New here - Maybe MAV?

Hey everyone,

Thanks for the forum and the community. It has been helpful to read other peoples stories and know I am not alone. It can be a bit frightening. I was hoping a few people could opine on their thoughts of my symptom- I was recently diagnosed with some form of silent migraines that are causing my vertigo/dizziness and put on Depakote two weeks ago, but I am not sure all of my symptoms align with MAV.

I’ve been getting a very mild dizziness/“full head” feeling for the past four years, after starting a new job that was relatively demanding in terms of time spent in front of a computer screen( and on a high floor where the building sways in the wind). I also get occasional brain “zaps”. I am a 28 year old white male who was formerly an athlete and still gets out a bit today, and eats healthy.

My symptoms come and go, but generally they are better in the morning and get worse throughout the day at work. After I get home, if I lay on my couch for an hour, I generally feel better like I did at the beginning of the day (not 100%, but better).

Generally my dizziness seems to be aggravated by sleeping/laying on my stomach, but is ameliorated by sleeping/laying on my back.

Additionally, I have found that my dizziness can temporarily eliminated (for ~24 hours) if I have a few drinks. I have also found that Ibprofuen and other NSAIDs eliminate/reduce my symptoms, but normally at high doses such that I had highish liver levels the last time I went in for a check-up.

I don’t get headaches ever, and my symptoms are generally pretty light compared to what I have read here. Occasionally they flare up such to the point it is hard to concentrated/focus/think but other than that, they are normally manageable.

What are your thoughts? Has anyone had anything similar?

You sound pretty typically MAV-y to me. MAV is a giant spectrum of symptoms with, I suspect, a variety of causes. You need to see a neurologist or neuro-otologist. The one thing that catches my eye is that your dizziness is positional. Rule out BPPV.

Good luck and welcome.

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@elahcix I agree with @flutters. In addition I wanted to mention mine also started a few months after I began my first 8 hour a day computer job when I was 24 years old. Thankfully I wasn’t in a high rise building, I can’t imagine. Computer screens were and still are a horrible trigger for me. There were times when I had to come home from work and lay down until dinner time to feel better to make it through the evening. My dizziness also gets worse when I lay down but for me it’s any position, back, side, stomach. This is even sleeping with my head propped up.

Which doctor prescribed you the Depakote? Was it your primary care doctor? I’m just interested because it’s not normally one of the first drugs to go to for migraine prevention but I have read that it can be successful, it’s all trial and error. I’m not diminishing Depakote at all I think it can be one of the most successful migraine preventatives out there.

Hi

Sounds much like alot of others on this forum. Still you’ve got on meds now so hopefully things will improve for you. I’m sure you stand the best chance of improvement, being young and particularly as your condition is still episodic and you have caught it early on.

MAV must happen for some reason. I’ve noticed alot of people whose MAV kicked in after much increased computer use. It’s beginning to seem more than coincidence to me. Guess folk would have to have some genetic predisposition to it in the first place but that goes for most medical conditions I’d imagine other than those caused by trauma.

Not that the workers of this computerised world could really avoid screens anyway but intolerance to them does prove a problem. It’s probably visual vertigo causing the dizziness in front of the screen. It can be sensitivity to the blue light coming off the screen or ‘just’ the moving text, banners etc. Some people do find relief with tinted lenses or special computer glasses. However this is not really getting near the root of the problem. With MAV the dizziness is the equivalent of the migraine headache, the symptom - you say you don’t get headaches - neither do I or many others. The theory is, if the preventative stops the migraine, the dizziness and visual vertigo (another common MAV symptom) will cease.

It’s a long shot but it is worth a thorough eye examination because any sort of eye could cause similar symptoms and might not necessarily come to light under routine eye tests. Vertical Heterophoria is one. Might be worth looking into but it’s a long shot.

I’d be careful about taking painkillers with preventatives. Some neurologists, Dr SIlver in UK reckons it can stop them working. You’ll find his discourse elsewhere on this forum together with lots of further info.

Good Luck in getting to grips with The Beast.

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Hi all,

Ive suffered with MAV for almost 4 years now…had a LOT of meds, acupuncture, MRI, allergy testing, VRT…and lost almost 6 months of work since 2015. Ive just had 31 Botox injections 4 weeks ago and so far my neck pain and headaches are noticably better but its done nothing for my dizziness and disorientation ( i know its early days and i have to have another lot of treatment in 8 weeks time)i also suffer ear/fullness & sinus pain. I feel like as long as i have to come to work 5 days a week using a computer 6 hrs a day im never going to get better…within 30 mins of coming into work i am dizzy and off balance and feel like this ALL day until i get home and lie down until i feel better. I always pick up on an evening when im relaxed.

My employer has made every adjustment possible to help me…nothing works…im still dizzy.

Take care all

Jo xxx

Elahcix,

I have noticed what you say about how you feel almost normal for 24 hours after having a few drink…i also feel better when im able to have a few alcoholic drinks…its as if my dizziness doesnt exist…how can this be?
Strange!!

Jo xxx

Hi

So, from yr brief description of symptoms, seems something in yr work environment is causing/exacerbating yr MAV symptoms. Suggest you start by making a list if the differences between the various environments you inhabit and maybe design a symptom scale 1-10 and for a few days keep a record. Results might give you some clues.

Something must be causing yr symptoms. Best try and find out what. Could be excessive (for you) computer use. Are you light sensitive. To lights generally, the blue emitted from the screen, the office lighting. Possibly you have an undiagnosed eye condition. See an optician initially. As you find relief from either relaxing at home or by using alcohol could well be mainly stress related due to yr work environment. May be combination of several factors.

Pls don’t be constantly dizzy. That’s horrid. I know. Been there. Bit of investigation could quite easily lead to a solution. Good luck with yr hunt.

Thanks for your reply ,

I think you are right, the computer and office environment are a huge trigger for me…but i have also noticed the journey to work is also a trigger. I am fine as a passenger when travelling but as soon as i get out of the car/ bus my balance is horrendous…what with that and then 6hrs of computer work its fair to say my dizziness is at its worst…i have to leave work on many occasions with it. My specialist says its " clear to see" i am in a Chronic Vestibular Migraine pattern. This all started Nov 17th 2014 after the worst migraine of my life where i had to be given nasal sumatriptan and oxygen…i have never been well since…May 2015 MAV was diagnosed. I do get headaches ( not migraine) and neck pain and my ears feel like they will explode sometimes when im really ill. Im pinning all my hopes on this Botox treatment but i may have to add a med to it if i dont improve.

What a nightmare this is!!!
Hope you are well.

Jo xxx

HI.

I agree with ruling out BPPV too.

(Just read the previous post and realized they addressed the coated glasses so I’ve just edited this.)

My neurologist says fluorescent lights are also triggers for many people. Luckily, that’s one thing I don’t have a problem with.
Hope you’re able to find a solution soon.

Hi Guys,

Yes i can relate to whats been said about lights as a trigger and too much stimuli…i recently went away for a week break from it all…i was ill the whole time i was in the airport…far too much going on my brain couldnt cope with it all full blown vertigo…felt awful thought i was going to have to turn around and come home.

Then once i got in holiday even though i did experience daily dizziness i didnt feel as unwell as i would at work or doing too much around the house.

If i lay in bed for the rest of my life i would never feel ill!!! Thats not the way to deal with this horrible illness though is it?

When i go for my 2nd round of Botox im going to ask for a med to add to it…mind you, ive almost done them all😏

Keep well everyone
Jo xxxx

Hi, my MAV is primarily triggered by things that are bright and flicker. That is lights, computer screens, mobile phones, TVs etc. I’ve learnt through trial and error that by avoiding these things as much as possible, my MAV is manageable. For example, I don’t sit directly under a light at work. I turn the brightness down on my laptop (and use a non flicker screen), I limit my time on my phone etc… I also find moderate alcohol helps. Both my neurologist and GP think it’s because alcohol relaxes you. MAV is a horrible thing to deal with but the best bit of advice I ever had was to keep a dizzy diary. Chart your headache and dizziness and work out when it’s worse. Lights- fluorescent, halogen, long life etc are one of the most common triggers and can make you feel absolutely awful x

Have you tried the various tinted spectacles available? Migralens, Theraspecs etc. Yr own optician can produce tinted specs. Have you been tested for Irlen Syndrome. Just a long shot. You sound pretty organised with symptom diaries so I expect you have looked at all possibilities but it’s always worth a mention. Seems these modern devices affect alot of people one way or another. Perhaps the Evolution of Man isn’t quite keeping up with the times.

NB from admin: these images link to products other members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!

Migralens Theraspecs
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I haven’t heard of Irlen Syndrome, so thank you for the tip off! I’ve got anti-glare on my glasses and I’ve been toying with the idea of Theraspecs but I’m a bit worried about looking silly at work. Which is ridiculous I know, but I’ve got quite a big job and I’m concerned it will be held against me. I also take 10mg of amitriptyline a day which has helped a lot. But yes, this modern screen lead life doesn’t suit us all. And a few months ago (before the medication) when I had my last major attack, I was ready to leave office life altogether. In fact I still would if it wasn’t for the massive mortgage xx

Hi

Theraspecs didn’t help me but might be worth a try for you. They seem a good company. You can have them on trial, try them and return them if unsuitable and get full refund and you could try them at home and when you are away from work first before braving the work environment in them, but, failing all else, it is 2018, they cannot discriminate against you not on any grounds. Irlens Syndrome also used coloured lenses although not necessarily pink. Varies individual to individual. Have you tried increasing the Amitriptyline. I’ve read Dr Kathleen Digre on Photophobia (google her) and she uses Ami for photophobia successfully.

Hey everyone,

Thanks for the tips, thoughts and kind words. I am now 15 days into my 250mg of depakote Er daily and my symptoms have changed. I no longer get the dizzy spells, but it seems that my symptoms have progressed (regressed?) to a full blown migraine type of situation.

When I would have gotten dizzy, I now get a “full head feeling” which is much more welcome than the dizzy spins. The problem is that after I get to the full head feeling I get to a painful headache afterwards (something I had not experienced before). I trust this means the depakote is working and slowly changing a bit of my brain chemistry reducing the frequency of attacks etc.

Flouresent lights are certainly a trigger for me, so I am going to try out some thereaspects or another tinted glasses/contacts. I also have an appointment with an ophthalmologist to rule out any eye based problems.

I’ll keep you all appraised and I hope you’ve had a good symptom light day.

Elah

Thank you for the tips - will google her xx

Because if its anxiety and not mav, then the alcohol would take away the dizziness that is associated with the anxiety.

Hi

Yes i know you do have a point…but i honestly dont feel anxious i accepted my diagnosis no problem because the mother of all migraines caused it all to kick in then 6 months of headaches…then it morphe to 24/7 dizziness. The only time im anxious is when im off work sick worrying about my job. Other than that i go about my everyday life as best i can some bad days some not so bad. But yes…without doubt i do lose the dizzies just for a little while if i sit and relax and have maybe a drink or 2…ive just started Nortriptyline…its awful. I have terrible visual symptoms.hopefully this will help somewhat.

Hope your have a good day

Jo xxx

I agree you can feel better by drinking alcohol for a while, and it does temporarily relax you, but I do not agree the dizziness is ‘because of anxiety’. The aetiology of MAV is surely about multiple layers of issues. In my view its about a vestibular deficit and neurological ones layered on top. Anxiety is caused but can also exacerbate, but its not the fundamental reason you are dizzy - you’ve got a vestibular lesion somewhere of some kind.

Btw, as I’ve got better I’ve noticed that whilst alcohol temporarily improves my symptoms it actually sets me back over the next few days. I believe that’s because it has an impact on homeostasis.

In my view: use caution with alcohol and consume only in strict moderation.

Yes…good advice…theres a fine line isnt there?
Jo xx

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