Hello, new to the group but not to the pain.

[Daesin]

Recently I was diagnosed with amongst other things a complex migraine with neurological and vestibular symptoms. I've known for a long time that I had auras, visual auras with migraines. I didn't realize that they came in other flavors. Wow!

A year ago I experienced a bad case of vertigo which has not resolved. It has taken quite a while to get an accurate diagnosis and treatment. We are now in the "Let's see what medicine is going to work" phase of treatment.

I am blessed to work with one of the best neuroimmunologist in the country and I have hope, for the first time in a long time I have I hope that this can be managed. I know it'll never go away completely, well not while I have a pulse, but I know that we can develop some tools to help tackle this beast. Maybe I can get my life back now.

Anyhow, that's me.

Blessings to all.

[Sensei_Mark]

Sorry, I can't help with this. But hopefully, someone who can will reply.

Good luck 👍

[Likeabadstorm]

Did you get any relief? Find anything that has worked for you?

[Daesin in reply to Likeabadstorm]

Hello,

Oh wow, we have tried many therapies, medications, exercises.... you name it we've given it a try or will. One of the big issues is that we've learned that THIS is a compilation of three different issues affecting me at one time. Finding a doctor that was willing to look at this jumbled mess of weirdness without defaulting to the "I don't know" diagnosis of conversion took nearly a year.

Slowly but surely I am parsing out what is part of the migraine and what is part of the vertigo versus what is going on with my eyes lack of convergence and alignment. I have also learned that I have a deformation in my ear which is why the vertigo is not going away with standard therapy. My migraines have a vertigo component. So if I'm having a headache I can get vertigo and it has nothing to do with my ear. Life is weird.

Currently we are on a cgrp shot once a month, Amovig, as well as abortive pills Ubrelvy . I'm really impressed with the pills. I have never had anything touch a migraine and knock it down that fast. Within an hour most of the bad stuff is gone. I still feel hungover and icky but that is acceptable. I'm hoping that the injection will keep the headaches from happening. I don't know how long it takes for the injections to be 100% but I'm really hopeful.

Unfortunately this medication does not have any component for nerve pain. So changing this medication has caused previous nerve damage to really start talking quite loudly again. One step forward two steps back.

Good luck on your journey. I hope something here helped. Blessings to all

[Likeabadstorm in reply to Daesin]

Thank you for all that info. I do hope you find relief from it all. It sounds like you found some promise and hope and finally some doctors that will listen and look more into it for you. I will see another Neuro in April.

[Daesin in reply to Likeabadstorm]

I hope you're able to heal soon and fully. Good luck on your adventure to health.

[Likeabadstorm in reply to Daesin]

Thank you so much. Same goes for you too.