Hello I have vng in 2016 and was told I have vm plus bilateral vestibular hypofunction. From them I have seen a diffrent docter and had vhit, Rotary chair,and vemp which were all normal. They sed I do not have any issues with my inner ears so I do not have bilateral vestibular hypofunction. I have spoken to a VRT specialist today who sed my symptoms suggest bilateral hypofunction as vm cannot be 24/7.im quiet confused as to if I have inner ear damage or not. He sed the only way forward is VRT
Welcome to the group, as you are finding out, vestibular disorders are tough to diagnose and treat as the science isnt there yet. Typically bilateral issues are detected on caloric tests, I’ve have them done a few times to confirm what the test shows. As for VM, it can very easily be 24/7 or chronic. If you havent yet, find a good neuro-otologist in your area as they are much better with this stuff then a standard neurologist or ent. Browse the stickys and past topics on the board and you will find a lot of people at one point or another had VM 24/7.
Veena has been with us for a while
So the vemp wouldn’t show inner ear damage? The neurologist I saw sed that vemp was normal so can’t have inner ear damage. It’s all so confusing as they all say diffrent things
I would say one thing: I suspect people talk about ‘damage’ to the inner ear far too much. There is much that can go wrong with the inner ear without any lasting damage. The fluid balance in the inner ear is extremely finely balanced. If this goes ‘out’ then it would give you symptoms. The word ‘damage’ is not appropriate in such circumstances. Yes, you can get hypofunction but it’s not because it’s ‘damaged’ I suspect. ‘Damage’ is a bit of a loose term to describe worse response and I don’t think it’s very good for one’s anxiety level to think about it in that way.
I was coming to terms with diagnosis of vm. Now this man has made me question things too much which has defo caused more anxiety. He pretty much sed vm is non existant
So, you saw a VRT specialist who said VRT is the only way forward… seems your VRT specialist did not want to admit that VRT is only useful in a smaller portion of MAV patients. Seems he / she was a bit self serving and since they are not medical doctors, I would not put merit into the suggestion. Absolutely my opinion only! I was blessed to have months on VRT with an absolutely amazing lady, who once I got the MAV diagnosis, excused herself from my treatment, since her experience and education told her that VRT does not help MAV patients until they are well medicated or otherwise controlled. I also would like to remind that your differing diagnosis’ are not uncommon. My caloric test reported that I have 78% loss of Vestibular function in my right ear. When my migraine specialist read the report, he said “I can see how that could have been misread, but you conclusively have Vestibular Migraine”. Have you seen an Otoneurologist yet? They look at the “whole” picture moreso than ENTs or Neurologists. Keep being your own best advocate and searching out an answer you feel confident in. You know your body and symptoms better than anyone, no matter their pedigree. Stay vigilant my friend!
The thing is he sed vm dobt really exist and is a made up diagnosis! I defo will take wat neurologist says and he sed VRT wud not be benificusl as migraine isn’t stable. Thank you for your comments they make a lot of sense x
I wish it didn’t exist. I wish it couldn’t be 24/7. Who is this All Knowing Soul? Was he by any chance going to be paid by you for administering VRT to you?
I should rely on what Dr S the neuro-otologist you saw said first and foremost. And heed what @Naejohn writes which makes perfect sense to me,
An Extract from Dr Hain’s article on vestibular compensation:
Treatment of Central Vertigo , considering vestibular compensation
Vertigo caused by central nervous system dysfunction, or “central vertigo”, is unusual. In the emergency room setting or otolaryngology clinic, a central cause of vertigo is identified in less than 5% of cases. Examples of central vertigo conditions are migraine associated vertigo and mal de debarquement syndrome.
There is a striking difference in the duration of symptoms between central vertigo associated with a fixed structural lesion of the nervous system and otologic vertigo in that in central vertigo, prolonged duration of symptoms are common. While patients with peripheral vestibular imbalance caused by a structural lesion of the vestibular nerve (e.g. vestibular neuritis) typically recover within months to a year, patients with central vertigo such as caused by the a stroke involving the cerebellum may continue to be distressed by ataxia, nausea, and the illusion of motion for years. Presumably the persistence of symptoms in patients with central vertigo reflects a defect in the central mechanisms that usually compensate for vestibular lesions.
One would also expect that attempts to promote vestibular compensation through brainstem or cerebellar mechanisms, would often fail, and that more attention here should be devoted to mechanisms that involve substitution or changes in behavior. In other words, “gaze stablization” exercises might be less useful emphasizis on effective use of appliances such as canes, walkers and footwear and avoidance of dangerous situations.
It is confusing. I was diagnosed with Menieres by a private specialist who I went on to see on the NHS, after 3 years and no respite from Serc, Stemetil, no salt diet etc (Menieres treatments) he said I had “Endolymphatic hydrops”, my body had compensated (as I was only havig a few bad bouts a year) and that it would burn itself out and seem like a bad dream a few years down the line and discharged me. I saw 2 other private specialists who concurred. I solidiered on alone until I got actual migraine headaches and then started to get some actual treatment. However, the headache specialist believed that dizziness could only be very temporary and part of the prodrome of a migraine, so that when the headaches started to subside but the dizziness ramped up, she said it definitely wasn’t MAV as I couldn’t be dizzy 24/7 with it and discharged me with a recommendation to get the GP to refer me back to ENT (which he refused to do).
Doctors all have their own beliefs, so I think you have to keep searching until something starts to work. Don’t expect a pill to start working straight off, especially if you’ve had this for a long time.
I know you’ve seen Dr Surenthiran, as I also have. It has taken six months of taking Pizotifen for my symptoms to stabilise a bit and whilst nowhere near “better” everything has definitely “dampened down” and I’m more functional now. I often doubted that the meds were working and felt despondent at times, but I stuck to the plan With other meds/doctors I was choping and changing meds every few months and using what I now know were the wrong/too low dosages for too short a time.
Dr S told me there was no point in doing VRT until everything was under control.
I’m sure you have read lots about the subject and been on here for a good while, given all your symptoms what diagnosis do you think best fits ??
I suspected for years that I had MAV before I could get anyone to agree with it. My GP believes it is all down to stress.
Your so so right. I also have bee. On low doses of meds and not been on them long enough. That’s why with pizatofin I’m really giving it a good go. I guess I was excepting it was vm then the VRT man had shattered my confidence and made me feel like I have inner ear damage.but I guess it dnt really matter, I still need to keep going with the meds. Your posts keep me positive about pizatofin. When I read your diary’s I thought u sounded so similar to me. I’m so glad ur a lot better. U give me hope so thank you.
All I can say is your vrt specialist is moat definitely wrong - VM can be 24/7 and it is so in many, many people, including myself. I would absolutely getba second opinion from another specialist, particularly a neuro-otologist as they know about both migraine and vestibular conditions. A vrt specialist is bound to support his treatment since he wants you as a patient, he’s going to say it’s the “only” way forward. Vrt can help migraine in some people, but not everyone. By itself I don’t think it’s adequate to treat vm and you need other treatments alongside it. So you could try it out but I would recommend a second opinion from a neurologist or a neuro-otologist. ENT type specialists don’t seem to be very good at diagnosing VM. Vestibular issues are hard to diagnose because the testing isn’t black and white.
You know what the strange thing is? I saw a neur who did balance tests that were all normal. He diagnosed me with vm and pppd.He refers me to the VRT who sed the total opposite. He sed I must have inner ear damage and VRT is the only solution. I contacted the neurologist to let him know that the VRT person is saying the opposite. The neuro is on holiday so waiting for a response.
I’d say it’s a brave or very foolhardy VRT therapist who overrides a neurologist’s opinion. Be interested to hear the neuro’s reply. Sometimes I think these things fail in communication because the two aren’t part of the same team. The VRT I worked with did work in partnership with a neurologist (unfortunately not the one I saw). I’ve since wondered if seeing him may have made a difference in my case but it’s all history now. Helen
The VRT therapist I saw, who was an Audiologist in her own right, treated me on advice from an ENT who found nothing wrong with me. This was before my MAV diagnosis. I contacted her post MAV diagnosis and she said she would only be prepared to treat me again once the condition was totally stabilised on meds but, no doubt, others may well lack her integrity. Helen
I’d listen to the advice of your neurologist who seems to have a much better idea about treating you.
@Onandon03 my neuro asked if i’d tried vrt but he didn’t refer me for it or recommend it. I think perhaps he’s keeping it in mind for the future, perhaps because i need to get mav under control with meds first, as was recommended to you.