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#341

Welcome DFL,

You speak with words of wisdom and have the benefit of experience. This is a disease that does not ever go away – it’s in the genes and should be regarded like hypertension or type 2 diabetes. The key is management and attention to detail. With acceptance and strategic thinking – with the guidance of a health professional who can assist – you can and will be more fully functional again. Even after 10 years of this I continue to learn new things from the literature and the sharing of information on this forum.

S 8)


#342

— Begin quote from “scott”

This is a disease that does not ever go away – it’s in the genes and should be regarded like hypertension or type 2 diabetes.

S 8)

— End quote

Thank you for the kind welcome! Yup, this is the fact that is probably the toughest to swallow. While I have always known and accepted that, I definitely go through periods of being angry sometimes about not being able to change the cards I have been dealt - that’s probably a common reaction to any chronic illness, and I have to remember it could be a lot worse, right? Hopefully we’ll see some better advancements in treatment options in our lifetime.


#343

Hi everyone, my name is Kara and I am a 23 year old female. I just came across this board and I feel some validation to what I’ve been dealing with for years now! Here’s my story:

I’ve always had motion sickness (pretty severe) since as far back as I can remember when I was a kid. I would throw up on every long car trip and plane flight, and had to stay away from boats and roller coasters, etc. I developed anxiety around traveling because I knew I would get sick and still have that anxiety today.

About 6 years ago, I had my first vertigo attack and woke up in the middle of the night to nystagmus and an incredible urge to vomit. I jumped out of bed to run to the bathroom and passed out, woke up a minute or two later with the room spinning fast around me, and passed out again. When I came to, I vomited every 10 minutes caused by a wave of dizziness for the next 5 or 6 hours until I just fell asleep from exhaustion. During “the aftermath”, as I call the vomiting, I had a splitting headache but was unable to keep any pills down to relieve the nausea or dizziness. I went to the doctor and they diagnosed me with BBPV and said i must have turned over in my sleep and caused a positional attack, and gave me meclizine for the dizziness but nothing for nausea.

Fast forward to today and my episodes happen infrequently (once or twice a year, but occasionally more frequently) but always in the middle of the night. I wake up to the exact same situation as the first time I experienced an attack and have seen countless ENTs, doctors, and neurologists (and have had the MRI, CT Scan, etc: all normal). I’ve tried verapamil which did nothing, meclizine as needed, zofran when I can keep it down (which does help with the nausea) and promethegan suppositories for when I’m in the middle of the aftermath and can’t keep any pills down. One doctor suggested that I have migraines with a vertigo aura but I think there is a stronger correlation than that.

I have a history of migraines in my family but no one else has experienced these intense symptoms. I stay away from caffeine and red wine, hardly drink alcohol (great for my social life as a college student :/), and am extremely careful with anything that could make me dizzy. The most frustrating and frightening thing is that there is NO pattern to when these attacks occur, so I am constantly fearful that tonight will be the night.

Two months ago I saw a new neurologist who agreed that my vertigo is related to migraines and prescribed 20 mg of amitriptyline to help with migraines but also to help me sleep (as these attacks happen only in the middle of the night which makes me terrified of sleeping). It has been working wonderfully so far. However, just last night I had a full-blown attack, the first one in a year and a half, and now I’m worried that the amitriptyline isn’t truly helping.

I’m set to study abroad in two weeks and I hadn’t had a vertigo attack in a longer period of time, but this most recent one is making me terrified to travel. The passing out is what scares me the most and I am essentially out of commission during the aftermath. I have an appt this week to see my doctor and neuro so I will bring up MAV and see if they can shed some more light on my situation, since I know I don’t just have BBPV!

Has anyone else experienced attacks only in the middle of the night? Or passing out during one? I hope I’m not alone!

-Kara


#344

Hi Kara -

Good grief, that sounds absolutely miserable. Yes, I regularly pass out during my migraine auras, but it’s not always connected with severe periods of migraine associated vertigo.

I am NOT a medical professional, nor do I play one on TV, but I cannot help but wonder if any of your doctors have brought up Cyclical Vomiting Syndrome with you? It goes along with migraines, can cause some pronounced dizziness, and the stereotypical time of day of onset plus severe vomiting makes me wonder if you had been evaluated for that.

As for the Zofran, did they give you the pills or the dissolving tabs? It does come in a tab that you just stick under the tongue and let passively dissolve, which is super helpful for when you just cannot swallow anything at all. I have had those before when I was at my worst, and at least for me, they made a difference. For traveling, there are some stronger motion sickness drugs that may be an option for you, though with your history, you may have tried them already? The Transderm-Scop patch is the one I use on long trips. If you haven’t already, I would definitely bring up the trip with your doctor and be honest about any anxiety you feel - there is no need to suffer in silence if they can offer you some assistance.


#345

Thursday I was diagnosed with MAV. I had never heard of it before. I’ve been off of work for 6 weeks with dizziness, fatigue, foggy head, confusion. At first I thought it was depression. That dark beast that I’ve always tried to out run. I was diagnosed with “situational depression” in '93 after an accident which really threw me into a tailspin.

In '00 I had a stress meltdown from work and went to a shrink who again diagnosed me with depression and ADD. I’ve been on Celexa 40mg , Buspar15 mg and Adderall 20mg ever since. I also had a deafening pounding in my ears. The shrink put me on Propranolol and that seemed to help. I gained a lot of weight and often felt like I was in slow motion. A few years ago, I took myself off of the Propranolol hoping I would have more energy. I thought the other drugs would be enough to handle the anxiety and depression. The ear pounding hadn’t returned, until this past Spring. I didn’t connect the two.

As far as hormones and girl stuff, I had a hysterectomy in '07 and they left my ovaries. I’ve been on Estradoil 2mg since '11, which I’m now told i need to wean off because of concern of stroke if combined with Verapamil.

I’ve always had symptoms of foggy headedness, pounding in my ears, aches behind my ears, confusion in stores with bright lights. I just thought that was a part of my wierdly wired brain and got used to it. I miss a lot of things I wish I could go to. I don’t want to live like that anymore. It’s been very discouraging. I’ve also been sober for more than 20 years, and have been in therapy for more than 30. Like most humans, I want to live a full productive, happy healthy life. I don’t want to try to outrun or manage depression or now, MAV.
I had been feeling more and more fatigued. Again I thought it was the depression creeping in on me. Maybe my head meds needed an adjustment. I went to my primary care doc and she ran a slew of blood tests which showed anemia. She switched me to Lexapro 20mg because of the fatigue, and also sent me in for an MRI to eliminate brain tumor and stroke, upper Endoscopy and colonoscopy to check for cancer. They did find a large hiatial hernia, and I’m waiting to see what they want to do about that.

While waiting to see more docs for more tests to find the cause of the anemia, the dizziness and fatigue got worse. I was sleeping 15+ hours, and dizziness was turning into vertigo. Patterns were moving, my ears were pounding. I see white and yellow spots. My eye feel crossed. I wake up with double vision. I can’t read or focus. I have no headache, just this constant dull ache behind my ears. I’ve had that since I was a kid. The pediatrician said that was ear wax build up and to drop some alcohol or hydrogen peroxide in my years and I’d be ok. Like I said… I’ve realized how much of a tolerance for some of the pain and discomfort I have.

I’m not a hypochondriac ,and rarely if ever complain about being sick. But things were getting worse. I asked friends for help. I tried to describe my symptoms and they sounded all over the place. I made of list of everything I could remember, or had been just dealing with and gave it to a couple of good friends and my doctor. They all pointed out that many of my symptoms were not “normal” and I should not have to tolerate it.

I went through the battery of tests and questions at the neurologist Thursday. I really liked this doctor and his fellow. They spent so much time with me. I wasn’t dismissed as a middle aged menopausal woman. They talked about all of my symptoms, and a big one: I didn’t realize it wasn’t normal to see auras or yellow and while outlines around things. Again, that’s something I’ve experienced since I got sober. The Neurologist called it “migrainous phenomena” and prescribed Verapamil. I didn’t understand. I thought migraines were intolerable headaches that people get and have to lie in the fetal position in the dark. I rarely if ever get headaches. Except for the constant ache behind my ears, which the neurologist jokingly said was “part of my head and therefore a head ache.”

That was two days ago. I’m taking 40mg Verapamil 2x per day for a week, then I’m supposed to increase it each week:
40mg/80mg
80mg/ 80mg
80mg/ 120mg
120mg/120mg

The neurologist said it will take 3-4 weeks to begin to see if it’s working. I think the Verapamil caused insomnia last night. That’s a new one. I’ve been sleeping like I’m depressed and actually have an appointment with the sleep clinic next month for sleep apnea.

So I read through the forum all night. The Vestibular Migraine Survival Guide 2013 http://mvertigo.cloudapp.net/t/vestibular-migraine-survival-guide-2014/2244 was amazing. It had everything I have been feeling for years. I do not recall anyone in my family having migraines. Maybe my Mom, but she had everything if you know what I mean.
I pray the medication can help me. I also hope I can cut down on the anxiety/depression meds if MAV is what’s really going on with me. I just want to get back to work and participate in my life again.

I’ve felt so isolated and confused. I know absolutely nothing about this stuff… until I found this site late last night.
Thank you for being here and setting up all of this information. I have much to learn, and appreciate all of your generous information and support.


#346

(Also posted http://mvertigo.cloudapp.net/t/second-round-of-mav/6983 before I found this thread).
Hello folks,
This site seems pretty awesome for MAV suffers! Thought I’d post about my experiences so far. Male, 34 here.

Episode 1: For me, it started with a couple of episodes of fainting about 20 days apart. A GP found and treated me for tachycardia (fast heartbeat). A few days later, I had one 1-hour episode of acute vertigo, and some lighter vertigo for a couple days. Subsequently, I was highly fatigued and just felt overall crappy for a few days, after which within a few days, I started feeling 24/7 like I was on a boat, rocking back and forth quite a bit. So much that I couldn’t get out of the house any more. It took 3 months to get to see a neurologist and get an MAV diagnosis.

Propranolol 120mg/day for 2 months didn’t help. Amitriptyline was hard do tolerate (got very spaced out, drowsy, etc.), but managed to work up to 20mg over 3-4 weeks. I gave it up a week after hitting 20mg because of the side effects. This was about 7 months in. In the next two months, the symptoms went away by themselves, seemingly, though never quite fully, only 80-95%. Continued taking 60mg of propranolol every day. Never was a caffeine/soda drinker, and quit all alcohol and cheese.

Episode 2: Things were at that 80-90% for about 6 months, and then, BAM, a lot of vertigo hit all of a sudden one day. Two weeks later, the chronic 24/7 weakness, fatigue, vertigo, and feeling lightheaded/fainting hit, and it’s been increasing ever since. I’ve been working my way up on amitriptyline (started at 5mg 8 weeks ago, been at 20mg for 2 weeks), and it’s continuing to get worse. Don’t know what to do now except to continue taking it. Can’t get out of the house any more. Seeing a new neurologist (I’ve moved) in a couple of weeks. :frowning:

The neurologist ruled out many other possibilities based on a brain/neck MRI. But still, one fear I have is that this is not MAV but something else. I have virtually no headache at all, except for some very minor ache all around the head occasionally which I wouldn’t even notice had I not been diagnosed with MAV. Nobody in my immediate family seem to have anything resembling a headache.


#347

sfnewbie: sorry to hear about your story. glad you got diagnosed though. hope the Verapamil kicks in and starts working soon. Good luck, and hope to hear about your progress.


#348

Hi all!
My name is AnnaMarie, I am 46 years old and I am from the Netherlands ( so my English is not perfect, sorry !).
I am very happy that I have found this forum 3 months ago; since then I was able to gather so much information about what is happening in my head ! So thank you very much for that ! There is not much information at all about this on Dutch sites.

In Dec. 2012 I woke up with a sudden hearing loss in one ear, a very loud hum and pressure in the ear. Two days later I had a vertigo attack, nausea, vomitting etc.
GP thought it might be Meniere’s. I tried to recover in the next two months but I stayed dizzy, a bit off balance, and had a continous ringing in both ears, earpressure on and off. In February I had the same kind of attack once again and I had an appointment with an ENT specialist. Hearing tests were o.k. , ENG test showed that my organs of balance were functioning but in a slightly a- symmetrical way.
At the beginning of April ENT specialist suggested Vestibular Migraine and advised me to try Propranolol 80 mg SR. I had never heard of this type of migraine and at that moment I was not ready for the medication ( was afraid my bloodpressure would lower too much, since I have quite low bloodpressure already). Then I found this forum and learned a lot about all these other symptoms, apart from headaches, that can be associated with migraine ! I also bought the book ‘Heal your Headache’ , learned even more, and started with Step2 (Reducing your triggers aka the diet ). Step 1 ( Avoiding the ‘quick fix’ ) wasn’t necessary for me because I almost never take painkillers; may be once a month I took a paracetamol ( without caffeine). I did try triptans ( may be 10 times in total ) when I had severe headaches in the last few years but they didn’t work at all.

Since I was 15 years old I started having headaches, but they were never recognized as ‘migraine headaches’ : I never had distinct attacks for 24-72 hours, never was nauseous or light sensitive ! My headaches were related to hormonal changes for the biggest part of it, and in the last few years I started having very irregular periods and other menopausal symptoms. So I guess hormones are a big trigger for me !
16 years ago I was diagnosed with CFS, and have not been able to work since or do much physical exercise. So I am used to being (partly ) housebound. But this last 6 or 7 months has been so much harder, not being able to do simple things or going out and do some shopping. I can walk outside for max. 20 minutes, but it is not a relaxing experience with this dizzy and weird feeling head !
Last week I had an appointment with a neurologist, specialized in vertigo and dizziness, and he confirmed the diagnosis VM being most likely. Although he was not sure about the ear pressure and pain, and the continous ringing as being part of VM. But on this forum I read that these symptoms ARE a part of VM, aren’t they?

So now I started with Valproic Acid 150 mg. since 3 days ,and I am gong to increase it very slowly in the next 6 weeks. I didn’t have any headaches since starting, which is nice, but I am feeling so much more drowsy and tired in my head , wow ! And I am only taking 150 mg ! I hope this will subside with time, just have to be very patient I guess. I have always been very anxious about taking medication, but now I feel I have to ‘risk’ it in order to increase the chance of getting better from this debilitating illness .

My symptoms in the last few months:
Headaches, lasting for weeks and quite severe most of the time
Classical Migraine aura ( for the first time in my life, never had it before !)
Dizziness, head is feeling like a bowling ball
Ringing in both ears 24/7
Ear pressure and pain
pressure in the jaws
sound sensitivity
visual sensitivity ( television,computerscreen, the wind moving leafs of a tree…)
feeling worse when moving; walking, sitting in a car…
Light sensitivity ; glare , flashing
very tired

Just knowing that I am not the only one going through this is helping a little bit, so thank you all for being here !

AnnaMarie


#349

I would take a headache any day if it didn’t give me the unbalanced feeling after that never subsides.

I am 30, have had this for almost three months now… everyday all day I feel off. I am healthy and strong and in control of my life- but now feel disabled due to this. The main symptom I can’t deal with is the dizziness- I don’t have the room spinning, but my vision gets a bit blurry and I then have trouble feeling strong and balanced. Can come on suddenly and then it doesn’t go away. It’s there to stay. Sometimes it feels like I am walking in sand. Other times I feel ok and think I’m ok and then boom. It’s been like this everyday for 3 months almost so I think its Chronic Vestibular Migraine based on that new article that was posted on this site acknowledging Vestibular Migraines as a legit category for us sufferers…

My neurologist has diagnosed me with MAV- but I just can’t get over the idea that migraines cause dizziness. I stand on the pavement and feel unsteady. Like a rocking feeling. My feet ache from all of the extra work it does. I can’t drive and haven’t been able to exercise my usual cross fit routine. I started a new job and have enjoyed it greatly- but am embarassed to not be able to walk at work! I feel like the lights at work literally drain my body of energy- my face gets tingly, I get weak and my head hurts… but the worst feeling is not being steady on my feet.

I write on this to vent- but wonder if anyone else has had a similar experience? How do we avoid artificial lights when it is almost 95% of everything?

My neuro prescribed me Venlafaxine- but I am so sensitive to medication that I am starting at a 12.5mg dose for the first week. Seems like a tic tac compared to other posts I have read. I will start that tomorrow and see what happens…sigh.

TO be productive: Does anyone have any physical therapy tricks to practice to gain control of dizzy symptoms? I am also trying a strict diet, acupunture and meditation to help feel more in control. Any ideas, similar stories or advice would be so appreciated! Thank you for taking the time to read this.


#350

— Begin quote from “makeitgoaway”

sfnewbie: sorry to hear about your story. glad you got diagnosed though. hope the Verapamil kicks in and starts working soon. Good luck, and hope to hear about your progress.

— End quote

Thank you so much. I am so grateful for this forum. It has given me so much information and hope.


#351

Parmparm

Just a few simple words describe you exactly what it’s like for so many. Sorry but welcome there is great help on the Board. Please try everything else suggested - just a small contribution-I swear by some exercises given to me by a Physio performed to obsession in the early months and still regularly. Not VRT (disaster for me) but (for want of other descriptions - they involve standing on one leg carefully and just practising different moves a bit like warm up exercises) . A bit of getting to know the problem, being aware of body bits involved in balance and working out how to relax feet (sounds nutty but spread out toes a bit and work up from there…). Just retraining brain, muscles really. But it really, truly did help. The actual balance problem is still there really underneath - a bit of uneven terrain, a bump or being plunged into darkness are unfortunately excellent tests. :o. The spinning sensation is still there too. Sometimes getting aware of head movements which trigger vertigo helps getting around too. The lights are the devil to solve in most workplaces…But a few other evils like lurid carpet or electronic doors you can kinda sort of get the hang of by not looking.

BUT I really can get around close to normally, play a bit of racquet sport, ride bike etc - that side of life has improved out of sight :smiley: . The old brain still gets tired and am working less hours. If you can get back to physical functioning confidently is at least one devil conquered! Good luck!


#352

hello, I am not sure how similar my problem is but I have not found any sites specific to my problem so hopefully its similar enough :slight_smile:

- What is my condition: unilateral vestibular hypofunction (basically the vestibular function on my right side is damaged)

  • How your condition started: there can be no way to tell but from what I know the only thing that could have caused it that applies to me it brain damage, in my case from my early birth trauma to the head.

  • **Any precursors that might have been related: quite a lot of precursors through my life, however its quite uncommon for someone of my age so it would not have been thought of, the things I experienced before being diagnosed included anxiety, dizziness, balance issues, spacial problems, visual disturbances and nausea.

  • Where and when you were diagnosed: finally diagnosed after years of wondering what was wrong in 2009 when I was 15 at St Georges hospital UK

  • Other diagnoses that you have had: generalised anxiety, panic attacks, as well as a phobia.

  • How you are treating your condition:** physiotherapy there are no medications that help unfortunately physio is known to improve the problem.

  • What has worked for you and what you might recommend other people try: erm, well avoiding bright light helps an awful lot, I where sunglasses when travelling in any transport when its sunny. avoid patterns, I cant use things like graph paper, that makes me really dizzy, things start to move. never looking down on an escalator :slight_smile: don’t go into any brightly lit loud places like clubs they aer really bad, I cant be in one for more than 5 seconds before having to leave.


#353

Reading all of your stories made me start crying because I can’t believe how many people are suffering like I am. I just turned 25 yesterday and I have been suffering with this lightheaded feeling, cloudy vision for almost two years. It has now progressed into feeling like I am on a boat, waving back at forth and sometimes tingling in my extremities. Every single doctor/ specialist I have seen send me to the next specialist for more tests because no one can figure it out. I have had two CT scans, MRI, blood tests, allergy tests, spine x-rays, hearing and balance tests… they all come back normal. I have been feeling a fullness in my ears, ringing in the ears, headaches over the eyes, extreme exhaustion, dizziness, etc. I have been diagnosed with Ocular Migraines by a neurologist and ENT, put on 3 different drugs (Nortriptyline, Topamax, Maxalt) all which made me feel completely awful making my symptoms worse. I was also prescribed Diazepam to take 3 times a day for dizziness. Something about the thought of taking Valium leads me to believe I will end up feeling more dizzy, maybe its the fact the pill bottle says “May Cause Dizziness”… I had a food sensitivity test done and cut out all the foods I was sensitive to without any results. I have been seeing a Chiropractor twice a week who swears he can help me and nutritionist that told me I have liver dysfunction? I have been told maybe it is anxiety, called a hypochondriac many times and I am left defeated because no one could possibly understand this feeling I have been living with every single day for the past two years. And it continues to get worse and worse over time. I don’t drive anymore, I have had to pull over on too many occasions from feeling weakness in my extremities and the lightheaded & blurred vision. My whole life has completely been taken away from me. I am scared to go to the grocery store by myself, I come into work anticipating the hour I am going to feel horrible. The florescent lights make my vision change. I am so sick of seeing doctors and not seeing any results. Its terrifying feeling like this all the time, I feel like there is something horribly wrong with me. I just want my life back, does Migraine Associated Vertigo really affect you every single day? I didn’t think you could get a migraine all day every day. I am trying to advance in my career, maybe go to grad school but I can’t. It takes so much energy to just to make it through the day. I don’t want to look back and see how much this has taken from me. Any advice would be amazing. Thank you.


#354

Welcome to all our newbies - you’ll find great information and support here :slight_smile:


#355

As a child I always had motion sickness which was usually brought on by riding in a car too long or riding on a boat. As a teenager/young adult I started getting migraines which were usually brought on by anxiety or stress. During these times I was still able to live a normal life. I was diagnosed with vertigo when I was about 25 and started taking antivert. The antivert helped and I usually only had to take it when I would be traveling for long periods of time. As the years went on I went from taking antivert 1 time a day to 3 times a day. Some time last year the antivert stopped working. After several visits to the doctor I was referred to a Ear, Nose and Throat Specialist. I was very optimistic. The ear, nose and throat doctor ran test and diagnosed me with Migraine Associated Vertigo, but after a month and 3 different medications the ear nose and throat doctor said they couldn’t help me. So I had to go back to my primary doctor and get another referral for a neurologist. I’ve only seen the neurologist one time but he does not seem optimistic. I was told he can only treat me for migraines and if the dizziness continues I have to go back to the ear nose and throat doctor. The neurologist did set me up for an MRI but because I have poor peoples insurance they don’t cover MRI’s and I have to apply for financial assistance. So far I have taken Antivert 25 MG 3x daily which stopped working, Propranolol (Inderal) 80 MG did not work at all, Nortriptline HCL 25 MG and 50 MG did not work and made me very depressed, Imitrex 100 MG not only did this medicine fail to work but it made the top half of my body go numb for hours. I was afraid to go to the hospital because my insurance does not cover that. I was just given Gabapentin (Neurontin) 300 MG by the neurologist but am afraid to take it because of the listed side effects. Both ear, nose and throat doctor and neurologist tried giving me Topamax but my insurance doesn’t cover that. I would say within the past year my symptoms have gotten completely worse. I went from having occasional vertigo which was only dizziness to having vertigo every day. I now have dizziness, lightheadedness, blurred vision, nausea and vomiting, loss of balance and occasional hearing loss in my left ear. I have been out of work since May and recently filed disability because I have no source of income. I am blessed with a good family and support symptom but sometimes this journey seems hopeless. I never thought at 33 almost 34 that I would be out of work and filing disability. Sometimes I get depressed and feel like things are hopeless. I am tired of doctors, tired of telling my story to different doctors and tired of trying these different meds. But I have hope that one day I will be vertigo free or at least be able to function. These days I usually just stay home, I have stopped driving and even as I am typing this I feel dizzy. But I am going to continue to hope and pray that one day things will change.


#356

ddspears
It does indeed sound like MAV. Poor you - going to all those docs and not getting a proper diagnosis or proper meds. The same story so many people write when they find this forum. Unfortunately, MAV is not a condition that many docs learn about in med school. Many ENT’s don’t know much about it either and few neurologists know how to properly treat it which leaves us Mavers often spending years, money and health trying to find an answer to recovering. The first step is to find a neurologist/neuro otologist who has experience with diagnosing and treating MAV. The next big step is to begin trialling medications to find one that suits you and helps you get your life back. As we are all different this often takes some time and patience and thorough trialling is a must. Encouragement if often needed and we are here to offer that!
However, now you have found our site there is plenty of help on offer - papers to read regarding top Mav docs, treatments, advice, other people’s experiences etc. And the forum where you can ask whatever questions you like and get plenty of support on your journey. This forum has been a life saver for me - I hope you will find that it can help you too.
Barb


#357

Hi, I’m Elsie and 58 yrs old. I have a family history of migraines- my grandmother and father. I also got car sick as a kid but seemed to outgrow it. I had migraines in college usually after a stressful event (exams). As I got older in my 30-s and 40s the headaches were clearly hormonally linked. I began having what they refer to as migraine tranformation- not debilitating headache and vomiting but a persistant headache for days. i took Imitrex and that usually helped me. i also sometimes have aura. when i have aura I don’t always get a headache but I usually feel kind of lousy and drained afterward. Anyhow, I thought that at menopause my headaches improved. I got less of them. Yeah! But now I am having to reconsider that.
for years, I have had these bouts of feeling lightheaded or having “drunken head” with upset stomach that is usually brought on by some kind of motion- but after the motion stops I continue to feel lousy for several days up to several weeks.
An example: my husband and I flew to Paris. We got off the plane and I felt tired but ok. We rented a car to go to Normandy and we made a wrong turn and had to turn around. Then, we got stuck in a traffic jam-bumper to bumper. when we finally got to the open highway I broke out into a sweat and asked my husband to pull over. I threw up. Normally, this should make one feel better but for the rest of the trip and even when I got home I felt lousy with this drunken head, and/or a headache, stomach ache, and a grinding in my stomach that sometimes feels like hunger growls but when I eat they don’t go away.
I was told by one of my doctors years ago that it was my inner ear - nothing to do. So I left it at that. This winter I had a bad bout and went to an ENT.-- my inner ear was normal he said- had nothing to offer but go to a neurologist. So, now I am having one of my bouts and went on line and found Mal de dembarquement syndrome and began to think that could be what I have. But the support group replied that my symptoms may be MAV as I don’t have rocking, bobbing, or swaying sensations. I They suggested I look into MAV
I had not really considered that these bouts could be migraine related. But seeing that I have a history of migraines- it is beginning to make sense. I am going to look into Lymes disease as i have alot of exposure to tick bites. I never considered Lymes either because I don’t have the classic joint aches, fever, etc. I will get the bloodwork done and see my primary physician and go ffrom there. I am grateful to have found this forum!


#358

I also started this with a motion event, after several hours driving. It came on so suddenly, I thought I had had a stroke, heart attack, there was a earthquake – everything seemed sideways and walking was like being on a moving sidewalk. Or should I say, feels like walking on a moving sidewalk because it has never stopped, except when I’m driving or, as I recently found out, in the swimming pool. I rarely have headaches but I am all but disabled nonetheless. The supermarket is the worst! It’s been a year and a half. I want to get out more but prefer to stay home. I can surf the net to some extent, but can’t do any serious reading or working on the computer, which is a disappointment because I had thought I could work online. I’d like to learn tai chi to keep my body in some sort of shape. I don’t take any medication as they appear to dull the senses to alleviate the dizziness, but I don’t want to risk dulling my other cognitive functions or gamble on side effects.


#359

***** I am not saying everyone has Lyme. This is MY story, and I hope so much it helps someone.

As I blew out my 30th birthday candles in 2007, I did not wish for health, as I was healthy (so I thought), and I didn’t realize life as I knew it could be lost at the blink of an eye. I was HAPPY: engaged to the love of my life, and after many years of hard work I had earned my PhD in Clinical Psychology. I figured the hardest part of my life (years of schooling) was behind me. I had so much to look forward to as I embarked on my 30s. That was the last candle that would be blown out without wishing with everything that I am that I would be healthy again and not have to suffer anymore. That would be the last birthday that I was able to smile, truly smile. My life as I knew it changed dramatically several months later in 2007. The next 6 years would be filled with nonstop suffering, nonstop doctor’s appointments, and nonstop searching for answers.

Symptoms: My first symptom was this torturous sensation of rocking when I walked. I felt as if I was on a boat that never docked! Accompanying this was an intense feeling of fatigue, as well as migraines.

Looking back, I wasn’t feeling at my best for about 1 and 1/2 years prior. My at most annual migraines progressed significantly to the point that I was having sometimes multiple migraines with aura per week, and headaches on other days. I also had bouts of feeling rundown for 6 months prior to my big downfall. However, this wasn’t chronic, and I went about my daily life.

As quickly as this 2007 bout of rocking and fatigue hit me, it came and went a few times until 2 months later when it NEVER left. I have NEVER been without this rocking sensation since. How I yearn for stillness. Unfortunately, as the years progressed, I only got sicker. My rocking became even more violent, and eventually was present when standing, then sitting, then even lying down. I am NEVER without it. I also experience a spinning sensation in my head. This is the hardest symptom to describe. Perhaps, I can illustrate it by making the analogy to having the inside of my head in a washing machine. Also, it is analogous to how one feels after spinning around and around. I have that sensation 24/7. The fatigue has worsened through the years. It is bone-crushing, and I feel flu like all the time. I continue to have head pain, and head pressure, as well as intermittent migraines. I have developed something I call “brain zaps,” where it feels like someone touched a nerve in my head. Again, a very difficult symptom to describe. It can be triggered by someone moving ever so slightly or changing the intonation of their voice. Sometimes it is spontaneous. Other symptoms include nausea, blurry vision at times, and extreme auditory/tactile/visual hypersensitivity. I went from being an, active, social woman to a prisoner in my own body and environment

Journey of what I think was misdiagnosis: When I became ill, I immediately saw a neurologist who ordered an MRI. I was told that it was negative, and my symptoms would go away. He did some routine labs. Furthermore, this neurologist remarked that I should be a football player, not a tennis player, as football players keep on playing when injured while tennis players get knocked down. He finally referred me to a neuro-otologist who did many vestibular tests. Again all was negative. The neuro-otologist suspected Migraine Associated Dizziness. An answer? maybe? I spoke to my neurologist who didn’t believe that was my diagnosis, but he had no alternative diagnosis, except to say this should go away.

Time passed, and I saw more neurologists, more neuro-otologists, and ten months after I became ill, I met with a neurologist who treats many cases of Migraine Associated Dizziness. He assured me this was my diagnosis and I had hope. I was so relieved. Through the years, I trialled over 15 migraine preventatives, including beta blockers, calcium channel blockers, anti-seizure medications, as well as antidepressants. I have always been extremely determined, so after each drug trial that failed, I fought on and tried the next one. NOTHING had worked adequately. The only improvement was a decrease in headache with aura, which was truly the least of my concerns.

I was even put in the hospital for one week to receive IV medications to try to break the migraine cycle that was causing all these symptoms. You see the irony in that. I will get more into that later.

As I was not getting well under the care of my New York physician, I got second opinions, third opinions, fourth opinions, etc, by top specialists around the country. I was either told that they had no idea what my diagnosis was, I had spontaneous Mal De Debarquement Syndrome which was incurable (even though I never even debarqued), or I had Migraine Associated Dizziness, also known as Vestibular Migraine or MAV for short. Well, the MAV diagnosis seemed like the best option. So, I continued on trying medication after medication.

As my life was slipping further and further away, I went to Duke where I was told that I could have a cerebral spinal fluid leak. I had repeated spinal taps while there, and 6 blood patches. No success!

6 years later: The first few years were brutal, but the last few years have been unlivable. The sensations are so violent. I do not get a second of peace. I cannot walk or stand without holding on. Accomplishing my own activities of daily living (e.g., dressing, eating, bathing) is brutal. I can only see my own husband and my darling sons, often times a few minutes at a time, as I am extremely hypersensitive to any movement, sound, touch, etc.

During Summer 2012 I began to reassess this diagnosis of Migraine Associated Dizziness. Could I have 24/7 chronic migraine for 6 years that had ripped my life apart? How could this be? What is that diagnosis? Why hasn’t any medication helped me? By this time, I connected with 100s of people around the world who were labeled as having MAV. Migraine can cause bone-crushing fatigue, night sweats, 24/7 violent dizziness, brain zaps, etc? Even though the literature supports this I thought something isn’t right. A once active, healthy, 30-year old, is now incapacitated at 36!

Lyme Disease: In the Summer of 2012, I met a lovely group of people on an online forum who were also diagnosed with MAV but were searching for another possible explanation for these symptoms. What resonated with me, was that these individuals all had some type of dizziness as well as other neurological symptoms typical of MAV. There was some overlap in symptoms, but many, many differences. Yet, we were all diagnosed with MAV and not getting better. We began to search for other possible explanations.

Lyme Disease became a topic of conversation among this group. I had been tested for Lyme Disease years prior, and was one of the lucky ones that didn’t only get the Elisa screening test, which misses the majority of cases. I went on and had the Western Blot which came back with one positive band. Through the years, something in me prompted me to bring my Lyme test result to each doctor I saw (and there were A LOT), and again and again I was told that one must have a certain number of bands to have Lyme Disease, and I do not have the typical presentation.

During the Fall 2012, I began to have more serious conversations with my husband about Lyme Disease. I should note that my husband is a physician, and moreover he wanted me well more than anyone in the world. But, he assured me based on his medical training that Lyme Disease was likely not my diagnosis, as I did not recall a rash, I wasn’t in the woods, I don’t have joint pain, and over 30 physicians said that I definitely do not have it. That quelled my anxiety for some time. But, as I researched more I began to learn that most don’t have a rash and you absolutely do not have to be in the woods to contract this awful disease, and joint pain doesn’t occur in many Lyme sufferers.

My husband began to do more research with me, and I pushed and pushed to do as much research as my sick head would allow. We learned that Lyme testing is grossly inaccurate. Lyme testing doesn’t directly test for Lyme. It tests for one’s immune response (antibodies) to Lyme. So, even early on, testing doesn’t always come up positive, even if someone does have Lyme. Also, as someone is sicker longer, one’s immune system become weaker, making it sometimes even harder to have a positive result. In addition, Lyme is sneaky and hides in the cells; thus, it is very hard for the body to detect it. Most only receive a screening test called an Elisa, which comes out falsely negative the majority of the time. And, if someone is lucky enough to even get a Western Blot, most doctors are taught to follow Center of Disease Control (CDC) and Infectious Disease Society of America Guidelines (IDSA) which I personally believe are scientifically flawed and state that you must have a certain number of Lyme bands to be considered Lyme positive. There is luckily some more sensitive tests (e.g., Igenex) that have been developed, but even with those there are many false negatives. I learned that one only needs one lyme specific band to come up positive or even indeterminate to indicate that there was exposure to Lyme. Thus, adhering to CDC and IDSA guidelines (which most doctors are taught to do) may lead to missing a positive case.

In the beginning of 2013, I met with a Lyme expert, who is known as a “Lyme Literate Medical Doctor” or “LLMD.” I met with him for several hours, reviewing my entire history and lengthy medical file. I shared all my records including a Lyme test I received in 2008, which was sent to Stony Brook Laboratory. I was told at the time that I came up with one band, 41, and this is the test result that I brought around with me for 6 years. This LLMD told me that half of my test results were missing. He contacted Stony Brook, and it was revealed that I was positive on a specific band (93), and he explained to me that this band is highly indicative of lyme disease. I learned that the CDC doesn’t require revealing the full test result unless it is specifically requested by the ordering doctor. The LLMD shared with me an article written way before 2008 about this band and why it is indicative of Lyme Disease. The article was entitled, “THe 93-Kilodalton Protein of Borrelia burgdorferi: an Immunodominant Protoplasmic Cylinder Antigen.” written by Benjamin Luft, et. al. For the first time in almost 6 years, I cried tears of hope and relief. Further testing through Igenex revealed that I have come up positive on other Lyme specific bands. Months later, I was also diagnosed as having coinfections, Babesia and Bartonella. I learned that many do not only have Lyme, and it is these coinfections which oftentimes make someone sicker than the Lyme itself. Little did I know the journey to health had only just begun.

Future: As difficult as it was to be diagnosed, learning about treatment options and making treatment decisions have been just as challenging. I decided to treat with aggressive antibiotics despite evidence to the contrary. I am also trying to build my immune system through supplements, detoxing, adhering to a Lyme-friendly diet, etc. I hope that one day I can write a happy ending to this story. I am fighting everyday for my life.


Update: 7/2013: I have completed 3 months of aggressive treatment focused heavily on my Babesia infection.

First months: As typical in Lyme treatment, you get worse before you get better as the bacteria is killed off. It was the hardest thing to continue to take all my pills everyday, watching myself get sicker and my body wither away and weaken further.

After three months of this aggressive treatment I have finally noticed some gains for the first time in 6 years! My rocking sensation is less violent, such that I can finally feel the ground. I have been walking around my house all week, as I am just in shock to not have violent rocking. I never knew what my own floor at home felt like if that makes sense. I can now feel the floor again! Brain zaps and blurry vision have significantly decreased. I have had some reduction in flu -like symptoms, and the spinning in my head slowly improving. I was even able to play with my children. I was not able to run around with them, of course, but be with them! and smile for the first time in years. Recovery from Lyme is a marathon and I have a long road ahead. It is also not linear. My worse symptoms, the vestibular ones, are far from gone. But, I am so grateful to have any improvement after 6 years.


Note from the Administrator: it’s important to realise that there is no evidence to suggest this individual was “misdiagnosed”. Though this story is written in a convincing tone, the person has stated clearly on the forum on a number of occasions that she has had migraine with aura for a very long time, long before the dizziness began. She also stated that one year ago that she had “severely low levels of hormones” reported to her by a reproductive endocrinologist. Nothing more was ever reported about that. It is more likely that her migraine condition has been either exacerbated by Lyme disease or she doesn’t have Lyme disease at all. There are a number of people here now who were given a Lyme dx only to find it was incorrect. Igenex testing is subject to cross reactivity and this individual’s earlier testing was found to be insignificant by reputable physicians. If there is another illness present, it is fundamental migraine 101 management to treat that illness otherwise it can make migraine management very difficult. Please see the Survival Guide.

We have a number of neurologists who have contributed to mvertigo all of whom agree that the symptoms of migraine variants such as VM can prove difficult to treat in cases where there are other concurrent infections/illnesses/hormonal imbalances occurring.

Dr. John Aucott: 2011 report from the SLICE prospective cohort and his Maryland studies. He indicated that 75% of patients with early Lyme disease will have the telltale skin lesion within the first 1-4 weeks of infection that lasts from days to weeks and expands in size. He emphasised that the classic description of a “bull’s eye rash” occurs only 20% of the time – it is not the most common manifestation of the Lyme rash. Rather, a uniformly red or reddish-blue rash, round or oval in shape, with sharply demarcated borders is most common. Most often the rash develops in places such as the knee, groin, or arm pit, occurring at prime tick season, such as the late spring and early summer. The rash is usually accompanied by fever, chills, and muscular pain in the neck and extremities; these rashes are not extremely painful. For a balanced view on Lyme disease please visit the Columbia University Medical Center website:

http://columbia-lyme.org/index.html


#360

— Begin quote from “Barb”

ddspears
It does indeed sound like MAV. Poor you - going to all those docs and not getting a proper diagnosis or proper meds. The same story so many people write when they find this forum. Unfortunately, MAV is not a condition that many docs learn about in med school. Many ENT’s don’t know much about it either and few neurologists know how to properly treat it which leaves us Mavers often spending years, money and health trying to find an answer to recovering. The first step is to find a neurologist/neuro otologist who has experience with diagnosing and treating MAV. The next big step is to begin trialling medications to find one that suits you and helps you get your life back. As we are all different this often takes some time and patience and thorough trialling is a must. Encouragement if often needed and we are here to offer that!
However, now you have found our site there is plenty of help on offer - papers to read regarding top Mav docs, treatments, advice, other people’s experiences etc. And the forum where you can ask whatever questions you like and get plenty of support on your journey. This forum has been a life saver for me - I hope you will find that it can help you too.
Barb

— End quote

Thank you so much. I didn’t know MAV was so common until I found this site.