Just curious if anyone out there has had this test before, and any feedback on how useful this is. I have this today later this afternoon as a follow up to my other vestibular tests which showed some abnormalities. My total composite score was 41 compared to an age norm score of 70. All this came about from doing a longer training swim which kicked me into my symptoms. The only part of my vestibular test that was deemed normal was the somatosensory part. Everything else was abnormal. Any comments here would really be appreciated. Thanks!
Whow, amazing that. Please don’t think I’m being rude cos I’m not but it’s not often, providing I avoid nuclear physics and other such specialities, that I can read and re-read a beautifully clearly written piece of English, and have absolutely no idea what is being discussed. And all this on the subject of MAV which I’m familiar with and thought I understood. Please can you elucidate if only just to keep me sane. It does seem you’ve been lucky enough to have had extensive hearing testing. ENT gave me an audiogram, is it, but the neuro-otologist who eventually diagnosed me with MAV checked my hearing - with a tuning fork! Honest he did. I was much relieved because for one dreadful moment I thought he was going to ask me to sing! Helen
That sounds rough my friend.
However, it might well just be a bit of trauma that will recover in time.
As you may know from reading my history I shared, for years I thought I’d never walk again with normal balance. I was wrong. I have my balance back and all of the time (and without any medication now).
Let me share this with you: this woman upset her ear when swimming:
NB I’m not for a moment suggesting you have a PLF but it illustrates how easy it is to upset the inner ear. There is no proof this woman had a PLF btw, and she seemed to recover spontaneously in any case and never had a surgical patch done. The whole area of PLF is very contentious. I thought I had one and was offered surgery but declined (partially because of the horrendous failure rates) … so glad I did! It’s got better anyway (if not fully recovered yet) but took ages.
I’m sorry, I will try to give this some context. Ever since my 3rd concussion (whiplash version being the 3rd, 2000) I have had episodes of feeling off balance/brain fog/imbalance after certain activities, like swimming for instance (lap swims). This all came back full force not all that long ago again post swimming laps which led me to the tests I mentioned. Very acute onset by a defined activity. So…good news is that there is evidence of abnormalities. With my test today I am hoping that more information can come forward to help is devising a plan to help me. Sucks in the meantime though.
Really interesting to see this. Also encouraging to hear that you did recover over time. That gives me hope of course! For medications, what did you find as most helpful? I know you mentioned Amatriptyline I think as one that did some good. I take zoloft, some adderall, and also klonopin to make it through right now. Just barely though.
Believe it or not, that was it. I used to suffer hours and hours of crushing nausea and Amitriptyline really sorted that out as well as screen tolerance.
I was very lucky because Amitriptyline was only the second drug I tried and it was so effective for me (but far from eliminated symptoms - just allowed me to get my sanity back!). I was a total zombie without it.
What dosage were you on, and did you take it night due to the sedative nature? How long were you on it before you noticed improvement? You mention screen tolerance…which I have limited amounts of time for this now. Which impacts my work of course. Like most folks, even getting something to improve things a bit would be welcomed.
20mg nocte for 1.5 years:
This PLF thing has me intrigued. Just because all these problems started after my whiplash concussion back in 2000. Sounds like a diagnosis of exclusion to some degree, unless you know of something that leads to finding this. You mentioned you were offered surgery…elaborate as to why. And, can PLF be one of those reoccuring deals where it gets triggered, then settles down to what would be normal. I only ask because swimming has triggered this state for me a few times now.
Because I had suspected PLF after my very minor ear trauma.
Inner ear pressure on its own without a PLF might do that theoretically. That’s something to ask an ENT.
I’m afraid though the natural history of all these things aren’t well known because they can’t cut people up when alive. Lol
VEMP testing is nothing to be worried about. Just some loud beats into your ear. Are you getting cervical or ocular VEMP. I can help you with interpreting the results once you have them. Dr.Hain website goes into a lot of good detail demystifying VEMP.
Thank you for responding. I had my appointment yesterday, and my test results (went through the whole battery) were normal with the exception of some weak up beating nystagmus, and a very low score on the sensory organization test (score of 39). I have been given a VT schedule for a month, 2x a week mainly focusing on adaptation. They mentioned the nerve in the inner ear is something that is hard to test for, but could be behind my situation. Or, something more nuerological in the cervical area. So, with normal test results outside of what I have mentioned, I would curious as to what you think may be going on. Thanks!
Might I suggest you have a read of Dr Hain’s dizziness-and-balance.com website? He has a very detailed article entitled ‘upbeating nystagmus’. See what if anything resonates with you. I’ve regularly read that clever medical bodies can obtain a strong indication of where the problem lies by the direction of the nystagmus but can only assume if they had known more detail they would have told you, the nystagmus is probably making screens difficult for you but then again it’s an indication there’s a vestibular malfunction Anyway.
My tests were pretty ‘meh’ too … but showed a definite loss of HF audio response on the injured side.
Nystagmus could simply vary by sufferer. It just tells me the signals from the Labyrinth are being interpretted incorrectly, or the signals have changed against those expected (and thus firing off the ocular reflex when the brain shouldn’t be). I suspect the issue is likely not to be a catastrophic injury of any kind, but more likely could be an issue with loss of homeostasis of pressure. As multiple doctors have pointed out to me, the inner ear is extremely well protected and embedded in thick bone. A fluid imbalance is probably far more likely than any damage. This would lead to a change in the ears response, especially wrt the opposite ear, confusing the brain. The difference in expected response between the ears is a well known common cause of dizziness. I understand that, unlike the eye (in the case of glaucoma, for example), the fluid pressure even in an upset inner ear never reaches a point at which it does any significant damage and certainly not the loss of neurons. Can imagine you might get more ‘noise’ on the line though! (Hence tinnitus … )
I wouldn’t worry too much and persevere with the prescribed protocol and look forward to things improving with time.
The prognosis for those with physical insults to the inner ear is generally good as many have reported on this site. Recovery within 5 years is supposed to be common. I’m doing extremely well after just 3.5.
If a physical cause is not the case, then prognosis becomes more difficult to determine. However, these things just don’t ‘happen’ … there is clearly a driver somewhere.
It’s too easy to chalk these things up to ‘migraine’ … but if you are happy with that explanation that’s good enough. It’s not like the protocol will change which in any case aims to stabilise and maximise your quality of life as your brain and body get on with resolving whatever has gone awry.
Upward beating nystagmus is a sign of central/brain issue aka migraine. I have strong upward nystagmus compounded by strabismus since birth. Good luck.
Interesting. I guess that could have been a result from my whiplash concussion which is the point in my life when all these oddities started. So…how do you address this, and does any medication help? I always feel like the righ side of my neck is stiff, and when I look upward it causes soreness on that side. That was not there prior to my swimming incident which was the trigger of this mess. Anything else you can share would be appreciated.
Meds help with nystagmus. Venlafaxine has been a great help. As for the neck i massage out trigger points. Cardio helps immensely with the neck. The idea is to reduce overall inflammation in the body by a combination of diet, exercise and meds.
Stiff neck can be a sign of a compromised vestibular system as your brain starts to hold things more steady to compensate for it (its therefore not necessarily the source of the problem, just another symptom).
Dizziness is probably nearly always ears, brain or both.
IS venlafaxine called effexor? I currently take zoloft but no real effect there outside of treating anxiety. My last test of 2 weeks ago stated this: “positional testing showed a weak geotropic nystagmus (stronger head left) with up beating noted intermittently throughtout. This may suggest a central indicator”. So, a central indicator would be what? Also, my composite score was 12/100 which in their terms was “gossly abnormal”. I have been doing VT for a week now with no effect yet. Just thinking something more neurological is going on here. Comments?
Effexor is a brand name
Not addressing your circumstances directly but to point out that the brain is constantly trying to tune up your vestibular system. The way I look at it is if one has instability in one’s vestibular system it will struggle to compensate as there’s a moving target. Call this ‘central’ if one likes but the root cause may not be ‘central’. Push the brain too far (allostatic load) and you end up with migraine. Imho that’s not necessarily the fault of the brain. Perhaps some people have brains which are better at accommodating vestibular ‘noise’ than others but there must be a point at which most healthy brains would struggle: garbage in, garbage out. Perhaps there are some people with definite brain diseases that compromise this process (eg MS?). Imho it’s absolutely unreasonable to blame a central issue without specifically identifying that. But that’s the state of medicine today. YMMV.