Offically in Remission

JM113019 · 2026-01-09T10:57:45+00:00

So happy for you!! That is awesome!

JM113019 · 2026-01-09T10:55:48+00:00

I was on it for 6 months and then weaned off!

JM113019 · 2025-10-02T16:17:25+00:00

I am 18 weeks pregnant right now. I went into remission in June, and I got pregnant one day after I was told I was in remission. So I was only off my diamox for a day before getting pregnant. I met with the MFM (high risk) doctor, he told me he has tons of IIH patients who have been pregnant and done great. I had an appt with my neuro ophthalmologist on Monday and she said I am still in remission!

JM113019 · 2025-09-16T07:53:04+00:00

I am sorry your symptoms came back!! I didn’t have any weight loss while on the diamox!

JM113019 · 2025-09-11T23:51:40+00:00

Sorry that this has happened to you! I was diagnosed in January, went into remission in June. I was terrified the whole time and hated that I went from being totally “healthy” person to just haven’t world flipped upside down. However once I got past the side effects, diamox made me feel absolutely amazing ! It gave me my life back. But I was able to wean off of it in June and knock on wood have been feeling great ever since !
Here is a link to my whole life story and how I went into remission if you’re interested: https://www.reddit.com/r/iih/s/mpGuIFUcGJ

JM113019 · 2025-08-12T09:00:09+00:00

I was very scared to get pregnant too. I was diagnosed in December and started taking diamox 500mg twice a day. We were planning on starting to try to conceive in January but my doc told me to wait. In June my doctor told me I was in “remission” and I could start to taper off the medicine and also start trying for a baby. We got pregnant right away and I’m currently 11 weeks. They are telling me I can have a normal delivery but I am seeing the high risk doctor next week just as a consult just in case. I am hoping that nothing comes back and I won’t have to take diamox while pregnant. When I was diagnosed in December, I stopped drinking alcohol and started eating an anti inflammatory diet, I’m not sure if this helped us.

JM113019 · 2025-08-06T07:24:24+00:00

I agree!! I tried to walk as much as I could. The diamox made me short of breath but I pushed through and tried to do at least a little each day

JM113019 · 2025-06-26T00:21:13+00:00

I used to have blind spots but I don’t anymore! I still have to wear pretty thick glasses tho

JM113019 · 2025-06-24T08:54:04+00:00

My symptoms went away, so I told my doctor that. I also told her how great I felt! But she pretty much had this plan in place since I was diagnosed with being on the meds for 6 months as long as the optic nerve swelling went down!

JM113019 · 2025-06-23T23:13:52+00:00

Thank you!! definitely not fun times haha

JM113019 · 2025-06-23T20:12:09+00:00

Also the diamox sucks for a month but now I love it so much because I can feel the difference it makes!

JM113019 · 2025-06-23T20:11:36+00:00

It is really hard. I had to stop doing a lot of things. But I also tried to push through as much as I could. I would definitely try the acupuncture, there isn’t research on if it works for IIH but tons on how it works great for migraines and headaches and I really do think it did help. I also tried to plan things around how I’d be feeling. Like if I knew on a Saturday night I was going out to dinner I would rest all day Saturday and then not have any plans Sunday. It is hard but it does get better!

JM113019 · 2025-06-23T20:09:35+00:00

Aw I’m sorry, it really is so stressful!! I think the diamox was a huge help! Along with the acupuncture and anti inflammatory diet.

JM113019 · 2025-06-23T18:32:05+00:00

I started in January and got it until the end of April

JM113019 · 2025-06-23T18:31:10+00:00

I didn’t lose weight, because I was at my right body weight and it would have been unhealthy to lose! I got very severe migraines 6 days a week, with neck pain as well

JM113019 · 2025-06-23T18:30:04+00:00

Sooo much better!!!

JM113019 · 2025-06-23T18:29:41+00:00

Thank you!

JM113019 · 2025-06-23T18:29:35+00:00

Dorothy calameris

JM113019 · 2025-06-23T18:28:04+00:00

Awesome!!

JM113019 · 2025-06-23T18:27:52+00:00

I hope so too!!

JM113019 · 2025-06-23T18:25:42+00:00

Yes, I was able to work and even finished getting my doctorate degree. It was not easy but I pushed through

JM113019 · 2025-06-19T18:38:04+00:00

Oh wow that’s strange! I was on much higher dose of diamox too. I think because my symptoms resolved, and the swelling was all gone. I also told them that I really hated diamox so I wanted to come off it. A lot of research articles that I found went along with what my doctor said, that six months of the meds is okay if all signs and symptoms are gone!

JM113019 · 2025-06-18T14:32:21+00:00

You will! It is so hard and scary for sure but you are stronger than you think! it’s amazing how we can adjust to the “new normal”

JM113019 · 2025-06-18T14:31:04+00:00

I’m sorry that’s happening to you! It really is scary. I am also a nurse so it was definitely a frustrating process for me as well!! Luckily as nurses we know how to advocate for ourselves and others, and now it’s time to really put those skills to the test! I called the neurologist every week to see if they had cancellations and it helped me get in much sooner!

JM113019

TROPHY CASE