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Recovery?

Hello. I do not have MAV but I believe my mom has this condition. I am 99% convinced she has it - waiting for ENT and neurotolgy appt.

For those of you guys living with MAV - I understand this is a chronic condition and a lot of trial and error, but are you guys able to lead a relatively “normal” life? I would like to see her be able to drive again, go to the grocery store, and generally live a good life. For now she is so dizzy she is almost bed bound. She can move around some around the house but really not the best quality of life.

I think she is willing to try meds at this point. I know she has used amitriptyline in the past for regular migraine prevention (few years back she used it for like 3 months) but since then her symptoms have really warped/evolved to MAV.

Any insight?

I am trying to understand what she is going through and reading some of the stories out there my heart goes out to everyone suffering with this condition (i’m sure there are MANY people out there who is currently being ignored/misdiagnosed - as we were initially, before we took matter into our own hands) - but since I do not have MAV it is really hard to understand …

Thank you.

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Hi @Bebop, God bless you for trying to research and learn about this affliction to help your momma! She is very lucky to have you :sparkling_heart: Indeed, it is a life changer. Everyone’s story is different but one constant is that this horrendous disorder is almost every evil adjective I can conjour.
However, we are a lucky bunch in many ways since once we have a diagnosis… there are many medications that can help us lead normal lives.
As you know by now, getting the diagnosis is one of the greater challenges. Another challenge is finding a doctor who knows MAV and is willing to put in the time and energy in treatment.
Treatments vary by individual and unfortunately there’s not one that works for all.
There is a category on here that is called “success stories”… now, one thing I have learned since joining this forum is that there are a larger percentage of people who do not post their successes, they just go on with their new-found lives post-treatment.
Many of us here are pretty well controlled with medication. Some of us are doing diet only and some of us are still chronic hoping for the right cocktail to work.
I am in the “controlled” category myself, I have been taking Amitriptyline since Christmas Day and have had great success with it. I am not 100% but I am close comparatively! Most people don’t know I still struggle, my struggles are now brief and pass quickly compared to (like your mom) not being able to drive, shop, do laundry, sweep, mop, sleep, shower… well, I could go on. It is quite debilitating in almost every aspect.
When is the neurological appt? Has she had any testing done thus far (caloric, MRI, VNG etc)? Best wishes!

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Thank you so much for ur response. She just got her balance test done today actually and basically the audiologist said that she does have some mild unilateral vestibular dysfunction (waiting for the actual results) but likely not enough to explain the extent of her symptoms - hence I think she has more of a MAV picture (and given her history of crazy migraines). However, I am open to other diagnosis, do not want to get locked into a diagnosis and miss something.

Researching this disease has been like a full time job since it is SO complex and convoluted and not much concrete info - and I’m in the health care field and researching diseases are part of my daily job!!!

How did u know and when did u know that Ami worked for u and at what dose? Also, did u feel the constant “head pressure” and fatigue that my mom seems to deal with. Plus the weird visual issues?

Btw we do have appt with ENT this thurs but I’m not too hopeful he will know much. I have also preemptively schedule a private consultation with a neurotologist next week.

Thank you again.

Isn’t it bizarre that thee is such a lack of good information… and yes, the symptoms are so varied, it’s difficult for Drs to diagnose.
I was diagnosed initially with BPPV, like many if not most Vestibular patients are. All my symptoms just kept escalating, I kept going to my GP and was given the same BPPV diagnosis. I then made an appt with an ENT, which included a brain MRI, VNG and Caloric testing. My caloric test showed 79% right side vestibular disfunction. He said it would heal in time, go about my life. I then started Vestibular rehabilitation and did that for the next 3 months. By this time, it was nearly a year of my life that was nothing short of hell on earth. All of my symptoms were worse than ever: including the horrible visual issues (photophobia, seeing stars, visual snow), tinnitus, constant vertigo (while standing, laying, sittting, kneeling, sleeping), no more than a few hours sleep a night cumulatively and intense headaches.
I then got into see a otolaryngologist who is a Vestibular specialist and director of the Dizzy and Balance Center at Barnes Hospital. He diagnosed me with Vestibular migraine straight away. I finally had a real solid diagnosis after a year of heartache and fear!
I started 20mg Ami on Dec 4th and went up 10mg weekly to Dec 25 finally reaching 50mg, which is the dosage he wanted me at. I began to feel improvement within the first two weeks though. By 30-40mg, it was significant and now at 50mg for over 4 months, I am an average of 80-90% better! I have bad days still… but they are not common and my bad spells are brief. I don’t have to wear migraine glasses to grocery shop anymore (Axon Optics are wonderful and would probably serve your mom very well… they were life savers for me!), I don’t wear earplugs everywhere anymore, I can do all my chores (sweeping and mopping were the worst with the motion) and praise God… I sleep through the night now! I still have headaches, some dizziness and stability issues… but none of these are things that prevent me from doing the things I love. I am SO PLEASED to hear your seeing a neurotologist, this is where I think you’ll find many of your questions answered. You’re such a great advocate for your mom, I am so happy for her that she has you… I can honestly tell you, MAV has been the biggest life changer for me. It’s so wonderful that she has you to support her. MAV or any vestibular issue makes a person feel very alone and misunderstood, since heck, we cant even understand it ourselves!

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I appreciate your response. It’s been terrible for me to watch my mom like this. At first she was also dx with BPPV! After taking a lot of meclizine she ended up in the ED with what I think was a bad reaction to the drug or maybe even anxiety. Of course all her tests were negative and she was dx with BPPV and sent on her merry way saying it’ll go away. Soon thereafter she kept complaining of these weird head pressure and visual symptoms and went to a neurologist who said she was depressed and anxious and we pursued that route for AWHILE which is where we wasted a lot of time. While at the time I was some what convinced that she had depression and anxiety as a result of BPPV/going to ER in an ambulance, it was SOO weird to me that she couldn’t watch TV or use the phone. It didn’t seem like she was not interested, it seemed like she was actively AVOIDING it - don’t most pple stare blankly and endlessly at the TV when they are depressed (?). Anyways after many months of searching I randomly came across MAV and now I think we are finally pursuing the right path.

Funny you mention the axon glasses, I actually ordered a pair of theraspec for her to try - they will arrive thurs. I am also going to replace all her fluorescent lights in the house if she has any. I really hope those glasses give her SOME relief. I am also looking into noise canceling head phones.

Anyways I have learned a valuable life lesson from all this and I hope my mom gets to the point u are at soon!

Thank you for your reply I honestly appreciate it a lot. I have also felt very hopeless but am getting a bit more hope today.

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Hi, and welcome. I’m UK based and can relate SO MUCH to your mother’s situation. She sounds much like I Was. Notice the use if the passed test so don’t lose hope.

Firstly I must congratulate you on your attitude. The way in which you are trying to gain a deeper understanding of how she’s actually feeling is wonderful. Quite amazing. It’ll prove very difficult unless you’ve experienced something similar yourself, possibly motion sickness but your attempt is commendable. The effect the whole condition has is very difficult for an outsider to grasp. But it’s great you are trying and trying so very hard.

Very typical I’m afraid. I’ve bern bed bound with it too. MAV/VM is a migraine variant balance disorder and people do lose the ability to stand with it. I have. ‘Normal life’ I’d say with luck yes she will but it may take some time and I’m talking more than a few months.

‘head pressure’ is so very common. ‘Weird visual issues’ also but I’d say slightly less so. It’s all signs of a brain in a hypersensitive state as a result if whatever is causing the migraines (nobody knows what that is, in fact I’m sure it has many causes perhaps not as many causes as people affected but a good many).

Misdiagnosis is very common. I was misdiagnosed with BPPV for twelve years!

Visual vertigo often makes it impossible to use any screens. I was like that many months. It gives you similar symptoms to grocery stores. Too much visual stimulation owing to hypersensitivity.

You sure have. Your mother can be proud of you.

Spot on. The whole experience is more than enough but many people get told it’s ‘Anxiety’. At one point I was.

Still, all hope’s not lost. I suspect your mother will end up on preventatives medication for a year or so, maybe much longer and everything should improve. Amitriptyline or a betablocker (Propranolol’s most popular) are two really good preventatives particularly for visual stuff and photophobia. Any anxiety should reduce as the symptoms come under control. Helen

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Hi Bebop!

So sorry to hear your poor mum is suffering like this! This condition really intrudes on life like nothing I have ever experienced before! You sound like a lovely person, helping your mum like this! I salute you! :blush:

I think you’re certainly on the right track by going to see the Neuro-otologist if any one will be able to diagnose MAV its them or a Neurologist. You mention she’s tried Ami? Do you know what dose? Has she tried the Migraine diet? I say all of this after years of suffering I’ve stated the 2 above and appear to be getting some quality of life back!

I think its a fab idea to change flourescent lights in the house and the migraine glasses will help her tenfold! (Currently typing this in mine) :+1:

I do believe with meds, diet and perhaps some VRT she will be able to get back to her old self. Can I ask are you in the UK? I understand your frustration from the anxiety diagnosis as I too were diagnosed with the same and sent packing 9 years ago now! If I hadn’t have been persistant with the GP and have gotten nowhere! Keep pushing on for a diagnosis for her because once thats in the bag healing can begin! :blush:

I mention the migraine diet because if I could turn back time that would have been my first port of call before starting meds - im in a situation now where I do the diet, but Im on meds so it is very difficult to determine what is actually helping me. I started with the Heal your headache diet, its no picnic and is quiet restrictive but I am sure she would rather do that if it may help. Anyway just a suggestion.

I wish her well :two_hearts:

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Thank you for your response. I REALLY hope she can make progress soon. It hurts my heart to see her so sad and down. I do think that since she found out that there may be something MEDICALLY wrong with her and it is not just “in her head” her anxiety has reduced some. Finally, she is getting some answers. Nonetheless, the problem remain and getting back to “normal” is a process so that kinda sux.

I’m glad you were able find help and now can lead a “normal” life, this is a HORRIBLE disease and as a healthcare professional, I do want to raise awareness in the future re this. Are you able to share with me, or point me to a link where you talked about your own recovery? (if you don’t mind sharing) Any supplements, medication, rehab etc., that has helped you?

Thank you again.

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I really hope the neuro-otologist will be able to help. I did a lot of research and neuro-otologists are hard to come by, even though she lives in a HUGE city (Los Angeles, CA). There are few decent one around here from what I can see (UCLA, House Clinic etc.) however, they take MONTHS to see. If need be, I will also pursue an appt with them as well, but for now, I am going with a private neuro-otologist since her availability is more flexible.

In the past she used amitriptyline 25mg at night for migraine prevention for about 3 months about 4 years ago (she recently told me this) and she stopped because she didn’t have any more migraines thereafter - or so she thought. Hindsight, I feel terrible for not keeping a closer eye on her health status :frowning: Apparently, she was taking ALOT of sumitriptan and NSAIDs to control her migraines. :sob: Everyday I kick myself for not taking notice of this…

I looked at some migraine diet papers on line, the only questionable one i found was that she drinks a little yogurt drink in the morning but other then that i’m not sure if she is on anything major?? she eats the same thing every single day so it is pretty easy to track what she is eating. She has GERD so she is pretty careful with what she eats but i made a list of things she eats and will discuss them with her neuro-otologist.

She is going to get VRT at the end of the month but i looked up like 3 different places around her home that specialist in VRT - only reason why i didn’t get her an appt was to see what the neuro-otologist recommends first but i am having her do some simple eye (VOR??) ones which she thinks (?) helps her, but i did tell her to stop it if she is more symptomatic since we are just grasping at straws here for now.

I am looking into supplements, diet, triggers, preventatives… i wish there was a central location that kind of describes all this - perhaps in the future this will be my project. Have you had success with other supplements? VRT? What medications worked for you and when did you notice a difference? Everything is such a question mark!

Thank you for taking the time to respond to me, I truly appreciate it!

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Do explain to your mother that it is purely a medical condition and her mood is being dictated by the condition which is understandable. It is much underrated by medics in UK because they don’t have any idea of the impact it has on people, families, relationships and quality of life once/if it turns 24/7 chronic. I coped, looking back now amazingly well, with acute episodic attacks that lasted 72 hours after which my balance etc would return to ‘normal’ and I’d be totally without symptoms til the next time but once it went chronic, 24/7. That was a totally different ballgame, a very dark place to be. You’ll find my own history in the Personal Diary section under my username. If in a hurry pick it up from entry posted 28th March 2019 onwards. If you can find any way to use it to further awareness of the condition, which is so lacking universally, you are very welcome to do so.

Just noticed the mention of VRT I’d be very wary of that with unstable (not controlled by meds) MAV and avoid it until you’ve discussed it with her neuro-otologist. They each have their own distinct thoughts on MAV treatments and management. That goes for diet, VRT, supplements, the lot.

Common mistake. As you may have since realised the preventatives just control symptoms, if we are lucky. They are not a cure. There is no cure as such.

Helen

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Hi bebop, tbh I think Helen, Renee and others have given you some excellent advice and insights into this awful condition. I think you’re a very compassionate and caring daughter and so thorough in your research. In my early days of trying to get my head around this condition, I came across this website hosted by the veda organisation. There is a ton of information on it ranging from causes, to vrt to medication so I hope it helps. I’ve not tried ami but I’m on venlafaxine or effexor as it’s known in the states, I’m doing well on it as are many others on this forum. Might be worth adding onto your list of meds to investigate for your mam. Best of luck to you both x

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Hi Bebop,
Welcome to this forum.
Naejohn couldn’t have said it better.

Unfortunately, there isn’t a one fix for all with this condition.
I am too in the under control category.

I was diagnosed with MAV nearly 4yrs ago and was in that homebound state for 3 months and had a relapse the following year for 8wks, but no way as bad as the first.
I’ve tried lots of different meds but the successful combo for me over the last year has been Nortriptyline & Gabapentin. I was on 125mg of Nortriptyline prior to, but it’s only since i’ve been on both together that I’ve been leading a more ‘normal’ life.
I don’t go mad as I do notice the visual disturbance if I try to be too ‘normal’ lol.

Seperately, I have kept to the migraine diet of no Cheese, Chocolate, Caffeine, Milk, Eggs (although I was told recently by one of the guys on here, their neurologist said eggs were now fine and I haven’t experienced anything since i’ve tried), Citrus (which has a big impact on me surprisingly), Chinese, Processed meats and MSG’s (the salt alternative in Chinese and KFC as well as alot of others). Note it did take 2wks for me to get away from the Caffeine withdrawal (full on migraines :face_with_symbols_over_mouth::sob:)
That’s all I have at the mo, although my next stage is to slowly get the Nortriptyline dosage down and off the Gabapentine, so baby steps right now.

I hope your mum gets her diagnosis confirmed and find what works for her.
You’ve come to the right place as everyone on here are lovely.

Best wishes
Helen

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Hello, me again.

Just another questions - for when you guys were in the beginning stages/phases of this MAV and were ill did you guys have continuous/chronic symptom that were there 24/7 and also acute symptoms that comes and goes? My mom has 24/7 symptoms of head/eye/neck “heaviness” or pressure (?) on the left side, left ear fullness, dizziness, constant fatigue, feeling like walking on cloud etc (which goes up and down in severity depending on the days i guess) and then have days when she gets extra dizzy (this is not constant, there are days when she is dizzy all day, there are days when it is more sporadic). She describes this sensation of energy leaving her body and she knows that it will be a bad symptomatic day. Does this make sense??? i’m just so confused with all the weird symptoms… she seems so dejected and down :frowning:

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Hi @Bebop, absolutely on all of the above. There are days with MAV that are immediately bad, even before you open your eyes… you know it will be a bad day. Getting out of bed and into the shower is absolute torture. For me, if the day began like this… it ended like this. There was no repreve through the day at all.
Some days, I would wake and open my eyes and the room wouldn’t spin! I would cautiously raise out of bed and piddle paddle to start the day, shower and get moving without terrible issue. When the bad days happen, they are exhausting and you count down the hours until you can call it a day in hopes that sleep will come and tomorrow will be better. That’s the thing, most of my symptoms were always there, but in varying degrees of hell. I believe your momma is probably depressed by now too… it’s almost a given that all of us, no matter how strong… become worn out by it emotionally and physically. The mental toll is devastating.
Did you make it to the ENT yet and is the neuro appt coming soon?

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Thank you for your reply. I am pretty sure she is really depressed cuz she looks it.
We recently went to:

  1. Neurologist - NOT a specialist, he was nice but so-so, diagnosed her with migraine with complex features wanted to do bunch of tests that I felt were not necessary, wanted her to try getting a massage first and various other things before starting prophy therapy, didn’t like him much

  2. Neuro-otologist - she was very good, she agreed likely it is vestibular migraines but wanted to r/o few things and wanted additional MRI’s (inner ear and spine) which she was surprised no one did before. She wanted to initiated nortrip however, since my mom has been on ami previously she was open to initiating ami. My mom has developed major fear of taking medication due to this condition so last night I cut her pill into quarters and have started her on 6.25mg. So far she said she didn’t feel anything, good or bad. I figure in few days I’ll take her up to 10mg then 12.5mg and so on as she feels comfortable. I know I have to give her time and space to feel comfortable with her treatment … however, having said that this last 10 months have been HELL ON EARTH for me and my sister taking care of our lives but also for the well being of my mom. She is only 62 years young and I feel terrible that her quality of life is SOO poor right now. I just want this to improve!! Few other things they recommended: get her TMJ looked at (may be connection, who knew??), get her stiff neck/neck injury issue looked at - medical massage, physical therapy, and VRT. However, in order to do these things, I feel like some of her symptoms have to subside.

Thank you for your response. It’s been frustrating year, only because i just have no idea how she is feeling.

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I understand completely the fear of medications! I was RXd Ami 3 months prior to having such a meltdown that I finally broke my resolve and started taking it. Of course I looked at the potential side affects and one of the most common is dizziness… how could that not scare me! My resolve broke when my mother had to come stay with me one day and literally had to help me use the bathroom. I cried all day and had a panic attack. I knew then that I couldn’t live another day without fighting back by at least trying the medicine. Thank God I did and only wish I hadn’t lost those 3 months to misery and fear.
My personal opinion on VRT and even medical massage is that until she gets stable, I would not recommend either. It’s a mixed bag here on whether these things help or not but seems the consensus is it’s risky and both can elevate symptoms. I think your on the right track with the Ami. I didn’t find any significant lessening of symptoms until about 25mg-30mg in. Tell her she has a world wide group of MAVers here cheering her on and we are proof of recovery! Stay strong :sparkling_heart::sparkling_heart::sparkling_heart:

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I’m in a very similar situation as your mom since we are just starting meds, I’m scared as hell to take medication because as Renee said for most of them dizziness is one of their side defects and how not to be scared with the possibility of getting worse

I don’t have much advise to give but I wanted to tell you how amazing of a daughter you are, your mom is very lucky to have you.

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Are you also taking ami?

I Were you able to tell at lower doses that there were improvements? Or only t the higher dose? Was it gradual pOr did you wake up one day and feel like things felt better? Did u also titrate slowly like this? As your symptoms improve did ur depression/anxiety lift?
Sorrr so many questions!
Thank you for ur response.

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I’m on nortriptyline 10mg

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