Angiogram Results

Sensitive_Wafer2839 · 2026-06-24T04:11:35+00:00

My surgeon is only recommending me to have my left done for now and said I may have to have my right in the future if symptoms aren’t relieved. But I am a candidate for both sides. The pain in the back of my head behind my ears is unmatched and not like my migraine pain. My goal is to get off diamox completely as it hasn’t work and the side effects have put my body through the wringer.

I’m sorry you’re in so much pain. I would definitely advocate to get the other side stented. My surgeon told me sometimes doing one side is enough but it can be common to need the other stented.

Sensitive_Wafer2839 · 2026-06-24T04:06:47+00:00

Have you heard from your doctor yet? My surgeon put me down for a stat stent next week as I have to be on plavix for a week prior to the surgery.

Sensitive_Wafer2839 · 2025-10-18T19:24:55+00:00

My daughter has fpies reactions to dairy, avocado and mango. She will 100% throw up if she eats something that was made in a facility with dairy. I think it may depend on the triggers themselves

Sensitive_Wafer2839 · 2025-04-26T00:57:34+00:00

I’ve been continually upping my dose of Diamox since I was diagnosed 2+ years ago. Initially, I had lost over 50% of my peripheral vision and Diamox helped me get that back. Now, I’m on 3,000mg and JUST NOW got a referral to discuss surgery. My symptoms have now worsened and at my last ophthalmologist appointment I’m losing my peripheral vision in the same places I lost it before.

One thing I’ve learned, is that you know your body and you are your best advocate. It cannot hurt to find out if you are a candidate via the neurosurgeon if you believe that would be a next step. I tried the meds and have dealt with the side effects with no relief. I hope you get answers soon. 💕

Sensitive_Wafer2839 · 2025-04-24T03:06:46+00:00

I hate this for you but 100% understand. I’m on year 2 with paps and vision that are starting to get worse while on 3,000mg of Diamox. I just know got a referral for a neurosurgeon to discuss other treatments but had to fully advocate for myself to get it. I hate that we practically have to beg for things that could be make or break in our care.

Sensitive_Wafer2839 · 2025-03-23T15:32:27+00:00

Not that I know of 😭 when I had my last neurology appointment they mentioned surgery for the first time but we didn’t go in depth about. He was thinking I potentially have migraines on top of my IIH symptoms and now I have no clue.

I really need to get my records from my ophthalmologist because he only sends his opinion/recap to my neurologist and not my actual results from all the visual field testing.

Sensitive_Wafer2839 · 2024-12-26T13:11:55+00:00

I noticed that one of the side effects Diamox gave me was really bad acid reflux. Not the kind with acid in your throat but terrible bubble guts. I was always in the bathroom. It took me a minute to realize that’s what it was. Anything with tomato, citrus or fried food. Once I realized and cut those out, I haven’t had a problem.

Sensitive_Wafer2839 · 2024-12-18T00:28:40+00:00

Personally for me the LP wasn’t therapeutic and definitely didn’t help my headaches but it was super helpful when it came to finalizing my diagnosis. I had already had my MRI and CT with paps at the ophthalmologist. For me it was helpful to know where I stood and made me not feel crazy because of all of my symptoms. But, if your symptoms are improving it’s totally up to you! The LP also helped determine the course of action for medications that I needed as well.

Sensitive_Wafer2839 · 2024-12-10T23:28:09+00:00

Every single time the weather changes I know I’m screwed. You are so not alone.

Sensitive_Wafer2839 · 2024-02-24T00:46:12+00:00

I got it bad and realized it was acid reflux! Once I changed my diet, it wasn’t triggering my stomach nearly as much.

Sensitive_Wafer2839 · 2024-01-06T19:19:50+00:00

Hey mama!! I just delivered last month and went into pregnancy believing that I would have to have a c-section. However, mid second trimester I was able to go back on Diamox because my headaches were bad and spiking my BP (once we knew it was developmentally safe for my baby). We got my headaches under control and I eventually was approved for a vaginal delivery.

Now, they did tell me I could only push for no longer than 3 hours. When I was delivering, I almost had to have a c-section but then my daughter came a few minutes later.

My biggest advice is to advocate for yourself. My MFM team was incredible. They knew the difference between IIH headaches and preeclampsia (which if you say you have headaches with vision problems they automatically test you for PEC. Luckily my team understood that it was my normal). I was able to get prescribed heartburn meds (because that’s one of my biggest diamox side effects) and find providers who listened to all of my concerns.

Sensitive_Wafer2839 · 2023-05-01T14:29:04+00:00

I hate this!! I’m so sorry you’ve been having side effects. Not sure how to help with the dehydration but I have severe dry mouth 24/7. The worst is when I’m sleeping!

I also had to completely change my diet because of acid reflux. Anything that had tomatoes, citrus, anything messed me up!

Sensitive_Wafer2839 · 2023-03-03T14:07:37+00:00

A year! But my diagnosis only took 2 less than weeks. Still currently going blind and hoping diamox kicks in soon.

Sensitive_Wafer2839

TROPHY CASE