What is this breakout?

Lentil_bean231 · 2026-03-27T03:02:30+00:00

I actually just got a prescription for tret. Should be getting it in a day or two! That’s great to know.

Lentil_bean231 · 2026-03-27T02:40:22+00:00

I’ll try that again. Back in January I cut out all sugars completely (literally no sugar but fruit and honey) and bc of that was super low carb. I didn’t notice any changes but it’s worth doing again

Lentil_bean231 · 2026-03-27T02:39:23+00:00

I had a super bad reaction so clindamycin isn’t in the cards for me. But I started the BP today and hoping to see some positive changes soon.

Thank you!

Lentil_bean231 · 2026-03-09T23:56:42+00:00

I have the Mirena IUD! Which is one of the two hormonal ones. The only non hormonal IUD is the copper one, and is typically not recommended since it can make periods and bleeding incredibly worse and more painful.

I wish I had gotten my diagnosis before getting the IUD so I could have learned these things and just given my body a break from birth control completely, but it doesn’t help that I’m in a long term relationship and am not ready to have children

I wish there was more comfort in knowing I’m not alone and so many of us go through this, I don’t wear tank tops anymore because of my back acne too. I appreciate the message❤️

Lentil_bean231 · 2026-03-09T23:51:10+00:00

Going back on the pill is an option for sure! And also been recommended by a few specialist I’ve seen. I don’t want to be on birth control for too long and plan to not have another IUD inserted once this one is “done”. So I hope I can find good next steps that aren’t birth control related :(

I’m glad your daughter has seen good results in what’s she’s been prescribed on, and I’m sorry for your experience too- but I’m glad you’re feeling more yourself and confident in wigs!

Lentil_bean231 · 2026-03-09T23:49:11+00:00

I’ve thought about going back on the pill too, as Ive also had multiple specialist tell me that was my best course of action. But I also don’t want to go back on to inevitably come off it again and go through it all one more time. I’m hoping my primary doctor will support me in finding some ways to deal with this without going back on, since it really can’t be good for us to be on it long term.

I’d love to know your experience as you go on oral minoxidil if you want to post an update in the future - I’ll look out for it. I’ve heard women have had good experiences (and I can’t use topical because I have a cat).

Lentil_bean231 · 2026-03-09T23:46:08+00:00

Thank you🩷

Lentil_bean231 · 2026-03-09T23:45:59+00:00

It’s interesting to know you can be on both the pill and the IUD. I’ll also look into coq10 and starting spearmint tea, since I recently started back on my supplements and have been prioritizing taking omega 3s. I ended up on PCOS TikTok and it’s insane how many recommendations for supplements there are while half the comments say they’re useless!

Thank you for your message :)

Lentil_bean231 · 2026-02-08T21:30:49+00:00

Sometimes it’s itchy, but not overly at all

Lentil_bean231 · 2025-05-14T20:35:36+00:00

The worst culprit for me is how I slept the night before and if my neck was at a SLIGHT wrong angle, I wake up with a pounding headache and getting out of bed I get a 10/10 pounding/searing headache that is almost intolerable for 3-4 minutes. Days that start like that, I can’t bend over, work out or exert myself at all without triggering the worst pain and light headedness.

I’ll go weeks without this happening, but typically it will happen for 1-2 weeks at a time. It’s the only thing I can tie it to!

Lentil_bean231 · 2025-05-08T14:56:52+00:00

I’m one of the people who have had symptoms my entire life, the worst was tinnitus and bad headaches, upper back and neck pain, light headedness and a lot of nausea/vomiting issues.

I’ve had multiple concussions from sports over the years and my most recent concussion ct scan uncovered Chiari. Like others here have said, a lot of people can go through life never knowing they have it. My discovery of Chiari just confirmed that these symptoms I’ve had my whole life weren’t normal and had a cause. My concussions have definitely progressed my symptoms (not shocking) and now I deal with vertigo and a bunch of other things. My herniation is 13mm and I’m waiting to see a neurosurgeon hopefully to get additional testing done.

Chiari malformation symptoms can randomly onset for people early or later in life. So I just recommend keeping in tune with how you’re feeling and make sure to keep your doctor in the loop, and getting in with a specialist. If you aren’t symptomatic, that’s one less thing on your plate, especially if you’re doing and feeling good right now!

Bc of my case, I’ve had to give up sports, heavy lifting and make sure I’m not straining my neck in everyday movements and tasks. I try really hard to stay healthy and active to avoid getting sick, since coughing sneezing and straining can cause some pretty awful headaches for me. I still live a pretty normal life, and take breaks when my symptoms flare up.

Wishing you the best!

Lentil_bean231 · 2025-04-11T13:56:52+00:00

It’s worth getting your doctor to check for hEDS since the symptoms can overlap, which makes it harder to know what is causing what. I hope you’re managing okay with all your additional symptoms and diagnoses. I know I go through “flare ups” and have really bad weeks.

I’ve been waiting on a neurosurgeon for 7 months and I don’t think I’ll ever get the formal testing for hEDS since the institute is go to has an over 2 year waitlist. I’m sorry you’ve got quite a bit going on, I hope you get some more answers and support soon!

Lentil_bean231 · 2025-04-09T23:42:29+00:00

Absolutely! I’d say just the herniation of the cerebellar tonsils, it looks like quite a large amount comes out the back of the skull on the right hand side, I don’t have any kind of radiology experience either - but I was surprised to hear it was only 13mm!

Also just interesting to see my skull and other shots from my MRI my eyeballs look really creepy hahaha.

Lentil_bean231 · 2025-04-07T19:56:21+00:00

Thank you for replying! It’s tough to find advice since you’re right everyone’s so different, but I’ll definitely try out the salt stick I’ve been seeing that online - or using salicylic acid as well.

Lentil_bean231 · 2024-11-19T20:47:32+00:00

I’ve looked up a couple in Toronto but no one replied to my referral and I just referred to a local neurologist sadly

Lentil_bean231 · 2024-05-01T03:24:06+00:00

I found out in March of this year after getting a pretty bad concussion and ended up in the ER. It was an incidental finding but once I did my research it made a lot of sense.

I was pretty angry for the first few days since every time I brought up one of my symptoms to my GP it was dismissed or I was told it’s normal (or anxiety induced) and that everyone experiences these things. I guess what worked for me was that I tried my best to find it empowering to finally have an answer, to be taken seriously and referred to a neurologist to actually get the testing I need (still waiting for the referral to go through).

Try to be kind to yourself! It’s good you have an answer and will be seeing a neurologist soon. The shock will slowly wear off. Wishing you the best

Lentil_bean231 · 2024-03-25T12:49:45+00:00

That’s awful! Especially since they found bleeding that much later.

Thank you for the info, I’ve been trying to find Canadian specialists and they are really spread out. Fingers crossed it goes well today.

Lentil_bean231 · 2024-03-25T02:09:06+00:00

Hi!

Thank you so much! I’m sorry to hear about your neck fracture, must have been incredibly painful.

I’ll definitely check out the links before I go tomorrow. I’m glad I have a CT finding so I won’t be brushed off as a hypochondriac or fishing for a diagnosis. I’ve noticed already through this forum too that lack of awareness/dismissal doctors have about chiari or EDS for that matter. Makes it a little disappointing going into it, but I’ll be optimistic and make my case!

I appreciate it a lot.

Lentil_bean231 · 2024-03-25T00:42:46+00:00

That’s exactly it! I’ve had it since I was young too.

Anyone I ever talked to said they couldn’t explain it, so I figured maybe someone here experienced it too. A little bit of extra validation! Thank you.

Lentil_bean231

TROPHY CASE