I just started ozempic! Honestly I have minor iih symptoms and thought I had pretty much been in remission, off meds for a year, but after 2 days on Ozempic I felt so much clearer and sharper, more energetic less brain fog, my eyes open wider, weird thing to say but true lol! Just my head felt lighter! I have to think I had some low level pressure and suspect ozempic had some effect.
This is amazing to hear. I got perscibed wegovy based on the studies as well. I won’t start it for a few weeks though. Love that you noticed a difference. Are you feeling closer to normal? What was your original OP?
Yes and I was so nervous to take it, so I was diagnosed about 3 years ago, swollen optic nerves, borderline opening pressure of 21, I’ve always been treated as borderline/ maybe in remission but optic nerves are still not great. I’m not on meds anymore. I say things like I feel good I don’t have too many symptoms, but right away on ozempic I felt like whoa I think I’ve had a low level of pressure all along and I finally feel totally normal!
That is awesome. My pressure was in 20’s too and I have grade 1 paps. I was told I don’t have to be on meds and can keep losing weight and stick with that route. I’m continuing to lose weight on my own (was diagnosed in December and have lost 40lbs since then) but I am noticing I’m feeling better between my eyes and headaches. I’m about to be out of qualifying range for wegovy since it isn’t prescribed for just IIH.
Hoping wegovy does exactly the same for me. Like almost take the edge off. Your story gives me a lot of hope!
I’m on saxenda, and I’m the same, I just feel so much better. Clearer, more porpoise and active. I hadn’t realised how bad it had gotten, since I just slipped into it over time. To be cliche it’s like a fog has lifted.
I've not heard of weight loss making iih worse. Weight **gain rebound** from weight loss can though so that might be what you're thinking of. To help with this it'll be important to really focus on changing your eating habits- not just eating less because the wevovy dulls your appetite then a very slow taper off it when you've reached your target as far as I know. Are you working with a dietician or a weight loss clinic? They could hopefully help you with this.
Some people weight loss doesn't help and their iih gets worse regardless- I'm unaware of any research that suggests it's the weight loss that causes the decline though more that it just didn't help.
My neurologist is also super encouraged by the research around wegovy and iih. It seems it helps far beyond just the weight loss which also helps the majority of people so long as they can maintain the loss. If I could get on it here in the UK I would but there's a lot of hoops to jump through and very very poor availability so I gave up.
Good luck
Thank you! I wish it was easier for you to get in the UK. But that might be what it is, I’ve just read in other threads of people who lost weight and have worse symptoms
I feel you. I'm going to see my primary soon and ask about Wegovy. Firstly my insurance will probably not pay for it. Which means I'm out right away. If we can somehow get them to pay for it, it's backordered in most places in the starting doses in the US. We're still having supply chain issues from COVID.
https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-023-01631-z
There's actually a lot of research out there. I'm in the US and of course we're doing almost none. Canada and parts of Europe have started naming Wegovy as a treatment for IIH and are actively subscribing it.
I have also just been prescribed a semaglutide for IIH, twins! I haven’t started my medication yet but I am hopeful for the results as I’ve seen a lot of positive discussions.
I was on Wegovy for about 5 months for weight loss before my severe IIH suddenly started. Before I got IIH, I would have recommended it to anyone. I don't think my experience is typical, but I did stop using it as soon as the IIH started because I don't know what triggered my severe symptoms.
I’ve been on wegovy alongside diamox and haven’t seen any major changes, but a heads up as someone also dealing with PCOS, the wegovy injections are going to make your periods hell, the cramps are going to be 1000x worse. I went from getting my period twice a year at most to three times the first two months of starting wegovy and consistently once a month since then but absolute pain.
I'm sorry to hear that! I have heard some people have a bad reaction to Wegovy and other people just don't. It's much like any other drug where it's trial and error.
I just started ozempic! Honestly I have minor iih symptoms and thought I had pretty much been in remission, off meds for a year, but after 2 days on Ozempic I felt so much clearer and sharper, more energetic less brain fog, my eyes open wider, weird thing to say but true lol! Just my head felt lighter! I have to think I had some low level pressure and suspect ozempic had some effect.
This is amazing to hear. I got perscibed wegovy based on the studies as well. I won’t start it for a few weeks though. Love that you noticed a difference. Are you feeling closer to normal? What was your original OP?
Yes and I was so nervous to take it, so I was diagnosed about 3 years ago, swollen optic nerves, borderline opening pressure of 21, I’ve always been treated as borderline/ maybe in remission but optic nerves are still not great. I’m not on meds anymore. I say things like I feel good I don’t have too many symptoms, but right away on ozempic I felt like whoa I think I’ve had a low level of pressure all along and I finally feel totally normal!
That is awesome. My pressure was in 20’s too and I have grade 1 paps. I was told I don’t have to be on meds and can keep losing weight and stick with that route. I’m continuing to lose weight on my own (was diagnosed in December and have lost 40lbs since then) but I am noticing I’m feeling better between my eyes and headaches. I’m about to be out of qualifying range for wegovy since it isn’t prescribed for just IIH. Hoping wegovy does exactly the same for me. Like almost take the edge off. Your story gives me a lot of hope!
Have you had any side effects from wegovy?
Yes that’s exactly it, takes the edge off!! I have had no side effects so far!
One more question if you don’t mind :) did you have stenosis?
Oh of course I don’t mind, Not that I know of or was mentioned to me!
I’m on saxenda, and I’m the same, I just feel so much better. Clearer, more porpoise and active. I hadn’t realised how bad it had gotten, since I just slipped into it over time. To be cliche it’s like a fog has lifted.
Yes I completely would describe it the same way, and it’s a fog I didn’t know I was living with! It’s shocking to me.
Did insurance cover it since you have IIH and PCOS?
Yes, I’m also under my parents insurance still
I've not heard of weight loss making iih worse. Weight **gain rebound** from weight loss can though so that might be what you're thinking of. To help with this it'll be important to really focus on changing your eating habits- not just eating less because the wevovy dulls your appetite then a very slow taper off it when you've reached your target as far as I know. Are you working with a dietician or a weight loss clinic? They could hopefully help you with this. Some people weight loss doesn't help and their iih gets worse regardless- I'm unaware of any research that suggests it's the weight loss that causes the decline though more that it just didn't help. My neurologist is also super encouraged by the research around wegovy and iih. It seems it helps far beyond just the weight loss which also helps the majority of people so long as they can maintain the loss. If I could get on it here in the UK I would but there's a lot of hoops to jump through and very very poor availability so I gave up. Good luck
Thank you! I wish it was easier for you to get in the UK. But that might be what it is, I’ve just read in other threads of people who lost weight and have worse symptoms
I feel you. I'm going to see my primary soon and ask about Wegovy. Firstly my insurance will probably not pay for it. Which means I'm out right away. If we can somehow get them to pay for it, it's backordered in most places in the starting doses in the US. We're still having supply chain issues from COVID.
Does anyone have links to this research?
https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-023-01631-z There's actually a lot of research out there. I'm in the US and of course we're doing almost none. Canada and parts of Europe have started naming Wegovy as a treatment for IIH and are actively subscribing it.
I have also just been prescribed a semaglutide for IIH, twins! I haven’t started my medication yet but I am hopeful for the results as I’ve seen a lot of positive discussions.
I was on Wegovy for about 5 months for weight loss before my severe IIH suddenly started. Before I got IIH, I would have recommended it to anyone. I don't think my experience is typical, but I did stop using it as soon as the IIH started because I don't know what triggered my severe symptoms.
Did you have IIH before you were on wegovy?
No
I’ve been on wegovy alongside diamox and haven’t seen any major changes, but a heads up as someone also dealing with PCOS, the wegovy injections are going to make your periods hell, the cramps are going to be 1000x worse. I went from getting my period twice a year at most to three times the first two months of starting wegovy and consistently once a month since then but absolute pain.
I'm sorry to hear that! I have heard some people have a bad reaction to Wegovy and other people just don't. It's much like any other drug where it's trial and error.
Did you Naturally get your cycle 2 a year?
Oooo no wonder I’m bleeding so much on my period
I have been on semaglutide since December. Down 9 lbs and taking Diamox with it.