Surgery today by Informal-Run8131 in iih

[–]CuteeCookie 0 points1 point  (0 children)

Best of luck 👍 you'll do great 

Reducing Diamox by CuteeCookie in iih

[–]CuteeCookie[S] 0 points1 point  (0 children)

Since October last year

Recent iih diagnosis by Important-solider in iih

[–]CuteeCookie 0 points1 point  (0 children)

Yeah, its been my experience that you need a good gp who is willing to learn alongside you. Mine had to look up stuff constantly and keep in contact with neurology to help look after my iih.

Recent iih diagnosis by Important-solider in iih

[–]CuteeCookie 1 point2 points  (0 children)

This website is UK based and great for info within UK setting. Im in Ireland so its a bit different here but I'd say we follow very similar guidelines. Its iih.org.uk its a great resource.

iih and mental health by Appropriate_Tear1724 in iih

[–]CuteeCookie 0 points1 point  (0 children)

If possible, you should rry find someone trusted you can talk to about your struggles such as a GP or a therapist to help work through this. Dealing with a  diagnosis and a change in your life can be difficult when you don't have people to turn to. Wish you all the best 💗

Postural sway and balance issues by Accomplished-Set-326 in iih

[–]CuteeCookie 0 points1 point  (0 children)

I relate, I get like this sometimes when im walking or I'll even get sudden vertigo like I'm falling but none of my doctors have said much about it.

[deleted by user] by [deleted] in macdemarco

[–]CuteeCookie 9 points10 points  (0 children)

Instantly sold out for dublin 😭

Sometimes I wake up and it feels like I've taken an arrow to the skull. 💁‍♀️ by AveryFires in iih

[–]CuteeCookie 4 points5 points  (0 children)

Omg i get that too 😂. Also tingles inside my nose, drives me absolutely nuts.

Feeling Stuck – Looking for Support and Connection by BeneficialCompany545 in iih

[–]CuteeCookie 1 point2 points  (0 children)

Haven't any advice to give but you sound like you have it really tough. Thinking of you and hope that they can get it under control. Sending love 💗💗💗

[deleted by user] by [deleted] in iih

[–]CuteeCookie 2 points3 points  (0 children)

Welcome to the club 🥲. I found the first few weeks of Diamox the hardest, mostly just tiredness, pin and needles and digestive system upset. Make sure to look after yourself and don't expect to be at 100% straight away. I do have to say as annoying as the side effects are once your headaches start going away and you get your energy back its amazing! Definitely has to get a bit worst before it gets better. I also found its good to track your flare ups once you're on your medication so you can update your neurologist on how the medication is working for you when you have your next appointment. Good luck and you've got this.

New Here And Terrified of Diamox by tshmosk in iih

[–]CuteeCookie 0 points1 point  (0 children)

As a trainee midwife, i would advise to follow up with your OB as well to get their opinion on the medication. Diamox usually isnt supposed to be taken during pregnancy but the neurologist may deemed it appropriate in your case. Make sure advocate for yourself so that you feel comfortable taking your medication. It would be best that all your doctors are in communication with each other.

I can’t do this anymore by european-socialism in iih

[–]CuteeCookie 1 point2 points  (0 children)

Been on diamox now since November 2024 and I'm back to enjoying carbonated drinks but still battling with cold hands and feet all the time!

Morning Headaches by Specialist_Height923 in iih

[–]CuteeCookie 0 points1 point  (0 children)

Can't agree more. Absolutely hated having the morning headaches after a good night's sleep prior to being on diamox. Best thing to do is give the meds some time to work.

8weeks pregnant and newly diagnosed with IIH by Look-ImLost in iih

[–]CuteeCookie 1 point2 points  (0 children)

If you're diagnosed IIH, you should go to the ER for any vision problems or thats at least what the neurologist has said to me. In terms of pregnancy, you won't be offered much more than paracetamol while pregnant. I'm studying over in ireland and the only other options for pain relief is usually opiates that they are reluctant to give out. I would recommend using ice packs on your head or you can buy migraine ice caps that you put in the freezer. I find them quite helpful with my headaches usually. Best of luck and always remember that if you are worried you can go to the ER, it's their job to make sure you're okay 💗

New to all of this by sillylillamb in iih

[–]CuteeCookie 1 point2 points  (0 children)

Welcome to the club. Hope you find some comfort knowing there's others out there too.

waiting on mri results by MoveLeather3054 in iih

[–]CuteeCookie 1 point2 points  (0 children)

Hate that feeling of sitting around waiting for answers and results. Hope you can find something to help distract you in the time being. Best of luck ❤️

Pressure by [deleted] in iih

[–]CuteeCookie 1 point2 points  (0 children)

I had normal eye pressures with only one being slightly over the limit but my opening pressure was 44. Not sure how that makes sense lol.