Update / feeling very strange

OK, it’s been a few days since I’ve posted, so here’s what’s going on.

This is my concern – my condition has changed in the last few days. I still have the same old “visual vertigo” (visual sensitivity, lightheadedness, or whatever), but now a new, quite disturbing experience – I have a near-constant feeling like my head and/or body are constantly rocking, up and down. You ever lie on a bed, close your eyes, and as you breathe in and out, you feel like your whole body is floating up and down as you inhale and exhale? Or on a ship in rocky waters where your whole body feels like a trampoline jumper in super-slow motion?

That’s how I feel, or at least as near as I can describe. Like my head (and, at times, whole body) is literally floating upward and then down again, every few seconds. My usual go-to solutions (lie down, or sit in a dark room) don’t work completely, as they did with just the visual vertigo symptom. I swear I feel like I’m constantly bobbing up and down, and very unsettling, and also kind of frightening and/or worrisome … this particular thing (vertical “rocking”) is a NEW experience for me. Any chance this is Effexor? Or the exercise? Or the MAV getting gradually worse?

I’m on Effexor. Non-XR version. Been on it for maybe 2.5 weeks. As of last couple of days = currently doing 6.25 mg at 9 a.m., 6.25 more at 3 p.m., then 18.75 mg at 9 p.m. I understand the half-life is about 6 hours, so I’ve been trying to work up in increments.

Anyway, the last week and a half or so – especially the last ~4 days – I’ve tried being more active. More so than most any time to date (since this began). Going in to the office for a few hours (had one of the lights removed); going out to dinner or lunch occasionally at a restaurant when it’s not too busy; visiting my friend at her small acting studio; mowing the lawn; etc.

Most notably (I think), I’ve begun doing some exercising. At our local health club there’s a 4’6"-deep “therapeutic” pool, which is kept at about 90 degrees (quite warm), and it’s never busy. I’ve gone 3 of the last 4 days, an hour at a time, to just quietly (it’s never busy) walk laps back and forth. I practice walking forward, backward, side-to-side, focusing on different focal points, using different head positions, etc., to make it more varied. Oddly, I seem to do extremely well in the pool – my brain doesn’t get “confused” or feel uncomfortable, etc.

Sorry, but really need some input here…

Hi George,

This near constant rocking sensation is how the vertigo is for me (thankfully for now seems to have burnt out or been drugged out, for about 95% of the time) and I believe for a lot of people with MAV.

For me this is how it is. Whether sitting or standing it feels like I’m about to fall over (usually forward and to the left side). This can happen when I’m sitting perfectly still. When walking it is like being on a boat, or a trampoline or one of those crazy “amusement park” (not amusing at all for migraineurs!) things where the floor falls away and moves up and down, beneath you. The ground can feel spongy or like creaky floorboards and it can feel completely “external”, like an earth tremor, to the extent that I’ve asked people if they’ve felt it too (did the earth move for you too? boom tish). It is VERY disorienting and uncomfortable.

I haven’t really had the floating thing as you describe. That sounds most unpleasant.

I can offer no suggestions as to why this has come on now. Perhaps the meds or the exercise have uspet the fat kid and he’s taken a dive in your pool. Who can say? My default position nowadays is migraine is weird. Sometimes you know what sets it off, sometimes you don’t.

Anyways, as one who knows how AWFUL this rocking vertigo is I really hope it clears up for you soon George.

Victoria

Thanks Victoria.

I’ve been going on the whole idea of trying to at least try to live my life – at least such that I’m not just staying at home each day and not doing anything – and psychologically it feels good, but physically it feels like I’ve gotten worse, and I’m not sure what to blame it on.

Dr. Cherchi told me my MAV may have “progressed” (worsened) slightly, because on my first visit, I didn’t complain of light sensitivity, but I did on visit #2.

It could be I overdid it the last few days (some doctor or another said exerting yourself will probably only just wear you out if you’re an MAV’er), or it could be Effexor (MAVLisa said it made her very woozy), or it could be the MAV itself.

Continued input from others would be most appreciated, if anyone has anything to add.

Hi again George,

In my experience exercise can definitely make things worse. Gentle exercise is OK but exertion is bad. I like to do weight training and if I do it too hard I can pay for it later. In fact too much of anything (or too little sleep) I think can also set things off. At the risk of sounding new agey I find “balance” is good. In the old days we’d have said “everything in moderation”. Same same.

I agree that psychologically you have to try and live your life as fully as possible but I also think when things are going really badly you shoudln’t push yourself. Take it easy and be easy on yourself as well.

Good luck,
Victoria

Hi George,
In my experience Mav can morph over the years sometimes getting better and sometimes worse.
Physical therapy or certain exercises often makes people worse with mav until they reach some compensation, and others will feel better for it.
I am a rocking, like on a boat with mav,
I can have anything form a feeling falling backwards endlessly or a figure 8 swirling and bouncing.
Victoria’s symptoms sound similar to mine.
The Effexor has help not hindered my progress.
And from what I’ve been told by my neuro and other Drs yes it can progress, before getting better.
I’m sorry your feeling so bad. :frowning:
Jen

Hi George,

Exercise can also make me worse - although as long as I don’t do heavy cardio (major exertion, running, a cardio class) generally I am ok, unless I am already very symptomatic. I have swum with no problems and also used weights, a stationary bike and a rowing machine. Oh, I forgot to say, I also can’t do anything that involves following an object with my eyes - badminton is out.

I can’t lie - in my experience (apart from amitriptyline) any serotonin altering drugs have increased my vertigo. In fact apart from at the beginning for the last few years I generally haven’t experienced much vertigo ( a bit intermittently, but not much) and mainly experience severe lightheadness and general dizziness. When I first got ill I had been dizzy for eight months, I was then given notriptyline and after being on it a short while I got vertigo - a constant sensation of being on a cruise liner, that was constant when still. I took 5HTP also known to enhance serotonin maybe a year ago and the vertigo kicked off again and stopped when I stopped it.

With effexor I started to notice I was slightly more vertiginous when on it - I became more motion sensitive - although it mainly ramped up the lightheadedness and the brain fog. The dizziness got worse as I titrated up. As I titrated down the vertigo hit big time - I had a lot of feelings of being pushed upwards or pulled round to the left, I also got motion induced vertigo. It was fairly severe and like nothing I’d had in years. I still don’t know and probably never will know if this was withdrawal or if the effexor had kicked off a much bigger and more severe migraine cycle.

It’s difficult to say as sometimes if you change your routine and add an additional element that can cause the symptoms to worsen - but the same is true if you take a new drug. Namely you have two factors which makes it hard to know what is doing this. If I went an ran on a treadmill today it could well ramp up my symptoms. Then again, the literature states that in some people effexor makes migraine worse not better. As with all these drugs it’s hit and miss - some help certain people and make others worse.

By the way it’s five and half weeks since I’ve been off the effexor - the vertigo has almost completely ceased. I am still dizzier than I was before I took it, but things are improving. So if it does turn out to be the effexor the vertigo aspect is by no means irreversible and should die down if you come off it, although it doesn’t happen instantly.

H

Another update for today…

When I sit down, my head and/or body get a rocking sensation.

When I stand, similar thing happens, except the “pulsing” / rocking feels like it begins in the lower or mid stomach and moves like a shockwave through the rest of the body.

But I draw the line at dark-room hallucinations. When I sit in the bathroom (with the lights out) I start to imagine the near-pitch-black wall “pulsing,” then hallucinate that it’s moving toward me.

I’m getting myself back in to Hain/Cherchi. Thursday afternoon.

By the way, anyone here with MAV ever have an EEG, and if so, was it (the result) at all unusual?

Hi. I have gone down that path… wondering if what I have is actually a seizure disorder. In addition to the dizziness I have myoclonus (involuntary movements) which I developed about six weeks after first becomming dizzy. Myoclonus can sometimes be caused by seizures. I have had an EEG. I was told that EEG results are often combined with clinical presentation (patients signs/symptoms) to determine normal / abnormal results. I was told my EEG was not abnomal enough to diagnosis seizures. Another neurologist went one step further and ordered a 2 day EEG (which was not fun). I had to wear a bunch of electrodes glued to my head for 48 hours and keep a diary of my symptoms. I was told to go about my usual life. (I even went to Walmart with the head gear and a scarf). Results were again not normal - I don’t remember exactly… The neurologist said that at the time the risk of taking anti-seizure drugs outweighed what he thought might be any potential benefit. He doesn’t think my dizziness is seizure related. I sometimes wonder, though. Kristen

Ah the full body portable EEG - what fun! I had that years ago, for 24 hours. At the time I was teaching English as a Second Language - was interesting trying to explain that to a class full of new arrivals! I had some tachycardia show up which was put down to a “virus” in the absence of anything else. My policy now is to for about 90% of the times I’ve been told I had a virus to substitute the word “migraine” for “virus”. :slight_smile:

Victoria

I had a 24-hour monitor, no seizure activity
Then an EEG during a full-blown migraine, myoclonus, head nodding, no seizure activity
After speaking to the EEG technisian performing the test and the neuro, she said it’s common for epileptic activity not to show up.
Another girl I know had to have the implants directly placed inside her scull for the activity to be eventually picked up, it appears the seizure was too deep inside the brain to be picked up any other way.
So I’m skeptical about EEG’s.
My father has epilepsy.

Jen.