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

Understanding MAV


#1

I wondered if anyone can explain to me because I am having trouble understanding about the exact way migraine and the vestibular system interact. I listened to Nicholas Silver’s 2009 audio on migraine - I know this was on migraine generally and not MAV specifically - and it made sense and I could certainly identify with many of the symptoms and issues he talked about BUT it didn’t really clarify for me how or why I would feel dizzy 24/7 for this long. I understand that I could be a chronic migraineur and have a background of fluctuating migraine symptoms which make me go from feeling ok to feeling rotten depending on certain environmental factors, triggers etc but what I don’t understand is why for me one day this suddenly developed into dizziness and vertigo (which I never had in my life before) which has stayed with me ever since. Is it that the migraine has somehow got a hold on my vestibular system and disrupts it constantly or do I have a vestibular disorder/damage which I can’t compensate from because I am a chronic migraineur?


#2

I don’t know the answer to this but i would love to know too! I don’t get why this is now constant for me with no breaks.


#3

Jem - me to! In fact some days I’ve decided not to try and understand it because my brain can’t take it :smiley: x


#4

Hi Jem. I would SO like to know the answer to your question.

Have had headaches for most of my adult life but WHY nearly 6years ago did I suddenly (overnight) become so dizzy I couldn’t stand. And why am I now constantly dizzy 24/7 ?

No one tells you why or can explainMAV properly.

Hope someone can answer your question!!


#5

— Begin quote from “Jem”

I wondered if anyone can explain to me because I am having trouble understanding about the exact way migraine and the vestibular system interact. I listened to Nicholas Silver’s 2009 audio on migraine - I know this was on migraine generally and not MAV specifically - and it made sense and I could certainly identify with many of the symptoms and issues he talked about BUT it didn’t really clarify for me how or why I would feel dizzy 24/7 for this long. I understand that I could be a chronic migraineur and have a background of fluctuating migraine symptoms which make me go from feeling ok to feeling rotten depending on certain environmental factors, triggers etc but what I don’t understand is why for me one day this suddenly developed into dizziness and vertigo (which I never had in my life before) which has stayed with me ever since. Is it that the migraine has somehow got a hold on my vestibular system and disrupts it constantly or do I have a vestibular disorder/damage which I can’t compensate from because I am a chronic migraineur?

— End quote

Bonjour tout le monde!

With regards to why we can pin point one particular day that we suddenly developed dizziness/vertigo, if I understood him correctly, Dr S told me in my first consultation that this was because there was a spasm in a blood vessel in the brain stem. The reason for the prolonged ear symptoms are because they are end arteries, so once damage has been done, it’s got nowhere to go sort of thing… As well as that, I think the damage from this spasm can cause vestibular damage which shows up in caloric/balance testing- however, there is no way of knowing whether that damage was there already or not.

As for why we then stay dizzy after that spasm, I think it’s because the brain is sort of ‘ramped up’ and irritated. And we have then crossed that bridge into chronic migraine. Having said that I know I was already in ‘chronic migraine’ without vertigo, but then vertigo got added to the chronic nature… So I guess the answer could be that migraine is disrupting the vestibular system (hence the term vestibular migaine) and there is vestibular damage CAUSED by the migraine. Though I wouldn’t go as far to say you CAN’T recover from it- perhaps you can part recover, part adapt?

When I typed here what Dr S had told me about this spasm thing before, I think someone said it was an interesting theory… So I don’t know if this has ever been proven. Who knows?

I believe there are big fat question marks in this- something doesn’t seem to quite add up does it? A few blanks need filling in for me still. How can we beg a doc to take us all and use us as research?!

MMx


#6

Jem i recommend reading Heal Your Headache: The 1-2-3 Program

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)


#7

Thanks for all your replies everyone x

MM - that sounds quite possible and makes sense. Like you say though there are gaps there which we would all love to know the answers to. I suppose we are all a bit different in exactly what is wrong or what happened to us to cause this. I wish it could be explained fully then it would be easier to cope with and to treat effectively I guess.

Robert thanks, I already bought that book after reading about in on here. It is interesting but I found that it did not contain that much info on the vestibular side of things. I also read ‘The Migraine Brain’ which was useful but again was probably more helpful for someone with classic migraines rather than vestibular issues. I hope you keep improving Robert.

Dizzyanne - have you found any meds to help you? How long did it take for you to be diagnosed with MAV?


#8

Hi Jem,was only diagnosed with MAV about 6months ago.

Prior to this they said my vestibular system wasn’t working , was permanently damaged and I would never recover.

6months ago I had the water in the ear tests again and they now say that I have no vestibular damage!!

Am now on 40mg nori which I think has helped quite a bit without many side effects. I am now being put on Topirimate which I am quite nervous about.

How are you feeling ?


#9

Hi Anne

Wow how could they get your vestibular tests so wrong!

Are you in the UK, if so whereabouts?

I am glad the nori is helping you. I am currently on 20mg of nori, I asked my GP for it myself a month ago as I am suspecting MAV - having spent 3.5 years thinking it was VN - after I had a huge relapse in dizziness over the last few months. I think the nori may have started helping a little bit but I don’t want to jinx it cos I am still very dizzy at the moment. I see Dr Silver next week.

How come you are going on topirimate? Is that as well as the nori or are you switching meds? x


#10

Hi Jem

Yes am in the u.k. I live in Bolton Lancashire. Where are you from?

Who is this Dr.Silver you are seeing soon?

I’m sorry to hear that you’ve had a relapse in dizziness. There doesn’t seem much reason with this MAV thing. You can be feeling better then ,for no apparent reason, wham…and you’re bad again.
Hope the nori works for you!!

As well as 24/7 headaches & dizziness I also had facial pains. It was for these pains I was put on the nori and it has helped quite a bit.
The topirimate is for the headaches. I am really not very happy about taking both so may come off the nori.

Hope your appointment with Dr Silver goes well and you get some answers.

Anne x


#11

Hi Anne

I live quite near you then, I am in Wilmslow not that far from Manchester!

I got Dr Silver’s name off this website as a Migraine/MAV specialist. He is a neurologist based at The Walton Centre in Liverpool but he also consults from Warrington Hospital which is where I am seeing him. If you search this forum you will find more info about him and there is also an audio recording of a conference he held on ‘Migraine’ in general - it is quite interesting. I asked for my GP to refer me on the NHS as I have not been diagnosed with MAV as yet.

I will post an update after my appointment.

Interestingly I am on nori and it does seem to help with pain. I have chronic neck pain and it seemed to help with that very quickly. Now I just need the dizziness sorted!! x


#12

Hi Jem,

Have a look at this video at about 1 min 20 sec.

http://www.youtube.com/v/yAsoGLK-p_4)

S


#13

I am asking for topa as soon as I have the baby Ive heard so many good things about it you must try it Anne x


#14

Thanks Scott. So the scientific explanation from the Mayo Clinic is that it is:

“Related to the migraine’s neuro-chemical and blood flow changes in your cerebral cortex (sheet of neural tissue) or brainstem. These changes may disrupt signals that relay information from the vestibular or sensory system in your inner ear causing dizziness, nausea and other symptoms and some people with migrainous vertigo don’t always get headaches with their attacks.”

It’s nice to hear it explained by an ‘official’ source so to speak. It’s certainly a very complex area though, no wonder so few people understand it properly.

Donna - how are you? when is the baby due? I am not sure about GP’s prescribing topamax, I bet they can prescribe it but possibly they would want a recommendation from a neuro first… I am not sure but it can’t hurt to ask. Are you under the care of a neurologist at the moment or do you always see your GP? x


#15

Jem I should still be under him as Ive never been discharged. I changed doctors six months ago but they still havent got all my notes from my old doctors so its like banging my head up a brick wall at the moment.
I could ask them to phone my neuro to see if I can try it I honestly have heard good things about it and it calming down the central nervous system etc.
My baby is due monday so two days to go Im just counting because at least I can up the amitriptyline for the anxiety if nothing else. My dizziness is very strange right now Im finding the car just horrible but how much of that is now my panic I dont know but I have extreme head pressure like Im having a headache but Im not its weird and spinning on looking up/down and mini spins in between. Also everything feels kind of wonky when I walk but I had all this in 2010 in patches but never for this long so Im thinking hormones/fluid etc causing this new change.

This is knocking my confidence so badly Im worried I will be scared to go out even when I feel better.
Im glad to see your dizziness is lessening slightly I think you will see a big difference at 30mg if you can tolerate side effects please let me know x


#16

Aww Donna, I can tell you are panicking from your message. It’s not surprising when you feel like that and the baby due so soon. I have had some head pressure with this latest relapse and it’s horrible isn’t it, i was really freaking out but it did pass. I know what you mean about everything being wonky too and when I walk things can seem like they are bouncy in my field of vision. It’s so hard to describe but basically it’s hideous and feels crap. When I am really bad I don’t want to move my head or even my eyes sometimes. It will pass Donna, just hang in there. It certainly does knock your confidence and you wonder how you will ever do stuff again but when it starts to get better you will just find yourself doing more and the confidence will return. It’s a pain to have to go through that process time and again though, i feel the same.

Snap with the doctors too. I changed GP last year and they didn’t have my notes when i went in August! They don’t make things easy for us do they? If you go back on the ami straight after the birth because you know you can tolerate it and it has helped you and then try to increase up your dose higher. Then when things have settled down a bit you can assess what symptoms you still have and work out whether any other meds will help. You don’t want to rush into taking too many meds all at once. Perhaps press your GP to refer you to your neuro so that your appt will probably come through in a couple of months and you will have a better idea of how things are and if you need another med with or instead of the ami.

Quote from Winnie-the-Pooh: “You are braver than you believe, stronger than you seem, and smarter than you think.”

You will get through it Donna x


#17

Thanks so much Jemma I am panicking because my husband has to go back to work at some point hes never stopped working because of my dizzys except the odd days. I am in limbo of what to do up the ami dose but then it may be harder to come off or get rid totally and try something new so so hard to decide.
For now Im going to up the ami I think to 20mg as soon as I have baby and see where it leaves me improvement wise. I know post partum hormones will be awful I dont want anything worse taking hold in that period. I just keep thinking in 6 weeks I might feel more like me again I do hope so I hate this feeling :frowning:
In three years though Ive never been 100% I think I do need something else its just what to try isnt it and hoping you dont make yourself worse in the process xx

Thanks for your support xx


#18

Hope you feel a bit better today Donna. It really is hard I know. I have a headache and feel grotty today. One minute you think you are improving then you feel worse again - it tricks you and it’s so disappointing. We just have to keep fighting and doing what we can.

My partner hasn’t had any time off cos of my illness but we don’t have children so it must be really hard for you coping with them & feeling dizzy. I admire your strength for doing that. I spend a lot of time at home alone but this illness makes you a recluse because dealing with people is really hard when you feel dizzy. I feel pretty isolated and have a lot of time to worry about my symptoms but hopefully if things improve then the worrying slowly reduces and other things can begin to take its place. It would be nice to fast forward through the bad times and get to the better days. I hope they come soon for us x


#19

Hey ladies Jem, Donna,

Just wanted to say hi - and say how lucky we are to have this forum. Donna you are amazing to have the strength to go for another baby with these horrid dizzys - I would love another baby but am too scared so well done you. Your positivity is amazing! As you know I saw Dr S on Wednesday - he truly believes that we can get better - life wont be the same (ie you can’t neck a bottle of red & eat blue cheese all day & expect to feel ok) but some form of normality will return - we need to believe him. I know how hard it is when your feeling sh@t.
I must dash as taking my babies to meet MR Maker!
Take care all

Anna x


#20

Hi Anna

Thanks for your message, you sound like you are doing well.

It is reassuring when an experienced doctor like Dr S says you will get better - or at least improve a lot. I know I did improve the first time but for me it took so long and now it feels like I am starting at the beginning again. I really hope the nori means things improve a lot quicker this time round but I have felt horrid today so it kind of deflates my hopefulness. Did Dr S tell you to stick with 50mg of nori for the foreseeable time Anna? x