hi, quite new to this board.I wondered if MAV and vestibular migraines are the same thing but just different names?If not does anyone know the difference? :confused:

Yes. MAV is also commonly known as Basilar Migraines. Basilar, meaning the part of the brain's arteries that are affected.

Remember that migraine means "poor blood flow", NOT headache. With MAV, you can have headaches, or have no headache at all.

When your arteries constrict or spasm, the blood flow also can be restricted, which accounts for the bizarre symptoms of imbalance and disequilibrium feelings and sensations. Depending on which artery is spasming, and the length of spasm will also determine how your symptoms feel and last.

It is possible to have symptoms ALL the time. It is also possible to have a complete or partial alleviation of symptoms, and then have them return.

People who have MAV are usually predisposed, meaning that it's something that you probably have had BEFORE you started noticing symptoms. Sometimes illness or inner ear problem can trigger MAV, but usually is it what it is - meaning, you just have it. You can't "catch" MAV.

If you do a search on my user name (and my older user name Wowwweee), you will see other posts I have either replied to or created on, MAV.

I have had symptoms for over 10 years, and have been diagnosed with MAV. Remember, MAV is a RULING OUT diagnosis - meaning, there is no specific test to determine if a person has MAV.

Take care. xo

hi wowwwweeee
thanks for your response,I,ve been diagnosed with vestibular migraines.Have my symptoms 24/7.From reading about this most people seem to have epidsodes of it rather than all the time.My dizziness is there all the time.My headaches have improved alot since i first got this.Without medication.I had an ENG teat in the rotary chair and that came back with adnormal eye movements to the left.Do you know if this is normal with vestibular migraines?
take care
xbombshell31x xxxx

Woweeee,

That is interesting. I've been conversing with xbombshell31x and started looking into the MAV. I don't think this is my problem because I have absolutely no past history of any of this and mine started after an ear infection/virus. I was wondering if it is something you can catch, but you say you can't catch MAV. I couldn't find any information on this (I really didn't try real hard because I am so burned out on researching other inner ear stuff for the past 7 months.)

Does MAV go into like a remission or do people suffer like this forever. Xbombshell31x said she has her headache all the time (so do I, but the intensity is different). Also, I never really had vertigo. At little rocking sensation in the beginning but it has passed. I get a strange feeling in my head however. Like I'm not sure of myself or kind of lightheaded but not the same lightheaded as if you bend over and stand up too quickly. Just a strange feeling.

Thanks,
Gloria

My 2 cents - I feel as if I'm proof one can develop MAV from Vestibular Neuritis. The reason I believe I started w/ VN is that the constant dizziness came on w/ a cold 5 months ago. In the past month I have (unfortunately) been experiencing a lot of migraine-like symptoms. (Right now I think I fall somewhere b/n complicated migraine and MAV). From everything I've read, the dizziness and migraine relationship is not black and white.

Also, as I was just looking up today, an abnormal ENG doesn't rule out MAV.

"ENG typically is not helpful in differentiating migraine-associated vertigo from Ménière disease. However, for patients with a several-year history of dizziness, normal findings on ENG are suggestive of migraine-associated vertigo." http://www.emedicine.com/ent/topic727.htm

So unless you're "lucky" enough to have had vertgio several years, looks like just an ENG might not be enough for a diagnosis.

hi aphex
Thanks for response.They did want to do that test where by they poor water in your ears but i didnt want them to do it.I read on the net that it makes you feel really dizzy.My neuro-otologist did say she would like to do it next time.Im seeing her again in sept.What exactly does this tests tell them?I couldnt even complete the rotary chair test.It made me feel so sick,i was crying.Im not looking forward to seeing her again.She did say thats theres damage to my left ear due to previous viruses which caused labs.She thinks the migraines are aggravating this and making my brain uncompensate my problem.Could this be true?
take care
xbombshell31x

hi

i am seeing a dr chan at the hospital in queens sq, and that is that same as ive been told, that the migraines are preventing full compensation, i am supposed to be taking propranolol and havent started them yet, i dont like the sound of the side effects, i have appoinment in september as well, with dr chan and vrt clinic.

Bomb and Gloria.

With MAV, you can be episodic in symptoms, but a person can also have symptoms around the clock. My belief only, but I feel that if it IS MAV, over time, once you learn to deal with the symptoms and once you become less afraid of them, it becomes easier to cope and compensate. I equate MAV to full blown panic attacks – meaning, that once a person begins to understand what a panic attack is, how it works or is triggered, and finds ways to work around the high anxiety, the panic attacks lessen – and although that person will usually some have form of anxiety all the time underneath, they are less limited by the actual panic attacks.

For MAV, once I started dealing with the FEAR of having these head symptoms, and once found new ways to do things with head symptoms, and once I learned how to “practice calm” better, my head symptoms became less frightening to me. However, I also think that over time, I became more tolerant of my symptoms and was able to acclimate and compensate more.

I also believe that you can have abnormal test readings with MAV, but that isn’t proof that it IS MAV.

MAV isn’t something you catch, but it CAN be triggered by something like a viral infection (for example). Most people who have MAV also have some sort of inner ear issue going on. For example, my symptoms started out as Benign Positional Vertigo, but after time, those specific BPV symptoms lessened into my current symptoms.

A person doesn’t have to have a past history of head symptoms to experience MAV. There usually is some sort of family history of someone having some form of migraine.

MAV can clear up without reoccurring symptoms for some people. It is a best guess as to why this is for some people, and not others. For women, MAV symptoms usually appear in the thirties, and the majority of symptoms disappear after menopause.

The types of sensations that a person can have can vary from spins to motion intolerance, and everything in between. And again, most people think of MAV as headaches. It’s NOT. It’s about blood flow. You can have headaches or NOT with MAV. I always have a headache.

Over the counter medications like plain aspirin and Dimetapp Antihistamine or Liquid Benedryl have been known to work well to alleviate (not cure) MAV symptoms. Another good medication to try is an older anti-depressant called Amitriptyline.

It’s good to try to find ways to eliminate stress, as that is a trigger for MAV.

I hope this helps. xo

PS - Bomb, I had the caloric (water) testing, along with many other balance tests, and honestly, the FEAR was worse than the water in the ear. If you do a search on my user names (old: Wowwweee and this current one) somewhere in there is a post of mine describing ALL the testing I had. Yes, some people do experience more heightened symptoms than others, but some people have to deal more with the fear than the actual testing itself. I would have it all again, if I absolutely had to. Some specialists routinely request that a person have all testing again if their last results are (I believe) older than six months. Those types of testing however, DO NOT determine MAV. Rather, they rule out other types of inner ear issues that could lead to a diagnosis of MAV based on what you DON'T have.

hya wowwwweeee and brina
thanks for the info and support wowwwweeee,i will look up on your old name.
I have tried amitriptyline,It did nothing for me and i ended up on quite a high dose.I dont have headaches all the time,just most of the time,its the dizziness that bothers me the most.I also have tried verapermil.That hasnt worked either.My neurologists wants to try me on some new meds but they have a side affect of making you more depressed(lovely)so in order for him to prescribe me this he wants me to see a shrink while im on then to make sure my depression is controled.

hy brina,i go to that hospital too.I see a neurologist there called dr holgar kaube and a neuro-otologist called dr rosalyn davies.Im due to have VRT in august.Have read on this board though that VRT doesnt work for mav or vestibular miraines.Is it helping you?What are the side affects to the medication that you take?Do you get visual disturbances with your migraines?Im finding it really hard to cope with sometimes as im trying to be a mum to a 14 yr old at the same time as having this.She doesnt really understand why i cant do things as i look well on the outside.
take care of yourselves and thanks for response.

xbombshell31x
xxx

Hi xbombshell31x,

I took your advice and have an appointment with a neurotogist on the 26th. I'm so scared that they are going to tell me it is MAV or something. I'm afraid it won't go away.

Is is so hard with a child, isn't it? I have a 4 year old and have missed so much this past year of him growing up. I'll never get that chance again. I feel he has suffered so much from my illness. I try not to let him see me cry but some times I just can't help it.

Take care....I'm not coping too well today.
Gloria

hi gloria
i know what you mean,not only am i ill but my daughter is at that age where it seems she just wants to be difficult.I snap at her sometimes,im sure i wouldnt do that as much if i were well.I had labs when my daughter was young like yours.It only lasted 2-3 weeks though but i know how difficult it was for me for just those 3 weeks.
Im really glad you got your appt.Thats put a smile on my face(not much does these days)Im sure you will be fine.Its better to find out what it is so they can offer you the right treatment.
I too spend alot of time crying.I try not to let my daughter see this but its hard.I usually go to bed and cry myself to sleep.You are not alone.Im sorry to hear your not coping well today.you will have days like that.Take care

xbombshell31x
xxxxx

hi xbombshell31x

the vrt seemed to help a bit in the begining, with some diazepam and anti depressents, im not really sure which one helped or the combination, but i havent progressed much since........after a while i give up on vrt as i dont see much improvement but maybe thats why....have to keep on daily.....i mostly have some kind of aura, this can be a vivid bright spot of light central in vision, less so a flashing zig zag that grows then disappears, i dont always follow with a headache....if i do its over one eye and i feel nauseous.....bright light can bring on headache sometimes i get a false sense of light perception the room can look very dim to what i know it to be. i have also had bppv since i was about 12....so that could fit in with what wowwweee was saying. the hospital think that a virus triggered off this dizzy and the mav is stopping complete compensation.....it is hard when u have a family they cant understand why you dont do certain things, i cannot bring myself to travel very far so that affects plans for holidays, they like going abroad but i cant do that for now, they dont fuss to much tho.....my youngest was five when i started with this i have 4 daughters..........hope today is a better one

xxx

hi brina
i constantly have a visual disturbances.The one thats there all the time is lots of sparks of light that wriggle around very quickly,I too have the zig zag one that starts in one spot in my eyes then slowly joins round to make a circle.This leaves me with limited vision for about 20-20 mins,i dont always get headaches with these either.
Its some comfort to know im not the only one going through all this.

I too cant travel far and wouldnt even consider getting on a plane as they affect my ears when im well,so god knows what they,d do now!!!

one thing that has really hurt me through out this is that my family i.e my mum and sisters dont help or support me in any way.My mum lost interest about a month into all this.None of them ask me how i am or how im doing they just,they always expect me to go round there houses all the time.Sometimes i feel to ill even to do that.They tell me i cant be feeling that bad.Once my mum bumped into my partner when he was out with his mum shopping,instead of asking how i was she just told him he fusses over me too much!!!He couldnt believe it.When he told me i was so angry i rang her up and asked her why she said this.She couldnt answer,she just kept stuttering.I told her to keep her nose out.One of my sisters doesnt ring me anymore and the other one just tells me to think positive otherwise i wont get better then changes the subject.None of them have ever had problems with there ears so they have no idea what this dizzy monster is like.I havnt spoken to my mum since.my partner is wonderful about this as he has had labs and knows what it feels like.
Hope your feeling ok
take care and sorry for my rant about my family
xbombshell31x xxxx

Hi,

Your posts about depression and lack of support really touched me. I am very blessed to have loving and compassionate family and friends, who always support and encourage me, but also understand my limits.

Most people equate illness or a limiting condition with how a person looks or acts. Meaning, sometimes if they can't "see" the problem, or put themselves in your place, chances are they may not have the tolerance or capacity to understand how hard you are stuggling. Sadly, that's "human nature" many times. For some people, it may not be a deliberate cruelty, but rather a way for THEM to deal with the sadness and frustration of seeing a loved one struggling, or a true lack of understanding that makes them appear incompassionate.

One VERY important thing when dealing with something so limiting and impacting is to empower yourself as best as you can, inspite of (or despite of) lack of external support.

The bottom line is that for now, your experiences and life changes as a result of your head symptoms are a part of you. People are going to have to like you, love you and accept you JUST AS YOU ARE RIGHT NOW. But even more than that, YOU are going to have to like yourself, love yourself, and accept yourself JUST AS YOU ARE RIGHT NOW. You can't MAKE someone else be supportive or compassionate, but you CAN state your needs and let people know your fears and limitations. And although you can't tell how someone will react to that, you CAN and DO have control how YOU react to your current situation, and that includes how you react to others' who are not providing you the support you need and deserve. As with any impacting trial, it canmake you feel completely out of control, and that can spiral into all areas of your life.

Everyone responds differently to impacting events in their life. Peoples' reactions and coping skills are dependent upon many factors. Some people may be able to put things into perspective faster than others, while others continue at a slower pace to reach a calmer level. The only thing that matters is that a person tries their best to persevere, accepts their limitations and know when to call it a day and goes easy on themselves when they do.

When something like this occurs, a person goes through many emotions as they try to cope with not only their condition, but every day life. Suddenly, even the tiniest things that people take for granted (like a simple walk to get the mail, or ironing a shirt) becomes a tremendous tedious undertaking. Minutes can seem like eternity. Nights and days can drag on because you know the next day will be more of the same.

Trying to get through a normal day's routine becomes more of a survival than routine, and all of a sudden your daily patterns are disrupted along with your social, professional, and even your sexual life. ALL areas are impacted.

So it becomes a vicious cycle: trying to get the best diagnosis (and all the stress that comes with THAT), trying to still keep up with the daily routines (whatever they may be), trying to feel better, trying to please friends and family, trying, trying trying. And sometimes all trying does is make you tired of trying.

Add to that the fact that you are now a changed or different person. You can't help but be "marked" in a way that ONLY those people who have experienced the same feelings, sensations, and fears can understand. There is no getting around the fact that even if your head symptoms cleared up tomorrow, you will always be changed because of that experience. It will be easier at some point to feel compassion for someone else who may be experiencing the same or a parallel situation, and you will learn about yourself that you are stronger, even in your worse moments, than you thought you were.

Go easy on yourself. There is enough pressure in just dealing with your symptoms. Know that you will have moments where you simply cannot do something. Whether it's out of fear of your symptoms or because of the symptoms themselves. It's okay to have those moments. For some people, those moments are MANY and can run together. Allow yourself that.
Accept yourself. You have symptoms NOW. And you are a person dealing with symptoms NOW. You can't turn back time or move it forward; you can only live in the present, with what you have to deal with right now. Now is all you have, so love yourself and celebrate who you are, despite your limitations. Believe it or not, a challenging time can give a person the opportunity to find out how they really work under personal pressure, can allow a person to grow from their struggles, and sometimes a person is fortunate enough to have their eyes opened in a way that take other people years to "see the light".
Allows others to accept you just as you are right now. Either people will deal with you or they won't. Sometimes you just have to tell it like it is for some people. It doesn't necessarily mean ultimatums, but you have a right to how you're feeling about your symptoms - whether someone feels that you should a) be having them or not and b) be reacting to them as you are or not. Don't apologize for having to deal with a physical situation. You are a worthy person despite your symptoms - if someone can't honor that part of you during a challenging time, then it's time to cut loose or find ways to strengthen that relationship.
Be tolerant of others. Granted, for some people, they may not be simply willing to or concerned enough to listen to how things are for you. But for many others, a seeming lack of concern may be because they are instead uncomfortable, frustrated, scared, nervous or ignorant over what you are going through. Some people simply may not know how to handle something like that. You are not the same active person you were before your symptoms, and that will be a big change for the many people who knew you to be different previously.
Take care of yourself. You decide whether to be a glass half-full person or not. Depending on how long you have been dealing with your symptoms, you may feel a host of emotions - anything from anger to sadness to grief to despair, etc. It's normal to have lowered feelings. However, it's good to be able to keep your thoughts and feelings level and in perspective, which is sometimes difficult to do when dealing with something so scary, limiting, and impacting. Not only can anxiety and/or depression be limiting in itself, it only adds to the weight of the stress you carry daily from dealing with your symptoms. It's important to have good mental/emotional health all the time; moreso when you are dealing with something to impacting. Having good coping skills permits a person the ability to better deal with whatever comes their way in life - if you feel you need some guidance or help in mentally dealing with the worries and life changes that come from dealing with such a depressing and limiting condition, grab some counseling. Learning stronger or different coping skills (ways to react and problem solve) makes a huge difference in how a person looks at and lives their life - even with a limiting condition. For some people, counseling can be a literal life saver.

You will be dealing with depression and anxieties - unfortunately, that comes with the territory of dealing with your symptoms. Allow youself these feelings, but learn how to keep them in perspective so things don't continue to spiral downward. You will have bad days and better days. Bad days don't have to mean you always have to hit the floor curled up into a ball. There are many things in life to be grateful for and loving over. And it could be so much worse.

You are definitely NOT alone. I am living proof of that. xo

hi wowwwweeee,
thanks for the support and advice.One part really stuck out(people will have to love,like and accept me for just as i am right now)Thats so true.Trouble is i dont think they do and as for liking myself well i cant.I hate myself for all of this.Im racked with guilt because of my 14 yr old daughter and my partner having to put up with me.
Im very angry with my family at the moment.Im not talking to my mum at the moment.If someone hurts me i block them out of my life.All my mum ever seems to do is get angry with me over this.One time when she was supposed to come over my house to drop my b-day card in i had to cancel because i felt so ill.I rang her to say did she mind.She got so angry with me and the tone in her voice changed.I hate her now.

One good thing is that my neurologist wants to put me on some new meds,Trouble is that the side affect is depression so he,s got me to see a psychiatrist because he thinks my mood is very low at the moment and doesnt want to make it worse.So im seeing the shrink on 17th august.Bit scared about that because whenever i talk about all this or how my family are i find it hard to breath and swallow(kinda panic i suppose)
Well thank you once again wowwwweeee you,ve been great,you brought a tear to my eye!take care
xbombshell31x xxxx

Bomb,

Of course you are depressed. No small wonder why. Ontop of scary and limiting symptoms, it's interfering with you routine and raising your child. Add to the a primary family member who isn't supportive - well, of course you are going to feel anxious.

Most people who deal with disequilibrium/imbalance disorders also deal with panic or anxiety on some level. You have already made an important discovery; that there are some things that cause you to feel panic symptoms immediately - it's important that you find a way to mentally deal with that, so you gain a better control over your emotional health.

I had a full straight year of full blown panic attacks when I first started out with my symptoms. For three of those months, it left me literally housebound. My symptoms were so severe that it caused me full blown panic to be left alone, or even shower in a part of the house that wasn't occupied. I understand how you are feeling, although our reasons for panic symptoms are different.

It's difficult, but try not to dwell on your hateful feelings towards your Mother, and/or your guilty feelings surrounding your daughter. Currently, it is what it is - you are not doing this to yourself. See your symptoms for what they are.

I can see how your symptoms can bring to the surface issues that run deep, like family issues. That would be a good thing for you to talk about with a counselor (neutral party). Stress CAN make symptoms feel worse - and of course you are dealing with so much - it's important that even if for now you cannot find any alleviation in your symptoms, that you find other ways to take control WHERE you can - like outside guidance for the things that are causing you emotional pain and anger. So glad to hear that you have made an appointment to talk to someone - it WILL be beneficial.

Women often time see themselves in the role of pleaser or care taker. Its understandable that you may be putting an extra burden on yourself in these roles right now - honestly, having been there, you simply cannot expect yourself to do everything right now. This is not your fault.

Medication options are varied, and some people will try anything, and others will try next to nothing. I have trialed a few medications, one with GREAT success (called Amitriptyline) but I had an allergic reaction to it, so I had to stop taking it. It wouldn't hurt to try something even if the side-effect is depression. You can always stop it, and you are already feeling low, so it can't hurt at this point. You are smart to keep on top of that though.

Wishing you a peaceful night. xo

to wowwwweeee
thanks for listening to me ranting on about my family.Its nice to have someone to listen.I dont want to keep burdening my partner with all this as he,s been so good about me being ill.He,s been with me every step of the way.

I know what you mean about not showering when your alone,in the begining of all this i wouldnt bathe unless someone was in the house close by,I also hated being left on my own.That was before i knew what was causing all these symptoms.I had convinced myself that i had a brain tumour!!! I was really stressed back then.
I have tried amiltripyline but it didnt work and i was on quite a high dose.It made me very sleepy too.Have tried verapermil too.Not sure what the name of this new med my neurologist wants to put me on,but i will give it a try.He reckons it will really help me.
hope your not feeling too bad,take care and once again thanks for listening
xbombshell31x xxx

hi xbombshell31x

i sure do understand how u r feeling about your family, i am glad tho that your dh is supportive of you in this, he is the one closest to you and sees what is happening, i am told by my mum , who can really aggravate me at times on this, is that I AM very defensive, we end up in an argument sometimes because i might mention " i cant believe i still feel like this 2 1/2 years on" as far as im concered she comes out with a stupid comment and i feel angry hurt and a constant moaner, which i dont feel i am, i barely mention to anyone these days....and thats the way they seem to like it. i dont really beleive family are that bad but cant comprehend something other than a fleeting lightheadedness maybe, and is out of their control too, they dont know what to say anymore.....my mum says if she doesnt mention it she is not resurecting it and maybe ive forgotten it......lol....if only....
what gets me is they are easy to relate and sympathise with someone elses cold and say to me oh they must be feeling rotten really going through it.....id rather have a cold than this. u know it will eventually go, could your dh approach your mother and get you together again, or perhaps compile a letter and some detailed info about what u have....and others like messages on here. it is very draining when things arnt as they should be, its enough to contend with this dizzy stuff . i know about the depression i got it really bad at the start of this and been on a/ds since tho lowered the dose....i didnt want to be on meds but needed something quick....would rather had the cbt only but it took over a year to get that.... r u living in london?
hope today is less dizzy

xxxx

hi brina
thanks for the response.I do live in london.Im being seen at the national hospital of neurology in queens square for all of this.I have had session of CBT but because my symptoms are too severe he doesnt thinks its fair to get me to do things at the moment.He was very nice though.Going to see a shrink on 17th aug as ordered by neurologist.Have got appt with my neuro-otologist in sept.

As for my mother,i think its best if we dont speak.Shes not the kinda person who you can talk to.I have my older sister on my case for not talking to my mum.I told her to keep out of it.My partner is disgusted with my whole familys behavior.
My mum thinks i can just carry on as normal.i.e go shopping.I,ve never been close to my mum and this has just made things worse.She has no understanding of what this feels like and im not even going to waste my breath in telling her,it upsets me too much.Shes a very hard person.Im just lucky i have my partner.I couldnt wish for anyone better.
My sisters are just as bad,One of them has stopped phoning me.The other one just lectures me.(Im the youngest you see)
do you have any sisters or brothers??What are they like with you??
Do you come from london???
hope your ok,take care and thanks for listening
xbombshell31x xxxxxxxx

hi xbombshell31x

im glad u have a very supportive partner, you are fortunate for that but not so with rest of your family and u know the best approach to take, still hurtful tho, i have a brother who means well but he never asks how i am, thats the way he is, he wouldnt doubt what you have but would find it very difficult to relate and for them its like if they dont mention it , you kind of havent got it, my inlaws spec m.i.l. never asks how i am and has always reacted like its 'nothing' and her problems are far worse than yours, she isnt sensitive or intelligent enough to understand......i live close to london, inbetween romford and lakeside takes me about an hour to get to queens sq....i used to live at plaistow......i have my next app in september.....

xxxx