u/thepinkflamingox95

I started eating healthier than I used to to lose weight (recommended by my neuro-ophthalmologist because I’m overweight and it could be affecting a brain condition I have) and feel better about myself, by cutting out gluten (my stomach was reacting to it more and more) not having any sugar unless it is naturally occurring like fruit, and little to no dairy. It’s been about two months and I’ve lost 4.7kg already.

Luckily while doing this, within a month my previous HS areas were less inflamed and no new areas were coming up?

For a colleagues going away there was a huge charcuterie board where I indulged in cheese and a dip that was dairy dominant. Within 24 hours one of my old HS scars was inflamed. I kept doing warm compressions and cutting out all dairy and it went down within a week. Cut to last weekend I went out for breakfast with my husband and afterwards shared a gluten-free muffin. I didn’t even think about the fact there was probably a lot of sugar in it and dairy. Within 24 hours I had another old spot become very inflamed and today it came to a head and bled.

I guess the evidence is piling up and I need to be gluten, dairy and sugar free, most likely for the rest of my life, unless I want old or new spots to become inflamed. 😭 It honestly could be worse and realistically, I don’t need the stuff that I’m cutting out because I’ve learnt what to substitute to keep certain vitamins from depleting. But it feels like an unfair disadvantage in a social aspect for when I want to go out for meals with family or friends.

Who knew mine could get better just through diet?

⚠️😫

Last week I found out that I work with someone who also has IIH. A month ago I also found out that one of the cafe workers in my business, has a granddaughter with IIH as well.

Things like this make me feel it’s not as rare as thought and people are just super under diagnosed. I can’t believe I know three people with it and even work with one!

I get flares of the same three reoccurring boils. One on my pubic bone, one on my upper inner thigh and one on my inner right butt cheek.
I can go a few days or sometimes two weeks without a flare of one, but usually at least one is flared. All three are in high friction areas so I assume it’s partly to do with the flares.

Has anyone with reoccurring flares, had deroofing done and actually had success?
I feel as though if these three spots were deroofed, I might have a chance of being boil free?

Currently trailing being gluten free and coffee/caffeine free to see if it helps lower my inflammation. (I had a bad flare three days after introducing almond milk lattes back into my diet + I’m not celiacs but a lot of my maternal side are so I’m giving it a go).

Also, is the deroofing healing process long?
Or has anyone had a different process done with reoccurring boils that they’d recommend to get done?

Since my IIH diagnosis in May 2025 (diagnosed presenting with facial numbness, headaches, LP 55, severe papilledema - my CT contrast and MRI were clear), I’ve had check ups with neuro-ophthalmologists every 3-4 months.

My appointment today was a big one because it marked my one year of diagnosis and one year of being on (the devil) diamox at 750mg daily (my body couldn’t tolerate higher doses).

Today, after the scans, field test, eye exams, etc, I’ve officially had enough swelling reduction on my optic nerves compared to my last appointment three months ago. 🎉

I’ve been told I can slowly try weening off diamox. Starting tomorrow until 3-4 months time I’ll be down to 500mg a day, from 750mg.
If my next appointment is better than the one I had today, I’ll be down to 250mg daily, and eventually off diamox completely by December 2026/January 2027.

TLDR: weening off diamox very slowly due to less optic nerve swelling. I’m getting closer and closer to remission. 🎉😭

Edit: we’re now 90% sure my IIH was caused by prolonged use (two years) of low dose minocycline to manage my rosacea and acne. *I stopped usage a month after diagnosis which was end of June 2025.

Question at the bottom if you don’t want to read. ♥️ Tomorrow is another one of my many 3 month check up appointments, since I was diagnosed in May 2025. But this one feels like it’s going to be different?

I want to change things up.

I think I might ask for an MRV (I had an MRI and my LP was 55 so diagnosing was quick - I had papilledema) to see if surgery is an option or not.

Because I was on a low-dose tetracycline for two years they straightaway told me it was most likely because of that (and my weight) so they did not look at testing other avenues like MRV to check for stenosis. Heck they never even told me what my MRI showed or if it showed anything at all. They told me to lose 10-15kg to which I’ve lost 7kg - my bmi is 28.6 and I wear a size 10-12 in Australian sizing. I’m 76kg at 163cm height. Ideally my doctors want me to be out of the 70s and into the 60s. It’s hard.

I want to cross things off, and have more control and traction over my possible remission. There’s only so many times I can essentially be called fat and told my habits must be bad if my bmi is still overweight after a year. (I don’t smoke, drink alcohol, takes drugs, I virtually only drink water besides a random orange juice or almond milk hot chocolate or two, I eat clean besides my takeaway of choice which is zamberos or Vietnamese). I even went to a dietician and she told me I was eating everything perfectly except I could try fasting so I can cut out a meal to be in a deficit seeing as I can’t exercise, except for walking. (I declined as I had a bad ED and restricting meals is a slippery slope.)

Also, I don’t know if this is normal but out of all the every three months appointments I’ve had since May 2025. I’ve only seen my neuro-ophthalmologist, who manages my condition, three times because I’m often given to a new ophthalmologist each appointment because she’s too busy. (I think there’s only two neuro-ophthalmologist who specialise in IIH in my state in Australia.)

TBH I’ve had a lot less headaches, and the pressure (I mainly get pressure near my nose/forehead) has been towards late afternoon/early evening, and nowhere near as bad. I think the cold weather has been helping. (I’ve been on 750mg of diamox since June 2025, as 1000mg gave me awful cystic acne, vomiting from the reflux and diarrhoea.)

Each appointment feels a little degrading (weight shaming) and rushed, so I guess I wanna ask you all, what is your best tactic for advocating for yourself when it comes to asking for extra investigations to be done, like an MRV?

Hi fam!

I’m nearly one year of my IIH diagnosis, with mid June 2025 being the start of my diamox journey.
Like most, my electrolyte levels have been low to just below normal. My electrolytes that are typically low are magnesium and bicarbonate. Especially bicarbonate; my levels are usually 18 or 20, when the range should be 22-32. (*I’m from Australia).

I’ve actually worked out that when they get low, my right under eye twitches on and off everyday until my levels go up a little. 👀

ANYWAY!

My doctor recommend consuming a daily electrolyte. (I started to use hydramama).

Every single time I have an electrolyte (even when slightly diluted) I get heart palpitations.
My doctor hasn’t been helpful when I’ve brought this up, she isn’t deeply concerned about my electrolyte levels or the palpitations so I thought, I wonder if other people in this group have or do experience this with electrolytes?

I want so badly to have them daily, so I can up my magnesium and bicarbonate (my two lowest ones) but the heart palpitations are scary.