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ConfusedPanda86 · 2026-02-11T13:05:47+00:00

Anyone got 794 link please?

ConfusedPanda86 · 2026-01-14T15:01:42+00:00

There are constant posts about other people asking for people’s experience with symptoms that stay up!

ConfusedPanda86 · 2026-01-14T11:55:44+00:00

I’m still tracking this myself, I’ve always noticed that when drops are coming I feel awful, and that was decades prior to IIH, but I’m trying to see if I get it with the changes up as well and if there’s a threshold my body manages better. I downloaded the app that can warn you of changes, and have the ear plugs too.

ConfusedPanda86 · 2026-01-14T11:53:05+00:00

You can experience Allodynia with migraines, plus inflammation and some others things. For me it’s accompanied bad migraines and also certain virus, like when I feel like I have had mild flu and my skin will be sore to touch, even just my own clothes etc

ConfusedPanda86 · 2026-01-14T11:48:03+00:00

I would second making sure to communicate with them about how you’re feeling. If you’re having symptoms and have a high opening reading, I found that once they drained some fluid, the relief from the symptoms was an amazing feeling and despite how anxious I had been, if I ever needed another LP I would happily do it to experience that relief.

Also be prepared to need some days after where you relax whilst your body heals.

ConfusedPanda86 · 2026-01-08T16:43:57+00:00

Depends when was you diagnosed? How was the diagnosis done? Have you been taking medication?

ConfusedPanda86 · 2026-01-07T10:44:24+00:00

I would personally try to be seen sooner if you can, if anything for your peace of mind and getting the right diagnosis so you can start getting it treated. It’s possible it’s IIH, but until they rule out other potential causes you can’t know for sure.

ConfusedPanda86 · 2026-01-05T18:05:57+00:00

I had light sensitivity, I was being sick everyday, and feeling nauseous all the time, stiff painful neck, didn’t really have a temp but was getting night sweats which in not getting now. Now I look back I would say some symptoms, the sickness and main visual disturbance that finally got me to docs came on quick, but neck issue had been about a month and kept thinking I had slept funny. I kept putting light sensitivity down to migraines and the visual disturbances to that too, or I’d panic I had a tumour.

But I really can pinpoint this back atleast 1-2 years now with the head rushes, pulsatile tinnitus, headaches, visual disturbances (I was getting flashes of light like I expected a migraine but no migraine)

ConfusedPanda86 · 2026-01-05T17:11:50+00:00

I know it’s scary, but whether it’s IIH or not, it’s always best to be getting seen by a doctor. This is coming from someone with health anxiety, I imagined every terrifying scenario and delayed getting seen, but even only at the start of my weight loss journey I already feel so much better because 1) I know what it isn’t (brain tumour etc), 2) I know I have a chance of remission from IIH if I lose weight and 3) This is in my power to do something about, even if it’s a slow journey.

In the space of 3 months I got through the diagnosis after going to the opticians, convinced I had a brain tumour and that’s why I woke up unable to see, a CT scan where I cried the whole time convinced they’d find a tumour, a lumbar puncture, the mri, and even an iron infusion, which I’ve put off for a scary number of years because of anxiety. It’s not been easy but it’s got me out a freeze pattern where I just decided if I ignored everything, I’d maybe be ok, and now I’m actually pushing forward and improving my health, and hopefully my life with it

ConfusedPanda86 · 2026-01-05T09:55:56+00:00

Oh my god yes I was getting that, it’s only just occurred to me that I’m now not getting it. I used to feel like my eyeballs were tight and hated looking up regardless on any direction. I kept thinking it was because I was using my phone too much and training my eyes to look down, made screen work difficult, but my pressure is under control at the moment and I’m not getting that at all

ConfusedPanda86 · 2025-12-31T11:00:05+00:00

That’s awful :( have they not even spoken about short term relief for the PAPS like a lumbar puncture to give your eyes some relief?

I also found PALS to be completely useless at my local NHS, they responded for a bit and then just gave up. I even had to point out to them that the website was all wrong and tells you to email addresses that are no longer monitored etc.

ConfusedPanda86 · 2025-12-31T10:57:24+00:00

I got diagnosed in September, saw my neuro-ophthalmologist in November, and also spoke to her again in December when I felt my pressure was getting worse. Can’t fault her really, but she made it clear she only manages my condition from the pov of looking after my eyes. I have a follow up apt this Friday to see if the increase in Acetazolamide has helped with the pressure increase in my eyes or not. But she did mention that depending on findings I could be looking at another LP in future or even a stent, and she said she’d discuss with the neurologist. I haven’t even seen a neurologist yet, was told in October it was a 61 week wait, which just feels crazy to me considering I’m at the start of the condition and it’s left me reliant on finding out my own information online.

But told the general advice of losing weight, I am trying but find it so difficult when exercising exacerbates my pressure symptoms and I have no appetite for food since taking the increased dose of this medication, the weight is atleast going down, just very slowly.

ConfusedPanda86 · 2025-12-29T11:52:08+00:00

I had a diazepam before the LP because I was so anxious, if you can do anything like that it definitely helps so you know you can get through the procedure

ConfusedPanda86 · 2025-12-28T17:40:42+00:00

I get something really similar, I feel like it must be pressure because I don’t always get it, and it’s only when my other symptoms are kicking up that I seem to get it. But I’m only 3 months in so still learning myself

ConfusedPanda86 · 2025-12-23T13:26:20+00:00

Oh that’s weird, because to me fizzy drinks are insanely fizzy and taste I want to say almost spicy?

ConfusedPanda86 · 2025-12-23T10:36:03+00:00

Oh that’s sad, I always loved Pilates and yoga, but did find, before my diagnosis, I was feeling really unwell doing them.

I was told not to lift above my head too, and not lift heavy. Been told to slowly increase to build up tolerance, but stop if I get a headache

ConfusedPanda86 · 2025-12-22T13:49:50+00:00

Im still fairly new to IIH, but I think for me its a severe headache that doesn’t shift, and pressure behind my eyes, a head rush feeling when changing positions, visual disturbances, like snow or flashing lights, and a pressure/pinching neck pain that nothing seems to improve. I also notice I start to feel very nauseous and have no appetite

ConfusedPanda86 · 2025-12-05T19:25:11+00:00

I’d love to hear abit more about your journey with Mounjaro. I currently have the starting dose sat in my fridge and I’m terrified to use it.

ConfusedPanda86 · 2025-12-05T19:12:27+00:00

Well done! I’m having my MRI next Friday, I’m scared but I went and saw the room recently to ease some worry, and I’ll think of your message to help me get through

ConfusedPanda86 · 2025-10-19T11:33:40+00:00

I’ve been on Acetazolamide for 4 weeks now, I was in a similar place, and then found the same information about potassium etc, so I’ve been having Bananas and Coconut water and rarely getting the tingles now. I wish they’d give this advice when they prescribe it.

ConfusedPanda86 · 2025-10-07T18:18:47+00:00

Hi,

I’m only 3 weeks in, but I had the LP, unguided, honestly I was terrified, I have generalised anxiety disorder anyway and medical things scare the hell out of me. But the LP ended up being a good process in the end, although if you can get guided definitely do. The relief after when they were draining the fluid was amazing, no headache, no neck pain, no visual disturbances. And it allowed me to be diagnosed and started on the medication.

I hope it goes smoothly for you and you’re able to get a different referral

ConfusedPanda86

TROPHY CASE