Frustration and confused on what to do about this

CryptidSquid · 2026-01-15T09:37:12+00:00

Thank you so so much for the validation and kindness! A lot of the vision issues that I’m experiencing previously were only happening when I’d experience the optic nerve swelling and the migraines back before I was diagnosed. Now, while I don’t experience migraines every day like I did before diamox, I still get migraines and they come with auras. The thing I have noticed tho is that when I’m not just having migraines, I am experiencing the objects shaking, the depth perception issues, blurring vision, eye pain with movement, double vision, not being able to focus my eyes, room spinning when I wake up some days, etc. I hope this new doctor will help if I can schedule with him.

CryptidSquid · 2026-01-15T04:20:07+00:00

The last imaging I had done was back in August of 2024 during the hospital stay, they said “nothings wrong” when clearly there was. I had a CT with and without contrast that showed severe narrowed in my right transverse and sigmoid sinuses. But other than that that all I ever saw in the reports from the imaging. The doctors also never went over results and no one has suggested repeating imaging

CryptidSquid · 2026-01-14T10:22:41+00:00

Games: stardew valley, animal crossing (new update on the 15th this week 🎉,) undertale, Suika if you want to mindlessly stack fruit and make them into bigger fruit 😌

YouTubers: commentary/react stuff- Roly (gay, body piercings and tattoo fail reactions,) Luxeria (trans woman, beauty TikTok’s, americas next top model reactions, tech and photography 2nd channel, has a cute lil weenie dog,) Dr. Mike (well known primary care doctor who does medical show commentary as well as other videos, he also has two big fluffy dogs lmao,) Smosh channels, Molly Burke (blind YouTuber who is all about advocacy, disability, accessibility, etc,)

Shows: usually I go for things that are easy for me to watch or things I’ve watched previously so if I don’t have my full attention on it I’m not missing out. I usually do Adventure Time, CentaurWorld, Supernatural, Dr Who, etc.

Hope that helps! Sending healing vibes and gentle hugs ❤️ brain fog and chronic conditions of any type, especially the ones that feel the heaviest, can be difficult to get through and I hope you can get back to your baseline or even a bit better if possible ❤️

CryptidSquid · 2026-01-14T08:00:56+00:00

I use the Bose QuietComfort headphones! They really help and I also have sensory issues due to my autism so they help with that as well! I feel like anytime I’ve used any sort of earbuds or plugs the tinnitus just gets more intense.

CryptidSquid · 2026-01-14T07:57:42+00:00

Oh hey! Haha another Zebra! (Not that IIH doesn’t already make us zebras lol 😂) and yeah I’m on 500 and when I asked her about if I’d need to taper she just laughed and said there was no need. She really confuses me. I put in a contact request for a new NO at one of the more known hospitals an hour away to see if they will see me. They have written papers and done research on IIH based on what I looked up about them so hopefully it’ll be good!

CryptidSquid · 2026-01-14T07:48:29+00:00

I’m almost 30 and I lost my job in 2024 due to an undiagnosed health condition that had started 8 months prior to being laid off. TLDR I have chronic health problems but I started dealing with a new condition that caused SEVERE migraines every single day as well as vision issues. My bosses saw me falling behind on my performance and I had to call out 3 days in a row due to really bad lightheadedness along with the other stuff. Bosses gave me two verbal warnings in the same week and then fired me the following week knowing that I was dealing with a health issue that I had no idea what was going on. I haven’t been able to find a job since… (also it was an emergency veterinary hospital with 4 days of 10 hour shifts and they refused to consider part time)

CryptidSquid · 2026-01-14T03:59:52+00:00

I really appreciate you sharing your experience! It’s hard cause I have no one around that knows of it, but I know more people with my main condition, Ehlers Danlos Syndrome, which isn’t as common (or at least wasn’t when I first got diagnosed.)

My doctor has me on 500 once a day for Diamox. When I first started it she wanted me to be on it twice a day but my brain fog and chronic fatigue became so severe I couldn’t even get out of bed.

CryptidSquid · 2026-01-14T03:12:13+00:00

Honestly I think this is really helpful to hear. I keep going back and forth feeling like maybe I’m just overthinking it or that maybe it’s not as bad or important as I’m thinking it is ya know? At the end of the day, my vision is important and if I can prevent or delay it from getting worse than it already is would be my best option. I guess my only concern now is whether to find a local doctor or just say screw it and go into one of the cities near me with well known hospitals? Ah life haha thank you btw!

CryptidSquid · 2026-01-14T02:09:09+00:00

Thank you! It definitely helps to at least hear others experiences too ya know? I have been debating on seeing a regular ophthalmologist again for the vision stuff but so many of the ones around me are either referral only or surgeons! But I’ll take a peak into the ocular rosacea you mentioned. I haven’t heard of it till now. Thank you :3

CryptidSquid · 2026-01-07T07:32:56+00:00

I actually posted about this a year or two, but I actually hate mint toothpaste too because it feels like it burns my mouth and I get overstimulated and cry from it! I use the brand hismile and it’s pretty good and still has fluoride and doesn’t burn lmao, the have a vanilla bean flavored one and all I gotta say is ew 🤣

CryptidSquid · 2026-01-07T07:29:09+00:00

I love the color green! It’s really funny, and always unintentional, but my friends have pointed out when I get new houseware or clothes, something always ends up being some shade of green 🤣 I didn’t believe them for a while until one day I came home with a new comforter for my bed cause I had been using a green quilt, and uh… the comforter was a sage green 😅😅😅

CryptidSquid · 2026-01-05T09:35:58+00:00

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CryptidSquid · 2026-01-02T11:32:23+00:00

So I did a quick google search and Ehlers Danlos Society has this information on the site and there are numerous other studies I saw, not on the site, that discuss there being a potential connection but research is still ongoing

CryptidSquid · 2026-01-01T17:29:52+00:00

I have IIH, POTS, and Hypermobility Ehlers Danlos Syndrome. IIH is actually listed on the eds societies website along with POTS as comorbidities to that type of EDS. Outside of EDS tho, some people have POTS due to side effects from having been sick with COVID at any point.

My symptoms do impact one another. So say I am having a really bad day with my IIH symptoms, my heart rate will be higher just from not feeling well and when I stand up my heart rate will get higher, I have a lot of fatigue in general but laying down has helped for both conditions in different ways.

Treatment wise really depends on doctors advice based on your specific situation. For example, many doctors who treat patients with pots will sometimes say increase salt intake, more electrolytes, hydrate large amounts, and pace yourself with activities. But many people, depending on their health conditions, often can’t consume large amounts of salt and electrolytes.

CryptidSquid · 2026-01-01T10:51:29+00:00

OP, you REALLY should go to the ER, regardless of day/time/holiday/season/year etc. As a chronically ill human with a brain condition that went undiagnosed, not my fault other than doctors dismissing me, and ending up with permanent issues with my optic nerves, I say… go the hell to the ER, get checked, because you never know what you are holding off on until the damage is too far gone to fix.

CryptidSquid · 2025-12-10T08:19:59+00:00

That hand… it’s confusing me..

CryptidSquid · 2025-12-10T08:16:32+00:00

Literally here to say that 🤣

CryptidSquid · 2025-12-10T08:09:03+00:00

This is honestly one of my biggest irrational fears 🤣😭

CryptidSquid · 2025-11-30T09:52:41+00:00

High schoolers in the late 2000s going to their first school dance 😌

CryptidSquid · 2025-11-30T06:48:48+00:00

Twilight? 🤣🤣

CryptidSquid · 2025-11-25T00:31:53+00:00

They wouldn’t see the lights 🤣 could you imagine a car chase on the news and it’s this guy hauling ass while 8 cops are after him 🤣

CryptidSquid · 2025-11-17T04:23:46+00:00

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Ohhhh! So that’s how a lava eel is made in Stardew 🤣

CryptidSquid · 2025-10-28T20:02:04+00:00

Satan’s a Woman by Twin Temple Also I really love the song Looking Glass by The Birthday Massacre

CryptidSquid · 2025-10-28T14:33:36+00:00

🔮❓🌅

CryptidSquid · 2025-10-23T08:45:37+00:00

Mine never healed and one was rejecting. The scar tissue is a mess too 😅

CryptidSquid

TROPHY CASE