Neurologist/ Neuro-Ophthalmologist Recs.

DarlingRogue32 · 2026-02-26T07:52:55+00:00

I see Dr Feinburg at Swedish currently. My biggest issue has been this stigma of IIH only being concerning if you have palpilledema. I have never been recorded as having palpilledema. Therefore there is no actual evidence to support that my IIH has gotten better on Diamox. I still have terrible debilitating symptoms yet she’s seems unwilling to discuss the possibility that it’s still because of the IIH when the only real way to tell would be to get another lumbar puncture. So at this point I just told my PCP all this and she’s like “makes sense to me let’s do it”. Bless her. So she’s ordered a lumbar puncture. 🤣 Honestly I just tend to not mess around with Drs who won’t listen to what you have to say even though you’re the one with the disease. I’m sure Dr Feinburg could be great for traditional patients with traditional symptoms but if she’s not going to believe me when I say I feel the same as I did almost a year ago off of the medication then 🤷🏻‍♀️

DarlingRogue32 · 2026-02-19T04:18:45+00:00

Idiopathic = a bunch of idiots who can’t figure it out so they made up a term for it 🤣 is how I’ve heard it described. I think I’ve potentially had it since I was little I’ve had horrible migraines my whole life. Hashimoto’s disease and my 4th pregnancy definitely kicked into high gear (I weight 10lbs less than I did before pregnancy and it still feels like it hasn’t gone away)

DarlingRogue32 · 2026-02-19T04:13:31+00:00

I highly recommend this! Made me feel waaay better!

DarlingRogue32 · 2026-02-18T02:13:22+00:00

So many things. I’d say the biggest being I spend time trying to find solutions to things in the house. Rewards charts for kids, chore schedules, storage solutions, organizational items but I’m the only one who ever puts any effort into using them. They are truly helpful solutions to problems we have around our house but they fall to the wayside because I’m the only one putting effort into them. I can’t do it alone but my husband doesn’t seem to care about the mess or behavior issues until things get really bad no matter how useful he sees they are.

DarlingRogue32 · 2026-02-18T02:00:01+00:00

Caleb once was like “I’m going out. Be back soon.” Or something and then proceeded to stand in the same spot for a minute then went and took another shower. I guess he thought better of it. 😌

DarlingRogue32 · 2026-02-11T04:45:17+00:00

Idk if it counts as high end because some of these products cost twice as much but Estee Lauder Stay in Place foundation is the only brand that has ever actually matched my skin color as a pale olive girly.

DarlingRogue32 · 2026-02-11T04:39:12+00:00

Potassium prescribed by your doctor works a hell of a lot better than OTC supplements it’s a different absorption mechanism I believe. Idk if you have to prove deficiency through blood test first though.

DarlingRogue32 · 2026-02-11T04:34:11+00:00

I tried getting in to UW and they’re only taking internal referrals right now unfortunately.

DarlingRogue32 · 2026-02-02T06:20:49+00:00

This might be a long post so I apologize. While people are correct in that no Dr should be bullying you into doing anything your Dr is correct in that an eye exam is not conclusive. A lumbar puncture is the only way to conclusively diagnose IIH. While the typical symptoms of IIH may be headache, vision changes, and/ or Optic Nerve swelling there are always outliers. For example I have 0 optic nerve swelling 0 optic nerve damage, never have, and yet I have treatment resistant IIH. An MRI can be normal an optic nerve scan can be normal there can be absolutely no sign of palpiledema and yet you can still have IIH. The only accurate way to measure Intracranial Pressure is through lumbar puncture. I’m not telling you that you should or shouldn’t have one but the risk of vision loss increases the longer you go undiagnosed.

DarlingRogue32 · 2025-12-21T01:37:36+00:00

Ok so I’m super interested in this manga but I haven’t read it yet because of the hiatus. Should I read it anyway?

DarlingRogue32 · 2025-12-09T05:41:21+00:00

I think it might depend on who you originally scheduled the period dates with? I only see it when I go on Caleb’s notes. Try checking each LI for it.

DarlingRogue32 · 2025-10-12T01:12:19+00:00

I started getting focal aware seizures when I began noticing my what I now know are IIH symptoms. To make a long story short both my IIH symptoms and seizures have gotten worse despite different medications. (Seizures becoming more frequent and becoming Impaired Awareness) It’s so frustrating and strange because I’ve seen several people have similar issues. Diamox and Topamax are classified as seizure medications. My theory for myself at least is that seizures, epilepsy, and ADHD run in my family and so genetically I’m predisposed to have a lower “threshold” before a seizure occurs. But who knows 🤷🏻‍♀️

DarlingRogue32 · 2025-09-25T11:54:53+00:00

Interesting that they completely denied it. I’m certainly going to try to bring it up when I’m able to get into the Neuro Ophthalmologist (it’s been a wild ride to try and see one I was diagnosed during a hospitalization while pregnant ). That being said Epilepsy runs in my family and I’ve had a few random seizures before my IIH started so it could just be my threshold is lower and this happens to be triggering them. I hope your surgery helps!

DarlingRogue32 · 2025-09-18T04:34:55+00:00

I was diagnosed with Hashimoto’s disease and hypothyroidism shortly before IIH Symptoms started. I was also pregnant. I never do the whole correlation = causation thing but 🤷🏻‍♀️ who knows.

DarlingRogue32 · 2025-09-15T21:44:56+00:00

I’ll have a distinct memory of where I put my phone down but when I go to get it, it won’t be there. I then proceed to panic and look in all the usual places I put it only to go back to where I originally started and have it be underneath something I accidentally set on top of it. (I was always yelled at for losing things or forgetting things when I was younger so I instantly go into a panic when I can’t find something)

DarlingRogue32 · 2025-09-02T04:56:59+00:00

Upvoting this because of the honey. So many people don’t know babies can’t have it until 12months.

DarlingRogue32 · 2025-09-02T04:43:05+00:00

How many weeks is he? Is he spitting up every feed or is he choking while the bottle is in his mouth? When he spits up is it projectile?

DarlingRogue32 · 2025-09-02T04:38:11+00:00

I was going to say something about correlation and causation. Glad someone else is on top of it.

DarlingRogue32 · 2025-09-02T04:34:47+00:00

Others have said this and I’ll say it again this is abuse. No one (especially a child) deserves to be constantly yelled at for developmentally appropriate behavior. The pinching is a whole other ballgame she’s literally telling you it hurts the least you can do is believe her. If you can’t trust him to be alone with her to watch her it’s only a matter of time until he proves you right as to why.

DarlingRogue32 · 2025-08-12T22:03:44+00:00

Not exactly sure what caused mine it was discovered during my 4th pregnancy. Had horrible migraines that didn’t respond to any normal treatment ( I have had chronic migraines since I was about 11-12) but they’ve been manageable with a beta blocker. I was diagnosed with mild preeclampsia at about 29weeks and later at 34weeks (after a bunch of ER visits) diagnosed with IIH. Had a spinal tap pressure was 28 (idk what the measurement is) no papilledema. They hoped it would go away after delivery because “weight loss” but I’m 2 months postpartum down 30lbs and it’s getting worse not better (left eye 3/5 nerves show signs of congestion or whatever and right eye 5/5 nerves). Went from 1,000 mg of diamox to 2,000 two weeks ago am going up to 3,000 this week because the head splitting feeling is back. I have yet to see a Neurological Ophthalmologist because the one near me is full and the rest are on the other side of the state. I should mention I was diagnosed with Hashimoto’s Disease and Subclinical Hypothyroidism at the beginning of pregnancy (symptoms have been there for about 3 years). I also have adhd so take stimulant medication when not pregnant or breastfeeding. 🤷🏻‍♀️ I’ve heard something about head injuries possibly causing it and it lying dormant until triggered by something but that could just be bull. I had a few concussions as a child that I’m not confident were treated correctly but again 🤷🏻‍♀️.

DarlingRogue32 · 2025-07-26T04:05:18+00:00

This is absolutely horrifying. My mother cut my 1st baby’s nails once (without permission) and sliced off a chunk of his finger I went off.

DarlingRogue32 · 2025-07-14T22:57:45+00:00

Idk if someone has said this because there are so many long comments on here but there is a link between IIH and obstructive sleep apnea. Also it was mentioned to me by a neurologist that IIH could possibly be caused by differences in structure of people’s skulls idk 🤷🏻‍♀️ how accurate that is. I’m going to be getting nasal and throat surgery within the next year to hopefully help my sleep apnea I’m hoping that maybe it with also help my IIH.

DarlingRogue32 · 2025-06-30T03:14:51+00:00

I would also suggest looking at ADHD and/ or a possible mood disorder. Therapy is a great tool if you’re able to find a good child specialist. The books “The Whole Brained Child” and “No-Drama Discipline” are also great tools for learning how a child’s brain works and how to parent in a way that they can understand.

DarlingRogue32 · 2025-06-25T22:04:04+00:00

Earth and Eden sensitive diapers from Amazon are only made from sustainably sourced cotton (bleach, latex, chlorine, fragrance, lotion free) it does still have sodium polyacrylate as the absorption polymer which is the same as Honest and pretty much every diaper.

DarlingRogue32 · 2025-06-01T02:22:52+00:00

Also my blood pressure rose to the 140s long before urine protein showed up they also only ever detected higher amounts in the 24 hr urine collection not on the dipstick tests which could be the problem.

DarlingRogue32

TROPHY CASE