Do you have visual symptoms?

I have all of this too. I have had it since this all began for me in 2002. Fun times :confused:

Visual Vertigo (ā€˜supermarket syndromeā€™ amongst other things) is supposed to be because the brain is over reliant on vision because it doesnā€™t trust the signals it receives from ears, etc. I suppose all the visual problems experienced are all illusions created as a result of the migraine brainā€™s oversensitivity not that that makes them any the less disturbing. As the migraine specialist neurologist I saw said when I walked into her office on the darkest, wettest winter day wearing a hat and 2 pairs of glasses. ā€˜Itā€™s all a bit ā€˜hyperā€™! Master of Understatement, that one. Still apart from that, she was otherwise helpful.

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I had the same problem where I felt visually impaired after a getting a botox for wrinkles. I really wanted my wrinkles to vanish so I had done this and it led to many problems.

Update

Saw the Neuro-ophthalmologist today. He repeated all the tests my regular optometrist did plus added one that seriously made me hope not to have a seizure. Instant migraine, which I get to keep since Iā€™m already over my allocated rescue meds for the week.

Upshot - itā€™s neurological rather than optical, annoying but probably harmless. He suggested I might want to swap out my beta blocker for the calcium channel blocker verapimil. The side effects of that include rapid weight gain. Iā€™ll stick with VRT and my current med regime and live with the rest.

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Thanks for sharing that. Very interesting to me. When I first started this long journey that eventually lead to MAV my first option was down the eyes route. Tried Vision Training, then at opticianā€™s suggestion saw lots of opthalmology consultants and surgeons, all of whom referred me back to ENT. Not your eyes they said. Every last one of them.

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Emily, what was that test? Iā€™m curious.

And I guess itā€™s good news that he didnā€™t find anything wrong, but disappointing (Iā€™m sure) that he didnā€™t find the smoking gun. I think we all wish that someone would just find SOMETHING to explain what is wrong with us. :slight_smile:

Well, fortunately I wasnā€™t expecting anything to come of it. I hit my deductible already, so I was checking a box my regular neurologist wanted checked. The uneven pupils and plethora of crazy visual issues freak her out. Iā€™d done enough research going in to know my options. Iā€™d already decided not to treat it unless he came up with something unexpected. In my mind, all this is visual tinnitus. Drives you crazy if you let it, so donā€™t let it.

The test was one of those stare at a lighted star in a dark box things. The bad bit was that the background flashed, pulsed and moved up and down. If Iā€™d done that test a couple of months ago I would have thrown up immediately and needed a ride home. As it was it took 5 minutes for my vision to come back and the room to stop moving. Then they marooned me under fluorescent lights for 45 minutes. The neurologist was wearing a checkered shirt and cologne. He dilated my eyes. It took at least 10 minutes to stop seeing his flashlight patterns. Iā€™m sure he said a lot of interesting stuff. I missed most of it. Sat in the lobby for an hour before I could walk back to the car.

Both my atlas and pelvis were displaced all weekend. I had to pull it together enough to get to the chiropractor to bang all that back in place. Had a migraine most of the day. My teeth hurt. I gave up and went to bed early. Woke up sore, but functional. Off to work.

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Like that, most neatly put. All a sign of the brainā€™s hypersensitivity. Bronstein called Visual Vertigo ā€™ ā€˜visually induced vertiginous symptomsā€™. Most MAVer sufferers could probably come up with far more descriptive phrases. They are certainly much more than a nuisance!

Iā€™ve been getting little black floating dots in my vision since this all started. They tend to get worse when Iā€™m experiencing or am about to experience heavy migraine symptoms

I also used to get severe room tilting, which was very troublesome. Itā€™s subsided in recent years, but I would literally see the room tilting on an angle. I could never tell if a room had right angles because everything would tilt every which way. That period of visual symptoms really sucked

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My wife says i am a walking leveling toolā€¦i can tell subtle slopes in a house, undulations in the floor. I know what you mean with tilting, i sit sometimes thinking i am gonna slide away.

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My acupuncturist asked why Iā€™m always on the left side of the table. Because Iā€™m just sure the right side is downhill.

I had typical pre headache aura which started as blind spot in center of vision, working its way out to a crescent shape in periphery of vision, over abt 20min. This once or twice every 2-3yrs. Then, in early 40s, had prolonged auras only, rare headaches (aura without migraine). One episode of complete blurred vision in one eye for 6 hrs. Complete workup, and was deemed migraine. Since MAV, Iā€™ve had FAR less visual scotoma, but way more sensitivity to fluorescent light. With really bad disequilibrium/dizziness flares (recently), Iā€™ve had the very disturbing symptom of short bouts of complete wavy vision, like looking underwater or radiating heat coming off a hot road. I was convinced that was TIA, but Neuro ruled out with MRI. Iā€™ve never had snow vision. For me, after hitting age 45, the ear symptoms seemed to replace the visual ones for the most part. Fluctuating high pitch tinnitus, crazy sudden ear sucking in feeling, temple sucking in, sensitivity to noise, quick sharp stabbing inner ear pain, short bursts of ā€œhelicopterā€ noise in ear. Ughā€¦ I wish they could figure this all out!!

So youā€™re a human spirit level, eh.

Know exactly what you mean but surely ALL these things are signs of oversensitivity of the brain. The brain is ā€˜justā€™ overreacting to signals it gets which it would just deal with without you even noticing IF it was working normally. Itā€™s gone ā€˜hyperā€™, again. Itā€™s exacerbating everything. Happens to me. Sit me on a tubular chair. They vibrate everso slightly with any slight movement. If I sit in a stationery car and the dog, sitting in the back pants, here I go again. I can ā€˜feelā€™ the fuel going into the tank sitting in the petrol station. All those and, on a bad day and pre-meds on any day since MAV started, and I feel like Iā€™m a boat out in a Force 7 gale. Iā€™ve known it take days to stop!

Get similar sensitivity with my feet and have many times wondered if the 6 months sustained and gruelling VRT I did in 2015 did make me over-reliant on my feet for balance. It wouldnā€™t surprise me. I only have to put on a different pair of shoes and the whole world can feel different. A narrower foot base.

Same applies to light sensitivity. Iā€™ll tell you the sunā€™s coming out or itā€™s going to rain half an hour before anybody else notices and Iā€™m indoors doing this. Just the subtle change in light is so much more noticeable when my MAV is ā€˜wound upā€™. The sensitivity varies depending how much the MAV is ā€˜wound upā€™. Itā€™s quite fascinating really for me probably because With this increased sensitivity Combined with the fact that I have a congenital eye condition, Iā€™m actualy now able to see some things Iā€™ve never seen before in my whole life. Until MAV believe it or not, my SO doesnā€™t I donā€™t think, I see the reflected light coming off the windscreen of a stationary car in bright sunshine. Iā€™ve also noticed a slope on a road I can see if my window thatā€¦ er, never used to be there,ā€¦ and I lived in this house for decades. Never really thought about it til now but, surprise, surprise SOMETHING good or at least something possibly useful came out of MAV!

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Not sure if this is side effects to new medication I just started or more MAV craziness. My vision has been so weird lately, looks super clear, bright and in HD, but also hard to focus at the same time and it hurts my eyes. I almost feel cross eyed looking around the room, but I know Iā€™m not. Like Iā€™m wearing contact lenses that are too strong all the time. Iā€™m also super sensitive to light and when I look at an object in the distance, it makes me feel sick and dizzy. For example, the feeling you get when gazing up at a tall building or looking out over the edge of a cliff, I have that feeling most of the time. Anyone else experience this? Also the meds I just started are topamax and Effexor

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Well Max, that sounds really familiar. Though, I had that stuff before, during and after both Topomax and Effexor. Youā€™re awfully brave to try those two heavy hitter drugs at the same time. Personally, having experienced and eventually quit both, Iā€™d try them one at a time. The side effects are brutal sometimes and itā€™s nice to know when one thing or the other is working so you can perhaps choose between them or better adjust the doses, timing, etc.

Theraspecs, Meclizine and a hat got me through a lot of that. Not that Iā€™m done with any of it, but it is milder and more tolerable than it used to be. Iā€™d go low and slow on those meds and maybe try getting to a therapeutic dose of one before adding the other. Both are powerful psychotropics.

Hey Emily, glad to hear Iā€™m not alone. And an awesome read about your hiking journey btw. What an inspiration! My journey was halfway around my front yard today lol. So my neuro put me on topamax a little over a week ago but he said it could take up to 3 months to make any difference. Considering how miserable Iā€™ve been, he suggested we add Effexor into the mix as it could work sooner. He even mentioned how I shouldnā€™t experience many side effects as the migraine doses are lower than those for seizure and depression (which I thought was odd because tons of people still have side effects from the low doses). Like you said the negative is that now I will be on two heavy meds and wonā€™t really know which one is working for me, but Iā€™m kinda desperate and if I start feeling better hopefully I wonā€™t care. Did you stop topa and Effexor because of side effects or because they didnā€™t work for you ?

Topomax made me look and feel like I was rapidly dying of radiation poisoning at the lower than clinical dose. And it can permanently lower your IQ. Do a search here. Take a good look at @zoologyā€™s long thread. I took it for less than a month last year and have permanent nerve damage in my dominant hand. That said, a lot of people seem to like the stuff. I categorize it as a neurotoxin at any dose. We MAVericks are extremely med sensitive and respond strongly to mini doses. Most neurologists donā€™t know that.

Effexor worked great, until it didnā€™t.

So Effexor worked for your visual symptoms for a while? What do you take now?

Effexor lessened but did not stop my visual symptoms. Iā€™m on a sub-clinical for MAV dose of propranolol and a homeopathic medicine with a fancy name thatā€™s actually just nitroglycerin. Iā€™m sort of on a MAV med break. Side effects are something that never ends for me. I need a detox. When I crash into baseline, Iā€™ll try something new, preferably without the weight gain, nightmares and suicidal thoughts. Iā€™m very med sensitive.