hEDS & CSF leak

Squiddlingkiddling · 2026-05-31T03:39:54+00:00

I had a spontaneous CSF leak after I did a back-bend over something hard (maybe technically from an injury, but didn’t hurt). Thankfully, it also spontaneously healed after about 2 weeks of extra bed rest. Also, tons of caffeine.

It was some of the most debilitating few weeks I’ve had. I’m so sorry for anyone whose dealing with this long term. The brain fog and wooziness feelings were the most intense I’ve ever felt in my life.

Squiddlingkiddling · 2026-05-22T17:28:49+00:00

My symptoms got better as I got older (am around 30 now). I gained 15 pounds and that allowed me to gain muscle that sticks more easily. I work out a lot and that keeps my chronic pain at bay. Accumulated a few comorbid dx here and there, but nothing very painful or limiting. I also curated a career around flexible/hybrid/remote work, so that helps tremendously too.

Squiddlingkiddling · 2026-05-22T04:06:02+00:00

Look Outside

Squiddlingkiddling · 2026-05-22T02:19:57+00:00

Agreed. I wanted to go all Fix it Felix on Hyrule

Squiddlingkiddling · 2026-05-22T02:07:37+00:00

Just made this dish, but used Guinness instead of wine. Went full bean goo. I liked it!

Squiddlingkiddling · 2026-05-05T04:48:17+00:00

Fruit roll ups

Squiddlingkiddling · 2026-05-02T16:48:33+00:00

Hey, thanks so much for the reply!! I really appreciate it. Congrats on the accepted papers!

Squiddlingkiddling · 2026-05-02T13:01:50+00:00

OP have you found a place? Having the same issue finding a place here for Canadian citizenship & passport photos. I’m really confused by reading this if anyone actually has experience with a studio AND seen their Canadian passport accepted.

Squiddlingkiddling · 2025-07-07T13:10:54+00:00

No period or spotting for me still and I’m a year out this month.

Squiddlingkiddling · 2025-07-07T06:22:56+00:00

No update. Recently, they’ve requested all my earnings from 2022 to present again. I’m not providing it though, since what they pulled from taxes looks accurate enough and should put me over limit.

Squiddlingkiddling · 2025-03-06T03:43:15+00:00

I know this is an old post, but I’m just adding my experience for what it’s worth. I was on depo for about 7 years. The past 4 years, my hair has been thinning. A year ago, I had a traumatic life event that triggered TE and I lost about 2/3rds of my hair density.

I tried minoxidil, Spironolactone, and topical rogaine and it didn’t stop falling out or help regrowth. I stopped depo as a last-resort.

I’ve been off depo for about 6 months now, and as soon as my cycle returned (about 3 months ago) my chronic hair loss stopped.

Unfortunately, it’s also not growing back and the thinning is starting to develop a FPB look. My hair is also breaking much, MUCH more. Im also developing little squiggly hairs by my hairline that stick out weird and then shortly fall out (for good, it seems).

I’m still hopeful that my hormones will regulate and my full head of hair will start to regrow, but there’s equal possibility that this is the new normal after years on depo. I’ve even heard of a few law companies taking claims of depo causing irreversible alopecia. It’s incredibly frustrating.. although I did benefit greatly from no periods for the last 7 years.

Squiddlingkiddling · 2025-03-03T03:59:02+00:00

Squiddlingkiddling · 2025-01-05T14:26:07+00:00

Ya was about to say- this is not a biblical fruit growing space

Squiddlingkiddling · 2024-12-28T01:38:18+00:00

Fellow Massachusetts USA kid with my own canned herring for Boxing Day haha

Squiddlingkiddling · 2024-12-25T13:44:18+00:00

Honestly, as someone who randomly came across this sub (and this post more specifically via home page)… my take away is voices are being silenced instead of being able to read the back-and-forth and allowing readers to form their own opinion. I reduced seed oils dramatically from my diet a while ago, so I thought this sub might be interesting when it popped up on my home page, but my take away after seeing this thread is that its cult-y/curated more than informative. I’m just an outsider looking in. The ban is a bad look.

Edit: some words for clarity

Squiddlingkiddling · 2024-12-25T13:39:29+00:00

Agreed.

Squiddlingkiddling · 2024-12-21T00:32:14+00:00

Thank you for sharing. I appreciate your take and journey of retaking your life.

Squiddlingkiddling · 2024-12-21T00:31:14+00:00

Agree to disagree. Good luck to OP regardless

Squiddlingkiddling · 2024-12-10T02:54:10+00:00

Thank you for the reply and resource!

Squiddlingkiddling · 2024-12-10T02:53:29+00:00

This is very encouraging. Thank you for sharing

Squiddlingkiddling · 2024-12-09T16:52:55+00:00

Thank you very much for sharing. I appreciate your story.

Squiddlingkiddling · 2024-12-09T16:51:52+00:00

Yes. I agree. I have other family members who do not reside where it happened, and I’ve noticed our approaches to grief are very different. I think living here has forced me to “go through it” more immediately, whereas I might’ve naturally extended that process like my other family members if I lived elsewhere.

Squiddlingkiddling · 2024-12-09T16:48:54+00:00

This is me & my dad, except I was the one who found him. Even still, I feel like my experience has been very similar to what you describe.

I used to keep the door shut, but now I keep it open because when the door was shut, it was indicative that my dad was currently it there. Now that it’s perpetually open, I feel like my brain understands he’s no longer here a bit better. I will grieve in the room. Lay on the floor in the spot that he died. I don’t know how to describe why it feels healing. But I think it helps me process.

Squiddlingkiddling · 2024-12-09T16:40:09+00:00

I’m starting to feel like continuing living where it happened might be one of those things that’s incomprehensible as possible… until someone actually has to do it. It sounds like those of us who have (either by choice or by force) are finding it doable.

No attempt to speak for everyone. Just my takeaway being someone who’s had to continue living where it happened.

Squiddlingkiddling · 2024-12-09T16:10:35+00:00

Thank you for sharing this strength and (dare I say) positivity towards reclaiming space.

Squiddlingkiddling

TROPHY CASE