The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

New here - Maybe MAV?


#6

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


#7

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.


#8

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


#9

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.


#10

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


#11

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


#12

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
More relevant eyewear here

#13

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


#14

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.


#15

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


#16

Thank you for the tips - will google her xx


#17

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


#18

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


#19

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.


#20

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


#21

But doesn’t every pill leaflet - surely compulsory bedtime reading for MAVers - say ‘no alcohol’?

I’ve enough reasons to fall over without and having been raised tee-total it’s no hardship for me even over Christmas. Not that I’m anti-alcohol, I’ve had it at times, even a phase of making my own. Wouldn’t risk it at the moment though. Plenty of visual stimuli, like bright sunshine, to make me walk funny as it is.


#22

Yeah, they probably do. how boring! :slight_smile:


#23

Did you comply with the Migraine Diet too?

I could have hugged the neurologist when she told me there was no need to do it at all but ithat’s a bit difficult by email.


#24

It’s odd, at times I’ve found laying off Chocolate in particular has helped.

And cheese & wine (oops!) have definitely worsened tinnitus on occasion, but not so much I wouldn’t have a great pasta again with parmesan topped off with a Chianti (oh sorry, you’ve got me going off on one …)


#25

I haven’t been properly diagnosed yet but that sounds very similar to me. drinking helps take it away for 24 hours…