The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

Vestibular Migraine/ Labyrinthitis/ MdDs

Hi,
I am new to this forum. I just wanted to know if anyone has/or is experiencing similar symptoms. My symptoms started about 8 months ago and still continue. It started with episodes of spinning vertigo. This was followed by episodes of severe headaches accompanied by intense pain around eyes and along the ridge of nose. The pain usually lasted for around half hour . The spinning vertigo has since receded within 2 to 3 weeks of its initial onset and so have the painful headaches . What I have since, is a feeling of continuous unsteadiness like that of rocking on a boat. Sometimes I have tingling and numbness on the side of the face , followed by an even more intense spell of rocking. This rocking feeling abates while in a moving car. Rocking dizziness becomes more intense on watching busy patterns or on sudden change of direction. I am having difficulty in focusing because of constant internal movement . I have gone through a battery of tests including MRI , blood work and vestibular/ audiological tests. All have come normal except MRI which showed partly empty sella which according to my neurologist is not clinically important. He gave me a diagnosis of labyrinthitis. He put me on clonazepam 0.25 mg to help me with anxiety. I also consulted a neuro otologist and after again putting me through several tests . She said that my subjective visual vertical tests results were not normal and considering the way dizziness started family history ( vertigo) it is likely to be vestibular migraine . She put me on Divalproex 250 which she has now increased to 500. She also advised diet and lifestyle changes which I have incorporated. She also said that there is a slim chance of dizziness being on account of spontaneous MdDs . So it’s been 1 month since I have consulted her my symptoms have fluctuated a lot but I am about 30 % better on an average. So is it possible to have 24/7 rocking dizziness in vestibular migraine which gets better with motion. I just want to know this because from what I have read on the net the only condition where one has constant rocking and finds relief only in motion is MdDs. This is very depressing as I know there is no cure for MdDs. So if anyone has gone through similar symptoms and come out on the other side please do share . Also how long does it take for symptoms resolve / substantially get better in case of a vestibular migraine after starting with medication and following a strict migraine diet.

Hi, and welcome. Glad you felt able to join us and post your own story. You’ll find we are a nice friendly helpful bunch of vertigo/dizziness sufferers with bags of practical management tips on these conditions. No doctors so no diagnosis but loads of friendly advice and support.

As you’ve already seen a neuro-otologist and been given a Vestibular Migraine diagnosis and presumably started lifestyle changed and diet already. Meds, yes/no? You are certainly heading in the right direction. You’ll find more info under the Wiki section and do use the search facility where there’s archive on almost everywhere key word you could imagine. It’s difficult, if not quite possible, to obtain a definite diagnosis. There’s no definitive tests for VM, nor for MddS. Diagnoses of exclusion, far my understanding VM is far more common.

As regards symptoms most things are possible.

Some people with VM suffer motion sickness; some feel better with motion. Don’t get depressed about having MdDS because there is no ‘cure’. There is no cure for VM either I’m afraid. The preventatives do just that, they prevent symptoms if we are lucky. That’s all they do. Very helpful it is though. I wouldn’t function without mine!

The perennial question. Varies individual to individual, drug to drug sometimes. The experts reckon 6-8 weeks trial if each new preventative before you can tell whether it’s going to work. Some people start to see some relief after a few days but most at least one month before they see some improvement. Steel yourself for a but of a long haul I’m afraid. It’s more likely to be months than weeks.

Others here will support you on the way and at least you seem to be starting on the right road. Good luck. Helen

Erm, yes, totally possible. I’m 11 months dizzy, struggle to walk but can cycle, swim and drive without trouble. I’m diagnosed with MAV. You’ll find many people on this forum with 24/7 rocking dizziness.
From what I’ve read there’s research pointing to Mdds being migraine-related.
Welcome to the forum, I hope you’ll find it useful.

2 Likes

yup, rocking dizziness 24/7 with vm here. Gets better with movement. A year and a half here, I dont rock all the time anymore, but do have it every day. All doctors and vestibular rehab people ive seen say it takes a long time, its like recovering from concussion. Search here for a paper I posted on rocking dizziness. Dont worry, it will take time but you will feel better.

2 Likes

Interesting Dr Hain has a very brief piece on ‘Rocking Dizziness’ for which he recommends Effexor. Helen

Hi, @Onandon03 @dizzy3 thanks for your Welcome and kind words.
Helen i am on migraine prevention meds divalproex 500.

Preventives I am sure are very helpful in VM but MdDs has no preventive protocols.

@dizzy3 glad you don’t have constant rocking dizziness now. Were you on any meds . If yes which one was most beneficial.

Also does anyone feel more dizzy while trying hold a position? Also if anyone with VM has had Visual Vertical Tests done which have shown abnormal results since this was used by neuro otologist while giving me diagnoses of VM. Thanks again .

Hey . Hope your dizziness gets better.

I feel so too but couldn’t find research you were referring to.

Don’t recognise your description I’m afraid. Need more detail please.

Yes. Seems to cause extra head pressure some positions, knealing for one or sitting up to table From own personal experience of Tai Chi I can tell you maintaining any still position is far more demanding on balance and strength than moving. There is a Tai Chi form called ‘Embracing The Tree’ which involves standing perfectly still with arms forward, as if ‘hugging a big tree trunk’. Apparently Chinese Strong Men do this for 25 minutes a day in place of a gym work out. It’s extremely balance dependent. Before MAV hit me, I’d got up to nearly 11 minutes some days after four years’ of practising Tai Chi. Strange really because generally MAV has affected my dynamic balance far more than my static balance. Helen

the rocking article I posted a few weeks ago poses this as a hypothesis. I take venlafaxine 150mg, and recently was given clonazepam, but I dont use it. And yes, sitting still is very challenging. So I just seat and stay there telling my brain “you r not moving” and seems to ease it a little. I did as much as I could and now I can sat that I function pretty well. Not always super comfy but I think brain has to re-adapt. But times of quiet and rest are equally important.

It’s called subjective visual vertical test or also known as svv test. http://www.hearingreview.com/2017/10/subjective-visual-vertical.
Thanks for the help and inputs . I’ll use every little information I get to better my symptoms.

Thanks ever so for that. That’s a new one on me. Unfortunately your link came up ‘page unfound’,but could be my Ipad misbehaving, so I found the Wiki.

So it assesses subject’s perception of vertical alignment.

Can I ask what part of the World you are in?

Fascinating. I’ll have a think about the implications of that one. It certainly doesn’t seem to be widely used. Helen

Hi, I am from India . I can tell you doctors over here have very little insight about VM. I have had one neurologist tell me to just “deal with it” since whatever I am suffering from is not life threatening and only had “nuisance value” according to him. My current neuro otologist is the one who did the svv testing along with clinical assessment and gave me a diagnosis of VM. I am following her diet and med (sodium valproate) feeling about 40% better.

2 Likes

UK is much the same. US is best place to develop this I’d say but we don’t each have alot of choice do we. Sounds as if you have found a sympathetic neuro-otologist at last and are getting on the right path. Just keep going now. It needs time and symptoms should then reduce. Good luck. Helen

1 Like