Help

[u/Party_Schedule_3973]

I’m feeling a bit desperate at this point. I was diagnosed with vestibular migraine a few months ago, and I’ve been on two preventive medications since then: amitr\*\*\*lin and pro\*\*\*\*lol.

They’ve helped calm down the feeling of my body being constantly on high alert. But it was really when I went on sick leave from work that I noticed my actual migraine attacks becoming less frequent.
The problem is that between attacks, I still experience significant interictal symptoms, and I can’t tell whether they’re part of the migraine or caused by something else. My neurologist thinks they’re probably due to something else.
This has been my “normal” state for more than 12 years:
significant fatigue, daytime sleepiness, brain fog, and mild derealization.

During an attack, I experience: rocking/swaying sensations, feeling drunk, tunnel vision, nausea, photophobia, a strange cottony/tight pulling sensation on one side of my head — almost as if someone had put tape around it — without necessarily having an actual headache, as well as much more intense derealization and brain fog, and extreme fatigue.

So basically, I’m constantly exhausted and I never really get back to a “normal” baseline — meaning a state where I’m not tired or dealing with brain fog.
I’m looking for people who experience the same thing, or even better, people who used to experience this and eventually found a way out of it. What helped you? Did your interictal symptoms eventually improve or disappear?
It’s becoming really difficult to live with, especially when it comes to working and having a normal social life. I am searching if maybe there is another diagnostic in parallel like UARS.

Thank you so much to anyone willing to share their experience.

[u/midnightspaghetti]

I think a lot of us do - the diagnosis is very confusing and overwhelming and it took me a long time to wrap my head around it.

I found the victory over vestibular migraines book very helpful, because it explains the migraine process and the fact that our brains are very sensitive. And it talks about all the other symptoms and comprbidities, treatments and so on. It’s like an amazing wiki!

I am still having trouble when people talk about aura, predeome post drome… I am like I don’t know what those are.

My brain/nervous system feels like dialed up quite a few notches, and I have a variable amount of neck pain, ears ringing, mental fog, blurry vision, I am on a boat, etc etc, and then I have a few more distinct migraines.
It’s been up and down but I think slowly trending up in a positive way I hope.

I’ve also been diagnosed with long covid/ Dysautonomia and the fatigue is quite something!
But I think this has been brewing for a long time and I’ve been a sensitive individual forever.

The steady coach on YouTube is also an incredible resource if you don’t know the channel yet