VN with possible MAV inclusion

Specific Illnesses & Conditions VM/MAV
1

Hi all,

I am new to the board. Was originally diagnosed with VN in April by an ENT but was not happy with the diagnosis so went to see Dr Surenthiran who diagnosed me with MAV as a complicating factor based on my history. The test results show a caloric weakness of 48% in my right ear - here’s where things get funny, the first hot water caloric I had done showed no problems then the cold water showed some problems. They repeated the hot water and then the 48% deficit surfaced. I find this a bit strange. On my pursuit tracking tests, there were some minor asymmetries. Does anyone have any answers to this? I read on this board that Dr Rauch says a spread of findings indicating peripheral and central issues usually indicated Migraine…?

My symptoms all started after a trip to Thailand in early March. During a quick 10 day trip I did 5 flights and 5 boat rides - plus plenty of drinking and hardly any sleeping. When I came home I suddenly started to feel a bit weird. Things did not look as though they should have done. I went to bed and had my first spin which lasted about 20 minutes. I put this down to jet lag and slept for about an hour. I got up when and did some shopping and felt groggy, but not weird. Then, went to work the next day…at 11am all hell broke loose. I had a feeling like I was dropping, panic, aniexty, sweating you name it - had some slow spin and general felt unsteady. This lasted about 40 minutes before I could get up. I then stumbled to A&E where I was diagnosed with Labs. During this week I felt okish, but train and car travel started to become a little harder and left my feeling like I was being pulled from side to side/motion sickness - it was not very bad, just a little. The next week I felt ok, little off, but started back in the gym, was even going out in the evenings to restaurants and driving around viewing houses and going to large shopping centres with no problems. A full 2 weeks after my original attack, I had another one at work. Went back to the GP who looked in my ear and saw some inflammation and gave me an anti biotic- something the original GP did not see so I am sceptical of this diagnosis, as inflammation wouldn’t have started 2 weeks after my original attack.

I then went to Edinburgh in early April by flight for a short 3 day break. Again, I started to notice I was off, we would be walking around sight seeing and my legs would feel jelly like, the floor moving and shops became weird for me - I felt like I was on a buzz the whole time. I remember distinctly having a massage with scented oil and when my head was being rubbed I embarked on what felt like a room moving with huge amounts of panic for about 5 minutes. However, I went to restaurants and they were ok, no issues. When I got back from Edinburgh, I got home and felt very weird so laid down and had another slow spin for about 10 minutes.

Ok, so things started to progressively feel worse at this point - it was mid April about a full month since my symptoms started. Once I got off a train or car, I felt the motion and pulling and pushing far more. My legs were starting to feel more jelly like and the floor moved more - public places all of a sudden became hard to deal with. I then was referred to a ENT surgeon who asked for all the tests caloric, ENG. Once I had my calorics I was literally out of sorts for about 2 weeks. I feel like the Calorics almost started off the worst of my problems. Migraine trigger foods, like cheese, nuts and sour cream made my feel really nauseous - these foods I never had a problem with in my life. Needless to say during May/June my symptoms progressively started to get worse. Things like standing and talking I started to rock with - this did not happen at the beginning.

I have had about 8 weeks / 4 sessions of VRT and have seen little progress - my VRT therapist feels my balance is good and there aren’t many things she can give to improve it. So I went to see Dr S. He said the number of flights, boat trips, lack of sleep and possibly the amount of MSG consumed in Thailand were a triggering factor and he feels that the MAV is my main issue which is either a) hindering compensation b) caused the peripheral injury or c) peripheral injury has always been there and I have compensated already. He came to this conclusion based on the fact that I was motion intolerant when younger and I have a family history of migraines - plus my symptoms seem to have got worse over a period of a month rather than better - I have MAV.

He has put me on 10mg of Nort going up 10mg every 2 weeks and will review me in 6 weeks.

My symptoms are:

  1. constant rocking/swaying motion when sitting/standing especially on hard surfaces - walking I can sometimes be fine one minutes, then the next minute the floor goes all weird on me.
  2. any movement stirs up symptoms - takes time to come down to a baseline
  3. train/tube/car travel - I feel good in motion, when I stop or disembark my legs are jelly, my eyes start darting around and I am being tugged side to side more so.
  4. public places - restaurants, doctors waiting rooms, and at work all make me feel like I am on a boat. If there is loud music or loud noise in these places the symptoms get worse.
  5. short term memory loss/concentration issue/spaced out.
  6. I get these ‘swooning’ episodes that sometimes come out of nowhere - my head and neck feel tight, even if I want to move it I can’t. Feel likes my eyes balls are being pulled out of their sockets. Any movement in my view makes it worse. These last anywhere between 2 minutes to 30 minutes and make me feel so much worse after.

I am literally at my wits end with this. I am really hoping that the Nort can give me some relief. Can anyone give me any idea’s whether they can relate to these symptoms. By the way, this has well and truly cocked up my life. I have now lost my girlfriend of 5 years due to this!

Thanks for listening all.

Khal

2

Hey - welcome to the forum. You should be able to find lots of info here, so keep looking around…

Regarding a couple things you’ve mentioned (my head’s too fuzzy today to post a ton today), from my understanding, some folks with MAV did actually start out with VN being their trigger, so you’re not alone there. And… if I’m remembering some other posts correction, VRT is generally not helpful with MAV. Thus, you’re definitely not alone there, either. Now the (potentially) good news - a fair number of folks do find some relief from Nort (wish I could take it!), so you’ve got a good med to start with. And sounds like you’ve got a good doc, too. With any “luck” the Nort might be the one for you, right at the start, unlike those of us who can’t find the right med and have issues with med-sensitivity getting in the way. (Argh.)

And as for the girlfriend, all I can say is - if she couldn’t tough it out through MAV with you, then she’s a stinker and shouldn’t be with you anyhow! :wink:

3

Hi Erika,

Yes, this forum has heaps of good information. The only place where I feel its a tad bit light is the ‘success stories’ page! :frowning:

Khal

4

I know. But think of it this way… It’s kind of like looking for reviews on the internet. It’s mostly the folks with a “bone to pick” that bother to get online and review things. So, the folks who are here are largely the folks who’ve been through the wringer, so-to-speak, trying to get diagnosed, trying to find the right meds, feeling lousy for a while. We’re the ones looking for answers and support. It’s the success stories who are out there going about their lives without a care in the world and don’t have much use for us… :slight_smile:

5

Forums like this can literally save lives. It has allowed me to find Dr Surenthiran who I believe is one of the best in the world in his field.

I understand that people want to get on with their lives, but its not fair that they don’t come back and give the rest of us hope.

Have you been able to get your symptoms down to a reasonable level? I just want to understand what everyones quality of life is like with this long term.

6

True. I’m determined to post my success story as soon as I have one! :wink:

I’m on Verapamil (have been since December - been dealing with this for 2 years, but didn’t get diagnosed properly till December) and a whole host of vitamin supps (my new neurologist just upped my B2, magnesium, and started me on Petadolex Butterbur) but that’s it for right now. Couldn’t tolerate Topamax, Depakote, Lamictal, Effexor… At this point, I’d say I function mostly at about 70% of normal - good enough to drive, muddle my way through a day at work, and have a bit of a social life. I still have some worse days (like today - haven’t been able to ID too many food triggers, but strongly suspecting canned tomatoes in last nights tacos…) - head is totally muddled. And balance is more off than it’s been in a while. Just have to remind myself it’s not generally this bad when I get discouraged. Still hoping that if the neuro’s current plan doesn’t work, maybe the next med will. (I can’t try Nort b/c of the cardiac issues associated with it - I have an arrhythmia - but I’m wondering if we might give Ami a try next… Who knows.)

It’s good you were able to connect with a good doc. I went through several useless ones during the past couple years. There’s only one listed on this forum that’s fairly close (an hour away). I’ll try him next if my current neuro doesn’t work out… I think the one I’ve got now seems to be pretty knowledgeable, though, so we’ll see if she can help. I’d prefer to have a doc that’s closer if at all possible. :slight_smile:

7

So after roughly 7 months you are operating on a decent level. Thats very good and I am glad to hear it. Fingers crossed you can continue to progress!

I would say I am operating at about 40-50%. I can get through a day at work, but I am very symptomatic constantly - people at work have noticed I am not the same person and look like I am struggling throughout the day. I am really trying to keep doing the normal things like driving and going to work from day one, but it hasn’t stood me good stead so far. I don’t have a social life anymore which is a pain…although I have saved a ton of money not going out which I guess is the only good thing that has come out of this. Then again if I don’t have anything to spend the saved money on, whats the point!

I understand the issues I am facing and know this is a lifetime thing of ups and down. But I think I could deal with the down part if I had periods of being up and being able to enjoy those to the full. So strange in this day and age they can control HIV and cure cancers, but they can’t sort out vestibular disorders. Crazy!