New to the group- bizarre persistent aura symptoms

Hi everyone, I stumbled upon this forum and thought it could be a good way to discuss what I have been going through to see if anyones symptoms align.

Back on 12/24/21 I had the onset of my standard migraine, which in the past had just been the throbbing head pain that I could manage with a dark room and a perception (butlabitrol, aceit, caff combo). Little did I know that this migraine would last months.
Not only was I experiencing the terrible throbbing but I got my first taste of aura.
I was having left side numbness and tingling, seeing stars and floaters.
I went to the ER 2x with no relief. Finally I was prescribed triptans which did help, however I maxed out on my allowance. After suffering daily for 2 months, I finally broke the cycle with depakote.
The weird thing is I am still experiencing aura symptoms daily, specifically floaters. I also have the feeling of pressure behind my eye and left temple.
Has anyone here ever had persistent aura without a headache for weeks?
I started taking propranolol daily, however I am weening off it now due to my hair falling out :(.

Would love to know if anyone has experienced these non-stop aura symptoms as sometimes I start to question is this really just a migraine or something more?

Welcome to the Forum!

I get auras and no headaches, but my auras usually go away. I had 2 auras in a row last Thursday and I feel the after-effects for a few days. I did some research on auras a while ago and I found several articles that talk about “persistent auras”. Here is a link to one of them: Persistent Aura Migraine Without Infarction: Symptoms and Treatment

If it was me, I would probably ask for an MRI to rule out anything more serious, but for most people who had MRIs on this forum, the MRI came back clear.

Luckily I had a a normal MRI. I’m hoping the aura resolves soon that article is really helpful! Thank you

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That is very good news @laurenjoyal7 that you had a normal MRI.

With your auras: Do you find that an aura stops and then another starts a while later? Or do the auras not stop at all?

With me, I find that I get one aura, then it stops after about 15-20 minutes. Then there is no aura for about an hour. Then another aura starts and it stops again after 15-20 minutes. Then I am aura-free for a while (usually weeks, sometimes months).

I have had the floaters in my left eye for about 6 weeks straight. The right eye floaters, seeing stars or bright spots comes and goes. It’s so bizarre how my left eye hasn’t stopped for over a month.
Today I just had aura and had a full migraine attack for the first time in a few weeks which is a bummer.
I’d love to explore Botox for prevention to see if this helps resolve the issues.

Your symptoms are definitely different to mine. I have no experience with Botox, but some people on this forum do, @flutters comes to mind. But I don’t think she did it to help with auras.

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Welcome Lauren.

It’s worth digging through the site using the search facility. This came up: Non stop aura

And this: Search results for 'Persistent aura' - vestibular disorders support forum

And this: Search results for '24/7 aura' - vestibular disorders support forum

And this: Search results for 'Continuous aura' - vestibular disorders support forum

On Botox: Search results for 'Botox' - vestibular disorders support forum

The site history is often more useful than new responses because of the amount of people who see new questions is dwarfed by what came before as people move on once they get things under control.

Please let’s not discuss the whole kitchen sink in one topic, best to read and contribute to existing topics for specific questions or create specific new ones as required so it’s easier for fellow sufferers to find the answers in the future

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Hi Lauren,

Right after James said no kitchen sinks, I’m just going to go ahead and respond to both of your posts.

I’m pretty much 24/7 aura. Have been for several years (sorry). These days it’s a matter of degree. I have several always symptoms and a revolving cast of add ons. I’ve forgotten what it’s like not to see floaters, fireworks and starbursts all superimposed on a matrix of visual snow. It’s sort of pretty and it’s transparent enough except when driving after dark in the rain. At night sometimes I think I could put my hand out and push through it and find it viscous. Those are the times when my scalp is tingling and I feel suspended above the ground. Aura for me can be quite the trip. Not much fun at work, though. Or the grocery store. Or wherever.

My mom tells me floaters are crystalline structures floating about in your aqueous humor. Her cataract doctor blasted them with a laser and got rid of hers. So there’s that.

As for the more transient and less transcendental weirdness, I live within a tempest but mostly have found my sea legs, the world often likes to shimmer and shimmy, the walls dance and breath, and my vision turns 2d in hyper real colors.This isn’t trippy so much as distracting. My hand and my mouth go numb or my teeth throb. I shiver. My eyes dilate differently. Then there are the ever present light sensitivity and the mercifully less often sound, motion and odor intolerance. So many random weird things. Often I’ll get a headache but only moderate. For me a straight migraine is one without days of rolling waves of aura but is instead an unannounced ice pick into my brain with my skull in a vice. If a migraine is really going to dog me, I prefer the pain kind over the crazy aura kind because I can think and function through pain. The other kind is more along the veins of a Hunter S Thompson acid trip through Vegas.

Don’t freak out at this point. I’m a special case among special cases with a history of seizures and brain stem auras plus a shortlist of other major autoimmune disorders. I’m hard to treat. Most folks find a migraine prophylactic that works for them. My neurologist says treating the migraine is treating the vestibular too. I have definitely found that to be true.

I’ve failed a lot of migraine drugs, sometimes spectacularly. None of the first tier rescue meds did much. Some of the second tier rescue meds helped. I think I noted you were on the barbiturates/NSAID/caffeine mix. Me too only with acetaminophen/paracetamol instead of the NSAID. I like compazine, Benadryl and amitriptyline for rescue. All of those are now my back up strategy if Ubrelvy fails. Ubrelvy is one of the CGRP drugs and the final tier of rescue meds. I max out my allotment a couple times a month but unlike the other meds, it’s non-sedating and can turn aura off in an hour. I can go from surrealist painting to clear eyed and focused for the rest of the day with just a mild headache.

My other saving grace is indeed Botox. Without Botox MAV dials it up to 12 and I’m essentially nonfunctional and legitimately disabled. With Botox I work a full time job as a department director and manage a household of five. I work out several times a week. Why does paralyzing the trigeminal nerve mean I step off the heaving deck of a boat and stop being numb and foggy and partially blind? I have zero clue. I don’t care. Botox handed me a huge portion of my life back. If God forbid it ever fails I’ll push for one of the CGRP injections.

Botox and the CGRP drugs are miraculous for some and not anything for others. Fortunately we have a robust list of prophylactic drugs to choose from. You have to fail three other classes of drugs in the US to qualify for the use of either Botox or the CGRPs. Most people don’t take that many tries to find a medication that works for them. My wish for you is you’ll be one of them. But if not, there’s always hope.