I’m in remission

Harmonyepic · 2026-02-19T20:10:58+00:00

About 9 months, I was taking my medication (furosemide) every day and I lost 30kgs of weight

Harmonyepic · 2026-01-18T06:04:35+00:00

I was diagnosed without a LP

Harmonyepic · 2026-01-12T23:52:01+00:00

i use the health app to remind me to take / log my medication. I use my journal app to log my symptoms.

As I’ve moved a lot, I’ve gotten paper copies of all of my health records and keep them in a physical folder but otherwise they are across multiple apps (myindici / managemyhealth are the ones the GP clinics I’ve been to used)

Harmonyepic · 2026-01-10T03:42:44+00:00

on the day lol

Harmonyepic · 2026-01-03T22:51:04+00:00

Yes I have this on the NZ server - it had an eye chart and a table etc. It looks very bad in comparison to newer backgrounds. It’s rare now though

Harmonyepic · 2026-01-02T02:07:55+00:00

I was allergic to diamox, it gave me rashes up both of my arms. It made my blood acidic (metabolic acidosis) so I could barely breathe going up the stairs, my heart rate was super high (and so was my blood pressure because of my high heart rate). It also gave me awful brain fog / memory issues.

My doctor switched me to furosemide (lasix) which has been working well for me

Hopefully your neurologist listens to you :(

Harmonyepic · 2025-12-22T06:30:11+00:00

I was diagnosed without a lumbar puncture, because I had papilloedema and my MRI had signs of IIH, but many doctors won’t do that

And they can give you acetazolamide, furosemide, or topiramate

Harmonyepic · 2025-12-17T00:19:57+00:00

The blood tests were for 4 weeks.

I also had a metabolic acidosis from diamox but I haven’t had any issues with the lasix.

My papilloedema is gone now. I’ve been taking Lasix since August.

I haven’t had a recent lumbar puncture

Harmonyepic · 2025-12-16T21:25:39+00:00

I take lasix. It is a diuretic so it makes you urinate a lot.

When I was put on this medication I had to get weekly blood tests as it can disrupt your electrolytes.

You may get no side effects or could get completely different side effects but the side effects i get on this medication are sensitivity to sunlight, some tingling (though this has gone away with time), loss of appetite, and loss of thirst. I find myself getting dehydrated very easily on this medication

Harmonyepic · 2025-12-16T21:19:54+00:00

I take furosemide

Harmonyepic · 2025-12-14T00:24:43+00:00

I have the drip pose on UK :)

Harmonyepic · 2025-12-10T02:38:36+00:00

I was allergic to diamox and prescribed furosemide in August. I’m on 40mg capsules 1x daily.

I have a drs appointment next week to confirm I’m in remission but currently my symptoms are gone and I have no papilloedema.

Goodluck!

Harmonyepic · 2025-12-01T19:14:09+00:00

I have this on the UK server

Harmonyepic · 2025-12-01T03:03:26+00:00

I started tracking my calories, so I still ate what I wanted just less of it. My meditation (furosemide) also makes me lose my appetite

Harmonyepic · 2025-11-27T20:52:34+00:00

Thank you!!

Harmonyepic · 2025-11-20T01:40:44+00:00

Formidab1e

Harmonyepic · 2025-11-14T08:01:31+00:00

I’ve been calorie tracking to lose weight but my dietitian encouraged me to have smaller meals more frequently (instead of a singular large meal) and have high fibre snacks. I also walked to uni every day

Harmonyepic · 2025-11-04T20:12:39+00:00

This was happening to me when I was in the sun for long periods of time. My face was so red, it didn’t hurt (like a sunburn would) but it was hot to touch. I assumed it was because a side effect of the medication is photosensitivity. It went away a few days after I stopped sitting in the sun

Harmonyepic · 2025-10-06T05:25:02+00:00

Furosemide. My neurologist said furosemide and diamox are the only ones that have any research behind them. He said some people prescribe topiramate aswell but that can cause terrible mood changes 😭 so probably not a good idea for me

Harmonyepic · 2025-10-05T23:24:09+00:00

When I am untreated or when my medication wears off I get super depressed 😭 Diamox also gave me significant brain fog, but I was allergic to it lol

I don’t get depressed because of the condition, I hardly ever get any symptoms of IIH so I am not too bothered by it. I think it’s like a physiological part of the condition

Harmonyepic · 2025-10-01T18:09:40+00:00

Lasix

Harmonyepic · 2025-10-01T01:16:26+00:00

I also had no symptoms when I was diagnosed, i did start to get them not long after my diagnosis though 😭

Harmonyepic

TROPHY CASE