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#201

Hello! I am new to the board but have been lurking for a few weeks…decided it might be time to post my story for what it’s worth. I have enjoyed reading the experiences of others…some sad, some happy, but all of us have had a journey, some more difficult than others.

I will try to condense my story a bit as it is quite long. Way back in 1999, I had an ear infection. The ear infection led to bronchitis, then pneumonia in quick succession, despite the use of increasingly strong antibiotics. Once the infections cleared up, I was left with a feelin of “dysequilibrium” which was then dianosed as viral labyrnthitis and I was told by my ENT that it would just “run its course”… So being the good patient that I was at the time (as I up to that point had never had health issues), I waited, and waited and waited… Finally, aftre 6 months and increasing bouts of disequilibrium, my husband and I went to Johns Hopkins in Baltimore to see Dr Minor. There I had the tests that are probably familiar to all of you…spinning chairs, water in the ears, balance tables, etc…oh joy! Although Dr Minor saw a small percentage of damage to my right ear, he felt that I should be compensating for it and decided that I needed to be seen by a neurologist. OK… again… a round of increasingly more invasive tests…MRIs and MRAs, 3 spinal taps, and the worst of all…a brain angiogram… During that test, I experienced a vascular spasm which led to … a terrible migraine and double vision… Yay…now I had dizziness, double vision and a migraine… After a few days resting in the hospital I returned home straight to my bed for a period of time… and waited…and waited… Although the double vision and headache cleared up, the disequilibrium feeling remained.

Then…a diagnosis from Hopkins. I had multiple sclerosis. Although my clinical symptoms did not exactly indicate MS, I had “paraventricular white matter” or lesions on the brain which helped to diagnose MS in my drs mind. He did admit that it was an “unusual” presentation, but still felt confident i his diaagnosis. Not what my husband and i wanted to hear, but at least we felt that we now had a diagnosis and would be able to have medication or physical therapy to help with my symptoms. I started a course of Avonex ( a weekly shot) and continued that for a year. In the meantime, my husband and I went to both the Cleveland Clinic and the Mayo Clinic for second and third opinions. Both concurred with the diagnosis. So armed with diagnosis from three of the best hospitals in the US, I accepted the fact that I had MS and that was that.

A year later, I was diagnosed with “neurological lyme disease” and underwent 6 months of daily IV infusions. Again, no fun, but I trusted what they were saying.

Years went by and I continued with my life the best that I was able. Some days were ok, with mild dysequilibrium and some days were horrible… I kept busy raising our son and being an “uber volunteer” to keep very busy. Unfortunately, quite often my symptoms got in the way! Let me add here that I have a wonderful husband of 28 years who has been by my side throughout this journey…always there for me. Despite the fact that he is an executive with a major fortune 500 company, he has never missed a doctors appointment and has taken me around the country to find answers. Thanks for that honey!

Fast forward to last year. I was at my annual “Hopkins checkup” with my latest MRA. The lesions which had been small had for some reason become quite numerous and large. My doctor was puzzled because the lesions had stayed stable for over 10 years. Also, I had been having a particularly bad spell of syptoms prior to my visit… continued disequilibrium, migraines with aura and pain (which I really hadn’t had before), severe fatigue and vomiting…such fun this is!! At that point, my doctor raised the idea of “vestibular migraines” and sent me to see a colleague…the “dizzy dr” at Hopkins…

"Dr Dizzy’ (I mean no disrespect to him with that…he is called that!) agreed that I was having silent migraines and that I probably did not have MS after all…WHAT??? My husband and I looked at each other and tried to digest this information…happy news to confusing too…what the heck were silent migraines?

During my years of dizziness, I had also developed some symptoms of panic disorder as most of us do… very difficult to control when you are dizzy. I had walked out of meetings, stores, pulled my car over (when it became difficult to drive) and this ugly disorder raised its head quite often. I was given Ativan to help deal with that and it seemed to relax me.

Taking the new diagnosis in hand, my husband and I saw Dr Rosenberg at the Hopkins Headache Center (who actually gave me this website) and also a doctor at the Georgetown Headache Clinic which is closer to our home. Both concurred with the diagnosis.

So…here I am newly diagnosed with symptoms that have become even worse…disequilibrium, severe fatigue, vision issues, migraines with lots of pain and oh yes…let’s throw in a panic attack or two!

Dr Rosenberg started me on Topamax but after 2 weeks I developed a rash over my body. Obviously i was allergic! I was liking it though and hopeful that it would work. I was switched to Verapamil (80 mg) at night along with Ativan three times a day as needed. I forgot to mention that I also have something called Vocal Chord Dysfunction which causes my vocal chords to spasm and make me feel that I can’t catch my breath. The ativan helps with that also.

So…here I am at present day…phew! sorry so long, but wanted to get my saga out…it is cleansing!

I am a very positive, “glass half full” type of person. I have been educated with an undergraduate and graduate degree. I have a wonderful, loving husband and a 19 year old son who attends one of the top universities in the country, plays football at that university and has never given us a day of worry. I’m not trying to brag here…just to give you an idea. This disease has brought me to my knees!! I have all the support in the world…have seen the best doctors…have been misdiagnosed…now hopefully on the right path…but still not feeling welll!! I have been on the Verapamil for about 6 weeks and just had my first migraine last week which is still in process… I have been unable to drive or do anything for that matter. I was told to take Ativan three times a day along with Benadryl and that has helped a bit…

So here I sit…hoping to feel better each day. It is very comforting to read your stores…now you have mine and I’m hoping that this site willl be able to post many more success stories along the way. I’ve read some compelling stories from some very compelling people. I hope that my story can also help in some way and I hope that I will be a success story at some point. I refuse to give up. I’m stubborn that way :smiley:

Thanks for allowing me to be a part of this I look forward to any ideas and comments that anyone may have.


#202

Hi my name is melissa, I am 38 years old. I was getting silent migraines on a regular basis for the first time about 12 months ago, I went to the chiropractor and had an adjustment on my neck and back and I never got another one until I jarred my neck or crinked my neck one morning before work and I got another silent migraine the first one in 12 months. So i know that it is definately related to my neck and back. I sit at a computer all day at work and on the phone. So I went back to the chiropractor and had another adjustment. I would strongly recommend anyone who suffers with silent migraines to maybe have a visit to a chiropractor before spending a lot of money on doctors and medication and tests, it worked for me and I hope it works for you too.


#203

Hi everyone,

I’ve been lurking on this forum for awhile but haven’t posted at all, and I decided it’s time to change that. I’m a 25 year old female who prior to last year had no health problems at all–healthy as a horse since childhood, although I did have pretty significant issues with motion sensitivity when I was young.

In late July 2010 I woke up with a strange wooshing noise in my left ear. Over the next few days it grew worse and was joined by other noises, some dizziness, and anxiety. I initially attributed it to my dental issues–I grind and clench my teeth at night pretty badly. Eventually I went to an ENT, who diagnosed me with Meniere’s due to a test which demonstrated reduced hearing in my left ear. I really did not like or trust this doctor–he wouldn’t explain anything, was very dismissive of my concerns, and was incredibly abrupt and rude.

Luckily for me, I live in Boston, and after doing some research online, checking out PubMed and researching things myself, I decided to visit Dr. Rauch. Dr. Rauch thinks I have MAV, and so here I am. I have many of the same symptoms that you all describe–auditory, visual, you name it. My least favorite symptom, I think, besides the dizziness, is when my hearing is not only incredibly sensitive, but distorted, and everyone starts to sound like robots to me. Ugh.

I have been feeling somewhat better lately, I think due to my now very vigilant sleep schedule, daily exercise, and serious attempts to never become dehydrated or too hungry. I have been trying the Buchholtz diet for the past few months, with mixed results. I do think that coffee, particularly decaf coffee, was exacerbating my symptoms, and alcohol can be problematic if I’m already dizzy. Apart from that, I’m not sure I have dietary triggers. I have slowly been adding back foods recently–fresh goat cheese being the most recent addition, which has been wonderful, since I am from Wisconsin and cheese is a dietary staple. (=

At this point, I’m not on any preventive drug. I’m considering whether going on the Nortriptyline is worth the potential side effects. I did just get a prescription for Lorazepam for my bad days, but I haven’t used it yet.

I am working toward my PhD in English Literature, and I teach college English currently, which I absolutely adore. I hope I can manage my symptoms well enough to continue in such a demanding career…we’ll see.


#204

Hi all. Have read lots of your postings and cannot believe so many people have and are experiencing my wackyworld! For years, I thought I must be the only one who was crazy and running from specialist after specialist to find the answer for my frightening symptoms. At the time I was 41 yrs old and a single parent of two small girls. I fully agree with those who say the anxiety is caused by the symptoms. When your life is falling apart who wouldn’t be anxious? When doctors look at you like you are crazy, who wouldn’t be anxious? When driving becomes frightening = anxiety. When you cannot shop or move around your own kitchen = anxiety. When you have to crawl to the bathroom to be sick = anxiety. When one doesn’t have the accurate words to describe what you are dealing with = anxiety. I had no idea “dizzy” could have so many meanings. I finally had to explain it was a rocky boat feeling and it didn’t come in “spells”, it built up gradually through the day. After the ususal eye exam, caloric testing, MRI, MRA, Spinal Tap, EEG, EKG, numerous times and all coming back negative, I sincerely thought I was crazy. When the doctor stands in front of you and sways back and forth while talking and you have to ask him to stop - crazy? Anyway, after many years, many tests (even ones developed by NASA), I started getting some answers. I do, in fact, have MAV. I traveled to a hospital in AZ for what was then called an Equitest. They didn’t have it in my area. I learned first that balance is controlled by three things. Your vestibular system, your vision, and the info also being sent to your brain from your muscles. This test is computerized to assess how these three things are working. They alter the floor you are standing on as well as your visual environment. (You are harnessed like a skydiver, just in case you fall.) It was determined I am dependent upon my vision for my balance, thus my car sickness as a child when you cannot see out the window and cannot see the horizon. Well, that was just the beginning. I did, in fact, have vestibular physical therapy which helped me greatly to understand how to compensate in many areas. The Vestibular Disorders Association helped me a great deal and best of all - mentioned Dr. Baloh. Upon seeing Dr. Baloh at UCLA my anxiety level diminished considerably. He knew exactly what I was trying to relay to him and his staff understood every awkward thing I said. After a few more tests and his review of ALL my other tests, he explained MAV to me. It made perfect sense.

I’m afraid I did, in fact, have to leave my employment of 23 years and go on disability and thank the Lord I also had a private long-term disability plan which enabled me to pay the bills and support my daughters. I was denied at first by SSD and then I wrote a long letter detailing every dr. appt., every test, every medicine tried, and put it in their hands to give me a diagnosis (that was prior to seeing Dr. Baloh). They awarded it to me.

Yes, my life is far different than it had been. I usually do important things in the a.m. as that is when I feel the best. Driving is still stressful and I stick to the city streets. My world has narrowed a great deal. Vacumning is impossible because of the movements. My head has to be supported to read, watch TV, etc. I sit like a three-legged stool to maintain a feeling of balance and “heels” are out. I have to feel the ground under my feet. I take verapamil 180 mg ESR at night and I use Klonopin first thing in the a.m. Depending on how the day goes, I may take another Klonopin later. Usually, I take only one a day. (I don’t understand how others use it to sleep - It doesn’t have that affect on me - it calms me for the day)

I’m sorry to have rattled on and on. I have left out lots but if anyone has questions, just ask. I recognize all the triggers you have shared as they are mine as well. Incredible to see others say the same things bother them. :slight_smile: Thanks, Betty


#205

Hi everyone, I just joined, fizzixgal from the east central USA. Some of you know me from menieres.org. I’ve been dealing with this for almost two years now and no end in sight. No one knows exactly what I have, but different doctors I’ve seen have thrown around both Meniere’s and MAV as possibilities. This is a crazy and scary way to live, as everyone reading this knows! I’m finding it especially scary since I’m in a job that I just started in September, that I took without telling my department chair about my health issues, and which if it ever comes out I’m almost certain to lose, since it is renewed on an annual basis and is very much “at-will”. So please understand if I’m not too forthcoming about exactly where I live or what I do – it’s for my protection.

It all started two years ago with a few seconds of spontaneous vertigo: I was sitting in a room with friends when all of a sudden the room started to spin to the left, exactly as if I’d been twirling around to my right and stopped suddenly. It lasted all of 30 seconds if that – probably more like 15 seconds. I knew about BPPV and assumed it was that. But a week or two later I started getting carsick when riding with a friend who drives a tall, top-heavy SUV. I was fine in my own low-slung station wagon but couldn’t take the constant rolling motions. That lasted maybe three weeks, then went away. Then I woke up one morning and couldn’t walk straight to the bathroom. That turned out to actually BE real BPPV, which I confirmed with a Dix-Hallpike and treated myself with a home Epley. The next six months are a blur at this point, but I remember being fine most of the time unless I did strenuous walking or bicycling, when I would start to feel as if the left side of my head was missing, my left temple tingled and I felt pulled to the left. My first neurotologist said I most likely had migraine and tried me on an abortive (rizatriptan) which did nothing at all when I was having symptoms. My symptoms then were mostly that whenever I moved my head quickly and repeatedly, I would start to get “motion trails” as I call them, where my head feels like it’s still moving in the same direction even after I’ve stopped. That would happen even when I talked, and for a while I thought I was experiencing Tullio’s phenomenon, i.e. sound-induced vestibular symptoms with the sound of my voice as a trigger. But gradually I became less sensitive to exercise and motion, and I was fine for several months except for about 4 weeks last March when I was under a lot of stress at work and started to feel as if I was falling forward whenever I would bend over to read. But that went away too. In the process though I found a new neurotologist who revived the migraine possibility, and put me on propranolol as a preventative.

Then last July I woke up the day after the July 4th holiday with a horrible din and distortion in my left ear, and a 30dB loss at 250 Hz as measured at the otologist. They tried me on a monster dose of acyclovir and prednisone, which turned me into Superwoman who felt no pain and could ride my bicycle 30 miles as fast as I could pedal without getting tired (ha!). They didn’t seem to do anything for my hearing though. Then I wound up in ER with severe constipation (sorry for the TMI) and it came to a colonoscopy and all that (all clean!). So I stopped the new meds, including the acyclovir. My hearing started to cycle up and down and I had a little disequilibrium in its own cycle that was 180 degrees out of phase with the hearing. Now they started saying Meniere’s for sure and wanted me to consider steroid injections into the ear. No thanks, but I did start on Dyazide. In September I saw the new neurotologist again who agreed to start me back on low-dose acyclovir, and also started the JOH Meniere’s regimen. With the help of some info from menieres.org, I finally convinced him to prescribe the Gacek acyclovir regimen, which is a starting dose of 800 mg t.i.d. gradually tapered to once a day over two months. Eventually my hearing stabilised until all I have left now is a mild distortion of the low frequencies, with no actual hearing loss. This guy says he is not comfortable with saddling me with a Meniere’s diagnosis though, and feels migraine is more likely, especially because I have the typical white spots on my brain MRI.

Fast forward to two weeks ago, when I came down with a nasty scratchy throat along with an upset stomach. I noticed that I was getting motion sick again very easily, and started to get the “motion trails” as well. Since I teach in a classroom and have to turn around a lot, I’ve been finding work VERY tiring and have to come home early every day and nap for a while. The headaches have been horrrible too: low pressure and pain in the face, and behind the eyes, and at the base of the skull, that only a full night’s sleep can touch. But I’m not having spontaneous vertigo at all, just a chronic motion sensitivity that gets worse the more I move around. I think it’s getting worse too, and I’m starting to worry that I might have to take time off work which I really can’t afford to do since it would mean someone else filling in for me, which would pretty much ensure that my position wouldn’t be renewed for next fall. I have an appointment with my neurotologist in May and can’t really get in any sooner, so the best I’ll be able to do is beg my GP (who is also a cardiologist/internist) to try me on verapamil which is the only migraine prophylactic he’d be willing to prescribe. The others really scare me anyway since I had a bad experience many years ago with SSRI withdrawal syndrome, and some of the others have really horrible side effects (like tardive dyskinesia).

So that’s my story in a “nutshell” (well a pretty long one I guess, sorry for being so long-winded). I don’t know what I have but it is scaring me more and more and I’m at the point where I don’t know where to turn. I’ve had every kind of neurological disease known to medicine over the last two weeks (in my mind of course!) including both major kinds of stroke. But I keep coming back to migraine, so here I am!


#206

Greetings all,

Like a few others I too have been lurking around this forum for a while. Figured it was time to say Hi and to tell everyone else my story.

My ordeal started about 3 months ago, the week before Christmas. I work for a software company, so my day consists mainly of staring at a computer screen, reading and writing code, and other non-glamorous computer related tasks. I had been going for a while burning the candle at both ends, getting probably 4 -5 hours of sleep a night for a couple weeks in a row. I’ve had migraines before, and they always seem to come when I’m short on sleep and pushing too hard, and strangely enough when I awoke the morning that this all started I remember thinking ‘I hope I don’t get a frickin migraine today’. Funny thing was, I DIDN’T get a migraine… at least… I didn’t think I had gotten one.

What I do remember is that at around 3:00 in the afternoon I was talking with a co-worker standing in my cubicle and all of a sudden the world got weird. I wouldn’t call it dizzy, but I got more of a lightheaded, disoriented kind of feeling, and then WHAM, panic attack. I’d never had a panic attack before, and I had no idea what was happening. Work called an ambulance, I spend a couple hours at the ER going on an up-and-down roller coaster of lightheadedness/panic, only to be told I had had a panic attack and sent home with a dose of lorazepam.

Woke up the next morning and felt this weird lethargic, spacey kind of feeling - tired… brain fog… kind of unsteady… Off to the primary care for the ER follow up and I mention how I’m feeling. She attributed it to the panic attack and I was told it would pass.

If only, doc… if only.

The next three months got a little weird. I was back and forth to doctors more times than I can count. The tired/groggy/brain fog never went away, and it started to be accompanied by this constant dizzy/rocking feeling - like you are standing on a boat and fighting the rolling of the waves. I tried to keep up with work, but being in the office staring at my computer made the symptoms go from a 2 to a 5… and most days I wound up working from home on my laptop in a dark room. I started to notice that fluorescent lights made things worse… stores, offices, work…anywhere that was bathed in fluorescent light was nearly intolerable. Lack of sleep also seemed to exacerbate things. Computer screens didn’t help either. Sometimes even watching TV or looking at my phone would set things off. The rocking/dizzy feeling never went away, but was punctuated by tension headaches and sleeplessness, and some days I was absolute junk - unable to do much more than drag myself out of bed. Sometimes even the thought of looking at a computer screen would make me dizzy, even nauseas. Lound noises didn’t help either… kids would drop a toy on the floor and WHAM… brain seems to unhinge for a moment or two. And the whole while I’m off my rocker with anxiety… as I’m sure a lot of us on this board are. Plug your symptoms into google often enough and you’ll soon have convinced yourself that you have MS, BPPV, Menieres, a brain tumor and Vestibular Neuritis with a splash of insanity thrown on for good measure.

I was given a diagnosis of Labrynthitis by my primary, and also a prescription for Meclazine. “This will pass”, she said again, “It is just viral.” The Meclazine did little but make me tired. The dizziness seemed to get worse. Well, a month later it hadn’t “passed”, and I went back and basically told her that I couldn’t take it anymore. I can’t keep going like this. I was barely keeping up at work. I dreaded getting out of bed in the morning. So I got referred to a specialist. Of course, it was 45 days until the specialist could see me… and so I waited. And waited… and waited some more.

I understand that specialists can be busy. I understand delays… but to someone struggling to get through every day, 45 days can be a frickin eternity. But, last monday, I finally got in to see the specialist, one of the doctors at MKM associates, an ENT center in Portland ME that deals with all things ‘dizzy’. Halfway through the visit the Doc is smiling at me… like he knows something I don’t know but isn’t ready to share yet. He tells me I’m going to go through some additional tests, but that they will all come back negative. And he’s right… I spend 40 minutes with a dizziness therapist, and I ace all of the tests that they give me. There is nothing wrong with my inner ear… it is not BPPV, Labs, or any of the other conditions that cause dizziness. So he proceeds to tell me about MAV.

OK - so I’ve had migraines before… but they are always the same - sharp, stabbing pain right behind my right eyeball that goes away after pounding a few glasses of water, taking 4 advil, and sleeping for about 12 hours. But something about it made sense… this all started on a day when I almost KNEW I was going to get a migraine. The not sleeping, pounding the coffee… pushing myself… working 60 hours a week… that was my migraine trigger every time. And then I started thinking about the other symptoms… lights, sound… not sleeping makes it worse… replace ‘terrible headache’ with ‘really dizzy’ and all of the other symptoms fit. Alright, Doc… I’m picking up what you’re laying down. Now how do we fix it.

Started that day on 12.5 mg of Amitriptyline at night prior to bed. I was also given the ‘migraine diet’, and told to pound water until I had it coming out of my ears.

Things have gotten better… not fully back to normal, but better… I’m actually able to write code again without wanting to pass out/throw up. Work seems do-able again, and I just seem to be a little bit closer to my old self… The rocking is still there from time to time, but it is manageable. I’m not sure how much I like the Amitriptyline… and breaking the 25 mg pills in half has been a pain in the arse. I got some of the powder on my tongue a few nights back and had my tongue go numb for about 2 hours. Interesting stuff. But it seems to help, and so I’ll stick with it for now.

From reading some other stories in this thread I can see that I’m actually one of the lucky ones. It ‘only’ took 3 months to get a diagnosis, and my symptoms, although they seemed bad enough to me, don’t sound half as bad as some others. And I seem to have light at the end of the tunnel. I can’t imagine the years that some people have spent with this, and I hope to never have to live it.

My thoughts and prayers to anyone else who has had to go through this. And my thanks to the docs at MKM. If anyone else in the Northeast is dealing with this I recommend trying to get in to see them. They just seemed to ‘get it’.

Thanks… I’ll get off my soap box now.


#207

Hi all
After reading the forum for the last 6 mths and posting the odd message, I realised I’d never written my story here.

I’d always had 1-2 migraines with auras (flashing lights) and bad headaches each year but as I never felt like lying in a dark room, I never thought of them as ‘proper’ painful migraines. I just thought they were bad headaches.

I first got symptoms of MAV in November 2009. It started off with a few days of tension headaches which I always get when the seasons and weather changes. That weekend I fell over and ended up in A&E with strained ligaments in my elbow and for the next 2-3 week following the fall, I had constant mild headaches. (i’ve always wondered if the fall was the final trigger that caused the MAV to develop). Once these Headaches stopped, I started getting earache and dizziness. I went to the doctors, got treated for an ear infection and then went back when the dizziness didn’t go away after a few weeks

They then diagnosed BPPV and referred me to the ENT to have the Epley Manoeuvre. By the time I got my appointment in March 2010, the BPPV had disappeared but the dizziness remained. After a few basic tests, the ENT diagnosed MAV. He said to wait a few months to see if it went away on it’s own and if not to go back and see him. I went back in July 2010 and since then I’ve been trying different medication prescribed either by the ENT and now my doctors.

I’m lucky that on most days, the vertigo isn’t too bad and I just feel like I’m on a boat or slightly drunk. It doesn’t affect my life too much. However tiredness and stress doesn’t help and from July 2010 to December 2010 I had a few bad months where the dizziness was bad and it was a struggle to keep going with everyday life. I was very tired, dizzy and had brain fog. I had 5-8 days off work over those few months but mostly I still struggled in as we’re really short staffed this year.

So at the moment I’m just trying to get on with life. I’m not taking tablets at the moment as the earlier ones didn’t help and I wanted a break. So I’m just trying to find my triggers so I can avoid them and try to get as close to normal as possible. I still dream of the day where I’m 100% better and I always make sure I enjoy the good days.

This forum has been a great help to me as I learn more about MAV. Thanks for listening

Jeni


#208

For me, this whole thing kicked off when I was 15. I smoked a bit of a joint one day with some friends, and it gave me these horrible weird feelings – kind of like I was hypnotised or something. I’d be talking, and then I’d kind of ‘come to’ and not really know what I was talking about. Also my vision went really bad – dark – fuzzy – like I was going to faint – and I felt really dizzy. Being 15 and stupid I tried it again another couple of times, and it was the same each time. So, that was it – the whole thing had been triggered. After that, I felt constantly weird, scared, panicky and like my vision had never gone back quite right. I also started having funny turns where I felt like I might faint – I remember one in particular when I was in a supermarket with my Mum, my vision went dark and I felt faint and I had to get out. That was the last time I went in a supermarket for years.

I managed somehow to complete school, feeling anxious and dizzy and like I couldn’t see properly the whole time. I began to withdraw socially, because I was feeling more and more uncomfortable going out and doing things. I did a short college course and then I found a job where I could sort of hide in an office and I didn’t have to mix with people too much. I went to the doctors a few times around this time, and was just told I was depressed.

I can’t remember the timings of everything properly apart from the very start of it and the last few years. All the middle bits are a bit of a blur. But at some point I asked my doctor to refer me to an eye specialist, which he did and they said there was nothing wrong with my eyes. I was convinced there was because I knew I couldn’t see properly, but I was just told I was depressed and anxious. I was given all the different SSRIs over the years as well as beta blockers and anti dizzy tablets (Stemetil or something I think). I don’t think any of them did anything really, although I am now stuck on Sertraline because if I try to come off it I get severely dizzy – like spinning dizzy.

I came across a book one day (about 15ish years ago). I can’t remember the name of it but I could look it up if anyone wants to know. It was called something like ‘Phobias – not all in the mind’. It was a whole book all about the inner ear and how it can cause visual and balance symptoms, which in turn can trigger fears and phobias. I felt elated and thought I had finally found out what was wrong with me. I took it to my doctor and insisted he borrowed it and read it. He apparently did, and agreed to refer me to an ENT specialist. So I went there, had a hearing test (that’s all) and was told there was nothing wrong with my ears.

Over all those years I also tried counselling (several times), CBT, hypnotherapy, osteopathy, chiropractic, homeopathy, acupuncture, cranial sacral something or other and loads more things. Every single thing drew a blank. Every single time I went to my doctor it was all blamed on depression and anxiety. I got referred to a psychiatrist when I was in my 20s who said I had panic disorder, social phobia and agoraphobia. Everyone always saw the dizziness as a symptom and not a cause, even though I told them until I was blue in the face that it was the other way round.

Some years down the line, after pleading with my doctor he referred me to a neurologist. I went and he checked my reflexes, told me to walk in a straight line, asked me a few questions and told me I was fine physically and that it was all in my head.

I had two children, and after each birth I was even worse. I could hardly go out the house for months, years even, and I wanted to die. Again I was told it was all mental – post natal depression and anxiety. I was dizzy all the time and my vision was wrong, but still, I got nowhere.

A few years ago I was chatting to one of the mums at my son’s school, and she said that she’d had similar symptoms and she’d had the Epley Manoeuvre, and it had fixed her. I went to my doctor and begged him to send me to the lady she had seen. He wrote the referral and almost 4 years later I finally got the appointment through. I went and had a test where they turn the lights of and tell me to follow a red dot with my eyes (that’s all). The results came back normal.

I saw a different doctor on one of my visits about two years ago. I was crying and telling him I wanted to die and that I knew I had some undiagnosed brain disease. Why else would I be so dizzy and why else would my vision be so messed up. He said he could arrange an MRI scan of my brain if it would help put my mind at rest. He did, and it was normal.

And so here I am. My symptoms have been with me to some degree since that fateful day when I was 15 and smoked weed. I’m now 38, and every day I feel dizzy – not spinny so much, but spaced out, lightheaded, sort of as if I am only half-conscious. I have so many visual triggers, it’s silly. If I walk or look around too much or look at any kind of flickery lights or indepth patterns I feel like I’m going to faint. I’ve wondered if it’s MS, epilepsy, a tumour, Parkinson’s and a million other things. All I do know for sure though is that THE VISION AND DIZZY SYMPTOMS CAME FIRST. They were not a result of anxiety or depression. I was a young girl with my life ahead of me. I was intelligent, outgoing, positive and happy. Then BAM. My life was taken from me and I never got it back.

I don’t really think it’s MAV to be honest, because I haven’t read one story that has made me think ‘omg those symptoms are just like mine’. I don’t have the whole spinny thing like true vertigo. Well except for once, when I went on a couple of fairground rides with the kids, and afterwards I couldn’t even walk in a straight line for several hours, and all I could do was go to bed. That’s the only time really. Other than that it’s just the other stuff - weird vision, about to faint feelings, spaced outness, brain fog, bad memory, no concentration, confusion, disorientation, a weird feeling of my head being too heavy like it needs to be supported, and loads more weird inexplicable stuff.

Anyway, there’s my story :roll:


#209

Hello Everybody,

My name is Teresa , Im 36 years old , Im originally from Mexico City and I live in Vancouver, Canada.

In October 2009 while backpacking in Europe with my husband I had my first black- out that is how I call the first “Vertigo” attack because it felt like if I was going to pass out , I thought it was just that I was super tired and jet lagged, I had a couple of episodes in two weeks that were really scary but on the last one I ended in an ambulance and taken to the Hospital, as I thought I could be pregnant the Doctors in Austria decided not to do a CT scan until I could go back to my country, I was able to walk out of the Hospital but since then I was never back to feel at 100%.

My Husband and I used to worked on cruise ships traveling everyday and that made it very difficult because I could not see a Doctor on any port that could diagnose what I had, however the Doctor onboard the ship gave me aspirins and SERC , he said it would take few weeks to clear up the dizziness , after 6 weeks I still had severe episodes so I managed to have a CT scan and an MRI in Malta, both came up clear and to signs of tumors, but because we were on the ship the Doctors onboard asked me to wait until I could go back to my Country.

When I got back to my Country after 7 months with this dizziness we learned that I was a month pregnant so when I finally got to visit a Doctor in Vancouver she said I had to wait until after the delivery of the Baby to see an specially as the body changes and hormones can affect everything around , I think pregnancy did help me to feel better but not and never back to 100% , my Baby was born 6 months ago and with the lack of sleep and tiredness I really had to wait because I was a total mess !!

Im waiting to see a neurologist who hopefully can tell me what I have.

I never had any pain in my ears or anything that I could say it was something to do with my ears or infections, I feel most of the times unstable, when I walk I feel like pulling to the left ( always and only to the left ) at least 20 times a day or more feel like it there was an earthquake when all of it sudden everything moves violently, long drives, swimming, open spaces, if I dont sleep well or Im nervous also makes me feel more dizzy, I also feel like the muscles in my eyes are sore and blame that on the lack of sleep but it is not all the time, sometimes I think is an eye problem as I had the lasik surgery (?) also when I feel bad or I know Im having a bad day I feel like tingling in the upper part of my cheeks close to my eyes, now feeling dizzy makes me anxious but I have learned not to panic because panic can make the feeling WORST so I try to breath slowly and calm down, most of the times I have 7 to 9 bad days at a 70 % and 3 to 4 days at 90 % maybe once a month I feel 95 % and that is like the happiest days ever !!!

I have been dealing with this using the sea sickness wrists bands, I tried not to use them a lot so my brain can try to correct my problem but I ALWAYS have them close by and use them when I feel like Im about to fall in public, I also carry with me the homeopathic tablets call vertigoheel that I bought in Spain.

I just learned from this site about VRT and I found one clinic near our place but it is very expensive and so I was thinking to also see an acupuncturist but Im waiting still for the neurologist.

Sometimes I feel really depress and useless, I look at my Baby and makes me cry that Im not able to feel safe for driving and that Im always scare to go out and walk on my own in the streets, I found a job starting in May and Im scare really scare to go back to work because I dont know when the vertigo attack can happen again :frowning:

Although I HAVE NO HEADACHES, now AFTER reading this page Im pretty sure I have MAV because it describes me like 99% and I have decided to fight the MAV with a VEGAN diet and follow the Migraine Diet mention above by Scott, this is while Im waiting to see the neurologist, I really hope to see some improvements, I will write everything that I eat and what I do, will follow a routine , in other words I will clean up my system and slowly try things up to see if there is any trigger to the MAV, I have been reading days , weeks now about the Vestibular disorders and I have seen by many people and Doctors that Diet and Medication can make hugs improvements, I also believe that things happen for a reason and that this is my Karma, a lesson I need to learn.

My question to Scott is : Are you following a Gluten Free Diet or just MSG - Free ? and , is SOY ok to eat ?? I understand Soy Protein has MSG but what about SOY products.

Thanks for listening and wish you all a good recovery.

THANK YOU SO MUCH for having this site I’m learning a lot from it.

Teresa.


#210

Hi My name is Cheryl, and I was lucky enough That someone from the MDDS site gave me Jens email address,so I have been in contact with her who in turn suggested this site . So here I am and here is my story so far -
Mine first started about 10 years ago, where I went on a plane trip to Brampton Island for a holiday.
As I was trying to ignore the what I thought back then was the island was moving.

Anyway when I came home, the feeling of still being in a plane was still there and getting worse. The Doctor firstly said give it a couple of weeks and see how you are. That went by and I was worse, rocking and swaying back to the doctors I went. He sent me straight to a neuroligist, where all the tests started. Over the next couple of months I tried to go back to work, but as I was using a computor, the swaying got worse, my eyes started to rollback and I was feeling nauseous to try and cope with the feeling in my head. I noticed that it seemed to be like a pendulam in my head movig back and forth, and sometimes when I leant over I couldnt get back up again, due to the weight weighing me down. The Neoroligist, couldnt figure it out and sent me to the top neurologist in Sydney to where more testing was carried out till he finally came up with the diagnosis of MDDS. I got the impression that he thought that this was some sort of mental illness that I had created. I never saw him again. As I gradually went back to work, and the symptoms seem to subside, I was able to cope a little better. Then I went on a 4 hour fishing trip on still waters, to where the next 2 weeks I had to have off work. The symptoms, sitting in a boat, sometimes cyclones sometimes smooth sailing would be there all the time since. Of late I seem to be gettin g worse which led me then to the support group. I had to have 3 days off work the other day, as I couldnt stand up straight. I suppose more embarresment than anything else… I am worried about what tomorrow will bring. I havent been seen for this since THAT specialist told me his thoughts…I have trouble sometimes remebering things and putting the littlest of tasks together eg. cooking the tea… where are those potatoes, how many will I use… what did I use yesterday mmmm thats right I think it was 4… I know this sounds silly or this happens to me syndrome, but instead of justing getting in and doing a task, I have to now think about how to go about doing this task, which in turn gives me panic cause I cant seem to co-ordinate the task at hand ? Does this make sense ? Driving in car seems to be okay and has been okay up until the other day I couldnt seem to judge the distance between the car next to me or the oncoming traffic as the road seem to be moving… The swaying is coming back more and more, and I walk with a limp sometimes to try and have some sort of level… Thats about it really. I wish that there was a cure, or a remedy that would help. I dont beleive that this is a mental illness… Where do you go from here ?
I have ringing in my ears and I have had 2 episodes of aura migraine,10 years later am still seeking an answer ? Is it MDDS or MAV or both


#211

Hi Cheryl,
I’m glad you made it to the forum; I know how computers have been affecting you of late.
There are some awesome and knowledgeable People on this forum who have helped me no end, and I’m sure our Australian folk will chip in and make you feel welcome too.
We are all in the same boat, unfortunately trying to get out…

Best Jen
xx


#212

Hi everyone –

This is my first post. I am very glad to have found this forum via a Google search a while ago – what a wealth of information.

I am 38 (almost 39) and first had symptoms of MAV a year ago around this time. At first, it was mild, and the doctor I saw thought it had something to with hay fever, which I was experiencing for the first time. It got worse, though, and soon I felt like I was on a boat all the time – sometimes a very rocky boat. I made my way through a handful of general practitioners at the clinic I go to. They all did basic neurological exams, and finally one did a slew of blood tests. The only thing abnormal was hypoglycemia, even though I’d just eaten. I got a referral to the neurologist, but in the meantime I found via Googling that reactive hypoglycemia existed (ie, your blood sugar spikes after eating and then crashes) and that hypoglycemia could trigger migraines, so I stopped eating high-carb/sugar breakfasts and started exercising more. (I’d also been overcaffeinating and wasn’t sleeping well, so I worked on improving those). Exercise was the only time aside from sleeping where I felt OK. That all seemed to work pretty well, and I got past the worst of it.

I saw the neurologist, and she diagnosed MAV (this is at Palo Alto Medical Foundation). In the past, I’d had maybe 4-5 ocular migraines – a couple in my mid-20s, then 2-3 more within the eight months before this MAV started. My father recently told me he’d had those occasionally as well until his mid-40s. I also had issues with motion sickness when I was young and still can’t read in cars. Boats are a real problem for me. I once went on a three-day houseboat trip in my mid-20s, and I felt like I was on a boat for a few days after it ended.

Anyway, I got through the worst of this MAV episode and thought I’d figured it out. I had tinnitus, however, and I would sometimes notice visual snow or a bit of vertigo when I moved my head quickly (esp. if I was leaning over, like when doing laundry). Then, in Feb., I unthinkingly went on a 2-week course of high-dose naproxen for a foot injury (which also kept me from exercising regularly), and when I went off, I got slammed with another migraine – bad rocking, even some sharp headaches, which I don’t normally get. The neurologist felt confident that a rebound from the naproxen had been the trigger there.

It has been off and on, but mostly on, since then. I drove four hours the other day to go skiing, and it slammed me again. I feel OK only when I’m exercising or sleeping, but my sleeping isn’t especially good (I have 2 small kids who like to get up early), so that isn’t helping, I’m sure.

The neurologist suggested I try amitryptyline at a low dosage to see if I can stabilize. I didn’t want to at first, but now I am getting to the point where I am willing. I have also been feeling a bit foggy mentally with this current flare-up, so I’d love to get rid of that, and I like the idea that I might sleep better. Not that into the prospect of weight gain, though.

Anyway, thanks for the forum and all this great information!
Sarah


#213

Hello,

It has now been 4 years of off and on, mostly on, of MAV. However, I am now being investigated for CFS (chronic fatigue syndrome). Anyone else have this and/or suspect they may have this? Can what was dx’d as MAV actually be CFS or vice versa? I am finding in all my years of medical investigations, there have been no satisfactory answers! Basically passed along from one specialist to the next…
I came down with the initial, undeniable, ‘smack of vertigo’ and have been unwell since. Have not been able to return to normal activity. I am elated when every now and then a pocket of ‘normalcy’ sneaks up on me! Then it is once again replaced by the unsteadiness, and all that goes with it. It has been the hugest challenge to raise kids under these circumstances, to say the least…
Any input about experience with CFS would be helpful,

momof3, now 4!


#214

Hi everybody! I have been looking around on this board for a few months now and figured it was time to join in! In Dec. of 09’ I woke up to spinning vertigo and had it for 1 week straight- I was taken to the urgent care and was told I had labynthitis and that it would go away in 7-10 days…boy were they wrong!! After weeks of not getting much better I was referred to an ENT and was told I had 52% loss of balance function in my left ear and positional vertigo that I would compensate with P.T. and a tincture of time. After about 3 weeks of P.T. I was actually getting better! I could snowboard again and just almost felt like a human. While I was doing P.T. I was taking Zrytec-D( which is phseudoephedrine and and antihistamine) which made my ears feel less full and kept my headaches at bay. I finally thought I could move on in life feeling about 99%.I felt great for 8 months straight!!! I went back to school full time and started getting migraines almost daily (normally I would get them 2-3 x monthly)and then the associated dizziness started up again :frowning: I was diagnosed with MAV in Nov. of 2010 and have tried Pamelor, verapamil, prednisone, and am now going to try cymbalta. The only thing that seems to help my headaches is Imitrex for the pain or a series of steroids to break up the chain of headaches. I also have had a documented hearing fluctuation in my opposite ear which was very frightening. I had to stop school again which was very upsetting. When I dont have any stress my headaches and associated dizziness get better but it is nearly impossible to not have any stress in the real world. Verapamil gave me horrible eye floaters in both eyes that I hope go away someday soon. At one point I was actually better from this mess and hope that I can get back to that place once again! It is nice to finally meet ya’ll and to have a place where other people understand what your going through and how tough life can be with MAV!


#215

Hi folks! I am new to this forum but not to dizziness. I have posted elsewhere as Nancy T. (my attempt to register under that name here didn’t work). Looks like a wonderful and informative place!

I’m a 54-year-old woman and have had dizziness since my late 20s; and a bunch of weird little neurological symptoms, plus a sudden unilateral hearing loss, starting 12 years ago.

I have never gotten a diagnosis of ANYTHING. Except, I suppose, “cranial neuropathy,” which one neuro put in his report to my GP but did not call it such to my face. BTW I don’t have any history of depression, anxiety, etc. (umm, at least not til the docs started dismissing me…it took me a few years to get over that).

Among all the possible diagnoses for dizziness, I’ve come to believe that mine must be due to migraine, despite the fact that every doctor I’ve asked dismisses the idea. I think they don’t take it seriously because I don’t get the bad headaches. And they just PRESUME that the dizziness is because “something happened to your ear” (when I lost my left-side hearing), end of story. Certainly something happened when I lost my hearing, but it just doesn’t sink in with them that my dizziness preceded the hearing loss by more than a decade and that whatever WAS causing my dizziness is STILL causing my dizziness.

Here’s my history–sorry, I tend to run long. Better stop now or else go get a cup of your favorite trigger-free beverage and settle in. 

Childhood: Yep, motion sickness. Before a long car trip, Mom would administer all five of us kids half a Dramamine in a spoonful of jam.

Teens: Headaches, sometimes daily. But not severe. I never told anyone, never took anything, went to school every day and lived normally. Because I thought it was normal to get headaches all the time (my mom did).

Age 22: Tried a summer job in a cannery, with corn constantly going by on conveyor belts. First day, went home nauseated at noon. Second day, loaded w/ Dramamine, threw up in a gutter after two hours. Went home, never to return to the Stayton Canning Company.

Age 26, three or four months after my first child: Woke up, got up on knees to look into crib beside bed, immediately fell backward on bed. Very dizzy (not spinning) and nauseated the whole morning and into the afternoon; held onto walls to walk from bedroom to bathroom. No ear symptoms or headache. Was fine later. My guess: big hormone-provoked MAV attack.

Age 28-30: At least two more half-day attacks of dizziness and nausea, but not nearly as bad as that first one.

Late 20s to age 42 (and ongoing): A very gradually worsening, low-level dizziness and motion sensitivity that was (is) always present, though varying a lot. I didn’t have further distinct dizziness attacks, although I remember having episodes lasting an hour or two of feeling (fearing) that my blood pressure had maybe shot up, lightheaded. The dizziness was aggravated by motion (walking my kids to school, trying to do aerobics), made me feel “carsick in the head,” though no more nausea unless badly provoked. It was (is) a woozy, foggy feeling, with frequent whooshy-whumpy sensations and sensitivity to motion. It feels like it’s in the “front” of my head somehow, perhaps because it affects my attention/concentration so much, my eyes’ and brain’s ability to fasten onto the world in front of me. Worst problem was difficulty concentrating through the “dizzyfog.” I’d get “nose headaches,” which for no good reason I attributed to “sinus” but now know to have been migraine. I’d take OTC sinus meds, which helped–no doubt because of the acetaminophen and even more, the pseudoephedrine! This was the beginning of a pattern of being helped greatly by stimulant-type meds.

June 1999 (age 42): Two weeks or so of intermittent lightning-bolt, excruciatingly painful but blessedly split-second electric shocks under my ears, mostly left ear. Didn’t go to doctor because they stopped.

1999, Friday, July 2, about 10:30 or 11:00 pm: Getting into bed, I had two humongous, back-to-back sneezes (not trying to hold them in). Immediately I noticed I couldn’t hear the TV so well (news was on) and my left ear was whirring. I turned my head a bit and whoa!! Dizzy!! That’s weird, I thought, but I’ll be fine in the morning. Woke up the same, deaf on the left and dizzier than ever (now including positional dizziness). After having two GPs dismiss me with “wax” and “Eustachian tube dysfunction” (though they never performed any hearing test whatsoever), I was sent a month later to an ENT, who found a severe-to-profound sensorineural hearing loss in my left ear in frequencies above 750 Hz. (All that time, I’d assumed it was just somehow “plugged”–I knew nada about ears.) Nothing helped: high-dose prednisone, then a few months later middle-ear surgical exploration with patching of oval & round windows (to rule out perilymph fistula). Later an otoneurologist theorized I’d had an inner-ear stroke (blood-clot blockage) when I sneezed, which still seems to me the best theory. My hearing never improved (nor worsened), but three years ago I got a Baha (bone-anchored hearing aid) and it’s a GREAT help. Right ear has normal hearing.

Sept. 1999: The post-sneeze dizziness had settled down to my “normal” level after about 3-4 weeks, but now I got dizzier and feeling a little off-balance as well. Had my first-ever ocular migraine, which panicked me–thought I was having a stroke. That’s when I learned I was a migraineur–until then, I thought I’d missed the bullet that had hit my mom, sister, two brothers, and both my kids. Had two more ocular migraines in subsequent months; none since. At that time, perimenopause had started full tilt, so I suppose that’s what set off the ocular migraines.

Fall 1999 and the next couple of years: A lot of weird little neurological symptoms developed, each of which would arrive suddenly and stay for hours, days, or weeks, then go away, then (often) return weeks or months or even years later in the same spot or a different spot:

Electric though often painless shocks on both sides of my face (around eye, cheekbone, side of nose–trigeminal nerve).

Episodes of fast but erratic clicking in my left ear accompanied by painful pressure in the bone behind the ear.

Moving my eyes or hearing a sudden sound (or change in sound), especially when sleepy, causes a momentary burst of noise in my hearing-loss ear (which has constant tinnitus anyway, but the “burst” was extra-loud and staticky). And I get “whumps” in my head, up to four in fast succession. This began about 1.5 months after my sudden hearing loss.

“Invisible insects” attacking small spots on my face, scalp, legs, and hands: tap-dancing centipedes, stinging bees, crawling ants, electrified spiders jumping on my cheekbone, etc. They “feast” on and off for days or weeks, disappear, come back weeks or months later.

Ghostly cold or warm sensations on certain spots on my face and legs.

Coordination: missing (coming up short) when reaching for kitchen-drawer handles, backs of chairs, dishwasher rack, etc. and hitting the side of my mouth instead of my tongue when trying to lick a finger when turning pages, water glass hitting under my lower lip, etc. Foot would not land exactly where I intended; mouth would feel “fat” and hard to talk after exercising.

“Connections” between distant body points, for example pushing on the top of my left big toe causes a strong electric shock in my left elbow and hand; touching something hot caused a wave of strong tingling on my left scalp; simultaneous unprovoked “double shocks” in a foot and the groin or ribcage on the same side. Lots of stuff like that.

Lhermitte’s (electric, “pulling,” or vibrating sensations in certain spots in my lower body when bending my head down).

A bizarre four-day period of BPPV: whenever I’d tip my head leftward, the ceiling would start jerking up and down while simultaneously I’d hear and feel a fast thumping in my RIGHT ear, which exactly matched the ceiling-jerking in duration and intensity. I finally cured myself at home with the Epley. I can’t but think this was a crossed wire in the brainstem. (A recent crosswise ear oddity is that when I squeeze something hard with my left hand/arm, such as trying to open a stubborn lid, my right ear thumps!)

Over the last 6-8 years, I’ve had fewer of these oddities, but every now and then something new starts or something old returns, and the Lhermitte’s is there more often than not. Also, I used to be able to walk 2 miles very fast around my neighborhood; now I can only walk two blocks continuously before having to stop and rest my upper leg/thigh muscles, then I can continue very slowly. It is very worrisome to not be able to walk like I used to.

In addition, I’ve had flu-like achiness in my arms and legs for about 20 years. I suppose it’s a bit of fibromyalgia, though I don’t have all the other things that go with fibro. Also, arthritis and scoliosis (the orthopedic spine specialist says my scoliosis is NOT the cause of my symptoms, and nothing is seen on my neck MRI to account for the Lhermitte’s).

But: I have NO diagnosis. In the past 12 years I’ve had 5 brain MRIs, 2 cervical MRIs, 2 negative ENGs, all negative blood tests (ANA 4x, plus thyroid, CK, B-12, Lyme, myasthenia gravis, a few others maybe). All vestibular diagnoses seem ruled out–I don’t have AN, MM, SEH, VN, PLF, presumably not SCD. I’ve seen an ENT, a neurotologist, a rheumatologist, and four neurologists; and although the second one (a big dizziness specialist here in Portland) essentially told me I had MS at my first visit, he later retracted it (and pinned the “medical student’s disease” diagnosis on me, even though HE was the one who started the MS idea!).

I remain with only nonspecifically spotty MRIs and an essentially normal neuro exam (as far as I know), so apparently I don’t have MS. (They tried a spinal tap twice but could not get any fluid out–last month I had it done under x-ray–fluoroscopy–and she stuck me five times but my spinal fluid just would not come out!) I do have a “multitude” of small brain lesions now, as opposed to three or four ten years ago, but not in spots suspicious for MS. And I do have a “highly abnormal” ABR (auditory brainstem response) on both sides (performed in 2000) and abnormal acoustic reflex decay, but no one seemed concerned about this.

I asked the otoneurologist and a couple other doctors whether migraine could be causing my dizziness, but they fluffed off the idea. The otoneurologist said they use migraine meds to treat the headache but not the dizziness. I would guess lots of folks here would not agree!?

Anyway, I haven’t seen an ear/dizziness specialist since 2006-8, when I returned to the neurotologist and he prescribed allergy shots. They may have helped some, but I’ve had no lasting improvement. I saw a vestibular rehab therapist in 2000 but she didn’t seem to think she could help me much; I think the eye exercises helped me become less sensitive to visual motion (cars passing by), but it didn’t help the dizziness.

So I’ve decided I have to self-diagnose myself with MAV. I think I have good reasons to do so. I’m a known migraineur (proof in the ocular migraines). I don’t have big, distinct attacks, but I often (maybe 2-4 times a month) have episodes when the constant woozy feeling gets worse, I have more trouble concentrating, feel lightheaded, and have a kind of odd pressure in my face, sometimes with a hint of headache. I am always tempted to leave work (it happens more often when I’m moving around a lot) but I know if I just stick it out, it will diminish in an hour or two.

My medication story thus far:

Meclizine, Xanax, Ativan, diuretics, atenolol–all tried w/o success. They had no effect or just made me worse. Same with Dilantin and amitriptyline, which were prescribed for reasons other than dizziness (shocks, possible fibro).

Provigil, Ritalin–BIG HELPS but eventually did not work so well. I was taking these for (as the oto-neuro put it) “attention and concentration deficits related to chronic dizziness.” So in 2004 I asked my GP to switch to Strattera, a norepinephrine reuptake inhibitor, and it was a watershed for me–even though it didn’t help the dizziness, it allowed me to think and concentrate THROUGH the dizzy-fog, with no side effects. I’ve been taking it now for 7 years!!

But–I’ve long thought about seeing what would happen if I went off it. Do I want to be taking it all my life? Plus it’s ridiculously expensive (now $400 a month–price about doubled since 2004), although my insurance pays.

Spurred by two things (the unsuccessful spinal tap last month, after which the neuro is completely out of ideas; and a particularly bad week in which I had four of the extra-woozy-lightheaded-foggy episodes–I think triggered by eating too many chocolate brownies before bed, which set off sleep disruption), I decided to explore MAV myself more thoroughly.

So I start reading a bit here, Dr. Hain’s stuff, and whoa… Effexor? Hmm… maybe I should try it, as it still has the norepinephrine reuptake deal and might not be too harsh a change from Strattera, and might work on the dizziness too??

So, I’m going to ask about a million questions here, and then probably go to my GP and ask to try Effexor. I certainly can’t wait on the docs to figure out what’s wrong or to take seriously the possibility that my dizziness is due to migraine.

If you read this far, you are probably dizzy as all-get-out now. Sorry and thanks! :slight_smile:

Now I’m going to start posting my million questions. :slight_smile:


#216

Hi there! Not really sure where to start, but here goes. I am 34 yrs old. Have a long standing hx of migraine with “crazy” visual aura, sometimes with or without a headache. I can actually deal with the headache more so than the awful visual aura. Through the years my migraines have come and gone, never avging more than 2-3 h/a’s per month. Sometimes periods where I get none. Thought I had pretty good control over them! Have had mild complaints of dizziness in past but nothing incapacitating. Have absolutley no idea what triggers them as I can get them anywhere, anytime of day… (Never had migraines while I nursed my children…2yrs migraine free!) Oh, never had motion sickness…spent a week in disney (dec 2010), flew in airplane, got on every crazy ride there. (didnt even get a headache!)
In April, I had a “cluster” of attacks, 5 total over 3 1/2 weeks. One of the attacks was prob the worst I have ever had with horrible aura and horrible headache, in bed for hours, sick. This is when the dizziness started. First, it came and went, and I continued to work. Over the next couple weeks, progressively got worse, and I started to notice other things, like the inability to drive, and even go to the grocery store. (I love shopping!) Things started to “overwhelm” my brain. A visit to primary care left me with nasonex…I even asked for a daily migraine med, given my history. (I had already googled migraine and vertigo, and found info saying they go hand in hand).
This is a slow process, having to wait several wks to get to neurologist. I was so fed up I made an apt with ENT, who believed I have Vestibular migraine and ordered VNG and propanolol. I was thrilled to finally have an answer (although I had already self diagnosed myself). Decided to keep apt with neurology as well. He switched me to Nadolol as it has even less side effects than the propanolol.
Amazing how long the story becomes! I have been out of work for 4 weeks now, unsure when I will return (I am a Nurse and was accepted into a MSN program this fall for Nurse Practitioner…now worried that I won’t be able to tolerate this). I am really worried that I am never going to be “straight” again. I am stuck at home, with my 4 yr old, and I can’t even drive! I have definitely seen small improvements, but it seems like you take 1 step forward to only take another step back. I sooooo want to stay strong and keep positive, but this is tough! Even with migraines, I have never been sick and had perfect attendance at work for several years. We have our annual family vacation coming up in June (8 hr drive) and I am not even sure if I can go. I want my carefree life back where you can just do the things that you have always done without thinking about it!
I go back to ENT today to find out the results of my mostly normal VNG test. Scheduled for PT next friday. Will keep my head strong and stay POSITIVE. I am going to conquer this, and post my success story (hopefully)
Thanks for allowing me to VENT as I have soooo needed this!


#217

Just posting here as didnt realise this was where my original post should have gone.

Hi Everyone,

My name is Lou, I live in Twickenham near London, I’m 28 and I was redirected to this forum from the Dizzytimes forum by a kind user… Wow! I never expected to see such a wealth of information here. I have to admit, at being quite overwhelmed by it. I’m suffering the worst few days I’ve ever had during the 7 weeks I’ve been experiencing vertigo, and as much as I knew it in my mind, I didn’t really want to face up to the reality that this probably isn’t going to be a quick fix solution and I am going to have to spend time trying different drugs, and seeing what might work. Up until a few days ago, I was convinced that when I saw the ENT he was going to tell me my sinuses were blocked and that he’d unblock them for me and I could skip off happily into the sunset.

I have a few questions and queries and wondered if anyone could spare some advice. My story goes like this:

April 15th 2011, just over 7 weeks ago now, I was at work having lunch and felt suddenly dizzy. Spent the rest of the day working at my desk, but when got up to go home, felt dizzier. Forced myself to go round the supermarket- felt an intense feeling of being pushed/pulled. I felt feverish, tingly and dizzy and went home to bed. I had a pretty stressful Februray as my boyfriend was ill with his epilepsy, and in March I felt tired all the time and on the edge of getting a virus so I presumed it would pass.

The dizziness subsided but was/is always there. My symptoms were and still are:

  • Dizzy- Feeling of being spaced out, looking around the room feels like my eyes are slow, off balance.
  • Eyes- At my worst it feels my eyes wont focus properly, like now. They also feel like the prescription is too strong. When I look in the mirror, I have to look at my face in sections- I can’t focus on the whole.
  • Ears- feel like I’ve been under water for ages. When I swallow/yawn, I get a crackle/click/pop but nothing clears.
  • Tinnitus- Started off high pitched but I could stand it. Increasingly loud in the left ear to point where I can’t be in a room without a fan on. If I’m in a quiet room, its high pitched in the left ear and then starts to take over my brain. I swear it’s like a form of torture.
  • Sinus/nose- Sinuses feel blocked. Pressure and pain behind eyes, in cheeks and nose. Nose tingles as though I’ve had anesthetic.
  • Headache- Headache wasn’t there for the first 3 weeks… now it’s ther eevery day.
  • Sickness- I had bad sickness for the first month and lost 3/4s of a stone. It started to ease but has come back in last week.
  • Tiredness
  • Anxious/depressed/irrational thoughts.

My GP said it was labrynthitis/vestibular neuritis & would go away in a few weeks. Prescribed anthihistimine- Cinnerazine. I tried prochloerapizine- it gave me tremors and insomnia. (Later found out you shouldnt take it if you have allergy to perphenazine- used for anxiety.)

3 weeks in I referred myself privately to an ENT. He said it sounded like a vestibular event, confirmed no hearing loss and said come back in a week if no change.

At 4 weeks in, no change, if anything although the first few days had subsided, it was getting worse again. He wanted a neurological opinion and sent me to a neurologist. He also told me to start taking the Propranalol the GP had given to me which I hadn’t yet started- 1 x 40mg a day, to lower my bp a bit, prevent flushing I was getting and prevent migraines.

I saw the neuro who took my history-
Headaches for 10 years (never investigated properly, always fobbed off)
Sinus pain for similar amount of years
Migraines with aura for 2 years- the first of which cooincided with me one day waking up feeling as though my contact lenses were too strong- Nobody ever got to the bottom of this, I had numeous eye tests and was made to feel mad so I accepted it. Its still with me now. Migraines vary from 0 a month to 6 a month. Zomig works.

Neuro promptly diagnosed CHRONIC MIGRAINE. I found it hard to accept this dx due to the inner ear related symptoms- ear fullness, tinnitus etc. I could see how vertigo and blurry vision would come in. He ordered and MRI and told me to double the beta blocker dose.

The MRI came back clear. The ENT said my sinuses are clear as are my ears (did an ear pressure test). So now I wait to see the neuro in another 2 weeks. In the mean time, I tried accupuncture yesterday and start physio he suggested tomorrow.

However, I have felt so much worse in the last week- I woke up and felt more dizzy, more spaced out and how I did in the beginning of this and during my worst week which was about 3.5wks in. In the last 3 days, I have never known anything like it in my life. Its surpassed any other day I’ve had. I can’t leave the house. I feel like I;m going insane.

  • Can anyone tell me if it’s possible I still have an inner ear thing, and that migraine is also a problem? So I have BOTH?
  • Can anyone tell me of any suggestions as to why I am getting worse?
  • Can anyone tell me if it might be the beta blocker making me feel worse? I know its working because my bp is down a lot from 135/95 to 120/80 and my pulse is low at 58.
  • Can anyone tell me if its worth trying to bring the neuro appt forward of if I should stick it out and see if I feel better in next few weks? I figure he wants me to have tried this beta blocker for a number of weeks first.
  • What is the likely drug he’ll try next and will it be in addition to the propranolol? I read here about many different drugs- how do they choose which one to use?
  • I’ve experienved these symptoms every day for 7 weeks- how do I break this circle??? Do most people suffer ‘attacks’ rather than constant symptoms???
  • Is it normal to have better days and then terrible ones? Will I come out of this terrible lull?
  • My neuro didnt mention it, but I’ve read about migraine diet and lifestyle. Today I decided to be aware of this and try it… wow— what the hell do you eat?! I had cereal for breakfast, some strawberries and a yoghurt. Then I read I shouldnt eat yoghurt or cereal! What CAN i eat!!!

I’m feeling so down and depressed with this. None of my family or friends seem to get it- especially when I suffer the really bad days- like right now. I feel trapped in my body. I’m not the person I was before all this. I’m scared I’m going to be like this forever and it’s really hard to see any other way. I am frightened and I am scared and I am having irrational thoughts.

I’ve not worked for 7 weeks because of this- I am so out of it, it’s impossible.

If anyone has any advice, I’d be so grateful.

Thank you,

Lou xx
missmoss83


#218

Missmoss,

I recomend you get the book, Heal your head by David bucholtz. There is a multitude of information in there that explains all of it and what to do and what to eat. It is a lifesaver. I just got it myself and I wish I would have gotten it last year when this all started with me. You can find it online if you can’t find it at your local book shop.

All I can say is Get the book today or order it today. It’s unbelivably good. It explains what migraine is and it’s many symptoms. Obviously a huge headache is the most common migraine symptom, but there are many more and the book touches on all of it.

Greg


#219

— Begin quote from “beatles909”

Missmoss,

I recomend you get the book, Heal your head by David bucholtz. There is a multitude of information in there that explains all of it and what to do and what to eat. It is a lifesaver. I just got it myself and I wish I would have gotten it last year when this all started with me. You can find it online if you can’t find it at your local book shop.

All I can say is Get the book today or order it today. It’s unbelivably good. It explains what migraine is and it’s many symptoms. Obviously a huge headache is the most common migraine symptom, but there are many more and the book touches on all of it.

Greg

— End quote

Hi Greg,

Thanks for your suggestion. So many people responded to me suggesting the book so I had it delivered yesterday… It’s amazing isn’t it! It made me cry with relief that things made sense finally. Similar experience when I read the mav survival guide on this site!

Thanks again x


#220

missmoss,

Yes, I agree. I’ve been looking through that book nonstop since I got it. Every High School student should have to do book reports on it to prepare them for what they may encounter later on in life in my opinion. Or just to help avoid migraine completely so they never get it bad one day.

Greg