@CatalystDriven

Noticed this on the reddit forums

IIH, Weight loss and Eating Disorders

So today I saw the neurologist- and I took it pretty hard.

I'm not disagreeing in the slightest with his advice but I feel completely destroyed by it.

Long story short is I recovered from an eating disorder recently and gained a lot of weight in the process- this is what he think has caused this exacerbation and led to me being diagnosed.

He wants me to lose 25% of my weight, count calories etc etc..

And when I explained how this focus on food is going to be really hard for me (meaning psychologically- I can very easily lose weight that's not the problem) he said if it's difficult they could give me a gastric band.. and that kind of floored me.

If this is the answer, this is the answer but I'm heartbroken about it. Back to reading all the calorie counts on everything, weighing myself all the time and it's very very very hard for me not to take it to extremes.

I worked so hard to recover from my eating disorder and it's very common to gain a lot of weight in the process... And now I'm being told it's that process that's caused this.

He was very kind and said the whole thing isn't fair and that I'm just unlucky being one of the 1 in 100,000 but it still feels awful.

He's referred me to a weight loss clinic and trying to get me on a GLP-1 antagonist.

I feel very alone. Can anyone else relate?

Response

FYI thread on current trials running for IIH, potential cure if you are interested in participating in. No need for weight loss

https://www.reddit.com/r/iih/comments/131y9pf/invex_therapeutics_iih_cure/

and then the OPs response

Thank you! I did ask about this but was told they're focusing mainly on patients who are in a critical condition and looking at brain surgery and my papilledema is pretty mild at the moment so I wouldn't be a candidate. If it's the same trial I'm thinking of it's a double blind trial and you can't be on any other treatment like Acetazolamide at the same time and so there's a chance you'll get the placebo and be getting no treatment at all- that's why they're looking at patients who the Acetazolamide hasn't worked and are looking at brain surgery as their other option. The idea of risking being on no treatment at all for 24 weeks terrifies me tbh. My neurologist is incredibly impressed with that trials results though and is why he's trying to get me on a GLP-1 antagonist- not
just for the weight loss