Frustrated by Lack of BFS Diagnosis

[Watermelon18]

I've had a lot of typical BFS symptoms since October... twitching, numbness, flushing sensations in feet, cramping, tremors on waking, lots of floaters, blah blah.I had a EMG which was clear and an MRI, which I assume is clear since I haven't heard from the neuro and it was two months ago (follow-up appt not until late June) as well as physical exams which seemed to be okay.I was frustrated by lack of action from my MDs, so about two months ago, I started seeing a chiropractor who diagnosed me with a subluxation in the first vertebrae, where my spine connects to my coconut. I was skeptical but the regular chiro treatments seemed to have really helped with the symptoms. I was going a week at a time without any major twitching or numbness.Then, Sunday night, on the way to an R.E.M. concert, I walked out of the hotel into bright late day light, and experienced a really weird and scary visual disturbance. It was like a football-shaped distortion in my field of vision, clear in the middle, but with wavy lines on its perimeter, like light refracted through a prism or a kaleidescope. Although it appeared on the left side of my field of vision, the distortion was common to both eyes and I could still see it with my eyes shut -- it was not a retinal burn-in type thing. Over twenty minutes, it got bigger and bigger until it distorted only my peripheral vision, before disappearing. This really freaked me out. My wife said it sounded like a migraine aura, but I had no headache and have no history of migraine. Also, in the middle of it, I got a new hotspot buzzing sensation in my left hand, where the thumb meets the palm.Has anyone else had this? Is it just a new variation of BFS hell? Or something more ominous?

 

[coty721]

For me, I get something like that when I get alot of anxiety!

 

[DJH621]

I've had the same thing on and off for years, I don't get the headache either, but I do have frequent headaches, nothing different with the vision thing though (I think I've posted about it). My husband gets it also, with the headache. When mine 1st started (right around the same time my BFS did) I had them a few times per year. Now it's less frequent. I think they're quite common. Best Wishes, Denise

 

[suegirl]

I get the exact same thing. When I was younger I would sometimes get the headache that followed, but in the past several years I get just the visual thing with no headache. After my BSF started last year-January, I got the visual thing about 3 times per month. That lasted until December and I have not had one since. My BSF is still going strong though.

 

[AndyStreams]

man that sounds like a complete migraine aura. I never encourage googling things, because you never know what type of misinformation is out there, but believe me "ocular migraine" is exactly what you got. The fact that it got bigger and bigger and disappeared in about 20 minutes is super typical of these things. I get migraine auras and get the headache after; they're brutal! But I have heard of tons of people that get them with no headache. I wouldn't worry, but it also wouldn't hurt to mention it to your doctor at some point. A million things can set off migraines, from anxiety to certain types of food or certain lighting conditions. Bottom line is you're fine; a lot of people get these. Though it must have been scary as f*@# if you had never gotten one before. Oh the irony of getting visual problems on the way to an R.E.M. show...

 

[cindyandco]

I've never had one of these, but hubbie does. It's the warning that the headache is coming. He actually loses sight when this occurs. Usually if he can get to sleep in a cool quiet room before the pain comes, he can avoid the headache. Gosh, can't our bodies do the weirdest stuff.Cindy

 

[dell171]

Yup, with 100% certainty, you had an "ocular migraine". I never had one in my life, that is, UNTIL this BFS crap started about 18 months ago. Now, like clockwork, I get an ocular migraine exactly 2 hours after any particularly hard workout. They always last exactly 30 minutes, followed by a headache.

 

[irrationallyminded]

I have this about three times a year, with headaches-as-hell afterwards, since I was 12 years old.It's just migraine with visual aura. Scary, but harmless...When it appears, I usually take some paracetamol, and go to bed for one hour. Then I am good again...However, a week before and a week after such an "event" I have a lot of strange feelings, like difficults while reading etc.Google for "Migraine Aura Foundation" and stroll around on their website...qwer

 

[CautiousExplorer]

If it appears and dissapears in less then a day, its probaly something like migraine.. however, if it's constantly there for a few days, you probaly have optic neuritis and you should see a doctor.. especially if you also got BFS symptoms, since a combination of both can be a sign of MS.

 

[yzSassyDaff]

Nervousguy,We come on here for resurrance, we don't come on here to be told that we have signs of MS etc!!!Optic Neuritis has a lot of other symptoms other then flashing in vision!! I have had this many times and it comes and goes and has done for months!! I have seen an eye doctor about this and they don't see anything there! With Optic Neuritis there is also pain or blurring vision etc.

 

[RipleyGates]

I have had this Twice in my life It's a type of migraine my eye doctor diagnosed it as an "Ocullar Seclusion, With aura."

 

[TatsuDragon15]

I never had ocular migraine until this second pregnancy. I don't know if the pregnancy triggered it or what. The first time I got it it's like a constant bright light at whatever i'm lookin at and no headache. But I get them once every 3 weeks now or once every 5 months and now it's followed by eye pain and head pain. I just got one today. I notice I get it when I don't get enough sleep.

 

[AllGoodHere]

I've had this happen only a few times - it is very strange - but have a friend who gets them frequently. She swears that by excluding certain foods she can go migraine free and there is some research to back that up. A few things to think about - did you rise quickly, could your blood sugar have been low (i.e. from over-indulging in sweets etc hours beforehand) and was your fluid intake adequate? These & some foods can help to bring on these particular symptoms and other migraines. There is a 'migraine diet' you may want to look up and see if you had many of the no-nos before your symptoms appeared. Good luck and don't worry. If it happens a lot you may want to see about a diet change and talk to your GP.

 

[CosmicVisitor]

This is not BFS related.. it's an optical migraine most likely..... I have major burn in/after vision.. if I read a page of words I see lines like venetian blinds on the wall for a couple of minutes afterward.. I also get tracers.. like if I see a cars tail lights go by at night they streak.. it's like an acid trip i suppose.. i never did drugs so can't go there.. being that it's in both eyes is a good thing actually.. if it were one eye, it could be an emergency like a detaching retina which could leave you blind in that eye.. thats what they thought I had at first cause I thought it was my left side only.. it was just the lighting on that sid of the room.. duhh !