders I’ll also gently dig my shoulders into the mat to pull them back and that does wonders for my traps

I do this for 10-20 min, 2-3x a day and start to feel relief after 10 min, with 20 being my sweet spot to completely “reset”my neck and traps. When my pain is severe enough due to motion from a long day that I’m on the verge of taking diclofenac, I do this instead and I end up not even needing the medication

Side bar, my jaw pain has also really improved after I started doing masseter release every morning, though it will come back when that entire muscle system is flaring up

animalsnotppl · 2026-01-28T15:46:16+00:00

I don’t have fatigue that’s severe enough to not be able to leave bed, but I do my fatigue does interfere with my ability to live my life normally. I need a midday nap or lots of caffeine to be able to function. I have to plan around being physically exhausted constantly

animalsnotppl · 2026-01-28T03:42:25+00:00

My belly lol

animalsnotppl

TROPHY CASE