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#281

Dear lolly
Yep… Sounds like my vertigo started. It’s been 10 years now and I never had a vertigo crisis that was as bad and lasted as long as my first. So keep faith :slight_smile: Part of my vertigo comes from the inner ear but the major part is from migraines in my case.

have you tried taking ibuprofen when you have vertigo? It’s the only thing that helps me and makes be able to leave my bed when i have ab attack i know it doesn’t work for many people but for me it does. So it could be worth trying! Just be careful not to take too many and continue seeing specialists you should see.


#282

Hi, Here is my story (Cliff Note Version), this all started in 1992 after a long walk I noticed I was a little off balance, nothing spinning, just off balance, it seemed to vanish when I drove a car or rode a bike. Then about 6 months later I woke up one morning and it was gone. Then in 2001 after a 6 hour car trip I got out of my car and there it was, the same disequalbrium that I had in 1992, but this time a little worse. I knew that something was wrong so I went to my Doctor thinking this would be something easy like maybe I have an ear infection, but he could not find anything, over the next few years the condtion grew worse and it took it’s toll on my ability to work or keep in sort of relationship, because when you have this junk, people think you are crazy, no doctors can figure this out, so naturally the people around you think it’s all in your head. Well one morning while I was in a grocer store walking along all hell broke loose as all of a sudden everything in the store became extremely VIVID!! All the colors in the store become super vibriant and then things started to go dim, like someone was turning my lights out,I headed for the door with my head down toward the ground and made it out the door and across the street to my house, where after a few minutes I thought I was having a stroke and called 911, well in the ER they could not find anything,NOTHING…Scans, Blood work, you name it.I had it done and nothing was found. That was back then ,since then I’ve had flashing lights in my eye, tho moderate to severe vertigo symtoms, some last an hour and some last for weeks to months, I’ve been bedridden for over a month at a time. I never know when and attack will happen… UNREAL! Now I could make this alot more lengthy but I know most of you have experienced alot of what I just told you. I have been to over 25 specialist, and across the United States to some the worlds leading Doctors, I have had ever test you can dream of, MRI’s, Heart, Blood, ENT’s, Cervical Spine, Nerologist, Nerosurgeons, Cardiologist…Mayo Clinics, John Hopkins University, Cleveland Clinics, Duke University, New York Medical Center,and the list goes on and on up to nearly 1 million dollars in Medical bills alone, and to this date the only thing that I have been told is that I might have Migriane Associated Vertgo, that comes from the Cleveland Clinic. They prescribed Pamelor. Well let me tell you that was a rollercoaster ride that you don’t want. I took one pill at 25mg and I thought I was going to die, Keep in mind that I can’t take alot of meds, so this was no surprise. I’m 52 years old,I’m a male and just a few years ago I was running 10 miles per day and worked out in a gym 2 hours every morning except on the weekends, and now I’m lucky if I can make to walmart and back by myself. As a matter of fact we celebrate if I do make the trip. I have had every single bit of my previous life striped away from me. But not all is lost, I live a very healthly lifestyle now, I don’t drink,smoke, eat sweets or any other of the fun stuff I used to do,lol…But it has been life changing. I will never give up the fight to find out what this is that caused my life to change forever. My advice to you after 20 years of this is, don’t give up, don’t lose hope because when it comes right down to it, if you have this stuff,all you have left is HOPE. Good Luck and if you ever have any questions please feel free to ask.


#283

Wow!

Your story is my story! That happened to me in the store too and I raced to the ER. All the lights in the store dimmed and I thought I was dying! It happened the day after my wedding! Mine started the same way yours did. I thought I’ve been dealing with this for the last 6 years but as I look back I think it started very slowly years before that! I was in the gym daily runinning 6-10 miles a day and one day I got off the treadmill and everything was still moving. I thought it was strange and caused me some panic which eventually turned into panic disorder that doctors wanted to treat with anti depresents. I took 1 Lexapro and thought I was going insane! That’s as far as I made it. I’m very sensetive to drugs too. The doctors told me the balance and dizziness was due to the anxiety and I was quickly labelled in their medical charts. I kept trying to tell them that I was having some strange sensation that was actually causing the anxiety. Not anxiety causing it! After the birth of my second child all hell broke loose! I thought it was MS, Fibromyalgia, Rheumitoid arthritis, a heart/low blood pressure problem, tubal ligation syndrome, the list goes on. I’ve never been the same. I went from being fun and riding rollercoasters to not even being able to turn in a circle without everything spinning. My kids don’t think I’m any fun. I’m currently taking Verapamil which after a year I don’t even know if it really helps. I have modified my diet but can’t cut out the one cup of coffee which on some days I feel is the main culprit but the migraine I get when I try to quit is the worst pain I have ever been through so I give up by day 3. This is the most awful thing I’ve had to live with and it actually started when I moved from Texas to rainy Oregon. I think it started really slow. I moved 17 years ago but started to really notice a problem about 10 years ago. I thought it was panic attacks but I was actually getting dizzy or feeling like I was gonna faint which brought on panic. It wasn’t until I had that caloric test where they shoot water in your ears that I didn’t feel faint, I felt dizziness! I pray everyday that I will get better. I’m getting ready to dump the Verapaml and try and live super healthy and quit the caffeine and see what happens. I hope we all get better one day

Leslie


#284

Hi all

It’s so good to hear from others who are going through this. I’m 23 and have had chronic vertigo for about 4 years.

I started getting acute vertigo attacks and nausea after a particularly stressful period of time in 08. Gradually these attacks developed into a chronic, daily sensation of dizziness, sometimes not too bad and sometimes unbearable. I have a family history of migraine but it has taken me a long time to accept this as a diagnosis (and I still question it) as I rarely get headaches and when I do the pain isn’t very bad.

I have seen several specialists over the last few years and MAV seems to be the most likely culprit. I’ve had all the usual imaging, bloods etc all of which have been pretty normal. Halmagyi in Sydney was the one to originally suggest MAV (unfortunately he was not very helpful in terms of follow-up visits or treatment). I’ve tried pizotifen, sodium valproate, amitriptyline and plan to start verapamil soon. I also take magnesium and vitamin B & D daily.

Other than classic MAV symptoms, I get orthostatic tachycardia and some other weird autonomic symptoms, have pretty bad tinnitus and sometimes get acutely tired. I am also extremely thirsty all night for some reason ever since this started!

I find it very hard to describe how bad it is to have chronic dizziness to people and have them take me seriously. More than one Doctor has dismissed my symptoms as ‘psychogenic’, which is frustrating as I’m sure the rest of you know. I find the constant spaced-out, drunk, unable to think clearly feeling (which I can’t even describe) is the worst thing of all and it’s there nearly all the time.

Again thanks to those who created and contribute to this site, there is so much good info here.

Andrew


#285

Hi there…I thought I was the only one feeling this way…could not find anyone who could relate…till now. I am 34 years old and have had motion sickness my whole life. I have been having migraines since my teenage years. In 2010 I had a severe migraine. My face and head went numb. My balance and my speech were affected. I could not walk without running into a wall. Everything was moving, I felt like I was on a Merry go round. I was this way for about 2 months. The MRI showed nothing, all other tests were normal. Migraines were becoming a daily thing after this incedent. Every day I had a headache to some extent. The pain just varied. No medcine every fully fixed it. I have taken everything there is to treat the migraines and Cambia has been my only relief. I get almost instant relief. The vertigo however comes more frequently since that first episode. It lasts for days, weeks, and it always happens right after a migraine. Nothing helps it. I sleep and rest and it seems to calm some of the symptoms but as soon as I get up or move my eyes or head I start all over again. I have seen doctors, neurologist, chiropractors and herbal doctors. After almost three years I have learned that noone can help me. Doctors say I’m healthy, and Cambia is the only medicine that gives me any relief from my migraines. The vertigo is something I have learned to live with. I feel like I have a handicap. I never know when its going to happen or what extent it will be or how long it will last. I have enjoyed reading the other stories because there are maybe some things I have not thought of or related it to and I don’t feel alone. It’s hard to make people understand migraines and vertigo. I tell my family I feel like Im drunk and have not even had a drink. The pain from the migraines is so intense at times I just can’t breath. I would not wish this on anyone…


#286

Welcome Andrew and Season,

Sorry you are part of our migraine club but you are in the right place for support and excellent information.

Andrew - I too have been a patient of Halmagyi’s. Top in his field but you are right in terms of not much in the way of follow up support. Surprised he didn’t hand you the script for Prothiaden (which did actually work very well for me for a long time). If you are looking for another neuro here in Sydney a bunch of us see Dr Granot in Bondi. He’s tops!

Victoria


#287

Hello my name is Miley. I’m 24 years old. Never experienced any type of migraines or motion sickness when I was younger. my symptoms just started in February of 2012 (age 23). I was at work and had a very sudden dizzy spell, the dizziness lasted for about an hour, but afterwards I felt very weak for several days. I went to my primary care doctor, she just said it was an ear infection and gave me some antibiotics.
It was several weeks before I had another spell, I couldn’t get out of bed for three days. I went to the emergency room, they gave me fluids, assumed it was some type of virus. I ended up dropping about 30lbs from the nausea, stomach pain and fatigue. My doctor sent me to a gastro specialist assuming it was IBS or another gastro disorder. They ran every test under the sun, colonoscopy, endoscopy, small bowel biopsy. never found anything more serious than the gastritis and that I’m anemic, neither incredibly uncommon.
Finally after over 8 months of symptoms I was referred to a local neurologist, they ran an MRI and EEG. all clear. My local neurologist referred me to John Hopkins in December 2012, that’s where I was diagnosed with vestibular migraines/MAV. It seemed like such an odd diagnosis because I usually don’t have any “headache” with these spells but all the symptoms matched so perfectly- vertigo, auras, blurry vision etc. They referred me back to my local neurologist for further treatment. I had to switch to part time at work because I was missing so many days but these attacks have gone from occurring only once every few weeks to almost daily so I have this constant feeling of weakness even when not experiencing any other symptoms.
We haven’t really established a treatment plan yet, we are currently still trying to find my “trigger”. A few months after the dizziness began, I started getting these odd skin rashes all over (never had any skin problems prior either) so the doctor is thinking it’s either an allergen or hormonal issue that’s causing everything (I lost over 150lbs and started my period at 8 which apparently leads to hormone issues) so I am having to meet with an Allergist and Endocrinologist as well. The neurologist did give me clonazepam which doesn’t seem to be very helpful.

I wonder how anyone been able to manage work with frequently reoccurring episodes? There isn’t a lot of information at there about this specific type of migraines. They tested me at John Hopkins and I seem to get “sensory overload” when too much is going on at one time. I can’t even stay at a store long or I know an episode will happen. I work at a call center which is probably a massive trigger but it would be a shame to have to leave my job and i doubt I’d be eligible for any type of disability benefit.


#288

Hi Miley,
Ghastly going through all those tests & getting nowhere! Unfortunately, many of us forum members have been down the same path. It seems strange that, having been diagnosed with vestibular migraine you haven’t yet been started on a preventative. There are many of us who have never had a headache & still have the vertigo component of Migraine Associated Vertigo. Trying to identify all the triggers could take months as there are so many different things that can affect the migraine brain! Computer use is often a definite trigger as are busy places with fluro lights, etc.
Miley - please read the excellent info on this site, particularly the ‘sticky posts’ under General Discussion. There are lists of the evidence-based Migraine Preventatives - show your local doctor & maybe get started on a med. You are right in saying that there isn’t a lot of info about this condition! I wonder if your neurologist is a specialist in treating Migraine Associated Vertigo? (vestibular migraine, migrainous vertigo, etc. are all terms used by neurologists to describe this condition).
I’m sure the info on this great website will help & lots of support here too from the members!
Barb


#289

Hey Barb! I was just diagnosed on 12/20/12 so we are really in the early stages of figuring what will work for me. I went to the Vestibular Lab at John Hopkins, they’re one of the leading hospitals in the world. They diagnosed me and just forwarded all the results/findings back to my local Neuro, he put me on Clonazepam daily and also meclizine. Neither seems to be effective just yet but I’m told it usually takes time. I have a follow up appointment with my local neuro on Thursday.
I have been exploring the site, nice to hear from other who have the same condition, not really getting much sympathy from the family/coworkers. I don’t think other people recognize how debilitating it can be, especially when you have frequent episodes. the site has given me a lot of research that I’m taking to my next appointment :slight_smile:


#290

Hi Miley,
Found a couple of articles re American studies of migraine & vertigo. Both published in the US. Hope you have time to read them before you see your neurologist on Thursday. Good luck.

http://www.mvertigo.org/articles/more_than_a_headache.pdf

http://www.mvertigo.org/articles/national_guidlines2012.pdf

Barb


#291

thank you Barb, the first article they did give me at John Hopkins, and I will be bring both with me. I also ordered “Heal Your Headache” by David Buckholz, a lot of people on here have said that book is very helpful


#292

Hello everyone. It’s been a long road, one with sheer and utter frustration, fear, confusion, despair all the while being told I am simply depressed and anxious. Here’s my LONG story…


Just over six years ago, I awoke to the most horrific head pain. I felt as if my head was literally split in two, one side feeling cut off from any sort of sensation or feeling, the other feeling heavy and congested. This came shortly after a business trip to San Francisco, where I felt slightly 'off' and a bit anxious. I have always had sensitive nerves, so I thought nothing more while on business.

I took another trip to Nashville to visit family for Thanksgiving, and I can only describe the experience as surreal. I was in a complete fog, I felt as if I had a sinus infection, but I didn't. I was (as I now understand it) suffering from intense depersonalization/derealization. It felt other-worldy. I didn't understand what was happening. I came back home, continued to work and things got progressively worse each day. I began to have intense visual symptoms, carpet patterns, brick side walks, etc., looked as if they were moving and cause me to lose balance, lights would flicker in my peripheral vision, I became very intolerent to bright light/sunlight, I began to develop oscillopsia, my balance got even more difficult to manage, my ears felt full and were always popping and crackling. I began to develop tingling in various areas on my head. My ears began to ring daily. Straight lines (on the computer, particularly, as I work with spreadsheets all day) looked crooked. Neck pain reigned supreme. I had to hold my head up at the computer to get through my day.

At this point, I went to an ENT and he immediately ordered brain scans. His concern and action was assuring, yet terrifying. He was very cryptic about the tests he was ordering and why he was ordering them. In hindsight I could have asked more questions but I was too caught up in symptoms and fear that I just went through the motions.

MRI scans came back clear. Thankfully. But I didn't have answers. No hearing loss. Balance testing showed nothing remarkable. I was sent on my way, and told I was Depressed and Anxious. In the coming months, this would be the diagnosis de jour from every Dr I would see.

I continued to work, and my symptoms continued to get worse. More balance problems. Difficulty walking. Visual phenomenon increasing. It was at this point I had my first panic attack. I ended up in the ER, only to be told I was… Yes, depressed and anxious. None of my initial symptoms were being addressed. I told them I knew the difference between dizziness induced by panic vs constant, chronic dizziness. And how about the visual symptoms? Ear fullness and ringing? And what about the difficulty walking? Oscillopsia? Well, my inquiries into MY well-being were taken as paranoia and self diagnosing–surely the hallmark of the anxiety spectrum! In their minds I only proved them right. The next several weeks would unfold as predictably as that ER visit. No one would listen. All the while, I got to the point of being unable to stand on my own without toppling over.

After calling family, they flew down to Fla to help me. Through several tough days and frustration, on both my end and my parents end as they couldn’t understand what was going on, I ended up back in the hospital. More tests, more scans, more prodding and poking. I was bedridden. I can barely recall the days in the hospital, only remembering pieces of my parents conversations. My parents divorced when I was 8 and oddly, having them together, with me, in the same room provided comfort and solace. I heard tears, I heard confusion, I heard silence as they slept on the chair next to my bed… I can also recall a few conversations my parents had with the Dr. He decided it was time to go on anti-anxiety meds, anti-depressants and antipsychotics. My poor parents, lost in confusion and wanting answers, agreed and I guess I agreed as well. I concurrently went through some physical therapy to try and regain my balance. Standing on foam, taking walks, again, I barely recall any of this. I got to the point of being able to walk, but not comfortably. At this point, the Dr decided there was not much else they could do. I was concerned about this new slew of medication being pumped into me, and was fearful of going home alone to manage the possible startup effects. So I voluntarily checked myself into the hospital’s psychiatric unit. That was an eye opening experience.

I’ve always been a perfectionist, a curious, inquisitive soul, and after coming home I was determined to find out what happened to me. I kept honing in on inner ear issues during my incessant research, yet, the various conditions didn’t always seem to fit my symptoms (and at this point I ALWAYS skipped over MAV). I needed a reprieve from the balance issues, so I embarked upon my own vestibular rehab. And it worked! Two weeks of my own internet-researched, hastily thrown together ‘program’ and my imbalance was 95% gone. I still had issues in grocery stores/big box stores, I still experienced the visual issues created by patterns and lines, flickering peripheral vision. Still had issues with computer screens. I had to wear a hat at work to block the evil powers of flourescent lighting. But in my mind, having my balance back was a milestone and I was more than happy to have gotten to that point. I was back to work, poly-drugged on psyche meds. But hey, it seemed to be working.

Months passed and the lingering symptoms did not subside over time. Bummer. I really began to wonder if I was truly going crazy. Of course the various doctors all said this was a result of depression and anxiety, and mind you I did check myself into the psych unit after leaving the hospital. I increasingly became convinced that maybe they were all correct. I became obsessive about googling every symptom I had. My depression deepened, and my anxiety did kick up into a true disorder. What I didn’t realize back then, though, and what I seemed to have forgotten was that all of this was precipitated by the imbalance, dizziness, visual symptoms. But over the years the anxiety and depression diagnosis overshadowed all of those initial symptoms. And every attempt I made to understand my continuing symptoms at subsequent Dr visits–even 5 days at the renounced Mayo clinic–would be overshadowed by my chart and history. And the meds I was taking were making me sick. But I continued to try and live my life–full of isolation, anger, drinking, losing friends and distancing myself from family. I lost myself, my center, and my identity and ran on autopilot day in and out for 6 years. How I maintained my job, I don’t know.


In November of 2012, I decided enough was enough. I could not live the way I was living. It had been 6 years, almost to the day, that all of this first happened. My symptoms never subsided--waxed and waned, yes--but never went away, and my balance had gotten worse. I knew it was not a result of anxiety and depression and I would not allow one more Dr to tell me otherwise. I did some further research and found a widely respected balance center at a local hospital that I seemingly dismissed or overlooked the past 6 years. I promptly made an appointment, crossed my fingers and toes and went to the appointment armed with my history, and more importantly, confidence and assertiveness. I think I told him at the start of our consult that if I was told this was anxiety and depression and no attempt was made to explore other possibilities, there would be no reason to meet or continue. He listened. He showed compassion and care. He took my history, my prior scans, he asked questions, he probed, he talked to me--not at me. And he directed me to a diagnosis I am now looking towards with more confidence and interest. 

I overlooked MAV everytime I consulted with Google. Yet here it was, seemingly jumping, screaming, in my face telling me "you actually may have left one stone unturned." It took me several weeks and over the new year to research MAV. I had some resistance to this diagnosis, I was filled with confusion and doubt. I certainly lost faith in Drs... I was then directed to this tremendous forum, where upon reading all of your stories, the incredible information provided in the MAV FAQs and Discussion, the MAV survival guide (I broke down when I read this--so much of this resonated with me, it described me, it gave me validation for th first time...) and all of the other knowledge provided here...

What I haven’t shared is, as a child, I suffered excruciating migraines–migraines that no medicine could touch, migraines that rendered me useless, migraines that throbbed with every move I made, migraines that made me vomit to the point of dry heaving, migraines that needed complete silence, darkness and rest. From about the age of 7 to early teenage years, I would get a migraine and vomit, and that was par for the course. But I grew out of it, and from my teens until my late 20s I had only an occasional migraine and certainly not to the point of riding the vomit comet. In my 20s, I also had three or four bouts of severe spinning vertigo, but those attacks never lasted more than 30-60 seconds, and when they stopped I was fine. Shaken a bit, but physically OK. All fragmented, seemingly unrelated issues over a span of decades I never tied together.

That November, in 2006, the dam broke and brought me to where I am today. I never considered MAV. Until joining this forum–lurking, reading, crying, learning–I had never explored my past and never thought to connect what I endured as a child to what I am enduring now, still, at 35 years of age.

Today, I have a general feeling of reassurance and optimism–tinged with the old skepticism that re-emerges as I continue to evaluate where I am.

I have a prescription for Topomax that my Neuro-otologist scripted at my last visit to the Balance Center. I have not filled it because I am scared of more drugs that affect memory and recall, as my cognition has declined from the Benzos prescribed 6 years ago.

I’m going through PT for my neck issues, what seems to be a result of the poor posture I’ve had from holding my head at my desk the last six years 9 hrs a day.

Most importantly, though, I think I have the validation I’ve been searching for. As I continue to learn about MAV, it seems to look more and more like MAV may truly be the cause of my continuing symptoms.

It looks like it will be a love-hate relationship.

I’m a stubborn mule and it may take a bit more convincing, and garnering the courage to start the medication and tread through the cycle of trial and error.

Thanks for listening and letting me share my experience.

-Mark


#293

Mark
Your story is so similar to lots of people on the forum who have searched for years to find an answer to their terrifying & weird symptoms - in essence a horror story with no ending - until you find you are not the only person in the world who has been through a similar experience and there is much information, support & help available here on the mvertigo forum. So glad you found it!

I had all the symptoms you describe and only through finding this forum was I able to ‘self-diagnose’ & eventually find a neurologist who specialised in treating MAV. That was the beginning of my recovery. We are all nervous about embarking on med trials to calm the brain and some are very potent. However, you have obviously found the lists of evidence-based meds that can help. Topamax is one of the ‘first line’ meds that many mav specialists use. You may be fortunate & find this med is one that will work for you. If not, there many others to try. Two years ago I was a mess unable to function! Today, I’m 70-80% most days and looking for another med to add to the Dothep to hopefully get to 90%. I’m about to start my trial with Topamax too & because I’m very med sensitive I’m going to increase the dose at a very slow rate (one month between increases instead of the two weeks my GP suggested) to give it the best shot I can.
Barb


#294

Hello, I’m going on 33 for over two years Me & My Husband have been struggling to find out what is wrong with Me. It started out with strange feelings of falling that would startle Me, they thought its because I was stressed and not sleeping enough so I got a drug to sleep ( only took it once ), then there was a problem with my period, I was having it far too long which started scaring me, turns out a had a hormonal imbalance, started treating that with birth control. Then I had an ear blocked which led to an infection and then return ear infections. I was starting to feel really odd and off balance, couldn’t explain my symptoms very well just didn’t feel well. Went to an ENT who ran all the tests and found nothing, referred Me to a Neurologist who ordered an MRI of my head, everything came back fine… Just a cyst in my sinuses which is common especially with allergys. Went back to the ENT who said allergys would explain the ear infections and sent me to an Allergist… After numerous allergy tests and finding no real bad allergy I was diagnosed with Severe Vasomotor Rhinitis, a non allergic Rhinitis. I then ended up at the ER because I was freaking out being in the car, something about the motion was really making Me crazy, at this time I was actually on Lorazepam due to the anxiety and panic from My symptoms but it wasn’t helping on this day. So anyway at the ER I was diagnosed with another ear infection, was given Meclizine and an antibiotic, when I was done with that antibiotic I went to my primary Dr who said he could still see the infection, gave me a stronger antibiotic and sent me to the ENT. A few days later I saw the ENT who saw no ear infection an questioned whether or not I ever had one. I told him my ear still hurt and He diagnosed Me with TMJ and sent Me back to the Neurologist. The Neurologist diagnosed Me with Vestibular Migraines and told Me to come back to him after My Gyno tried something and he put Me on a high dose of B2 400 mg a day for a month, and 200 mg a day for the following months. In the mean time my Gyno put Me on continual Birth Control with no period pills because since a cyst burst in October my symptoms have been substantially worse and my period has been ongoing. I see My Gyno soon now, three months and still on my period even on the BC. My Neurologist says Vestibular Migraines are usually worse around the period, maybe that is why mine got worse since I’ve constantly been on it. My symptoms now are hot face (usually especially my chin), dizzyness /off balance sometimes making it hard to get to the bathroom, sometimes aching behind my eyes which sometimes brings on blurry vision, I get headaches in various places on my head but usually aren’t that bad, the other symptoms are much worse. I get ringing in my ears , sometimes whooshing and the noises change, I get weakness in my legs and arms and in my head… Sometimes feel like I can’t hold my head up. I get neck pain and motion sickness, from walking, watching a movie , the car… If I go to the store I go in a wheelchair and even that makes me feel sick. Usually if I stop moving and calm down I burp and feel better (gross I know). I have bouts when I’m laying down where it feels like I’m falling into the bed (rocking?) or going to pass out but usually don’t… But it feels like it. And I have days where things just look strange and I can’t explain it. I’ve been diagnosed with so many things over the last two years and been convinced that was what was causing my issues that its a bit hard for me to believe anymore Drs. Anymore. Does this sound like Vestibular Migraines to you. It’s aweful but I would be happy if it was because then maybe I could finally get the help I need to get My life back (and My Husbands, it has really affected him too). It’s crazy feeling like this and not being able to explain to people what’s causing it… I couldn’t hold a job like this, I’m just short of needing someone to care for Me… At times My Husband and Mom have had to. Would be nice to be myself again, I miss driving and hiking and being productive!


#295

Hello folks. I’ve been silently lurking for almost a year but decided to register tonight. My story is similar to all of yours.

Almost four years ago, during a work out at the gym, I noticed that the world just started to rock. I put it down to tired, not eating right, hormones or whatever and resolved to try and take better care of myself. In spite of attempting to ‘be better’, the rocking continued for six months. It was also accompanied by ‘drop attacks’, mental fogginess, slurring my speech, staggered walking and digestive problems. My partner put his foot down and finally took me to the ER in which a neurologist seen me and recommended an MRI. The MRI caught a benign brain tumour in the pituitary area but the neurologist said that wouldn’t cause the balance issues and wanted to send me for more testing.

That started a two and a half year spell of waiting to see other specialists (I live in Canada where health care is free but the waiting periods are long). During this time, I was pretty well confined to bed and house and also experienced seizure like episodes to noise and/or flourescent lighting. I went through the gamut of possible conditions and testing for possible conditions. Each specialist had a different take and ranged from Tulio’s Syndrome (Vertigo caused by noise) to Meneire’s to a whole bunch of other ones that I hardly remember.

Just before my first appointment with an ENT to get the results of my vestibular testing which had been pre-arranged, my neurologist and I stumbled upon research on gluten ataxia. Celiac is in my immediate family so I did the gluten challenge prior to testing for it. The results were inconclusive however my neurologist said that the testing is specifically for villi atrophy and gluten ataxia involves a different immune response and antibody response. Testing for this is still being developed. This was a couple of weeks before the ENT diagnosed MAV and wanted to give me the medication to calm it. I told him I wanted to try being gluten free first to see if that resolved some of the issues.

It’s been a year since I went gluten free and my fatigue, intestinal issues, slurring of speech, mental fogginess and neuropathy have slowly disappeared. I was still having some issues with (decreased) vertigo attacks, sensitivity to flourescent lighting and some noise but these have resolved with close adherence to the migraine diet of which I was first alerted to on here.

I’m pretty strict about gluten free which means eating no processed foods (even products labeled ‘certified gluten free’ since this only means they have been tested to under 20 ppm gluten) and being careful of other grains as they can be contaminated in the manufacturing process by gluten grains. The migraine triggers were very helpful and I eliminated all those as well.

I’m in the process of trying to get back to working and ‘having a life’ and am pretty hopeful about the future. Anyway, thanks for listening!


#296

My ten year old son has been diagnosed with MAV. He gets dizzy, and very tired, feels like he is in shock. The episodes last 7-10 days. So far we have identified dehydration as a trigger and fun park rides. Nurofen seems to help a lot and water. We are also using a pill called Senier. This helps stop the dizziness.

The nurofen and the Senier pill are reducing the episodes, but he still gets a fair bit of dizziness and tiredness.

Have not changed diet yet. But noticed that aged cheese and citrus fruits are a bad idea.

Has anyone else had a child this age with MAV?

Any tips appreciated.

thanks

John


#297

Hi guys,

Just wanted to say thanks to all of you have been following my blog which charts my frustrations with dizziness. Just written a new post about not trusting my diagnosis at…
www.dizzytimes.co.uk

Anyone else find themselves constantly questioning the doc?

Thanks,

Henry


#298

Hi Henry I read your blog but when I tried to comment it erased everything and I just starred at the screen blankly enraged!!


#299

Thanks for reading. Sorry about the inability to post a comment - blogger can be fiddly. Other people have been able to do - perhaps your computer?

Hope you found it useful!


#300

Hi I am 43 years old from uk.
I woke up 3 months ago with spinning vertigo and didn’t know what was going on. I was constantly off balance, pressure in the side of head/eye/ cheek and I could bring on spins if I turned/ looked up/ down etc. I asked my gp if it could be linked to migraine with being one sided and that I had a migraine a few weeks prior to the dizziness and he said no it was to far apart. I got referred to an ent specialist And in the meantime I got prescribed prochlorperazine and over the weeks the felling of bobbing/ rocking on a boat eased but I still had vertigo if I turned certain ways. I still had an odd feeling in the left side of my face and I went to see an optician and said everything was fine. I couldn’t understand how my eyes were perfect but my left eye felt strained and blurry all the time. My cheek kept feeling swollen or I had been hit.
I saw the ent who was useless and because my spinning had eased he said I was ok even though I told him I was dizzy when I sat up.
So I am no further forward really. I have symptoms every day with my head either pressure, headache, burning feelings and constant dizziness. If I sit still it feels like my head is swaying side to side all the time and if I bend down I feel dizzy.
Also one night lying in bed and my head did an awful whoosh for a second and I felt panicky, when I got up to go to the loo the floor was bouncing/ shaking with every step.
Everyone says its anxiety but I have been researching and it sounds like I have mav. I am down with the symptoms and crying everyday thinking I am dying from a brain tumour that’s getting undiagnosed.
Do any of these things sound familiar to mav?