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Specific Illnesses & Conditions VM/MAV
61

Hi, I’m 37 and female and I live in Oklahoma, and unfortunately I live in the allergy capital of the world, Tulsa. Anyway, my history has always been that I’m very prone to motion sickness, so much that I usually always drive anywhere I go. I also have a history of migraine, but that hasn’t been too bad in the last few years. Probably about 6 or 7 years ago, I started getting dizzy, just short little periods, nothing much. Starting getting worse so I made a doctor’s appointment. He couldn’t tell anything was wrong. Happened again, went to an ENT, all tests came back normal. Then one morning I woke up with the house spinning a hundred miles an hour and the vomiting started. My then husband took me to ER and I remember the doctor saying, “We’re going to get to the bottom of this,” Well 10 hours later, an MRI, and several other tests, they didn’t get to the bottom of it either. So I went back to my regular doctor who said he was baffled, but diagnosed me with BPPV and gave me anti-vert, and it did gradually get better.

Fast-forward to yesterday, I’m still very prone to motion-sickness, I have a new husband and everything’s going good. I occasionally get dizzy laying on my back in bed or in the tanning bed, but it goes away as soon as I set up. Yesterday I woke up with a slight headache, but nothing major. I tried my first yoga class, BIG MISTAKE, 30 minutes in I’m in the fetal position I was so dizzy and sick, they thought they were going to have to call an ambulance. After about 30 minutes of trying to re-group, eating a protein bar and water and cool rags, I felt barely well enough to drive home, but I made it. My headache was getting worse. I knew I probably needed to go to the ER, but I was actually too sick to go. No way was I getting in a car and having someone drive me to the hospital. NO WAY. I threw up and felt better. My mom works in the neurology field and said it sounded like a type of migraine and then it occurred to me, she was right, I had the hand and feet numbness I get with my migraines. So tomorrow is monday and I’m going to call my doctor first thing in the morning to see what can be done, probably nothing, but we’ll see. Wish me luck.

62

I wish you alot of luck “teeirons”!! It is funny how we can go years and dr’s and spec’s cant figure out what is wrong. It floors me. You try to get to the bottom of it but it is a mystery. I hope between your mom and the doc’s, you can get an answer.

I have been on diff things thru the years but mine is mostly coping with my symptoms. I have been getting headaches above my eyes recently and it stays all day along with the dizziness and unsteady feeling and ringing in my left ear. I am going next Tues(because my MRI results came back) and we can hopefully be on the right path!!

I just hope whatever it is, they can put a finger on it and help you out, keep in touch with your results!!

To jennyd- I am trying to find out how to send private messages back but it hasnt happened yet! I am trying to get in touch with the administrator but he hasnt contacted me yet! I appreciate everything you’ve sent to me so far and it really makes me feel better that you share your stories with me!! Hope to hear from you soon!!

63

I actually haven’t been “diagnosed” with MAV, but here is my story…

Mid September 2001, I was shopping and began to feel like I was going to pass out, my face was drooped and my right side wouldn’t hold my weight. Somehow I checked out and made it home with the world swirling around me, only a couple mile drive…I know. My husband took me to the urgent care where the battery of tests began. The theory at the time was that I had a stoke at 34. This was supported by muscle weakness, facial numbness, visual auras and hearing issues, affecting my right side. I’ve since found that that is my migrane. After a bunch of tests, the theory moved to TIA’s, then to depression after all I must be depressed, isn’t that the catch all diagnosis?

A week into testing I freaked, and had my first panic attack. Started beta blockers, stopped them 2 weeks later when I figured out that what it was.

Months of testing went on, inner ear…no…MS…nothing on the MRI, CATscan, or PET…depression…still no, but I got an anti sezure medicine which a major side effect… lets all say it DIZZINESS! Must be depressed.

Ok, I bit and went to the psyc. Saw this 20 year old “dr” he asked the standard questions and after about 20 mins with me, says “your depressed here’s a drug to make it all go away.” My response to him was, “Depressed, maybe when”, I should note that were were a military family at the time, “last year when we were broke, had to tell our elemetary aged kids that we were moving 1500 miles away from the only home they remembered. Or the 5 years before when my husband was deployed for 4 of it.” I told him he needed to live a little more (some) before he would have the ability to determine if I was depressed. He changed his diagnosis I was now in need of an anti-depressant that would help me control my anger. Needless to say I didn’t take his drugs and ratted him out to his boss, who said "If your depressed your hiding it REALLY well.

More test…looked at MS again, I was ok with an MS diagnosis, at least it would have a name…not enough history and symptoms to be MS. The whole time I’m stumbling around like a drunk, can’t walk, can’t drive, can’t watch the kids play. I was beginning to think depression was a good enough name for it.

Finally about 6 months in, my neuro, head of Neurology of one of the largest miilitary hospitals in the US, pulled out a medical book and said, “I think you have this”, pointed at the page, and continued, “it’s Rare, but nothing else fits now if you were depressed it would be a different story.” and represcribed the dizziness causing med from earlier. No I didn’t take the drug more than a couple of times, maybe the dizziness would counter act each other. You know one spins left the other spins right, I walk straight and don’r pass out of throw up…No it didn’t work that way.I suffered through, my symptoms subsided untiil the next fall…sounds like MS again…

I just learned to identify the syptoms and kept a diary. A year os so later we moved again 4500 miles across the globe. I was symptom free for about 2 years then one day I woke up to a spinning bed. “Crap”. So the whole process started again, at least me proving I wasn’t depressed. My new dr believed me about all the other test results, must be depressed. Then I got into a migraine study and the military hospital, got my first dose of prenisone, what a wonderful drug, (no sacrasm)! maybe because I am not reliant upon it. That was nearly 3 years ago, guess what started today…

With out an active prescription for immetrex I went to the nearest urgent care, got it renewed and a coruse of prenisone, which explains why I am still typing instead of sleeping. BNy the end of this course at least my house will be clean, I expect to crash hard in 6 days, but without the dizzies.

My best to all of you…some of your stories make me feel lucky…my migraines rarely include any kind of pain.

Brenda

64

Hi Brenda, your story is Reminiscent of other people’s stories here.
Especially being told time and time again we all have anxiety disorders or depression. As you well know, who wouldn’t after having such a debilitating disease for so long with no help.
This treatment goes hand in hand with most invisible illnesses.
I just wanted to mention, to beware of using triptans for this type of migraine, as it can cause complications.
I’m pretty much a newbie to this forum and don’t offer much in the way of medical help.
But there are some wonderfull people here that have a wealth of information.
I know you’ll find comfort and understanding here,
I’m sorry you’ve had such an awful time of it.
All the best to you Brenda
jen.

65

To Helen- Sounds like you’ve been thru the wringer like the rest of us. We go thru so many dr’s and I thought they were supposed to know it all but…

It sounds like you’re doing ok for now and your house sounds like it’ll be pretty clean thanks to your meds!!

I am not sure how much you’ve read here but I seem to be trying to just cope with my symptoms right now. They have been a long time trying to put a finger on what I have. They have thought depression, allergies, inner ear issues, vestibular issues, sinusitis, bad head cold(yeah right), but havent really figured it out yet. I am trying to get a name for it and hope I’m on the right path this time. I recently did the MRI thing again per my new doc’s Rx.

Take care and thanks for sharing. Best of luck to you and quit moving so much!!

66

Brenda,
What an interesting story–many neurologists give a course of prednisone to break a prolonged migraine. It’s really interesting and hopeful that some imitrex and a course of prednisone breaks your dizzy/migraine cycle.
It’s just too bad that you had to suffer before you figured it out.
Kira

67

Hi,

I am a 24 year old from Calgary, AB and have been suffering from what I think may be MAV for the last 4 years. Here is my history:

Childhood
-history of chronic inner ear infections & frequent car sickness

February 2004
– working first full-time job as an intern
-diagnosed with labyrinthitis
-severe dizziness, nausea, visual disturbances, balance issues
-possible connection with fall from horse?

Feb – June 04
-Two Sinus x-rays done – something showed up (shadow)
-CAT scan of head/dye - Normal
-prescribed SERC, nasal spray
-Referred to ear, nose, throat specialist
-Slightly high pressure in ears
-ENG test – Normal
-Ear tubes inserted June - didn’t help
-Tried many different medications (Ativan, Gravol, anti-nausea)
-Naturopath – found slight food intolerances to many foods, x-syndrome
-Still chronic dizziness at this point

Jan 05 – Present

-Regular chiropractic care/now with NUCCA doctor
-Tried acupuncture briefly – possibly triggered migraine attack (ITP)
-Regular Massage & Naturopathic therapy
-Craniosacral massage
-Some physio for jaw pain
-Went to Dizziness and Balance clinic – tested for crystals, slight left eye flickering
-Referred to neurologist – diagnosed with no-headache type migraines
-MRI of head - Normal
-Started on Propranolol ‘05 – until Feb ‘07
-Stopped Propranolol for 3 months – symptoms worsened significantly- started again

Current Symptoms
-chronic dizziness and disequilibrium in the form of a “rocking” sensation when still
-constant imbalance, and/or movement-associated disequilibrium
-sensitive to motion of the environment and to busy environments
-poor visual acuity and other changes in vision, visual “snow”, wavy/vibrating/unfocused
-nausea and severe motion intolerance, car sickness
-stimulus overload in busy places, unsteady vision
-brain fogginess
-a few episodes of heart palpitations
-feeling of being pushed – lasting a few seconds – a body rush
-burning feeling in back of head, base of skull
-sinus pain/no drainage or stuffiness
-neck & jaw tension –at times severe
-anxiety
-symptoms usually worse at work/overslept
-propranolol eases severe end of symptoms, decreases nausea
-two “true” migraines with aura, right eye blind spot, flashing lights, confusion, unable to speak, tongue/right arm numbness, followed by pounding headache
-nausea/unsteadiness while exercising
-burning feeling and pressure (like a band around my head)
-often right-sided
-pain medication (even Advil) creates bad pain in sinuses
-numbness in nose, right arm tingling/pain

I was recently accepted into a Migraine Clinic at a local hospital. I’m excited to see another neurologist and to work with a team that is focused on migraines…however I’m skeptical since I’ve tried so many other options. I still see a massage therapist, craniosacral therapist and a naturopath in hopes that something “natural” will work. I don’t really want to continue on with propranolol since I’m starting to notice the side effects more such as fatigue, hear palpitations, cold hands and feet, etc. I just got back from a vacation in Maui and I had a lot of trouble with car sickness and generally feeling terrible some days. I don’t want this to affect me for the rest of my life…

68

Hi everyone- my name is Amanda and I am 29 years old. It is so great finally finding out that there are LOTS of other people out there who are just like me!!! 3 years ago I had a 1 off fainting episode and landed on concrete, fracturing my skull in a few places. Nasty injury from one faint! But I do consider myself lucky given how well I have come out of it.

Among other issues I had BPPV for about a month after the injury as well as migraines which were treated with propanalol. I stayed on the medication for 3 months after the injury at which time the migraines had resolved. The BPPV was fixed with the epley manouver and has luckily not recurred. Flash forward 6 months from the injury and I was doing really well. I decided it was time to start back with some exercise and slowly increased my level of activity. Then one day I woke up with a very different sort of dizziness. Any turn of my head caused me to feel nauseas, woozy/ dizzy and unsteady. I ended up moving around like a robot in an attempt to prevent this. At its worst I had to walk holding onto someone/something because of the unsteadiness. Doctor after doctor misdaignosed. All of the tests were coming up normal despite my severe symptoms which had now lasted for around 4 months. Even the consultant neuro-otologist at Queens Square Hosptial in London said it was some sort of peripheral verstibular disorder of unknown origin. I started vestibular rehab and showed improvement, which was encourgaing. About 6 months on and I was feeling great, despite avoiding exercise for fear of flaring up the problem.

This pattern went on for the next few years. I would feel good, start exercising and then it would all flare up again. Every instinct in your body tells you to rest/ not do the exercises etc however I learn quickly that is not the answer! In 2006 I moved back to Oz from the UK and saw a new neurologist who decided it very well could be MAV. I was super sceptical as didn’t feel my symptoms fit the profile (I am an Occupational Therapist and had gone a little research crazy trying to figure out my problem!) however was well up for trying anything byt his stage. I must admit I quite liked the idea of taking a pill that might help!! I started back on Propanalol and have been on it for the past 18 months. Although I still have flare ups, these would last for days rather than weeks/ months. I have also realised that I need to keep up the exercise as if I have a break my symptoms come back when i resume.

I am now in the process of weaning off the propanaol and have to admit I am VERY scared. I would love to know if anyone has successfully come off medication and what the rate of symptom recurrance is??

Thanks everyone!

Amanda

69

Thank you for your stories: they are so familiar
Nstraka–the fall from the horse could easily have triggered some BPPV–head trauma is the number one cause. I can completely relate to many of your symptoms–I get the neck burning as well.
Currently I’m on klonopin and zoloft, with improvement. Check out the Dr. Hain site that Adam has posted the the eMedicine article–there are options to propranolol. I hope you get some relief.
Unfortunately, we frequently need to inform our doctors.
I was considering accupuncture–first appointment tomorrow–but after your post, am rethinking it.
Everyone’s experience is different, but many of us have some degree of this for a while, but it does improve.
Kira

70

My story, by Dogby.

I have a balance disorder. So far, I havent been diagnosed with anything. But I suspect that I have MAV.

My main symptoms include …

  • ataxia - 24x7 - but it gets better and worse
    I often wobble and sway when I try to stand upright, particularly with my eyes closed.
  • brain fog/drunken stupor feeling
  • occasional motion intolerance
  • occasional confusion/trouble concentrating
  • trouble keep my head level. Often me head will sway backwards and fowards. Sometimes, if I let it, it will oscillilate violently
  • trouble with binocular vision,
  • body and head tends to want to “turn by itself”
  • ground appears to rock, particularly with eyes closed.
  • slight oscillopsia - my vision “bounces” when I walk heavily - e.g: walking down stairs.
  • tinnitus

other symtoms (less relevant)

  • right hand trembles (left hand doesnt)
  • previous history of seeing migraine aura - scotoma and heat haze.

the symptoms get better and worse, over a few days, or sometimes in the same day, but I feel “weird” most of the time.
The only time I feel truly comfortable is when I’m lying in bed.

All this started around December 07. The symptoms came on slowly, almost insiduously.
I first noticed a “light headed” feeling.
I also started having “confusion” headaches. I didnt think so at the time, but I think these periods of severe confusion might be migraine headaches.
The imbalance feeling is worse when I have confusion.
When the confusion lifts, the imbalance gets slightly better.

Like many people, I experienced a lot of anxiety when my imbalance first appeared. I had severe panic attacks, which had the effect of making the imbalance feel worse.
I have had anxiety attacks before (many years ago), but these were absolutely the worst I ever had. I was screaming and crying at the top of the voice.
I didnt think I would get through it.
Thankfully, with the help of psychiatrists, I did manage to get on top of the anxiety.

I have been to many doctors. I have been to an ENT, Neurologist, cat scan, MRI, Caloric test, Rotary chair test, hearing test.

The doctors havent diagnosed me with anything, and I’m not even sure they think anything is wrong. I look fairly “normal”. I can stand and walk, and if you didnt know it, you probably wouldnt notice that I sway and wobble. The wobbling is most significant if I do something unusual - e.g. kneel on knees, try to hang up a painting, etc.

The best way I can describe things is what used to be effortless (standing, walking, sitting etc) now requires effort.

I prefer to be sitting down, so I wobble less. When I sit at a table, I rest my head on my hand. I hang onto bannisters and the wall more than I did.

As far as I have been told, my balance tests are within “normal bounds”. I think the caloric test showed a 28% difference between left and right - but apparently this is normal ?

I think I might have mav because

  • the symptoms correspond with mav
  • balance tests are often normal with nav.
  • the cyclic nature of the significant imbalance feeling, together with residual 24x7 imbalance.
  • I think I have food triggers, though I havent fully worked out what they are
  • a cup of coffee often improves the symptoms.

The doctors havent just not diagnosed me - they havent said anything much at all. One doctor told me to “stay away from doctors”
Its very disheartening. How can nothing be wrong, if I feel so bad every day ?

I want to persevere to get a diagnosis, but I’m not too sure what to to ? Seek a second opinion ? Or go back and pester the same doctors again ?

Thankyou for the site. Best wishes to all members.

71

Hi Dogby,

Welcome to our board, your symptoms sound very familiar to many on this board. I’m sorry you’ve been left out in the cold as far as the medical fraternity is concerned. Because MAV is such a ‘recent phenomenon’, many practitioners simply don’t know much or haven’t even heard of it. As you’ve noticed I’m from Sydney and you are too, I hope my recommendation of a suitable neurologist is of help to you. Dr Watson sure knows a lot about the condition, so you will be sure to get a good hearing from him at the very least. He’s booked out to August I heard today, so you’ll need to ring and make an appt as soon as you can, but good luck. There is another neurologist in Sydney, Dr Halmagi (I don’t think I’ve spelt that right!), but both Scott and I think, Adam have seen him and can possibly let you know his details if you would like.

Good luck and much improved health to you Dogby,

Regards Judy

72

Hi Dogby- It does sound alot like what the rest of us are feeling most of the time. I have pretty much the same things you do. I have an all around “weird” feeling all the time. Some days are worse and some are better but i never truly have a great day where my symptoms are erased. I want to wake up someday and say- WOW everything is gone and I feel normal for the 1st time in 6 yrs!! It aint gonna happen! I am coping.

I wish the best for you and it sounds like dizzyblonde got you to the right Dr. I have been coping for a long time and finally got to a point where I want answers!! I am going for an ENG test in a couple weeks and we’ll see what that proves.

Alot of Dr’s state that tests are normal or near that point but they dont understand that if we are a little off that is more than we can take. If I walk down the street, I start veering towards the left and it is nasty when I try to walk with my wife and I keep bumping her or if i’m on the other side I am suddenly 3 feet away from her. I have a feeling of being hung over each day too. I have a headache most days and just feel pretty “unbalanced” and have a hard time carrying on a conversation because I lose my thoughts.

You are not alone out there and I hope whatever people say to you, it helps at least a little. Good luck and keep in touch!! And “HI” to jennyd- I hope youre still out there and feeling ok!! Gary(talk to me…)

73

Hi Dogby,
I’m from Brisbane,
I just wanted to welcome you!
You’ll find some wonderful people here.
Had some good sound advice from this site, and I’m feeling a little better because of it.
I also have 24/7 brain fog.
It’s hard to snap out of it, that’s for sure, and its worse than the rocking.
Anyway just saying hello.
jen

Oh yes! And Hi Gazza.
hehe.
It’s been a busy week, for me and I’m resting. Talk soon. jen
:smiley:

74

I’m a 25 year old female. Always been healthy, have never been the hospital - except to have my son. The symptoms started July 2006. I started noticing a few symptoms such as really bad spells where I would turn white and almost pass out. Then I would have a few dizzy spells. But all of this was few and far in between so I just kind of ignored it and it didn’t bother me too much. Fast forward to probably a couple of months later when they came on more frequently and were worse. Currently I have dizzy spells everyday and if I’m not having a dizzy spell then I just feel almost out of body, like I’m going to float away, unable to focus, brain foggy.

My symptoms are:
Lightheaded, dizzy
Nausea
Off balance - almost like walking on a boat
Minor Headaches
Neck sore, like I slept on it wrong but every night!
Pressure behind and between my eyes and also the top of my nose because of sinuses(?)
Light and noise sensitive
Lately I have felt my left hand get a tingling sensation that doesn’t last for very long, a few minutes maybe.

I have had lots of blood work done, EKG (numerous times), 24 Hour heart monitor (twice by 2 different doctors), Echocardiogram, Stress Test, Month Long Heart Monitor, Thyroid Checked, MRI, EEG, Glucose Test, 48 hour seizure monitor, Audio VNG. I am currently seeing one of the best balance doctors in the U.S. He ordered a MRI with contrast dye and had me in physical or balance therapy. I tried the balance therapy for about a month and got no relief from it.

I haven’t tried a lot of medicines because my husband and I are wanting to have a baby as soon as I feel well enough, which is hopefully soon. They prescribed me Lexapro at first thinking it was anxiety and I had a horrible reaction to it. I also tried Imitrex and had a horrible reaction to that also. I don’t do well on medicine. They prescribed me Klonopin to try and I have not tried it yet out of fear. I would like to not be medicated. I would love to find supplements or any other natural method of getting through this.

It helps to talk to people who can relate because doctors aren’t very sympathetic and understanding sometimes and it’s hard for your family to understand. I feel like I’m handicapped almost. I hardly go anywhere by myself with my 4 year old because I’m scared that I’m going to have a bad spell. I so badly want to have my normal life back. It feels hopeless at times.

75

to jbankston- I think I know how you feel- not exactly of course because we’re all in diff stages of this merry go round- but I pretty much have the same syptoms as you. It is unbelievable what the doc’s tell us. I dont really think they know what to tell us anymore.

I just went thru an ENG test where they shoot water in your ear and see if it’s an inner ear issue. I found out it isnt inner ear but it was a mess. The dizziness and nausea I felt was something I wouldnt wish on anybody. He asked me to judge my dizziness from 1-5 and I said 10!! He asked me to judge my nausea the same way and I said the exact same thing.

I hope you get some relief from whatever it is you have. I go thru good days and bad days. Today I am having a dizzy, off balance feeling as we speak. It hits me between the eyes like you say. I think it is a sinus issue too. I also have a school picnic thing with my twins today and hope I can snap out of it before I get there. It wont be much fun if I dont. Oh well!!

I do hope you keep talking, it might help a little to know you at least are not alone out there.

Take care and hi to jennyd! Jen- I read a prior letter you wrote to someone and it sounded like you were going thru some tougher times at that time. I really hope you are ok jen- you have helped me thru some of my tough times and I cherish your thoughts and stories. Take care- Gary

76

Hi Adam,

Thanks so much for allowing us to post our stories… I found this website today while researching migrainous vertigo…

Read alot of the posts and it helped me sooo much to see how others had symptoms just like mine and have endured years of misdiagnosis like I have…

Here is my story…

I have always had motion sickness, since childhood, I am now 50 years old… in my early twenties I suffered my first migraine with aura, no headache, loss of vision, phobic symptoms, brain fog, couldn’t speak, think clearly, numbness in my hands… scared the heck out of me but my mom told me it was migraine because she had suffered from migraine with headache and aura all her life…

Had my first bout of vertigo in my early twenties, woke up spinning, went to my internist who diagnosed me with viral labryhthitis, gave me antivert and said it should go away within a few weeks… it did… never came back until 2001 when I was 43 years old… but all those years I did continue to suffer with migraines with aura (no headache) so bad that I was put on Inderal and that helped, I then tried to reduce stress and took aspirin at the first sign of the visual/phobic symptoms and just learned to cope with the symptoms…

In 2001, at the age of 43, I was coming home from McDonalds and as I was walking into the house, like a flash I was overcome with a spinning sensation and barely made it into the house, I was literally bouncing off the walls, was extremely nauseous, couldn’t talk or think straight, I lived out in the country and I called a friend who came over immediately and drove me to the emergency room, they thought I was suffering a stroke, did C.T. Scan of the brain and monitored me and released me with a diagnosis of “vertigo”… told me to follow up with an ENT… the terrible symptoms lasted about 2 hours… then I was left with what I call residual vertigo (still not right and definitely spinny when I look in certain directions or pan a room too quickly)but not horrible where I can’t even stand up and have to lay in a fetal position completely motionless, the slightest movement of the head made the room spin at fulll speed, my gosh, the most horrible feeling !!!

Followed up with an otolaryngologist, went through a full battery of every test known to man to rule out all ear related vertigo causes, Meniere’s , BPV, viral labrynthitis, the works, everything came back normal… they tried a diuretic, couldn’t tolerate it bottomed out my blood pressure and didn’t help, gave me antivert and that helped the symptoms…
basically told me they didn’t know what was causing my symptoms and told me to just take antivert whenever the symtoms came on and to reduce my stress (I am a trial lawyer, so reducing my stress without quitting my job and going bankrupt was not that easy :slight_smile:

I went on for years just trying to get by… I learned how to adapt, would close my eyes when I would pan across a room, learned not to look straight up into the sky, kept antivert with me religiously and just hoped and prayed that it wouldn’t hit again…

When it would hit my young daughter knew where the antivert was and she would have to climb up on the counter and bring me my medicine because I was so debilitated that I couldn’t even make it to the kitchen to get the antivert… I had an average of two bad spells a year… but had the residual dizzieness every day and still do…

In 2005 I had another bad spell at work, couldn’t even get out of my office chair, human resources had to send a runner to the pharmacy to get me a prescription of antivert … I cried that day feeling so vulnerable…I sought an evaluation this time with an otolaryngologist in Celebration, Florida… again more testing, and no answers… normal hearing, he said we would just treat the symptoms… he thought maybe it was related to herpes of the brain (huh???)… thought maybe I was infected in my 20’s with some form of herpes that affected the labrynth… he put me on Valtrex, didn’t do a thing. … he gave up on that theory,

In desperation I started researching and I found information on migranous vertigo and I went to him and told him that I had a long history of migraines and that I thought I might be suffering from MAV… he said that was a possibility, I suggested that we try the Inderal again since it had worked earlier in my life with my migraines and if it helped with the vertigo that would be a clue that it might be MAV, he agreed (now why was I having to be the one to make the plan and direct my care, I was going to him for his expertise and never once had he mentioned that vertigo and migraine could be associated, surely if he had I would have told him that I had a long history of migraines with aura without headache)…

So I started the Inderal and it has absolutely helped … I have only had 1 bad bout of vertigo in the last year and it was not as severe as the prior ones, but I do still suffer with the daily residual vertigo (I believe from my research that my vestibular function is permanently damaged from the migraines and that is why I have daily vertigo, i.e., permanent vestibular dysfunction after a migraine attack)…

My symptoms:

  1. vertigo (periodic acute spells which i believe are migraines and daily residual dizzieness which I believe is permanent vestibular dysfunction from the prior migraine episodes)
  2. skin gets clammy during the acute spells
  3. numbness of my finger tips when a spell is starting
  4. constant daily fullness of the ears (worse on the right) - feels like I constantly have H20 in the ear;
  5. constant but very slight tinnitus in the ears
  6. history of migraines with aura (visual disturbance, brain fog, NO HEADACHE)
  7. low frequency hearing loss of the right ear confirmed by testing
  8. congestion and runny nose correlates with low sugar and then with spinning sensation

I have found that I can control or ease the daily vertigo and spinning by:

  1. getting enough sleep
  2. reducing my stress
  3. eating right (i have low blood sugar and there seems to be a direct link for me, when my sugar gets low i get congested and then i start spinning)
  4. CHILDREN’S BENEDRYL - it has been a lifesaver, the minute I start feeling like I am starting to spin I take 2 tsp of benedryl and it works great… the neurologist says that benedryl is a great anti-vestibular and does help the spinning… again, why didn’t he suggest this, I had to read about it on the internet from another vertigo sufferer!!!
  5. Inderal - it is a beta-blocker and reduces anxiety and I believe helps prophylactically prevent migraines (both with aura and with vertigo - i either get the migraine with the visual disturbances or the vertigo, never both together - that is why i never correlated them…

Triggers:

  1. stress/nervousness - can set me into an immediate spin
  2. low sugar - will get congested and then i will start spinning
  3. moving objects, spanning a room too quickly, looking up in sky too quickly
  4. staying on the computer for too long
  5. lack of sleep
  6. emotional upset

The latest is that the ENT thought I had Superior Canal Dehiscence and ordered a CT scan of the temporal bones last friday, came back negative just like i told him it would , he continues to go in the direction of an inner ear problem…

I need the name of a Vestibular Migraine specialist preferably in Florida, but I am willing to travel if I have to… DOES ANYONE KNOW OF ONE???

Sorry, so long, hope this helps and God Bless to everyone, it can get exhausting trying to figure this all out … sometimes it seems that the doctors know less than we do… but I will keep on searching until I find answers…

Smiles,

Ali
Groveland, Florida

77

Hi Ali ,
Welcome, I wish you the Best of luck with your quest for health,
There are some wonderful people here with a wealth of information, you sounds like you’re on the right track

You said
(Now why was I having to be the one to make the plan and direct my care, I was going to him for his expertise and never once had he mentioned that vertigo and migraine could be associated, surely if he had I would have told him that I had a long history of migraines with aura without headache)…

This is a common problem most of us have had.
I’m from Australia so I cant answer You’re question about Dr’s over there, but I’m sure someone will chime in soon.

Welcome and All the best
jen

78

Welcome Ali,
sounds like you’ve come to the right place! Your description of your symptoms throughout your life practically mirror those of us on this board. The diagnosis is such a difficult one to get and you definitely need to go see the right specialist. Some here, have said that upon their MAV diagnosis they have literally cried as they felt vindicated for all those years of medical practitioners poking and prodding at them without giving an appropriate diagnosis, all the while feeling sick and desperate. :frowning:

I’m from Australia, like the lovely Jenny so can’t offer a specialist (unless you’d like a trip downunder!!). I’m sure someone will chime in over the next 12 hours or so. Jenny and I unfortunately live on the underbelly of the world so when much of the discussions go on over there in America, we’re still asleep!

Good luck, we hear you and I’m sure you’ll find a MAV specialist real soon and get some real answers and real solutiions!

regards
Judy

79

Ali,

the mayo clinic in Florida has a neurology department - might that be a good place to start?

Julie

80

Hi,
I was just introduced to this site by another member and would like to introduce myself and my story. I am 41 years old and have been having dizziness and vertigo for 7 years now. When it first happened, I got up from bed with the whole world violently spinning. I was sick and dizzy that way for about a week. Saw my GP who told me it was vertigo and that I would not die and to take meclizine tablets to help with the spinning.
After that, I would continue to get this every few months and it would last from 3 days to a week and leave and I would be symptom free until the next time.
During the next 6 years I would have numerous ENT visits and get no answers. I was given diuretics to try and was told it could be anything but it looked like BPPV. I discussed my symptoms with my Dad who has always suffered from the same symptoms and he could give me no advice except to say he has had to learn to live with it. Whatever I had I knew it was hereditary, I just didn’t know what it was. I never fully believed I had BPPV because it never responded to the epley and with BPPV it is positional only. Mine was positional VERTIGO, but the dizziness was all the time. It never completely fit, but I figured the Dr.'s knew best.
Fast forward to October of last year, I had another round but this time it was different. The same on many levels but with it came new and alarming symptoms. Motion sickeness so severe that I could not lift my head from my pillow or turn to look in a different direction. I remember not being able to sit in bath water because the motion of the water made me so ill. I began to have terrible phonophobia and photophobia. The nausea was awful and the motion on T.V. made me sick. All I could do for weeks was to sit in a dark, quiet room. It was horrible. I lost weight and every time I did try to move around I could not get my eyes to follow my head. Bouncing vision tinnitus, ear fullness, constant dizziness and confusing brain fog was my life and everything was put on hold. Some days were better than others but it never left. I had a good Christmas Eve with not much trouble but I remember Christmas Day as a turning point for me. I was talking to my husband when I began to stutter. I was terrified. Something was not right. Later the same day, the left side of my face grew numb and began tingling. My limbs got cold and it was then I knew I had something neurological. This could not be BPPV or menieres or endolymphatic hydrops. I had been on a low sodium diet so that was ruled out.
I was then put through every test possible by my ENT. I had told him about my family history of migraine and that my Dad had the same symptoms as me and he dismissed migraine. I had MRI, ENG ,posturography and the ECOg test. I passed them all. Previously though, during one of my episoded I had an ENG that showed I had a 47% loss on my right side, but I was in the middle of an episode. The second ENG showed up normal and I was symptom free during that time. My Dr. did not know what I had. He said I was a tough case and said maybe at one time I had a virus and I never compensated. I remember thinking is this guy for real? That would have been 7 years ago and I spent much of that time as an athlete so how could I have not compensated in that time? And that would mean that my Dad and I would have gotten a virus at the same stage in life. Give me a break!
I kept complaining about my light sensitivity and how I had to wear ear plugs sometimes. Still the ENT was clueless. Finally, he decided to refer me to a neurologist because he said I do have some of the components of migraine. I saw the neurologist who immediatley recognized the symtpoms as MAV. Especially when I told him about my Dad. He explained how it is the most common form of dizziness and that it used to be thought that BPPV and menieres were. When actually most of those cases were migraine all along and that only in the last two years have the Dr.s discovered it. And many still have not. Finally, I felt that I had my diagnosis. I just did not realize how hard it would be to treat it.
Since that time, I have had many more similar episodes but not the severity as the one in October. I take a supplements. CoenzymeQ10, ginko, magnesium/calcium and omega3 oils. Not sure if they have helped with the severity, but the frequency is worse than ever. I had to go through VRT as a result of that time last October and I have my balance back now and can walk around at night latley, but I still get episodes that come on about every other week and I get terrible brain fog and dizziness and of course the photophobia all the time. And something new…headaches. Migraine headaches. Once in a while these lovley things accompany the other symptoms or sometimes they come all alone or vice versa. Usually the dizziness and friends is without the head pain.
This is my story in it’s short version. I’m sure many of you can relate to this hell on earth. I am hoping we all find the answers we need and in the meantime I am grateful to sites like this so we do not feel alone with it all.