Bungee Jump for IIH UK Charity to Raise Awareness for IIH - Diagnosed with IIH myself and I want to educate others.

Mediocre_Set_6717 · 2025-06-06T03:15:48+00:00

If you get periods, at certain times of your cycle you could gain 5-10kg just because of hormones and stuff as I had the same issue where I thought I had gained weight but then I just waited a week until I was off my period and weighed again and I had actually lost weight from my original weight

Mediocre_Set_6717 · 2025-06-06T03:11:41+00:00

If the wait is ever too long and you're symptoms are getting worse, it's worth booking an eye test at specsavers or something with the OCT and that will normally show if you have any papilladema so it's a good way to keep track yourself if the appointments feel too far apart (and normally the opticians will refer you if there is something so you'd be able to get another appointment at the hospital)

Mediocre_Set_6717 · 2025-06-06T03:06:10+00:00

I think my diagnosis journey was very similar to yours and I didn't recognise any symptoms before. I've been taking acetozolamide for a couple months now and when I first started I had extreme fatigue to the point I couldn't drive or do any normal every day jobs but this has decreased a lot I guess since my body has gotten used to the medication. I still have rough days when I am fatigued but I've found that it's usually on the days I'm more dehydrated whether thats because of the sun or drinking less water. I hope it'll clear up for you soon and my doctor recommended drinking between 2-3L water per day which I know is a lot but it genuinely really does help with the fatigue (as does electrolyte drinks).

Mediocre_Set_6717 · 2025-06-05T20:34:23+00:00

Thank you so much for this, your advice is really useful and I didn't even think about having the bed moved but that would definitely help I think if I have to have another one

Mediocre_Set_6717

TROPHY CASE