u/Charming-River87

My neurologist put me on duloxetine due to vestibular issues. She currently thinks I might be experiencing vestibular migraines or vestibular epilepsy. I’m actually doing an ambulatory EEG right now to rule out vestibular focal seizures, as I had some symptoms that seemed epileptic.

I have been taking most of the side effects in stride. The only one that bothers me is that I have lost all sense of hunger cues. I just never feel hungry anymore and I have to force myself to eat. I recently got myself up to a healthy weight (125 lbs) and do not want to fall below 100 lbs again. Does anyone have any advice for getting hunger cues back?

So, a couple days ago, this was posted in this sub: https://www.reddit.com/r/VestibularMigraines/s/J7GoE0KfML

And, it reminded me that I had prisms put in my glasses back in 2021 for double vision episodes that I had been experiencing. In January 2025, I moved and had to get a new optometrist who told me I didn’t need the prism anymore and took it out of my glasses. This is also around the time my vestibular problems started and my double vision episodes slowly began to return. I told the optometrist this January (2026) that I was having double vision episodes again and he said that it was “just my eyes getting tired” and that I still didn’t need a prism.

Well, I noticed this year that my double vision was getting worse and worse, the episodes were more frequent and lasted longer. It was at the point where I woke up with double vision and it would last the majority of the day and only start to wind down late into the evening.

So, because of the post made by u/Adventurous-Pen-5625 I went into a different optometrist today and she noticed that I definitely needed a prism still. So, she had me put on a trial pair of prism glasses and my vestibular issues slowly started to fade away the longer I wore the trial glasses. I am hoping this fixes most of my vestibular issues, even if it doesn’t fix all of it.

What is crazy is that I went through two rounds of VNG testing, an MRI, and an EEG. I also have another EEG soon to try and figure out what is wrong and it might have just been my glasses this whole time!

So, if you think it *could* be your vision, go get it checked out for sure!

I’ve been having some vestibular issues recently. It mainly feels like I am rocking on a boat. For the last two or so years, it was more “episodic” and I would have periods of feeling incredibly dizzy and then immediately need to sleep because I was so, so tired.

However, the last couple of months I have been feeling this lingering rocking sensation that is driving me crazy. So, I’ve been going to the doctor to figure out what it is. I recently had a VNG test that basically told me I had VOR dysfunction and that my unsteadiness is caused by something in my brain. I then got an MRI that my neurologist did not seem too concerned about.

However, I told her about being autistic and my symptoms and she started to suspect epilepsy. (If not epilepsy, then I probably have vestibular migraines.) So, she had me do an EEG today.

Some of my symptoms are:
- Dizzy “attacks” that have turned chronic. They make me feel like I am rocking on a boat. When it is bad, I feel like the boat is rocking harder and faster.
- Pressure in head sometimes.
- Trouble finding words or talking feels “funny” sometimes.
- Brain fog sometimes.
- Sleep “attacks” where I just suddenly feel absolutely exhausted and like I need to sleep immediately.
- Horizontal double vision only during the day and only for objects in the distance. Doesn’t always happen but is much more frequent recently.
- Lifelong intense feelings of déjà vu. (I get the feeling that my dreams are “prophetic” in a sense, like I have dreamed that this happened before.)
- Lifelong high anxiety compared to my peers.
- Instances where I “blank out” and am not paying any attention to anyone or anything. Usually most noticeable during conversations or when I am teaching (I am a professor).

Well, I thought the EEG wasn’t going to be so bad, but oh boy. It was horrible! The strobing light was the absolute worst thing I ever experienced. As I watched it, I felt like I was entering a trance and my vision doubled and I could not get it to focus. I felt like I was dying. It was so bad that the technician noticed that I was not doing well and we had to take a break and try it again.

The double vision did not go away until the technician had me close my eyes for a few minutes. Afterwards, I felt scared and unsteady. The technician got me some water and I was able to walk back to the front after a few minutes of just sitting there. I then had to sit in my car for an hour before I felt safe to drive home.

Now that I’m home, I feel absolutely exhausted. I feel like a ton of bricks have hit me and that I just need to rest. This is a surreal experience.

I just got a notification that my EEG showed “unspecified convulsions.” I don’t know what this means at all but I feel unsettled and uneasy about the whole thing.

I guess I am looking for reassurance and I was wondering if anyone else had a similar EEG experience in here? I truly thought it was going to be vestibular migraines causing my issues but after this stint and the report, I guess it might be more possible that it is epilepsy.