u/Worth-Board5506

Looks like GLP1s are perhaps not the best thing after all. Just read this morning about the lawsuits against some of the GLP1 makers. Given that vision loss is something we with IIH are trying to avoid, the news that Glp1s can cause vision loss was a bit disturbing to me.

I had been thinking about asking the Neuro-opthomologist about possibly going on one as i have only lost 24lbs in the last 6 months and seem to have stalled, but not so sure now given that IIH can cause vision loss, my previous genetic eye disease will cause complete blindness sometime in the next 5-20 years. Not sure I want to throw another vision loss potential into the mix lol.

Do what you feel is best for you, but if you are interested in finding out more, put "ozempic lawsuit" into Google.

Curious and going down rabbit holes tonight.

I have read lots on here about getting to remission and stents, etc, but has anyone actually had their doctor be able to diagnose their IIH and change it to IH as they found out what actually caused the intracranial hypertension?

Ie has anyone here been found with just a "plumbing problem" where there was compression on their jugular vein which triggered the body to IH? I think it was called Eagle syndrome?? Or similar type mechanical issues?

Curious to see if anyone has any experience they can share. Sorry, a bit of a rant too.

Diagnosed with IIH, put on Acetazolamide and told to lose weight. Lost 15lbs in the first couple months in spite of spending 90% of my day in bed. Struggled to eat much, but forced myself to eat 1400-1500 calories a day. I chose food wisely to give me the best bang as i filled up so fast. Symptoms lessened a bit. Neuro-opthomologist was happy.

Weight loss has since plateaued. Now the symptoms have come back in spite of weighing less than I did the last time. Only change is my fat % is down and my muscle % is up.

Of course, my N-O is out of the office until June so on the fence do I wait for an appointment or go into emerg again? When I Google, it says it could be urgent, but my gut is telling me to see if the symptoms get worse because in reality, what are they going to do?? I'm already on the medication. But then I second guess myself and think if I am not thinking clearly should I be trusting my gut?

OK, history and rant over, on to my questions.

Thinking about maybe trying a GLP medication but worried about a few things.

My understanding is GLPs suppress your appetite. If my appetite is already suppressed, how do people deal with getting enough calories to be healthy while still losing weight?

Once you start them, do you need to stay in them for life? My concern is symptoms went away after weight loss then came back with no weight gain, does it turn into an endless cycle of always needing to lose more and more to maintain remission?

Ideally I would love to lose another 40lbs and or drop 5-6 pant sizes, but i know I drop much below that and I look unhealthily skinny. I also get issues with dizziness if i dont eat enough.

Hubby is very supportive of my health issues but seems to think that the best way to lose weight is what works with him. Ie going on a long hike before breakfast as soon as the kids get on the school bus to kick start burning calories before intaking anything. I am all for that, except if I don't nap for up to a few hours after the kids get to school, my symptoms get worse.

Have been working in the garden a lot this spring (digging, moving dirt, weeding and planting), trying to do light weights and stretching and staying as active as I can, and have definitely switched fat for muscle. But if gaining muscle and losing fat is enough to pull me out of remission, how do you lose weight? So confused, and my brain is like moving through pudding it's so slow to make sense of things.

Do the needles hurt? I am not a fan of needles, I can't imagine having to give myself one.

Sorry, I hope this makes sense, brain is a bit garbled tonight.

so weird, I went into a grocery store somewhat normal, by the time I left, I knew something wasn't right. Hubby said I was speaking really slow and it seemed like I was having a hard time coming up with words. Did a stroke checklist, don't think it was it. That's how fast i came out of "remission"...less than 15 minutes.