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#221

I started having dizzy spells at a young age 5 or 6 . I would get dizzy pass out for minutes and loose time. I didn’t know happen to me. Doctors didn’t know what was wrong with me. Some thought it was an act of getting attention, and some thought it was a serious condition, me all I knew was I didn’t feel well and waking up somewhere I didn’t know was scary.
As I got older the symptoms changes, I would get painful head aches and feel sick to my stomach. Doctors did some test and told my foster parents that I had migraines and was very sick also with cytisis, I think I spelled it right. Something wrong with my intestines. So I had to go through many things and felt uncomfortable.
As I got older, my body changed again, I got head aches, with nausea. This was at the age of 16, which was a releaf from having dizzy spells for so long. Those head aches went on for awhile until the age of 36 and then none for 4 years. Suddenly they are back to full force and having dizzy spells again. I am diagnosed with Migraines and Vertigo (MAV) in March of this year. I was glad there was a name for what I had, but I get them two to three times a week. I take what the doctor prescribed me; but nothing seem to work.
Well that is my story from a young to now. I hope there are better meds and help out there for all of us, dealing with the pain and dizziness.
Thank for reading my story.
I


#222

My dizziness started when i was 4 years old. i am currently 16, so this has been going on for a while. Ive been to a numerous amount of doctors, but it took me a LONG time to be properly diagnosed. In the beginning, i was diagnosed with having seizures. Ive been through a good amount of tests, such as MRIs, catscans, etc. I usually have dizziness, jumpy vision, i sometimes experience headaches, but they are bearable.
At the age of 12, i was diagnosed with migranes and vertigo (MAV). they put me on depakote (a medication used for seizures and migranes) and they winged me of it this year. i was completely rid of depakote in february, 2011.
in May, i started noticing my dizziness was coming back little by little. It its now to the point where i am dizzy every single day and i cant even leave the house. Because of this, i am suffering from depression and anxiety. The doctors recently put me on celexa to treat this, however i have not seen an improvement yet. I have noticed my dizziness to become worse if i dont eat for a long period of time, so i eat throughout the day. I stay away from caffiene, but i do eat chocolate and it doesnt seem to affect me.

I have faith and pray that one day my dizziness will subside and i will be able to live my life to the fullest soon enough. (:

–Maddy–


#223

My dizziness started 1 year ago, I am 31 years old and it changed my life and the life of my husband and 3 young children. Out of the blue I became so dizzy that I couldn’t function, my work put me on leave in May and since then I haven’t worked.
All the doctors told me it was cervical vertigo I had injections, physical therapy, MRI’s, CT’s everything came back normal and nothing was working, I had trials of medications Flexeril, Doexipen, Gapaentin, Nortriptline, Clonazepam, Atavin, and 12 other medications nothing worked.
The dizziness continued my balance was so bad that I was no longer able to drive,going into the stores would bother me and make the dizziness worse, at times I would be laying in bed for days and then there was this type of pressure in my head that was so extreem some days worse than others it felt as if someone had there hand on my head and was squeezing it, now it’s always there 24hrs a day never goes away somedays it’s worse then others but it never goes away.
I’ve been to ER 3 times they fill you up with Lorazepam and fluids did some CT’s and MRI’s sent me home because they came out normal, had a Lumbar Puncture which was also normal, been through all the hearing tests in the world all came out normal, saw ENT doctors said it has nothing to do with my ears, they all kind of look at you like your crazy because you look normal and everytime I explain and cry about my situation they think I’m more crazy then I saw a doctor that said i think you may have migraine associated vertigo do you have family history of migraines well yes I do my mom, grandma, my mom’s brother, my cousion and etc… started researching the internet and found this website I have started Topamax 5 weeks ago I’m up to 125mg have no side effects and no problems with it at all and Magniseum 500mg a day I’m still unable to drive, not working, don’t know what it’s going to be like for me day to day, feel like I’m walking on egg shells everyday, having more bad days then good days and still unsure if this is really what I even have but after reading your stories it sounds more like me just hope I can be under control and live normal again for my kids and family, I’m too young to not function everyday it takes your life away there’s still so little I know about it as well so I’m hoping through you guys I will learn more.

Thanks everyone for this site!! :smiley:


#224

Hi eveeyone, I really need some help and am struggling with my symptoms daily
Iv suffered migraines for as long as can remember I’m 29 now, I used to get a day or 2 of vertigo years ago which wld be triggered with travel, swings, turning fast, drying my hair upside down ect
Then 2 yrs ago I had my son and about 12 weeks later started suddenly with vertigo and basically its never left me :frowning:
Just before I found I was pregnant I was suffering bad migraines with pins n neddles and other symptoms but no vertigo and had a mri and ct scan and alzo ct scan with dye and all was clear, but the vertigo didn’t start til about 12 months fter those scans
They wont rescan me after iv asked, I have seen my ENT who did some tests like the flushing water in my ears and balance tests and all they cld say was its not ear related I had a hearing test also and was ok, 2 years solid iv struggled with this and noone seems to want to help,
My latest ent I was told I have migrainous vertigo but I suffer migraines maybe 1 a months and regular headaches weekly
They are brought on by smell, sound, lights but worse is smell of perfumes, furniture polish ect and I have a allergy to dust
I guess my question mainly is with can the vertigo be present all the time?
Shouls they repeat a scan to check for more sinister things?
I have just had alot of bloods full blood count, blood picture and all normal so is that reassuring?
I do suffer with anxiety issues which is making me worse thinking I have a brain tumour
I’m a single mum with 2 kids and just feel so down
Cinnarizine and serc have not helped me at all
Thank you for reading
Steph
Oh I also have ibs, suffer with weak hands, restless legs syndrome which us what my hands feel like after waking, are these common symptoms
I cNt find a doctor who will help me and discuss everything in detail


#225

Hello, I just found this forum - gosh you lot will probably know what I’m talking about, maybe I can find a better word than ‘this dizzy-nausea thing’, which is what I keep calling this thing. My neurologist has concluded that the dizzy-nausea thing is probably migraine related - so I have Migraine Associated Vertigo - it sounds better than ‘this dizzy-nausea thing’. Although, as I have discovered over the past 8 years of experiencing this (it has been getting worse during that time) - even doctors do not know what to call it, and even dizzy or vertigo are poor descriptive terms - people seem to mean so many things by dizzy and vertigo. For me the room does not spin or go round and round - although, it does go up and down - even when I’m sitting still - I feel like I’m on a ship on rough seas. What is more difficult (especially when it is happening, and especially if other people are around who do not know me) - is the way I go when I’m in full ‘hit’ mode - if I haven’t stopped to rest in time, then any movement becomes, not exactly frightening, but almost, I seem to be unable to move, not even to stand up, if I do I feel like I’m falling down some huge chasm. And my speech deteriorates - I can’t say more than single disjointed words - like ‘no … walk,… wheelchair,… sorry’ - I was visiting a neighbour in hospital - I should have stopped her talking and said ‘goodbye’, but I was too polite, and deteriorated - the staff thought I’d had a stroke - I had to reassure them, and get them to take me outside in a wheelchair into fresh air where I could sit quietly until I had recovered - it is frustrating.

Unfortunately, I’ve run out of medication to try - some I became allergic to, others sedate me too much, or just do nothing to help at all. The neurologist suggested I try some “alternative” or ‘complementary’ treatments - but I’m UK based (in a rural area) and on limited income - so I will need to choose carefully which alternative treatments will be worth the money, which I can afford and which are within travelling distance. Alongside the MAV, I also have Fibromyalgia, the MAV started about 2 years after the Fibromyalgia. It was first thought to be ‘labyrinthitis’, but it kept coming back, sometimes so bad I can’t leave the house and find walking difficult.

Anyway, nice to meet you all. This seems like a large forum with a lot of information on it, I shall need to take my time to read the experiences, knowledge and information contained here - I think it will be enlightening.


#226

My symptoms have just started. I am very sorry for those of you who had to suffer for years before receiving an accurate diagnosis. I admire your perseverance.

I am 48 years old. I live in Philadelphia. From what I’ve read so far, I do have several health conditions that correlate with MAV: (1) asthma (since childhood, but now well controlled); (2) bipolar disorder; and (3) a very brief experience of BPPV in 2003, which resolved after I did the prescribed exercises.

So here’s what’s up with me. On July 18th, I was in a convenience store. All of a sudden, a whole stack of bananas was moving. I realized after a moment that it was vertigo. The episode only lasted about 5 seconds. After that, I was fine. Apparently. When I woke up the next morning, I got out of bed and fell over. I had vertigo. But it wasn’t like the BPPV back in 2003. Instead, it was more “generalized.” It was present without moving my head, unlike my prior experience with vertigo. I was also developing clouded thoughts, along with nausea. When I tried to do the BPPV exercises for loosening crystals in the inner ear, I became extremely nauseous and had to dash for the bathroom. I vomited.

A friend of mine urged me to call the doctor. I saw two doctors at PennMedicine in Philadelphia (associated with the University of Pennsylvania). They told me that I might have had a stroke and sent me for an MRI that afternoon. The next morning, one of the doctors left a voicemail telling me that my MRI was normal and that I should call for an appointment if my condition worsened.

Everything seemed to improve after a day or two and I was back to normal. Until last Thursday. Again, I was in a store (a CVS pharmacy). I was standing at a self checkout kiosk. All of a sudden, I was hit with a big wave of vertigo. It was much worse than before and it did not go away this time. I struggled to finish checking out. Then I started walking home. I was staggering like someone very drunk. It was truly an effort to get home. When I finally walked in the door, I was sweating much more than usual. The vertigo continued. However, a horrible brain fog took hold. I ended up sitting in my armchair, staring straight ahead in a kind of daze. I could hardly do anything. I was rational, and yet it was hard to think. I was also quite nauseous. I laid down for awhile. Finally, after about 4 hours of this, I projectile vomited (in the bathroom, fortunately). I felt better after vomiting. About half an hour later, the brain fog began to clear and the vertigo let up. That was a huge relief. I went to sleep.

The next morning, Friday, I felt very spacey. I decided to go to work. I put a quarter in the fare box for the trolley instead of a token. The driver was annoyed with me. It took effort and more time than it should have to decide what to do next. Finally, I put in a token. Meanwhile, my stomach was in a knot. I sat down and continued on to work. I made an appointment with my doctor’s office and left work early.

I saw two different doctors. One of the two, who is an assistant professor at the medical school, told me that she thinks it could be migraine. I was increduluous, because, until Friday, I was one of the vast majority who equate migraine with headache. She explained that people can have migraines with vertigo as the primary symptom, or even stomach migraines. She said that it is the brain fog that leads her to conclude this is migraine. However, she is not sure. She says that Meniere’s is doubtful because I do not have any hearing loss issues. She prescribed Imitrex. She referred me to an ear, nose and throat specialist. I have an appointment on September 7th.

Over the last several days, I have felt the continued aftereffects of this attack. Today, I have had very mild vertigo – something like a floating sensation – along with pressure behind my left eye. I am getting mild and transient headaches. (I almost never get headaches.) Overall, I feel odd.

I feel fortunate that this condition might be diagnosed so quickly. What do you guys think?


#227

I have just noticed our new members Friendlyfish and Tim - welcome! There is lots of great information here which I am sure you will find helpful.

Friendlyfish - if finances are a concern I suggest you try the diet and lifestyle modifications first as they won’t cost you a cent and may really work for you.

Vic :slight_smile:


#228

Hi All
I’m 57 and am new to this forum but not new to migraines or dizziness. I’ll start at the beginning so you’ll have some idea of where I’m coming from.

As a young child, I experienced extreme bouts of car-sickness - I couldn’t travel 5 miles without getting sick. Of course, I thought it was normal 'cause my brother & sister were the same. My dad hung a chain from the rear of the car and we all quit getting sick… not a placebo, as we kids didn’t know my dad was trying an experiment on us. :roll:

During my childhood, I also experienced panic attacks, although I refused to tell anyone about them. The attacks would feel like I couldn’t take another breathe because my throat had closed off and I couldn’t swallow… not a pleasant feeling, especially with your heart pounding a mile a minute in your chest. I survived.

As a teenager, I would get severe headaches - the kind where sound and light were intolerable and even your hair hurt. Frequently I would vomit along with the other symptoms. I tried lots of different pain meds - most doing nothing as I tended to throw them up. Sometimes I would get an aura prior to the onset of the headache. It would be little pinpricks of light flashing wherever I looked. I would know that within a few hours I could expect a headache from Hell. Under the right conditions, I could forestall the on-set of the headache pain by using a relaxation technique that I’d read about. If I could sit quietly in a cool dark quiet place, I could tell myself that I was not going to experience a headache. Finding a cool dark quiet place is not always possible, unfortunately.

I know what a lot of my triggers are and generally it’s never just “1” thing… red wine is the “one thing” exception, and probably my only food trigger. For me, hormones (I’d always referred to them as horror-moans), barometric pressure changes, stress, lack of sleep, and flying (which probably accounts for all the others combined) were almost guarantees for a migraine. But I am also sound sensitive, and flickering lights, especially florescent store lights, would send me running from the store. Some smells (I told my mother she had to quit with Chanel no.5) would give me an instant headache - cleaning products, in particular Lysol, or heavy mold smells did the same.

I’ve thrown up on every continent, execpt Antarctica and Africa, but only because I’ve never visited there… :oops:

Fast-forward to my 50’s Hooray! Almost no headaches anymore! Still the odd one when travelling, but I’ve more or less resigned myself to that and have become a “quiet woofer”, through lots of experience. Last year, May, 2010, we returned home (Canada) from 2 months in Panama and I was back at work when the weird symptoms started. I’m a marine biologist, specializing in shellfish aquaculture, so I work on the water frequently and commute to work daily in my boat. I was working on a floating dock and I felt dizzy, like I was going to pass out, so I left the dock for a safer on-shore location. The feeling went away, only to return the following day. I’m generally a healthy person who does a lot of physical labour and exercise, so fainting is not a usual activity for me. Two days later, I went to get out of bed, and I couldn’t stand up. I was violently ill, throwing up with the whole world spinning uncontrollably around me. I thought I was dying - I had no idea what was happening. I live in a very remote location and the options for going to a hospital are nasty to contemplate - think a 1 hour boat ride over rough water before getting to the ambulance and then another 45 min to the hospital! I knew I wasn’t having a heart attack, or a stroke, and if it was a brain aneurysm, I wouldn’t likely make it anyway, so I opted to stay in bed.

I finally screwed up the courage to get to my GP and he said “BPPV”, probably because 95% of cases are BPPV. He gave me the eply?? exercises to do, which didn’t work so I asked to see a specialist. I got a referral to an ENT who confirmed that I had hearing loss at the high frequency in my left ear along with tinnitus with the results from the audiologist.

The episodes of vertigo would come on suddenly but often initiated by light or sound. I had one episode that happened while I was travelling to work in my boat. The reflections of sunlight on the waves was like an overload to my senses and the vertigo hit hard. I braced myself while hanging on to the wheel and continued to the dock… wasn’t my best landing :roll:
I had another while driving the truck because of sunlight flickering through the leaves on the trees and creating a strobe-like reflection on the windshield. The attacks would last between a few hours and several days, finally tapering off.

My ENT had initially suggested migraine but asked for more tests to rule out other causes. I had 10 months of relatively symptom-free life, although I didn’t feel 100%. I had a stressful year as my mother died in the fall and I spent a month on the other side of Canada dealing with her estate. When I returned home, we decided to return to our house in Panama, so we spent 3 months there before returning home to BC. In April 2011, I completed the MRI, Electronstymagrophy, both of which were normal.

A month after returning home and getting back to work, I suffered another attack of vertigo. I was suffering from a sinus infection and being treated with antibiotics. This time the vertigo was different, although the initial attack had the world revolving around me, and me getting violently ill because of it, it soon morphed into dizziness where instead to the world revolving, the world was shifting and the horizons were bouncing. I could not focus, read, watch tv, carry on a coherent conversation, or look at a computer screen. I felt like I had a “bobble-head”. The dizziness was no longer episodes but 24/7 and the only relief was to sit or lay perfectly still with no noise or activity around me. The first week all I could do was crawl from the bed to the bathroom. I took gravol to control the vomiting. I am now plagued with anxiety attacks and depression.

My trip to see the GP was another “dry heave” adventure and then it was back to the ENT who confirmed that I am normal except for my inexplicable dizziness… He said that he has no idea what is causing this as he’s never seen anyone dizzy 24/7 for months. He said it cannot be an ear problem as nothing “ear-related” acts that way. He has referred me to the dizzy clinic in Vancouver, but there is a long wait-time to get in. While the ENT doc had initially suggested migraine as the culprit, I don’t think he realizes there is a (rare) chronic form of migraine. I only recently found this forum and believe that I have found my diagnosis.

I returned to my GP and gave him a copy of the MAV survivor guide (thank-you Scott) so he has prescribed me Nortriptyline (to help me sleep) and Lorazepam for those pesky panic attacks. :oops:

Sorry for being so long winded, but I don’t get out much anymore :?

I read somewhere here that someone suggested that low hormone levels might be a trigger. As I’m post menopausal, do you think it’s something I should check into? Thanks, everyone for sharing your stories - I don’t feel so alone now.
Cat


#229

Hi everyone, my name is Barb, 72 yrs old and was recently diagnosed by my neurologist with ‘vertiginous migraine’ after 8 months of vertigo, nausea, migraines, etc. I would like to give my heartfelt thanks to Adam, Scott & all the participants in this forum – the information has been invaluable in understanding my condition & helping me to ‘self diagnose’ after months of visits to GPs and ENT specialists. A range of ear/MRI/balance tests showed that there was northing wrong with my hearing, etc. and the doctors I saw had no idea what was causing all my symptoms. Unfortunately, this seems to be the case with nearly everyone on the forum who often spend months, even years, trying to get help!

Like many of you, I have had migraines since early teens (undiagnosed stomach pains with nausea in childhood), bad travel sickness & many episodes of fainting in teens & twenties but no vertigo. In fact, I had never been aware that vertigo could be a part of migraine syndrome.
My mother, sister, brother and two of my children & grandchildren all seem to have inherited the migraine gene. I hope that with the discovery of the TRESK gene (Dr Zameel Cader, Oxford Uni) migraines may one day be able to be prevented.

By mid thirties, the travel sickness was a distant memory but frequent severe migraines continued throughout my life (hormonal related) until late fifties when they abated somewhat. I tried all the migraine remedies and used to give myself injections of Imigran (before the days of the Epi-pen!) which stopped the vomiting & induced sleep. In between episodes I felt fine and was healthy & active so I feel fortunate to have come this far in my life without the MAV ‘knockout’!

By the mid sixties migraines were few & far between until… last year when I happened to mention to a friend that I felt I could do with some ‘upgrade’ on my balance. My husband and I had spent several months touring overseas, fell walking, cycling, etc. so I was reasonably fit and the balance was only a minor concern to me.

A neuro-physiotherapist was recommended who gave me a check over and suggested some VRT eye movements to do 5x daily. I did one day of these exercises moving my head from side to side while focussing on a X on the wall and then the vertigo, nausea, foggy head, exhaustion, fullness in ears, total loss of balance in dark, motion sickness, being anywhere with bright lights (shops), confusion, anxiety, panic attacks, etc. hit like a brick wall! My life just ground to a halt! I couldn’t do my volunteer work, go for walks, shop, watch TV, read, use the pc or concentrate on anything. We had bars installed in the shower & hired a frame to hang onto as trying to stand upright was difficult to say the least. I had no migraine at this stage.

In Nov 2010 just after the dizziness, etc. hit, I began to make diary notes of my symptoms.
Than began the unsuccessful search for a GP/ENT specialist who could give me a diagnosis. The notes were useful as I didn’t need to give repeated explanations of symptoms however, all ear tests/MRI scans, etc. showed no problems. So why did I feel I was falling off the exam table even tho I was lying down? There had to be someone who could give me an answer.
My GP prescribed Ativan (lorazepam) for the anxiety and Naramig for the migraines. He didn’t mention the fact that rebound headaches could occur if I took too many Naramig and kept giving me script after script as the migraines became a daily recurrence. The chemist didn’t question my frequent request for the meds either.

In March 2011 an ENT specialist recommended some neck massage & referred me to another Neuro-physiotherapist (Prof, Dr Margie Sharpe in Adelaide, SA) who has made her life’s work the study of migraine & vertigo. Jackpot!! I handed over all my notes & after further consult she told me that I had MAV, gave me strategies for coping with daily life (walking on heels, focus on horizon, red dots around the house to focus on & very gradual exposure to visual triggers) plus names of neurologists in SA who understood the condition. Now I had something to research and found your amazing website.

I had a long wait for an appointment with Dr Kneebone so began my research (not easy as pc use was/is difficult for me) & ordered a copy of Dr Bucholz’s book which was very informative, esp. the info re triptans & preventative meds. I have been on a ‘migraine diet’ for years so tweaked my diet a bit more & asked my GP for a script for nortriptyline which I was careful to start at a very low dose & increase slowly over weeks. The nori gradually helped with reducing the frequency of the migraines but left me feeling ‘hung over’ most of the day. Stopped Naramig & used Panadol as I have osteoarthritis so have to use some pain meds.

Then I found your MAV survival guide which was even more useful than the book and by the time I got to see the neurologist I felt able to ask questions & know what answer I should be hearing!! Amongst these was: did he have many patients with MAV? – he was honest and said ‘just a few’ so I didn’t feel he’d had lots of experience with different meds for MAV. I asked whether he knew Dr Halmagyi in Sydney & he said he knew Michael! I explained that I’d like to try Prothiaden as that was a med Dr Halmagyi favoured and he wrote a script for it without hesitation. I’ve been taking Prothiaden for four weeks now – my sleeping pattern is much better, migraines are about every 10 days and low intensity and brain fog is lifting.

Am getting my life back on track – driving, walking, cycling, pilates, etc. Not overdoing the exercise though! Shopping is still restricted as is pc use. It’s taken a long time but now I’m back to reading books & watching TV although any scrolling or panning can set me off. Couldn’t believe that I could ride my bike without problems yet my balance was still not that good. Is it the same phenomenon as driving – why can I drive the car but still get dizziness as a passenger, even though I concentrate on the horizon?

I can’t say ‘I’m over it’ as maybe the Prothiaden won’t be the complete answer but my outlook is hopeful!! Thanks to all you guys who have contributed to my getting this far, not least to my mental health by knowing that I’m not the only person to experience the weird and frightening symptoms of MAV!

:slight_smile:


#230

Hi Everyone,

My name is Ginny and I am 30 years old. I have been visiting this excellent website for about 2 years now, but haven’t actually registered until today. I do really want to say a big “THANK YOU” to Scott and the team for creating this site because if it hadn’t been for the knowledge that I have gained here, I wouldn’t of had a clue about this dizzy condition. It is just a God send knowing that I am not the only one on this planet with a dizzy disorder that causes so much change in one’s life.

My Story is a 3 year long dizzy journey:

My first experience with vertigo (big monster) was when I was 21 years old. I was pregnant at the time but didn’t know it because it was so early; I was in Burger King sitting by myself then all of a sudden the whole place starting spinning out of control and I started to sweat and panic. I got up calmly and slowly walked out of the restaurant. It was incredibly difficult to walk straight as because I felt really drunk and I couldn’t feel the ground - all of my surrounding were surreal and i felt that I was on the “merry go-around.” I managed to stagger my way to the pharmacy depart. at the grocery store. I spoke to the pharmacist and told her that I was very dizzy - she gave my Bonamine pills. I then when to the customer service depart to call my boyfriend and asked him to pick me up cause I couldn’t drive my car. I just sat there with my head down while people in the line were asking me if I was ok. Anyhow, the vertigo didn’t subsite until like 3 hours, then I felt fine.

My second experience with vertigo hit me like a year later and lasted 2 weeks with out respite. With this occurence the doctor diagnosed me with Labyrinthis. I had just had a cold a couple of weeks prior and he said the virus had spread to my inner ear. The dizziness was worse upon head movement. I was very exited to get rid of it and return to work; I had no residual dizziness and returned to full normality. I didn’t think that I would have to later encounter it again and live with dizziness constantly for years on end.

My third experience came when I was about 6 months pregnant. I started getting spins at night while laying in bed. I talked to the doctor about it and she said that I needed to drink more fluids. I had this vertigo/ dizzy feeling for about t week and then it subsided.

Now the fourth experience of this crap has stayed with me bring some other symptoms with it. I now have tinnitus in both ears and in the head where it sounds like white noise and my right ear buzzes; i have stabbing left head pain at time and sensitivty to light. It all started 3 months after the birth of my daughter. I started to feel light headed, so went to bed and woke up two hours later with that vertigo AGAIN. I was puking and sweating and praying that it would just leave me alone! But lasted 3 days close to constant. After the vertigo left, I have remained dizzy. I would describe my dizziness as floating, swimming head, disequilibrium. My head feels heavy and full of pressure and my eyes are stiff cause they are so tired. I have seen 6 neuroligsts (pls. don’t think that I am a hypercondriac - i just wanted answers) had 2 MRI and 1 MRI with dye, 1 cat scan on my brain and right inner ear, blood work for complete blood count (CBC), blood chemistry, auto immune disorders and whatever else they tested for me I could tell ya - all I know that at 1 time I had 8 tubes taken. Also I have had 2 ENG/VNG tests and muscle/nerve conduction tests and hearing tests…I am glad to announce that ALL of these tests came back negative including the inner ears tests. The last neurologist who specializes in brain stem disorders said that my brain stem is fine and verbally expressed to me that he was a little perplexed. I then brought up the MAV diagnoses and he said that it is possible. He also did the neurolgical exam that lasted like a half an hour and they also was a seniour neurologist resident who was observing all this and both said that my exam was perfect and they couldn’t find anything wrong. So he has diagnosed headache and has recommended to my GP a list of migraine meds to try.

I have had Nortripline at 30 mg. I was on it for 2 months and didn’t feel any better so came of it. I am now on 150 mg Effexor which has for sure helped my depression/anxiety with this crap. It has also helped my dizziness cause now I can drive again feeling pretty centered. The tinnitus is still roaring up a storm. My headache pain was really bad and always felt on the left occipital region. It is weird cause I first experienced this head pain Jan 2009 and for that year it would attack me and linger for weeks, then go away for like 2weeks to 2 months only to return. However, 2011 has been a remission year cause I hardly get that dull pain now. I wear sunglasses through out the day cause the daylight makes me more surreal dizzy and amplifies the brain fog big time. I haven’t really given the diet a good try cause I have felt so depressed and having the will power to eliminate all that stuff has just been too hard. I find that my coffee helps to keep my anxiety down.

I guess that is it really. I hope that my post isn’t confusing cause I am just typing what ever comes to my head. Like the rest of you, I just want to feel normal again so I can have the peace of mind to be fully me and be the best mam, wife, daughter, sister, auntie, friend and employee that I can be when I am on this earth.

God bless to all of you and i pray that we all get better or for you guys who have reached that point, I pray that you maintain it and have peace of mind tht you will never have to be Dizzy again.

Ginny


#231

Hi there. My name is Lauren and I’m a (otherwise healthy) 25 year old female from Chicago, IL, USA. I was recently diagnosed with migraines after being subjected to a wide range of medical testing. At this point, I’m just trying to maintain a somewhat “normal” lifestyle while dealing with this annoying, sometimes painful, and often debilitating condition. Here’s my story:

It all started back in the fall of 2008, when I was participating in a weekly pottery class. I was in college, and admittedly smoking a fair amount of marijuana (multiple times daily). I was at the studio one night, reached down to a lower shelf to pick up a finished piece of pottery, and nearly fell flat on my face. I was so dizzy and disoriented, but didn’t have a headache or anything. I went home thinking maybe it was a result of the smoking, but the symptoms continued on and off up until today, even thought I quit smoking after that incident.

Things didn’t get too out of hand until about January of this year, when I moved into a new apartment. I had been having occasional “episodes” from the time of that first incident, so I quit smoking pot, cut back on the drinking a bit, but otherwise didn’t change a whole lot about my lifestyle. But once I moved into the apartment, the episodes became much more frequent and much more severe. I started experiencing frequent headaches, though I would only classify a handful as actual migraines, based on the severity. I rarely get the photosensitivity, though I do tend to become more sensitive to sounds and strong smells.

My dizziness occurs daily, most frequently when I’ve not gotten enough sleep or I’ve gotten too much sleep, when I’ve consumed too much alcohol the previous day (I cannot drink red wine at all without a serious issue), when driving in the car, after getting off an elevator or escalator, when walking into or out of a building (I assume this has something to do with the changes in lighting), when I change positions too quickly (usually when standing up from sitting/laying down), air travel, looking up/down/right/left (especially too quickly), when I overexert myself (running, working out too hard, carrying something too heavy, when the weather (barometric pressure) changes, when I walk into and around in a store (grocery stores are the worst), when I am in a large room (conference hall, ballroom, etc.), in a restaurant, or when walking down a hallway. So, as you can see, this disease makes it difficult to do much of anything a “normal” 25-year-old woman would normally do.

I think the most difficult part for me is how this disease interferes with my daily life. Aside from the headaches, the anxiety associated with feeling like I’m going to fall over all the time is extremely unnerving. I often describe the feeling as being “hammered drunk on a boat”, because I often feel like I’m going to fall over, like I’ve consumed a 12 pack of beer (but without the fun of actually being drunk). It’s funny, actually, because I’m always afraid to drink-- not necessarily because of the potential side effects (I can usually get away with drinking a vodka cocktail or two with little consequence), and actually, I usually feel “better” once the booze sets in-- because I am always afraid the alcohol is going to make me pass out or actually fall over. It hasn’t happened yet (fingers crossed/knock on wood), but that fear is always there.

It’s also hard to want to get up in front of a group of people to give a presentation at work, because standing without support (a wall or table to hold on to) isn’t always easy. I often avoid social outings unless I know there will be ample opportunity to sit down. I’ve even considered buying a walker or something. Okay, not seriously, but sometimes it gets that bad. For a while, I’d simply avoid going out. I’d work from home regularly, turn down dinner/drinks invitations, and just stay home where I felt “safe”. Finally, I decided I was tired of being a prisoner of this condition and decided to investigate.

Now, after I’ve spent I-don’t-even-want-to-mention-how-much money on medical testing, I’m attempting to follow my doctor’s “migraine diet”. As if having a “condition” isn’t bad enough, now I’m supposed to deprive myself of a ton of things I enjoy. Caffeine, alcohol, chocolate, cheese, yeast (aka bread, beer), MSG (it’s in WAY more food than I ever imagined), citrus, and the list goes on… I’m trying to remain positive, trying to remind myself that depriving myself of these things could mean I might feel better. Well, here’s hoping! I definitely want to try to avoid getting on medication, because when I initially tried the meds I was like a zombie… felt completely stoned and just wanted to sleep. There is no way I can live my life that way. I’m also going to be starting some “alternative” treatments in the coming weeks: accupuncture, massage therapy, and chiropractic. I’ll keep you posted on how everything goes.

In the meantime, I’m grateful to be able to share with others who know what I’m going through, and appreciate you all sharing your stories and providing support. People who don’t have this condition just don’t understand, no matter how hard they try. I’m grateful to have a supportive family, a patient boyfriend, and an understanding employer, but mostly I’m grateful I’m not suffering from something worse. Lord knows there are much worse things out there.

Thanks for reading and I welcome any comments or feedback! Hang in there, everyone!


#232

Wow. Just discovered this page/forum. Very helpful.

My story is probably very similar to many others. I have had these dizzy/vertigo spells all my life, ever since I was about 18 months old and just sort of fell over. Scared my mother quite a bit. A barrage of tests turned up nothing and the doctors after several years basically called it benign vestibular ataxia. They also said that I might develop migraines as I got older. By that time, I was fed up with them however as nobody was able to help me and as a young kid I told my mother I didn’t want to see doctors anymore.

I spent my adolescence suffering from occasional typical migraines (no vertigo) as well as my periodic (60-80 days) vertigo spells that on set while sleeping. I would wake up and stumble to the bathroom to resolve the nausea. Usually by noon I was perfectly fine and okay by the next day. I missed a lot of school however, and at some point in junior high I said no more. I am gonna push through this. I started going to school, and just suffering through it. The photophobia, the phonophobia, walking through hallways with eyes closed while lightly touching walls to keep my balance. It was not fun. It changed my course in life and I think left me with situational anxiety. I am always worried that I might have an attack when I can least afford to have one.

By the time I hit high school however the spells lasted longer and longer. I no longer was fine by noon. I still remember the day that I changed my mind to see the doctors. I was at home trying to sleep off the vertigo and nausea in my room with the sun light filtering through. The pain was horrible. I had some friends come over who wanted to play basketball, and I just could not play or even carry on a conversation with them. They didn’t understand and stared at me confused.

I went to a headache specialist soon thereafter who gave me a variety of medicines over time. He started me on a calcium channel blocker which I took for several years which did not do anything. I also started trying all the 'triptans, ergotamine, but as I wake up with the vertigo, none of them did anything. He did teach about food triggers, so I no longer eat MSG at all, and no red wine. NO bueno.

I eventually moved and saw another doctor who gave me propranolol, which also never did anything except numb my hands. My current doctor has me on nadolol and says to take meclizine to treat the vertigo. He seems to think that I have a migraine without symptoms which triggers the vertigo. As it happens at some point after the migraine the meclizine is all I can take.

I went to an ENT who basically confirmed it was vestibular or basilar migraines. They did an MRI and did not find cancer or lesions or what not. They did a caloric stimulation test in my right and left ear and confirmed that I have damage in my right ear from the vertigo/migraines however.

I now have vertigo attacks that I guess are related to migraines. I wake up one day with a violent turning sensation of right to left. It happens while I am sleeping and usually becomes a subject of my dreams. I then wake up and realize I have a week of this. Sporadic violent episodes of vertigo that hit whether I am moving or standing still. My eyes ‘flutter’ and I can’t keep them open. I don’t usually get nauseous anymore, but light is a problem when moving between levels of light. My attacks usually progresses over the course of three or four days getting worse and then three or four days getting better. They are worse in the morning upon waking and a little better by evening. What fun. They happen almost like clockwork every 70-90 days no matter what I do.

The meclizine and the nadolol have at least made them bearable, though they don’t seem to have stopped the episodes. Cutting out food triggers has also helped end the typical migraines. Still, it would be nice to not have these vertigo attacks anymore.


#233

Hello everyone,
I have just heard about MAV today and am not sure if I fall in that category or not. I suffered with severe migraines for years when I was in my 20-40’s. However, it has been a long time since I have had a serious headache, for which I’m very thankful.
In 2003 I started having strange symptoms. It began while I watched t.v. - the image on the screen seemed to pulsate. Soon after the foliage on the trees at the back of my garden did the same thing. My vision would go in and out of focus. My eyes were tested and I had an MRI on the brain. Everything was normal. Over-the-counter motion sickness pills seemed to help and the symptoms continued for several days before subsiding.
Symptoms became more severe later that year and the pills or patches did not help.
I do not have vertigo dizziness. I do get blurred vision, disequilibrium and disorientation. Symptoms are worse when there is a lot of activity around me or if I am turning my head a lot, such as in the mall, supermarkets or driving. I have a tendency to veer to the right when walking and bump into things. Patterned floors, things moving in my peripheral vision, traveling on fast highways with heavy traffic, repetitious sunlight and shade caused by trees alongside the road, all make it worse.
I no longer drive on fast highways but restrict myself to our local 25 mph streets.
I have been to many specialists, had lots of tests and vestibular therapy over the years. The only diagnosis I was given was ‘supermarket syndrome’ or Safeway syndrome, which sounds like the same thing. I was told there was no cure and it could stop as abruptly as it began.
During these years I was diagnosed with narrow angle glaucoma and gluten intolerance.
I’m sure you would all agree that this problem we have changes our lives. It is so frustrating because none of this shows outwardly. I’m sure we all look perfectly healthy to everyone else.
I am so pleased to have found this website.


#234

I have just been diagnosed with MAV after 11 years of symptoms. I have seen so many different doctors and been told it was Menieres Disease. I have had so many tests and was even about to have surgery on my inner ear at one point.
They seemed so convinced it was Menieres and apart from surgery nothing could be done, I just gave up, stopped going to hospitals and put up with it.

That was 5 years ago.
Anyway we moved house and changed doctors. I had started having migraine quite often so went to see them. After talking about my symptoms they said I should be referred back to the hospital.
Went to a completely different hospital, doctor I had never seen before and within a few minutes of talking to her she said it’s migraine associated vertigo. She couldn’t believe I had been told it was menieres disease for all these years.

So I am starting treatment for it now and have to go on a no salt or caffiene diet. Really hoping I start to feel better at last, I feel better just having a diagnosis.


#235

Hi everybody,

My name is Jon and im from Sunderland in the UK. From an early age i had suffered from migraines but not all the time. i would have attacks together then none for years. i hadnt suffered any attacks since around 1993 then about 3 years ago i started having vertigo attacks, real bad ones that kept me off work so i went to the doctors who sent me to see an ENT specialist. Anyway lots of tests later including an MRI scan to rule out the most sinister cause a brain tumour. the doctors were stumped and basically said i had Menieres disease and put me on serc and betahistine.

At the time i was on 9 tablets a day and still the attacks kept coming so back to the doctors i went. i couldnt see my regular doctor as he had just retired so i was to see a different one i talked to him for a good 10 minutes describing my symptons and how i felt about life in general and he diagnosed me as having some sort of anxiety attacks to which he stopped prescribing me the serc and betahistine tablets as they werent working anyway and put me on fluoxitine (prozac). within a week of taking this medication all my symptons had gone and so for 2 years had virtually no symptoms, just little dizzy spells which lasted seconds until July this year. we were in the process of preparing to move home so quite a stressful time. anyway i was in a local supermarket when the worst attack i have had come on i knew this was coming by effects on my hearing. by that i mean tinnitus distorted sound. you will probably no what i mean. this always starts a couple of days before the vertigo happens. the world started rotating and you fix your sight to one spot. i managed to get to the toilet. there i was for about 20 mins trying to calm myself down as i knew i had to get home asap.

i had to drive home 4 miles which i should’nt have because my partner can’t drive all the time keeping my eyes fixed on one point to stop the nausea setting in. anyway i got home got into the house and collapsed to the floor. i had to crawl to the toilet because i was very nauseous at this point. luckilly i was’nt sick but then crawled to the sofa to close my eyes and ride out the attack. i went to sleep and when i awoke just like the times before although physically and mentally exhausted the attack was over. now after that one i went back to the doctors and explained. he increased the dose of the tablets which seemed to work for a while but the vertigo attacks have come back again. i have’nt had a bad one yet but its coming. i just know it is. i’m back at the doctors this week. i stumbled upon this site after trying to work out what’s wrong with me. can anybody help please as it’s getting me really down now.


#236

**Hi all, I will try to keep it short. Im 52, Been dizzy for 11 yrs, right after i has Lasik eye surgery…not sure if the 2 are related.

anywho…Ive seen 6 different drs in that time , chiropracters, naturopaths…etc…few yrs ago i was told i had a mild case of Menieres…but my hearing was NORMAL, so it cannot be true~
after many many tests today i was told i probably have MAV.

I take restoril to sleep & the occasional Xanex. for the migraines Ive tried…Relpax, Toradol, Tramadol & Fiorinol. Nothing has helped. I hope i can learn alot from others here on how to cope. Thanks for having me.**


#237

Hi-
I have just been diagnosed with MAV. Saw a wonderful neurotologist at Univ. of Cinti who referred me to a headache specialist neurologist at UC (took forever to get into him). I have been having migraines for years but didn’t do anything about them. I typically would get them just prior to my menses and it would include a tinnitus, blockage feeling in the ear and then dizziness that would pass once the headache and menses started. In April of this year I had a “lightheaded dizzy I’m going to faint/fall over” attack that sent me to the GP who tested my heart and it was normal. In addition to this I was having difficulty driving (which is hard because I am a hospice social worker and need to drive between patients), seeing patterned carpets, riding escalators, loud noises, florescent lighting, fatigue, etc. I have always been motion intolerant-carsick, boring companion at an amusement park, etc. I went to an ENT at the GP office who said I had BPPV without touching me. The episodes continued so I found my own doctor by searching the web. He thought perhaps it was MAV (digitalcommons.unl.edu/specedfacpub/24/) but also did the ENG, VEMP, etc. He also prescribed VRT because I also had some vestibular weakness. I just completed 6 weeks of that and it was okay for a bit but seemed to irritate me lately so we stopped. There was improvement with my ocular vestibular system though but enough time had elapsed.

I have been reading here for a bit but never posted. I ordered and read “Heal Your Headache” and “The Migraine Brain”. I also sent my blood to the lab ALCAT be tested for food sensitivities. Interesting to note that several of the migraine diet items were on my highly intolerant list. I began the diet 2 weeks ago including gluten free. (ugh)

I also have panic disorder with agoraphobia which I have had since I was 16. I take Paxil, Xanax, and Gabapentin for that. The dizziness ramps up the anxiety terribly. If the weather is changing that really sends it over the edge. The Xanax seems to calm down the dizziness some but not entirely. I also added magnesium citrate and Vitamin D. The neurologist has given me a prescription for Nadolol-starting slowly and moving up in dosage each week.

I hope to find some long lasting relief. It is nice to know I am not alone…although I certainly wouldn’t wish this on anyone. Question for any of you that have been diagnosed. What is the “official” dx given to you, as in the ICD-9 code? I am curious about this.

Thank you for listening to my story:)


#238

Teddypan,

Welcome to the forum. Sounds like you’re on right track already. You’ll find everyone here is quite helpful and there is a way out of this mess. Have a look in the success stories. That always helps me get through some rough patches. Maybe with adjustments you do to your diet now that you know what you should and shouldn’t eat and the nadol will be enough to knock this out for you. You can also try adding in a good exercise program along with your treatment. That should help a lot. Best of luck to you! :slight_smile:

Greg


#239

Hi

I’m a 48 (actually 49 tomorrow - yikes!) year old woman from Canberra, Australia. Mother of 4, divorced, live now just with my baby who is 14, as the others ahve all grown and moved.

I WAS always one of those nauseatingly well humans, who never got ‘sick’. No plain old colds or coughs. Though on the odd occassion when I did get sick it’d be a right doozie - pneumonia or a burst, gangrenous appendix.

I used to be a vet nurse, show jump horses, play netball, coach netball…plus do the mummy thing.

After child number 4 was birn when I was 35, I never really felt ‘right’. Nothing specific…had my first attack of dizzy out of the blue when he was about 2.

Then in 2005 we moved north to the tropics and all hell broke loose with my health. First I started getting severe classic migraines. Not too many, many 4 in a year. Usually period-related. Then in 2007, the day before my oldest child was getting married, I had a migraine and took a codeine tablet for it, as we had to be at the wedding rehersal that afternoon. But 5 minutes after taking the codeine, I had a seizure. Luckily for once I wasn’t home alone - my daughter and her partner were there, as well as my youngest son. So they called an ambulance and I spent the rest of the day in the local hosptial.

After doing a CAT scan at about midnight, they let me go home once they decided I didn’t have a stroke or brain tumour (was grand waiting for THAT answer!). But they saw something odd on the scan and said I should see a neurologist.

At this stage I was feeling pretty normal bar increasing headaches.

About a month later I saw a neuro and he wanted an MRI…I put it off for about 4 months though for some reason I now cannot figure out. Fear of something I guess (but now after 4 MRIs I can’t understand why). Anyway, the MRI came back covered in ‘white matter lesions’. The neuro said, “well, the lesions look like MS but you’re not showing symptoms of that at the moment so we’ll call it migraine”. Hmmm.

Jump forward a few months and I had the WORST migraine ever. The next day, I started this awful dizziness. Years later , it’s still here. I spent many days in the ER and a week in the neurology ward while the neuros scratched their heads, debating whether I had MS or MAV/migraines.

We moved back south to Canberra early last year, as I detested the heat and humidity in the tropics. I saw a new neuro here and he said I had WAY too many lesions for them to be migraine-related, also black holes which are old lesions bascially, and that I had BOTH MAV and MS. Yippeee. He pointed out a lesion on my cerebellum which can cause the same type of symptoms as MAV.

So now I sit here wondering which bits are MS and which bits are MAV. I think most of my problems are MAV-related, though I get this god-awful fatigue that is all-consuming. Not sure if that is MAV related? I know for sure fatigue is a major complaint for people with MS.

I now live just with my son (oh, I said that already), surviving on a disability pension. I spend most mornings throwing up - actually hardly any nausea, just vomit. I have about 5 ‘good’ days per month. Though I find them almost depressing - when the ‘good’ day is ending, I get sad thinking, “will I feel like s**t again tomorrow? probably…”

So I am now starting, very slowly, Verapamil. I have a box of 40mg tablets that they prescribed me at the ER recently, though my neuro is insane and wants me on 180mg straight away HAHAHAHA no hope there! I had one 40 mg tablet on Saturday morning and was insanely dizzy 2 hours later - felt worse than usual so don’t kinow if it was drug related.

Is it mental to cut a 40 mg tablet in half or 1/4s to start?

That’s me in a nutshell. I am hoping for a good night’s sleep tonight, as that didn’t happen last night as President Obama was in our fine city for a brief ‘hello’, and we had RAAF jets cirlcing overhead all night :roll:

Jemm


#240

Jemm,

That sounds just like me except my MRI came back clean. After the birth of my second child when I was 33 something changed. I don’t really have the painful migraine but my headaches were increasing and they felt like sinus headache most of the time. By the time my son was a year old I was off balance, dizzy, having major anxiety and panic attacks (which the doctors said attributed to my being dizzy and off balance). I felt like I was walking on the moon all the time and I could barely walk the dog anymore. Sometimes I felt like I was going to fall off to the right when I walked. I KNEW this was NOT just ANXIETY!!! I went from doctor to doctor and they all dismissed me, from Fibromayalgia, to MS to Lyme Disease, everyone thought I was a hypochondriac! Fast forward 4 years, we spent the whole summer remodelling our house and kitchen and lived on fast food for 3 months! I always felt worse after eating pizza or hot dogs and suspected I was sensitive to salt. Anyway, I never truely experienced spinning vertigo until the morning my son came into my room and I turned my head and the whole world was spinning vionently!! I ended up at the hospital overnight. They said I had Labrynthitis and sent me home. I spend 10 days at home before I was going to return from work when BAM, another vertigo attack! At this point my ENT thought I had Meniere’s disease!!! GREAT!!! This second attack left me feeling permanently damaged and depressed. I finally found I\a neurotologist who was convinced I was suffering from MAV but wanted to rule out any inner ear issues. He gave me all the testing. I prayed they would come back clean so we could have a clear diagnosis of MAV but I wasn’t so lucky. I had a positive VEMP test, positive ECOG which shows a very high amount of fluid pressure in my left ear and a CT showing what appears so be a Superior Canal Dehiscence! He wanted to start treating with meds first and avoid migraine triggers and eat a very low sodium diet for the hydrops in my right ear. Do you know how hard it is to cook that way???!! Sometimes I don’t know what the heck to eat anymore!!! I so miss the days of just making anything without reading labels or worrying if I ate too much sodium and get vertigo. Very depressing for someone who loves food!! Anyway, the doc gave me 40 mg of Verapamiml 2x a day and I couldn’t make it past day 4. I felt very flat, tired and had trouble sleeping. I am thinking of giving another shot because I have vertigo everyday now. After reading all the posts on this website it seems like you have to try a lot of meds before finding the one that works for you. By the way, I have heard that MAV sometimes lights up the brain like MS and have heard of many people being misdiagnosed with MS when it is actually MAV. The key is to find a doctor is on the cutting edge of science and medicine. Not all doctors are the same. Many do not have the training or knoweldge that others have. Have you read the book Heal Your Headache? Has lots of info. Know you are not alone. Employers, family and friends never understand how debilitating this condition is becuase we all look so good on the outside. I sometimes think my husband thinks I’m lazy. He has no idea what I go though everyday just to make it. I can’t even drive at night anymore. Don’t give up the fight and I hope you give the Verapamil a chance. I’m going to. Starting back at a lower dose on Monday. Best of luck to you.

Leslie