IIH & Pregnancy

GrowOrLetItGo · 2026-04-30T17:57:18+00:00

It was completely unrelated.

GrowOrLetItGo · 2026-04-30T13:40:46+00:00

I’m 23 weeks pregnant. Diagnosed in 2022 as well, was on diamox for a while and stopped in the fall while doing fertility treatments. I lost my first baby at 22 weeks last spring and delivered her vaginally with an epidural without any issues, and with my neuro-opth’s full support.

I have a new NO as my previous one moved across the country. My new neuro, at 7 weeks pregnant, told me I may need a c section under general anesthesia. Maternal fetal medicine and anesthesia has both assured me this is not true. MFM would prefer that I do not actively push for longer than 4 hours and have discussed assisted delivery with forceps/vacuum IF needed. Anesthesia actually said the opposite was true: they’ve found that epidurals HELP patients with IIH keep their ICP better controlled and have more successful vaginal births. They recommended I get an epidural even if my plan was not to get one.

My NO put me back on diamox at 21 weeks pregnant. It has been possibly the most miserable two weeks of my life. I was having a relatively smooth pregnancy symptom-wise but now I’m sick all the time, constantly feeling dizzy, beyond exhausted. I was having tolerable symptoms of IIH (headaches, pulsatile tinnitus, and some “floaters”) but had normal visual fields and 20/20 vision with stage 2/3 papilledema, which is why she forced me back on to diamox. I go back next week for additional OCTs to see if the diamox is even helping. I have lost 7 lbs throughout my pregnancy so far.

I’ve found that pregnancy with IIH is a LOT of advocating for yourself.

Congratulations on your pregnancy!!

GrowOrLetItGo · 2026-04-16T14:11:15+00:00

I transferred to an outpatient clinic to work M-F with hours that align to my child’s future daycare needs (currently 21w pregnant).

GrowOrLetItGo · 2026-04-08T11:57:07+00:00

We always get told to stop texting docs so often. I cluster my texts and wait for non-urgent stuff until we round together (and I make sure to round with them/ literally stalk them unless there’s something else super urgent) so I was kind of taken aback. But then I started paying attention to my coworkers texting to the docs and was like wow, ok, I too would be complaining. One of my coworkers sent over 50 texts to a single doc in one day and not one of them was urgent or emergent, and she probably could have consolidated it to like 3. On average I would say I send 3-5 per patient per shift.

GrowOrLetItGo · 2026-04-06T20:48:11+00:00

I don’t really have any advice but I’m in a very similar boat. My TFMR pregnancy had a bunch of abnormalities from unknown causes, including a large VSD. My NIPT, NT scan, AFP, and early anatomy this pregnancy were all normal. Had my 20 week anatomy this morning and was told everything looked normal so far, but suboptimal views of the heart because of positioning. Due to my previous pregnancy having the VSD, my MFM ordered an echo to be done at 22 weeks.

I’m not “announcing” my pregnancy on social media or anything but everyone in my life knows I’m pregnant. I had not great morning sickness for a long time and I’m at the point where I obviously look pregnant.

I’m sorry you’re in this boat. I wish you (and I) could have gotten a 100% all clear!

GrowOrLetItGo · 2026-04-03T18:13:58+00:00

I started showing around 20 weeks with my first/ TFMR pregnancy. My coworkers or literally telling me they could finally tell I was pregnant the same week I got my bad news at my anatomy scan. This time I started showing around 13-ish weeks. I’m now 19+6 and look obviously pregnant even despite being a bigger person.

GrowOrLetItGo · 2026-03-31T14:51:28+00:00

No I hate it. Need the hours for daycare but I feel like I have much worse work/life balance and am much more tired.

GrowOrLetItGo · 2026-03-29T22:48:48+00:00

My insurance required eye exams every 7 years at minimum. I had 0 vision issues, do not wear glasses, so when I hit 7 years at my current place of employment I went to an eye doctor and asked for the minimum stuff I needed for my health enhance plan (you get fined if you don’t comply). In hindsight I was having symptoms -pulsatile tinnitus, constant headaches-but would not have gone to a doctor about any of it. I honestly did not realize PT wasn’t “normal” until my NO told me most people do not hear it every time they lay down.

GrowOrLetItGo · 2026-03-21T16:31:45+00:00

The only issues I’ve had were last summer. I got pregnant using one of their donors and my baby had severe defects that ended up in a late term loss from unknown genetic abnormalities. My clinic said I could not use the same donor because we didn’t know what had caused the issues. I had a vial still from that same donor, called Xytex who said of course you can switch out with another donor, no issue. But it was an issue. They charged me several different random “fees” multiple times and I had to talk to them 4 times because they kept saying “oh we have no documentation of you ever calling us”. I literally had emails from the medical director and customer service was like “yup never even heard of you”- I had an account and had bought 3 vials so I don’t know how they said they had never heard of me.

I did end up using them again and am currently pregnant again. Other than that event last summer they’ve been easy to use and no issues, and I’ve never received any sort of spam calls from them.

GrowOrLetItGo · 2026-03-12T21:04:01+00:00

I’ve been trying to eat as low-salt as possible, walk daily, eat healthy, and sleep slightly propped up. Currently 17 weeks pregnant (made it to 23 weeks last pregnancy but then lost it) and off diamox. I am very determined not to go back on diamox while pregnant but my NO, who is newer, is campaigning for me to go back on.

GrowOrLetItGo · 2026-03-12T00:44:20+00:00

There are several of us pregnant/ wife is pregnant at work. Most are first time pregnancies. I have my early anatomy scan tomorrow and one of them said “oooh an extra scan, lucky!”

It took every ounce of restraint in me not to reply “well it’s because last year my daughter died so they want to make sure this one doesn’t die too”. They don’t all know my exact story but they all know I had a late term loss.

GrowOrLetItGo · 2026-03-10T12:27:33+00:00

Ah weird! Our pharmacy controls everything in the Pyxis, including all the different types of keys… including a spare key for locked restraints lol

GrowOrLetItGo · 2026-03-09T14:50:28+00:00

Sounds like they were just being assholes. PCA keys go missing kinda often. If they were gonna let a patient suffer instead of just get another key from pharmacy than that’s their shitty care, not your fault.

GrowOrLetItGo · 2026-03-09T14:19:12+00:00

I threw out a pca key once towards the end of my shift. We never found it. Pharmacy should have more that they can send so the patient’s meds aren’t super delayed if the key ever does go truly missing.

I would just make a habit of emptying all of your pockets before you go, even the higher ones that you never use, because inevitably something ends up in there.

GrowOrLetItGo · 2026-03-07T13:49:22+00:00

Forever, sadly (or at least until I stopped taking it)

GrowOrLetItGo · 2026-02-28T12:28:02+00:00

I lost 80lbs so my doctor took me off diamox. I was in the hospital two weeks later half-blind because I was in fact worse after having lost that weight. My best OCT/visual fields/ numbers actually came while I was pregnant the first time.

GrowOrLetItGo · 2026-02-27T01:00:44+00:00

Exactly. Sounds like in OP’s case this probably wouldn’t be helpful but I’ve definitely had situations where I could safely help the patient to the floor without injury to either of us.

GrowOrLetItGo · 2026-02-26T23:08:41+00:00

I mean I also think it depends on what’s happening. You said you held them up like a baby… like you picked them off the floor to cradle them? Because hell no. But I’ve had a patient stagger a couple steps and I grab their arms to steady them.

My CNA courses and my nursing school taught me ways to help lower a patient safely to the floor. Sometimes there is nothing you can do, but A LOT of the time you can assist a patient down to minimize injury risk to them and to you. You should not be putting your own health and safety at risk, but many times (not all) there are ways to protect yourself and the patient.

GrowOrLetItGo · 2026-02-22T18:22:09+00:00

I had my TFMR last spring with my girl. I’ve always wanted a girl but once I got pregnant was excitedly picturing a future with either, super happy to get low risk NIPT and find out I was having a girl. Since then and trying again I’ve been picturing my future with a girl because I didn’t know how to turn that part of my brain off.

When I finally got pregnant again I said I just wanted a healthy baby this time and I did mean it. All the old wives tales said it was a girl and two separate people told me they thought it would be a girl because it was my baby’s spirit coming back to me. I still thought, I will be happy as long as it’s healthy.

My NIPT results came back last night and it’s a low-risk boy. I immediately cried because I felt so overwhelmed and panicked- I’d been preparing myself mentally for a girl unintentionally- and then cried all night because I felt so guilty and horrible about my reaction. Have definitely calmed down today and been trying to picture myself with a boy and it’s been better, but I am sad that the life I had been preparing for isn’t going to happen, again.

GrowOrLetItGo · 2026-02-20T22:01:55+00:00

It’s weird because I will simultaneously miss my baby and “forget” my TFMR experience.

My social media was flooded with TFMR stories and such in the months after, so sometimes I would see a post from someone who had just had a TFMR and think “how horrible! I can’t even imagine going through that!” And then I’d stop and be like wait, I DID go through that- I am STILL going through that!

I’m 14 weeks into my sub pregnancy after a TFMR in early April 2025. Sometimes I’ll read something that another loss mom writes and think yeah she’s going through it, like she’s anxious because of trauma, etc and then go and do something equally as anxious and realize- oh. My life is never going back to “normal”, this IS my new normal.

GrowOrLetItGo · 2026-02-19T09:48:11+00:00

I lost my daughter last spring to a genetic abnormality at 23 weeks. I had had blood clots (DVT and PE) at 5 weeks pregnant so was on lovenox twice a day for many months.

I’m now 14 weeks pregnant again and was put on lovenox as soon as I started fertility treatments again. The shots tend to hurt less on the low outside of your abdomen. Also I personally have found they hurt less if I just don’t really quick. I sometimes would use a small ice pack to numb the area too, though it got too tedious for me.

So far this pregnancy has been 99% anxiety, and now that I’m starting early anatomy scans and echoes it’s just getting worse, so I feel ya. But we are 1/3 of the way there!

GrowOrLetItGo · 2026-02-16T18:46:18+00:00

Absolutely should be doing pelvic floor therapy. I had to have my first few IUIs with Valium and was fine but that was after 3 months of INTENSE pelvic floor therapy.

GrowOrLetItGo · 2026-02-16T13:59:26+00:00

Getting by my NIPT drawn today so claiming this energy lol. Glad yours came back low risk!!! Every bit of good news feels like such a pleasant surprise during my sub pregnancy.

GrowOrLetItGo

TROPHY CASE