u/Fun_Sail4473

I haven’t even got my date yet, I just need the mri and then I’ll get my date but again, I haven’t got my appointment for the mri yet so let’s hope that hurries up! But I wanted to share all the things I’ve got to prepare for surgery, some things were suggested! Just in case this might help someone else!

-button up pyjamas
-baby wipes (thought those might be usual)
-Colgate wisps (also thought those might be usual)
-eye mask
-ear plugs
-a new towel for the hospital
-a longer charger for my phone
(This is hospital care)

Now for when I’m home
-family member gave me these migraine cooling patches that might be usual
-neck pillow
-a big water bottle
-straws so I won’t have to put my head uncomfortably back

If there’s anything else that might be helpful, let me know! I know some of these I might not even use but it’s good to have just in case!

What are the things that were lifesavers for you during your recovery period? I’m trying to be extra prepared! Even if it’s random or silly! Thanks!

I’m on the waiting list for surgery and still haven’t got my date. But my neurosurgeon had told me at the appointment that it would only be a few months…so I have been on here asking a lot of questions and my newest question is what could you do after surgery?

What were you ABLE to do after surgery? Anything that surprised you?

And what couldn’t you do after surgery?

I hope this makes sense!

By the end of it, he has gave me a choice of surgery.
His words were ‘I wouldn’t be suggesting surgery if I didn’t think you needed it’…but I’m nervous as hell.

What was your story? Was it the best thing you did?

I would get these migraines that causes my eye to swell/droop, is this a symptom of chiari? I’ve heard chiari can give you migraines but the eye thing? I’m not sure! Has anyone else had this!

I’ve been posting here for the past week on symptoms, doctors etc. Yesterday I went to my GP and was basically dismissed with just blood tests.

Later last night, my foot had spasmed, I immediately felt nauseous. My foot has been cramping (mostly toes) but this was something else. I was sitting in a chair and only put that one foot down then blacked out. Completely blacked out, hit my head, didn’t know what happened. Luckily I was with my mum at the time and had spent the whole night in the hospital. They wanted to keep me in because this has never happened before (I got there at 10pm and this was said at 5am) and I was just too tired to stay, I’d have to wait for a bed and I just went against medical advice as I just couldn’t cope.

Blood tests came back fine, CT came back fine.

Today I feel worse. I feel so weird and tingly and just shit. Pain in my head etc. I’m pretty sure this was a flare up…this has never happened before, I’ve never blacked out. I know your limbs can go numb but this was a whole new ball game.

I’ve contacted a private hospital for more help as my public healthcare isn’t the best.

Has this happened to anyone before? Is this a sign? I’m so tired of this, this has been the worst week

I posted on here two days ago about my symptoms and how to ease them. And so I called my doctor today.
For a bit of backstory, I had an MRI done on the 20th of April. I called my doctor and they said nothing came back yet. But something DID come back in may.

Today I was told I have ‘no fluid in the back of my head’….what the hell does this mean? I’m going to get blood pressure and all done this week but what? What does that mean? Where do I go from here?

I was diagnosed at 17 with little to no symptoms. Now at 22, it’s only gotten worse. I know there’s no medication but honestly, I can’t do anything normal anymore.

The migraines/headaches, shoulder and neck pain and the extreme fatigue has been absolutely debilitating. I can’t cope like this. I can’t even clean my room which is so silly but the most annoying to me

My question is, is there anything that helps this? Especially the fatigue, that’s what’s been the most annoying and frustrating symptoms to me. I can’t cope anymore this is becoming even more debilitating in such a short period of time

I’ve been having horrible flare ups that have been constant for a while now. Which has put me out of work.

What type of job could I do?
I’d love to do something in the beauty industry so does anyone here do something like that? And if so, does it affect your health? Let me know!

I was diagnosed with type 1 at 17 years old. Only had a few symptoms which surprisingly affected my bladder (muscle spasms), but that was it. I’m now 22 and the flare ups have been non stop. Aura/vestibular migraines, neck and back pain, slurred and weird speech, balance issues, extreme fatigue, vision blurring randomly…it’s been non stop since February.

This is exhausting. I had an MRI in April and still waiting on results, I just don’t feel like me anymore and honestly it’s became depressing. I’ve been trying to keep things light and be normal but this has gotten so exhausting and frustrating to the point that I even cry over it.

If anyone has tips on what helped them, or even eased any of the symptoms please let me know. Because I just can’t keep going on like this with nothing helping

I usually only watch Vanilla’s live streams when they’re uploaded to YouTube and only the ones where she plays certain games, I rarely even notice the chat! So when I seen that the chats have been a huge issue, I’ve been so confused!!!

What goes on in the chat that makes everyone mad?

Hope this doesn’t come across the wrong way I’m just curious! :)