Persistent aura without infarction
Hello, my dears,
I have suffered from persistent aura since I was 19, or as it is now called in ichd-3, persistent aura without infarction.
At 19, the first aura lasted about 3/4 of a year. I didn't learn what that was until many years later. Many people think of visual phenomena when they think of auras, and here too I first had to learn that this is just the most well-known form of an aura. If it hits me, I usually have several persistent auras at once.
These include: permanent dizziness, diplopia, nausea, blurred vision, tinnitus, increased visual snow, depersonalization, derealization - I'm sure I could think of more.
What interests me, since there is so little to be found about it and it is also described as "rare but well documented" in the diagnostic criteria, have you experienced something like this? How many of ME are out there and what are your symptoms? I have found some reports of persistent vestibular aura lasting one to 1 1/2 years. But I've been stuck on the last one since early 2016.
,
I can tell you you're not alone in this frustrating experience. As you mentioned "rare but well documented" doesn't really help much does it? An answer on how to treat it would be terrific. I found a few things on this topic that may be of interest; https://migraine.com/stories/finally-diagnosed
https://migraine.com/blog/meet-migraine-super-hero-punk-rocker-persistent-migraine-aura.
Has the doctor given you any insight? You're probably seen me mention this before and forgive me if you've told me this already. Seeing a doctor who is an expert in treating migraine and headache disease can have a huge impact in our care.
How are you doing today? Please let me know how else I can help - we're here for you.
Nancy Harris Bonk, Patient Advocate/Moderator Migraine.com TeamThank you Nancy,
I searched the forum for it, but couldn't find this entry. What community member 4242 wrote in response brought tears to my eyes. The interesting thing is that it actually never goes away completely. As 4242 wrote, "I can be 95% not present in the moment..." - That was so long ago for me, the last time was before autumn 2005.
"Has the doctor given you any insight?"
My on-site neurologist at least knew of the phenomenon and suspected it. All previous neurologists, I can't remember the number, weren't even able to make the correct diagnosis.
In the meantime, however, I also have a migraine specialist and we have been working together for a good 3 years now. It may take a while... jokes aside, so far I've had a lot of side effects and no success. But this is another story. Thanks for the link, I wasn't expecting a response so quickly.Thanks!
Hello Nancy,
me again. I didn't even see the 2nd link with the punk rocker. Had another attack yesterday and my concentration is totally in the bucket right now.
That's so funny. I played drums for many years. I can remember a time in the late 90's when I couldn't keep the beat for over 1 1/2 years. Imagine that and you can't explain why your favorite hobby is going down the drain. Going on stage as the clock on a bad day is pure stress. After more than 25 years of stage experience, it's been a long time since I made any music. At least I can listen to music again on better days. But only since this persistent phase slowly subsides tormentingly.Thanks again!
I sing and play piano, but I have horrible performance anxiety, so mostly it's just for fun at home. 😀 -Melissa, migraine.com team
Hello Melissa,I don't want to full text it with some OT now, but it fits in here a little bit.
Of course, up until my psychotic depression in 2018, I always had stage fright.
I used the following simple trick. Who knows you, who will remember you tomorrow and in 5 hours at the latest you'll be home under your covers anyway!?
Has worked every time. And then just out and through!
It's different since the depression, I have to motivate myself much longer, even for much smaller activities. Until now I always thought I had no psyche at all.^^
