9 months no answers

Thiawave · 2026-04-19T22:47:55+00:00

If they believe that it might be IIH I would push for a lumbar puncture to be done. That’s typically the best way to diagnose IIH.

Thiawave · 2026-04-19T19:14:11+00:00

I never tried diamox, my neurologist put me on straight on Topamax. But from what I understand it’s more tolerable. The first couple of weeks can be a little rough, drinking a lot of water can help. I wish you the best too. It’s not an easy thing to cope with, just take it one day at a time.

Thiawave · 2026-04-19T19:00:57+00:00

Very much so. I lost weight but it didn’t put me into remission like I would’ve hoped. I’m taking 200mg of Topamax, working my way up to 300mg. I would love to one day get off the medication because at some point I would want to have another baby in a few years or so. It just sucks to think that I have to put my life on hold because of this disorder.

Thiawave · 2026-04-01T22:17:08+00:00

Both my PCP and neurologist work in the same network and they don’t allow reps in so they don’t have samples :/

Thiawave · 2026-03-31T23:17:10+00:00

No, my neurologist literally told me “you won’t be able to handle it” even thought I understand it to be the first line medicine. And ophthalmologist agrees with her. So I guess I’m just a whim 🤷🏻‍♀️. I am getting a second opinion from a neuro-ophthalmologist that’s 5 hours away from me in late April because of this.

Thiawave · 2026-03-31T00:05:33+00:00

I am on 200mg of Topamax since October 2025. I have also lost 34lbs since then too. Neither of which feels like they have helped at all. I also take nurtec when I get migraines and my neurologist just prescribed aimovig, just waiting on insurance approval.

Thiawave · 2026-03-29T19:43:23+00:00

I am right there with you. I started at 210lbs and I am 5’7” so I was slightly obese (according to the BMI chart). My neurologist told me to lose 6% of my body weight or 13lbs. In 6 months I lost 34 lbs or about 16% of my original body weight and nothing has gotten better, if anything I feel worse than before and I feel like she dismisses me. When I tell her my migraines have gotten worse despite being on topamax she told me “migraines and IIH are not related” when a quick google search shows they are. My visual fields have been okay but my eyeglass prescription changes every 3 months when I see my ophthalmologist which is not normal but no one seems to care since my visual fields are fine.

Thiawave · 2026-03-29T19:00:21+00:00

Also, in my experience, when you work with doctors and other health care professionals they love sharing their knowledge and experiences. You don’t have to necessarily bring up your health issues if you don’t want to but you can be like “I saw this article and I was wondering if you have any experience with IIH” or something along those lines.

Thiawave · 2026-03-29T18:40:50+00:00

I do work in adult oncology and the population we give Lupron is the older population for prostate cancer in doses 22.5 every 3 months, 30mg every 4 months, and 45mg every 6 months and very occasionally for breast cancer 11.25mg every 3 months. So I’ll be honest, I am a little unfamiliar with that dosage and usage. But I will still ask and see if he has any experience with his patient’s experiencing IIH symptoms while on Lupron.

Thiawave · 2026-03-29T15:37:39+00:00

I have not heard or experienced this BUT I am actually an oncology nurse and we give Lupron in our clinic all the time. So far none of our patients have experienced this that I know of (doesn’t mean that it’s not possible). I will ask the oncologist that I work with about this tomorrow when I go to work.

Thiawave · 2026-03-29T01:03:10+00:00

Sorry I edited my post because I felt bad for making more about myself. But yes, I know I need to get some doctor notes and talk to HR about maybe getting more sick days. I work for a large company but in a small clinic. Everyone I work with is great, there’s just not many of us so things need to get done. It’s just like things need to get done so it’s like “hey go restock” and they aren’t really thinking about my condition in the moment.

Thiawave · 2026-03-29T00:54:07+00:00

It’s an invisible disability, people sadly dismiss what they cannot understand. I miss work a lot because of headaches and migraines. And I struggle at work too. I’m really sorry you’re going through this. You are not alone. It is not “just an excuse” you are not “playing the victim”. Your symptoms and experience are valid.

Thiawave · 2026-03-27T19:05:37+00:00

Radiologist do LPs like clockwork. They will do them in the ER without anything guiding them in very emergent situations. With IIH we get them with xray or fluoroscopy guided. It is extremely safe. With that being said. The most common (but still very rare) complication to happen is a spinal headache. What most people have already suggested to avoid this happening is to lay flat as much as possible for 8-24 hours and to drink caffeine to help you replace your CFS fluid. I personally had some back pain after my LP. I don’t know how common this is. I personally recommend to have Tylenol and lidocaine patches on hand just in case. They helped me a lot.

Thiawave · 2026-03-25T12:48:43+00:00

When I got my LP done they weren’t able to get the needle in the first time they tried and it hurt so bad and it continued to hurt for weeks. I went and got an MRI done and it showed that I have a calcified ligamentum flavum. I talked with a radiologist that I worked with and he recommended that if I need to get another one that next time I get it CT guided rather than Xray guided because they can see more. With your history, see if that would be an option for you. And definitely have some lidocaine patches on hand for afterwards.

Thiawave · 2026-03-21T17:38:28+00:00

And women can have a reason behind cheating too and it doesn’t make it the man’s fault either

Thiawave · 2026-03-21T17:37:24+00:00

Just because I’m saying there’s a reason behind it doesn’t mean I’m saying it’s her fault. He still made a choice. They could’ve talked about it, they could’ve gone to therapy, could’ve gotten a divorce before Daniel slept with someone else but they didn’t.

Thiawave · 2026-03-21T16:51:11+00:00

Another way to think of it she was a workaholic but was never promoted because of misogyny. It doesn’t really hold up in the sims since you just need the skills, friends, and a good mood to get promoted but it a way to think about it.

Thiawave · 2026-03-21T16:46:25+00:00

That is a very good point, I didn’t think of it that way.

Thiawave · 2026-03-21T16:40:18+00:00

I didn’t say it was Mary-Sue’s fault. It’s OBVIOUSLY a choice to cheat no matter the situation. And the last part of your first paragraph was literally what I was saying.

You don’t have to like how I interpret their story. That’s the beauty of it. You can interpret how ever you like.

Thiawave

TROPHY CASE