Weird New Symptom: Light Flash / Hearing Muffled ??

mironUK

Hi Violet,

I used to get similar light flashes regularly. I described them to my doctor as similar to strobe lights... it does sound crazy but not to the person who is experiencing it.

Alex

violet6

Thank you for sharing that with me, Alex! It was indeed odd...I haven't had a recurrence yet, but I'm curious as to what else my brain might have to throw at me with in this dizzy "adventure"!

Violet

pamg6

Hi Violet,
I know that I had similar light experiences. They would come and go pretty quickly. I think and MRI is always good just to rule out stuff, but I betcha its just another migraine sx. I know that my sx would seem to cycle with new ones being added in. Since my meds, this has simmered down quite a bit, just remember that migraine is neurological, so really anythin is possible!!!

Hugs to you Violet,
Pam 3

violet6

Hi, Pam!

It is good to hear from you. Thank you for letting me know about the lights...I, too, seem to be having more symptoms filter in over the months. While the extreme vertigo sort of waned a bit (though I'm still dizzy 24/7), new things have started. First, it was tingling in my lips, which happens randomly and more often now. Then, it was the light & weird hearing thing. Bizarre stuff, isn't it?

How are you doing these days?

--Violet

pamg6

Yeah, my lips sort of quiver for a couple seconds and then stops or the bridge of my nose twitches or vibrates!!!!!!
I good, I look forward to my doc visit tomorrow morning. I feel as if I need something else. I am doing soooooo much better, but a couple of sx still persist!!!!! it is a stubborn thing isn't it? I may add in Effexor or Topomax. I will talk with the doc and see what he says.
What is your protocol these days?

Pam 3

violet6

Pam--

I haven't started meds yet b/c I was trying to see if time/diet/supplements/exercise would help & I was also still trying to rule out other possibilities...however, I am really ready for medications. My doc gave me some Klonopin recently, but I am thinking I want to try an antidepressant. Nori, Paxil, or maybe Prozac, just to see if it would work for me--I know it's not a first-line drug typically. I have also been interested in topamax...I have heard that it can be very helpful. I know someone who took it for a while for MAV and then was able to get off of it and be drug-free, at least for now. I also still need to look into the hormones thing...

I hope your doc has some good ideas for you tomorrow! Please keep me posted on how you're doing...

Violet

dollydd

Hi Violet
I remember that your first dx was vn and if that was right then you need to be patient - I think you are only at the half year stage and if you are one of the many who do not recover quickly from vn, then you probably have a way to go yet. I am now at 2 and half years and almost recovered, just a few eye issues to cope with. Had someone suggested 2 years ago that I had MAV and put me on a medications regime I would have done it, I was so desperate to feel better but it would have been the wrong thing to do. But the real point is that it is only in the last six months that I have felt my strength return, I am now working some really long days again. When I look back to how I felt in the first 2 years, there is no comparison.

One of the things that has really bugged me during the last 2 and half years has been the appearance of 'weird new symptoms' like the ones you mention, which hang around for a while then disappear only to be replaced by something else. My doctor says it happens because the recovery process from vn involves several sensory processes recuperating and they do it at different levels and not all together so how you are one day is not necessarily how you will be the next.

I wish you could all come to the National Neurology Hospital in London, the neuro-otology department there is really fantastic.

violet6

Dollydd--

Thank you for your thoughts on this! You are right, I do need to be more patient...this might be easier with a supportive doc (and my family is tiring of the situation as well--as I mentioned in another post). I think the main dr I've been seeing thinks I'm imagining things at this point, primarily b/c he thinks folks recover from VN within a few weeks normally & at the most within a few months. Thanks to you guys, I know this is not always the case.

I think that the most likely scenario for me is indeed VN on top of a migraine predisposition that is making things harder to recover from, rather than an initial vestibular migraine attack. But now the whole vestibular system/migraine issue seems irritated, which actually makes sense of course.

I am so glad to hear about your own recent improvement--that is truly wonderful! I imagine it must be a thrill to feel like oneself again. Very interesting, too, that you also experienced different symptoms along the way...this neurological stuff is so complex, isn't it? Did your doc ever do an MRI of your inner ear? I'm about to have that just to cover all the bases.

I would indeed love to visit your doc in London! I actually hope to make my way over there one summer in the near future, but hopefully I'll be feeling better by then...

Violet

dollydd

Violet
no, I didn't get an MRI. I did have a couple of CAT scans but that was to look at my sinuses which have been wrecked by the simultaneous acute sinusitis I had with my first vertigo episodes.

I get a lot of comfort knowing that I am now in the hands of people who really do know what is going on - the first two years when I was being passed around ENT, not being confident that they knew what was wrong, were terrible so I understand how upsetting it is not to have a sympathetic dr.
When I had a 6 month check-up on Monday they ran another test which showed that I still have some eye co-ordination issues so they are going to set me up with some customized vrt and they are thinking of putting me forward to participate in a research programme they are running. The test was done in a U-shaped cubicle, looking at a landscape on the curved walls, which they moved at different angles, plus the floor moved. There was several tests, standing still, then still with eyes closed, then the walls moved and finally, walls and floor together. The readout showed that my standing balance is now good, but when my eyes had to cope with the movement, not so good. But each test is done 3 times and what was really interesting is that my performance improved with each test, which proves, I think, that repeated vrt does actually work.

hbep

Hello,

I've also had lightning flashes in my vision - but only once, very briefly. And numerous weird things happen to my hearing, it diminishes or I get very sensitive to sound - this all fits with a migraine dx.

As the other poster said - they do the MRI as routine. I had one looking for the same thing and it showed nothing.

best,

H

__________________
hbep

violet6

H--

Thank you so much for letting me know that you too had experienced these odd things. I'm curious if it will happen again, and I'm also wondering what it would be like if it happened for a longer time or if I was driving--I guess lots of people with migraine & aura deal with that...

Has your situation gotten better with medications? I read some of your earlier posts...your situation (if it's still the case) of VN to MAV sounds similar to mine--your doc's thoughts on this were very interesting to me and explained a lot.

Take care,
Violet

violet6

H--

One more thing...did your hearing issues & light flashes last for brief times or long times? I have a more ongoing sensitivity to loud noises, but the sudden muffled/lack of hearing in one ear was new and thank goodness lasted only a very short time...

Violet

hbep

Hi,

Yes I am VN to MAV, although there's no knowing if it was definitely that or if it's been migraine all along.

The light flashes only ever happened once. The weird hearing stuff happens intermittently. I've never gone deaf in one ear, but I will get a sudden crazy loud burst of tinnitus where my hearing in that ear diminishes for a couple of seconds. There are periods of time when I am slightly hyperacoustic. I also get increased tinnitus when I am very symptomatic.

However I experience a lot of sporadic visual stuff. For example I frequently get blurred vision that last about a minute of two - my vision blurs completely so I can't read etc... I am also currently photophobic 24/7 and have been for about 8 months.

Drugs have definitely helped me. I take a beta blocker, at first it was like a miracle drug - I had a yr when I was 95%. However I had a panic attack ( a massive trigger for me) and thar set me back. I went up on the beta blocker but it hasn't worked as well since. I am now investigating other drugs. I have tried a lot which haven't worked for me. It's a matter of trial and error. If you aren't taking a drug I suggest you do, as if I'm honest I'm not sure there'a a way out of this mess without them. Something needs to break the migraine cycle. Once you have got it under control there is hope of getting off them.

H

__________________
hbep

dollydd

Hi Violet
I had a bright flash only once and within a couple of minutes I was very dizzy, with the spinning coming in waves. At the time the flash occurred I had just moved my head very suddenly to look back over my shoulder and my doc said that was very suggestive of a bppv type episode which can often follow on from vn. That was last November and hasn't happened again.

The sudden dip in hearing, in one ear only, used to happen quite often and could last for some time. As I had such a bad time with the sinusitis I used to think that it was just as much to do with that as the vn. It has now become so rare that I don't even think about it any more, and when it did dip about a month ago it was just for a couple of seconds and then it bounced back to normal. I used to get some metallic ringing in my ears, just for a few seconds at a time, but again that has become so rare I have forgotten about it. I haven't taken any drugs at all, it just seems to have slowly sorted out, but I do my exercises without fail everyday and from what my specialist told me on Monday I am not even to think about stopping at the moment and she isn't seeing me again until December.