Just stumbled upon this page on Dr Hain’s website. I saw there was an older post from 2013. Is the take-away that visual vertigo is symptom of Vestibular Migraine (or Labryrinthis for that matter), or an entirely separate diagnosis that is more psychiatric rather than Neurological…and thus maybe requires a different course of treatment?
I ask because the core of my symptoms are 70% visually triggered and visually experienced, with only minor ear fullness, minor balance disturbances, etc. I’m intrigued by his concept of “optic flow” because it really seems to sum up issues I have with too much stimulation in my peripheral vision causing problems, like in pedestrian concourses in the subway, or walking past a long fence with sunlight flickering through it.
IMHO, very closely related. Without Amitriptyline I get this pretty bad, especially in the Hypermarket or crowded mall, or in front of the laptop.
Don’t forget the eye is virtually hard wired to the balance part of the ear. If the ear is upset and the signals it is sending are no longer the same when this reflex was originally learned, the only non-medical way of dealing with it is to commit yourself to unfettered VRT and/or general exercise and to expose yourself however uncomfortable to the very stimuli that make you uncomfortable. However, if this precipitates a migraine you are out of luck because I suspect that will prevent you from compensating.
One of the few people on here who’s reported themselves as fully recovered did so without taking any meds and just committed themselves bravely to as much exercise as possible and to heck with the discomfort. That says a lot!
Thats why taking vestibular suppressants is a bit of a catch 22, they are a quick fix but can hinder compensation. I try to take as little Amitriptyline as possible, but I’m aware its covering up some cracks. Then again if the ear condition is varying a lot, then perphaps its worth waiting until you feel the ear has settled down and not changing and then perphaps titrate down. No idea how you pick this moment!
If your ear trouble is very episodic then maybe the no meds route is the best (and just keep meds for the acute episodes)
But if “visual vertigo” is purely psychological, then taking meds wouldn’t really be suppressing anything physical, right?When these websites talk about visual vertigo, are they presenting it as something similar to chronic subjective dizziness, with no underlying cause, other than the “conditioning” from a previous but no longer active virus or inner ear issue?
Well that’s the thing, I believe that Amitriptyline is suppressing the eye-inner ear reflex. The other day I titrated down just 5mg because I was feeling so good and I felt the same eye-strain-flicky feeling coming back. That mechanism going wrong is probably responsible for a whole host of psychological symptoms.
I think a lot of these conditions are based a set of the same systems and sensors and one name or other is given for presentations that highlight one particular symptom out of many symptoms you can get in the wonderful world of vestibular ailments. I believe they are all somehow related.
Some meds don’t suppress this reflex, but the tricyclics do. I was actually wondering if it would be better to try another med that exposed me to more of the uncompensated for signals and that might be a more sensible route to recovery, but because Ami improved my quality of life so much I’m fearful to try.
It’s the visual issues that bother me, even when all other symptoms have subsided. I hadn’t thought nort had helped at all in that respect where it had helped with everything else. However when I think back it must have, as I had awful flickering, jumpy vision which subsided after a couple of months on the medication. Doctor S says i still have visual issues because my brain simply isn’t trusting the information it’s receiving from the eyes. Where I avert my eyes, I’ve been told to try to look to retrain the brain. My vision is a lot better than it was but still lingers on.
Hey Scott, good to hear from you.
Maybe you just need some time off the Nort for the visual thing to improve?
Its my opinion that you are holding off on that piece of compensation until you titrate of the meds.
So long as you are not getting migraines, then I’d say try and push yourself, lots of exercise and annoying stimuli - you may find it get easier pretty fast?
Another strategy might be to go back on Nort at very low dose and then come off again after a while? Spinninggirl uses that strategy. I suspect that her neuro is trying to find the spot where her condition stabilises and then the brain just completes the job with compensation. Then you are finally free of the meds!
That’s interesting, from reading stuff on this forum and talking to my neurologist, I thought the amytriptaline serves a therapeutic purpose–to retrain your brain and reduce sensitivity of neural pathways; rather a mask for symptoms?
I feel like I’ve been pushing myself to do all the activities I normally do on a daily basis, despite the imbalance I constantly feel. I don’t think that staying active over the past 4 months has reduced my dizzy/imbalance symptoms in any noticeable way.
It definitely calms things down, that’s true. I don’t have a very obvious imbalance anymore (but BOY did I have one at one point and it seemed to change depending on the day!) but I think that’s more down to me adapting or the condition getting a bit better.
Well that’s where I am at the moment- titrating down. I’ve gone from 40 mg in January and just moved to 20 mg. It hit me hard on the way up and I wonder if I’m rushing it a bit coming down. Withdrawal from nortriptyline can cause anxiety and all sorts, I think I’m a bit twitchy and over analysing every little sensation and it’s ratcheting up the anxiety levels and in turn the visual symptoms. The psychological aspect you mentioned is interesting. I’ll crack on with coming off the meds unless I relapse too much. I’ve got a lot going on so that won’t be helping.
Well I believe ami and nortiptyline are very closely related, the most just being a newer version, and my doctor says it’s like “putting a plaster on the brain”. So it’s just giving the brain a bit of space to heal underneath i.e masking the symptoms perhaps? The science behind it I really don’t know though!
Keep us posted Scott, but there’s no shame in slowing it down a bit … I find 20mg of Ami (dose equivalent) kills all the visual vertigo for me. Or at least it controlled enough for me to get my life back. Neuro wanted me to go higher but I felt it was enough to help me get back to a mostly normal existence.
I’m thinking there’s something in going on your own instincts actually. The doctor told me to start reducing the meds in January and hopefully be off the them by the time I see him in June. I wasn’t sure I was ready to start reducing at that point but I went ahead anyway. If I’m off them by the time I see him and ok he’ll talk me through introducing foods again. I’ve got red wine and cheese calling so rushing, despite better judgement telling me to hold off!! I think I’ll stick at 20 until I’m sure I’ve settled into it for a while.
Seems like Scottl’s doctor also agrees that the Ami/Nort is more of therapy than simply a mask?
Scottl how long were you on the Nort before you started titrating down?
Well, I’m certainly open to the concept that if your brain escalates to a migraine, you are unable to compensate, but if you calm things a little, despite it being a little bit of a suppressant, you are still learning. So perhaps its both! (at the right dose). My condition has definitely improved over time, and that could be a combo of the underlying condition getting better and me catching up with the vestibular delta.
I am the first to say that I really don’t understand the mechanism of this disease but I do know that for the 11 years it went untreated I tried to live as normal a life as possible, not deliberately avoiding doing anything and my brain didn’t compensate but went into meltdown so this seems to indicate that the brain needs the meds to initially calm it down before healing can take place. I have no idea what the initial assault may have been, but clearly, using logic, something happened that needed treatment to encourage healing, hence why meds work. Maybe those lucky people who can heal without meds have less healing to do or have more efficient healing systems? I don’t know, but I don’t think the meds are a band aid, I think they give the brain the respite it needs, as is the case in head injuries when patients are put in a medical coma for the same reason. Just my take on the situation!
Well by healing I suspect it’s got a lot to do with some form of change to the vestibular system. If it changes too much and too often the brain goes into meltdown as you put it. The meds definitely help prevent that well and then allows the compensation process to take place. Despite being diagnosed MAV by Neurologist she also put 'has experienced a decompensation ’ on her report after my first major relapse from recovering fully (or so I thought.) from my initial trauma. I suspect there may be a chronic condition whereby for a while at least the vestibular system is unstable expressed by periodic changes in its properties. Only when this process ‘burns out’ will the condition completely resolve. If it doesn’t we will be periodically relearning when a change occurs. So long as the changes diminish in significance I’m fine with that! Lol
Earlier this year I had three weeks of virtual normality. Started feel completely normal. Then a relapse occurred and I’ve had other small ones since.
The good news is that the vestibular system is apparently very recoverable to ‘damage’. Hearing less so. But I suspect being MAVers the hearing part is less in jeopardy. We hope.
The one thing that is clear to me is that REGULAR EXERCISE ESPECIALLY WALKING is ABSOLUTELY KEY to recovery. And even better the worse the environment. Go to the mall. Go to the hypermarket. If it’s a challenge that tells you you need to work on it. The more you work on it the less your symptoms will be. Obviously if any of this gives you a migraine that’s counter productive right there but this is assuming your meds and any diet regime are preventing that.
Unfortunately a relapse may mess up some of the good work and you have to climb back up again. But DO IT, DONT EVER STOP!!
On that note I did some Tai Chi with my wife this morning. Despite being slightly groggy and mildly nauseous!
I started it in July 2015. Last July I got to 40mg which got me to a really good place. He told me to start reducing in January which I did. Originally he told me once I got to a good place I’d be on a maintenance dose for 9-12 months but he has me reduce sooner. We’ll see how it goes.
Scott just thinking about this. Do you know VRT exercises, especially the one where you fix gaze and swivel head? Maybe pick up those again as you titrate down to speed up compensation wrt eyes?