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So for about 3 years now, my son has had episodes of dizziness. We’ve been to several different specialists, had blood tests, MRI scans and everything you can think of and the only thing that they tell us is that he will grow out of it or it could be that he gets migraines that cause dizziness and not pain like myself and my daughter get. My 12 year old daughter has had migraines since she was 6 years old; she would get them so bad that she would vomit. Anyway, I have not had a migraine in a long time and my daughters have gradually tapered off; the doctor had only given her Aleve to help with these headaches and it seems to help her.

My concern now is my son; is there any medication that he can take besides the meclizine and tylenol? which he says doesn’t seem to help. I feel so bad for him, especially since today and yesterday he’s been to the nurse and his teacher told him to ‘suck it up’. I was furious and talked to the teacher today, and told him that these episodes are very real and very scary for him and for him to say something like that is just uncalled for. Anyway, the school knows now (it’s a new school and I forgot to give them his medicine… so i guess it is somewhat my fault for not informing the school to begin with.

Any advice would be helpful, I wish I could get him something that is going to work.

Gosh, I do not know where to start, so I will tell my story then I welcome any and all comment and help.

Today is September the 7th 2010. Exactly 5 weeks ago I went to bed feeling normal, when my alarm went off the next morning to get up and get ready for church, I reached over and shut it off, sat up in bed, swung my legs over the side of the bed and stood up…then all hell broke loose; I got really dizzy, the room started spinning, and I instantly got sick, and crawled to the bathroom because I could not walk. That’s where I stayed for the next 4 hours vomiting and spinning in circles. It was horrible, one of the worst experiences I have been through in my entire life.

After the 4 hours had passed, I felt slightly better, not much but slightly, enough to move from the bathroom to the bed where I stayed all day. At about 2 in the morning I awoke to go to the bathroom at which time this started all over again. I woke my wife up and had her take me to the hospital emergency room. My wife had to call a friend of ours to come over and help me to the car so we could get to the hospital. It was an awful 10 minute ride to the hospital, I was dizzy, spinning, throwing up etc. horrible time!! There at the hospital they did a CAT scan, drew blood, and hooked me up to a heart monitor, and found nothing wrong as a result of those tests. The on call Dr. told me that it is probably something to do with the inner ear which controls balance. So I left there with drugs to calm the symptoms of dizziness and nausea. They worked, but I was still not right. Two day later I went to my family Dr and he more or less told me the same thing: inner ear problem. He prescribed Prednisone and Valium which made me feel like a zombie.

Four days later I was still feeling awful so I went back to my family Dr. He said gosh, this should be gone by now, so he was concerned and sent me to an Ear, Nose and Throat specialist…the ENT Dr. did a hearing test, and all was fine there. They then sent me to a Balance Center where a therapist tilted me up and down making me really dizzy but only for a very short time. I was told by her that I had these crystals in my inner ear that were out of place and therefore I have what they call BPPV and the tilting of my head and body would move these crystals back into place. Well, I walked out of that therapy session feeling instantly about 75% better than when I came in, but still all was not well. I have been back there four times for this tilting therapy since then. I have today gone through a 3 hour balance test. I was told by the specialist today that he believes that I have MAV associated with Migraine. I dont even have headaches! I don’t get it.

My symptoms right now are: when I bend over or stand up from bending over, things are a little shaky, but I do not spin or get real dizzy…when I walk, it is like my eyes are bouncing inside my head with every step, and it is hard to concentrate on where I am walking to because of this…I now have the ringing in my ears, I guess it is called tinnitus, which is constantly there and audible…flourescent lights are a nightmare, especially when walking into a store with a lot of them. I have been off work now for 5 weeks, and do not know how I will be able cope with this inside of a factory. I am looking for answers, ideas or anything that will help me with this. If these symptoms sound familiar to you, please write me back.

Thank you, John

Hi Everyone,
I have had migraines for much of my life - from the age of 12 onwards. The migraines got worse as I got older, and were particularly problematic when I was under stress in grad school. At least two times a month I would be disabled by throbbing pain, nausea and photophobia. I relied upon handfuls of Advil and Imitrex for relief. I aslo have a history of motion sickness - I could never go on amusement park rides - even the children’s carousel would make me ill. I have severe allergies that got worse with time, to the point that I had to carry an Epipen with me in case of anaphylaxis. After extensive allergy testing I identified my triggers, and unfortunately most were food related: flour, potato, tomato, peppers, berries, soy and the preservative benzoate. I had to radically change my diet: no foods at all with flour (sadly all the best foods in life!), no processed food, no packaged food, no fast food and no junk food. When I eliminated these triggers my migraines virtually disappeared. My first bout with dizziness was three years ago in the fall. One morning I woke up extremely dizzy. My family doctor said that I had a viral ear infection, that my right ear was involved (due to the direction of the nystagmus and that I kept falling to the right) and that I would recover quickly. After two weeks the symptoms disappeared and I never thought any more of it.

In the past few years I have had tremendous stress in my life, including the death of my mother from cancer and the loss of my job. Two years ago I was hired in my current position - it is a very stressful research position. Within a month of starting I noticed the headaches were returning on a frequent basis. This year the workload was heavier, and I neglected my heatlh - long work hours and a diet of coffee and not much else. In April I developed a lingering cold. When the cold resolved I started to notice that I felt really lightheaded when standing up. On May 18 of this year (a date I will never forget) all hell broke loose. I was at work and I was in a busy hallway and I suddenly felt very dizzy, like the ground was tilting. My vision was distorted and I had to sit down because I thought that I was going to pass out. I have never been the same since that day. I went to my family doctor and again I was told I had a vestibular virus involving the right ear. However, unlike 3 years ago the dizziness did not resolve. I went back to my doctor and asked to be seen by an ENT - a 3 month wait list. In July and August I actually felt good - I was going to vestibular rehabilitation therapy and I was able to work and go to stores and be pretty normal . I had disequilibrium and I had trouble standing in line but I was still functioning. My symptoms changed in September. A new lightheadedness appeared, particularly in the morning. I also had a horrible rocking feeling. When I was standing I had a terrible feeling of being pulled into the ground. I didn’t have distinct migraine pain - rather it was pain behind my right ear and across my neck. I had tinnitus as well. I was also experiencing palpitations and panic attacks at night. I went to urgent care twice for IV maxeran for the head pain. The dizziness was 24/7 and going to work and into stores become a nightmare. A doctor at urgent care suggested that I take verapamil to prevent migraines. That was a total disaster. My blood pressure is naturally low (90/60) and the verapamil made the dizziness unbearable. I lasted a week on it.

When I saw the ENT he thought I had Meniere’s disease because I had low frequency hearing loss in the left ear. He wanted a second opinion from his colleague - a neurotologist. I was lucky to see her that day. She ordered an MRI and an extensive battery of vestibular tests. Three weeks ago I saw her again and she said that I had MAV following a viral ear infection (25% damage to the right vestibular nerve). Although hearing loss in MAV is rare, she said that it can occur, as it did in my case. She told me to follow a strict migraine diet (which I am) and I was started on Nortriptyline 10mg. I am on a wait list for a neurologist (a long wait in my city). I have been on the Nortriptyline 3 weeks now. I attempted to titrate up to 20mg last week but I was more lightheaded and I brought the dose back down to 10mg . I will let my body adjust to the drug some more before moving the dose upwards again. I wake up very lightheaded (I don’t know if it is from the MAV or the Nortriptyline), but by the middle of the day I actually feel quite good. I can go into smaller stores, but I still have a lot of visual problems in complex environments. I am hoping that a Nortriptyline increase will help with that. I also take Clonazepam 0.25 mg twice a day and this has been very beneficial. The awful brain fog that I had a few months ago is thankfully gone. Going to work is still a challenge but I am hoping with time that it will become easier. All the rocking and spinning feelings and the “marshmallow feet” symptoms are at least gone for now. After living with MAV I will never take health for granted again - Lisa

Hi,

My name is Leslie and I’m 37 years old. I haven’t had a diagnosis yet but I am glad I found this website. I have been to every doctor under the sun. They just want to give me antidepressants. They don’t want to listen to me, they think I am a a hypochondriac. I started to have a problem with balance around 10 years ago and the very first sign of it was over 10 years ago on the treadmill one day. I was very active and ran on the treadmill daily. One day, when I got off the treadmill, I felt like I was still moving and it felt funny and kind of dizzy and really freaked me out! I was young at the time and didn’t think a lot about it but it worried me a little. Then I had an episode at work. I felt like I was going to pass out and went to the ER only for them to tell me I had an abnormal
EKG which then led me down the path of stress tests and ultra sounds of my heart only to find nothing. Since I was younger at the time, I didn’t pursue doctors over and over. It took me over 10 years to realize that every time I felt like I was going to pass out or die, I was actually having a bout of vertigo which led me into what I have finally accepted as panic attacks. I thought vertigo was only spinning and super dizzy like having the spins when you are drunk.

Anyway, I don’t want to make this too long but now my life has turned into doctor after doctor and they don’t take me seriously. The balance and dizziness had ruined my life and one of the things I always try to tell the doctors is this: I once enjoyed everything about life. I was a thrill ride seeker, a fun loving person and now I can’t even walk my dog on an uneven path, I can’t play ring around the rosey with my kids, hell, I can’t even turn in one circle!!! I can only watch my daughter from a distance on the rollar coasters. She always says, “Mom, you always say you loved rides, why can’t you please just ride one ride with me?” It makes me want to cry.

I now have severe sensitivity to light, smells, sometimes my vision looks like it is steamy or smokey, or snowy and all that does is cause me to panic. My vision sucks, it’s blurry a lot when I’'m tired and the eye doctor says nothing, I have trouble driving at night, and my eyes hurt. All of this has caused me a lot of stress, my neck muscles are so tight you could bounce a quarter off of them which I’m sure doesn’t help the dizziness. I NEVER had headaches before but now I get those stabbing pains in the side of my head and there always feels like there is pressure, even fluid at the base of my skull. I am in hell and I will do anything to feel better. I do think that one time a doctor did say something like, “Maybe you are having migraines?” I said, I’ve never had a migraine. I always thought migraines were like the worst headache on earth where you have to go into a dark room away from all light and noise. Please, does anyone have any thoughts or advice for me? A doctor to go to? I really need a better quality of life.

Hi All,

This is my first post here. I am a 43 year old male living in Sout Africa. Been told for the past three years that I have vestibular neuritis. Obviously believed the doctors initially and read all I could regarding this. At some point I realized that something did not gel. According to most literature, VN does not last that long and not persistant in terms of the symptoms. Also briefly spoke to Dr Hain and he said that VN never lasts that long. I started reading articles about Migraine and eventually ended up here. I am confident that my symptoms (almost permanent low grade nausea, tinnitus, light sensitivity, dull headaches almost daily and then the dizziness, weird foggy feelings that would come from between my eyes and nose) pointed me in the right direction. I have now been able to convince a doctor to treat me accordingly. My fisrt choice was Nortriptyline, yet this is not availabe in sunny SA. He has instead decided on Sibelium (Flunarizine). I would appreciate some comments from anyone that has been on this medication.

Regards,

Gerhard

Hi,

I live in Rhode Island, am 34, and began experiencing dizzy spells about 18 months ago. June 2009 was the first time I had a spell that lasted more than a few minutes. In the months prior to that I had a few short-lived spells that weren’t too concerning. But the June spell ran for about 8 hours, although it wasn’t too severe. Shortly after the June incident my ENT conducted an ENG test that did not show any problems. He said the next step was to do a diabetes test. Well I know my body and my diet, and I knew he was headed in the wrong direction.

My dizzy spells quickly went away, so I didn’t follow up on the issue until recently when they popped up again after a year long hiatus. In the past few months I’m finding that the dizzy spells are much worse and can last several days. Compared to some of you folks, I have it easy. The spells don’t cause me to vomit, although they can make me a bit nauseated.

The dizzy spells never come with a headache. What I experience is constant lightheadedness (how bad tends to vary) with flashes of extreme dizziness that tend to last about a half a second. It’s as if I have pulses of acute vertigo that can take place every few seconds or every few minutes. But it’s those pulses that are making day to day activities really difficult.

On Nov. 18 I completed vestibular testing with a new ENT, and the tests came back normal. Today my ENT referred me to a neurologist who specializes in balance disorders, and I meet with him in late December.

I’m getting a bit worried that the dizzy spells are getting more frequent, lasting longer, and are getting more severe. Even though I haven’t been diagnosed with anything yet, I’m fairly certain my “condition” will end up being migraines. there is a long history on my father’s side of the family of migraine sufferers; however, none have had the dizziness that I have.

If anyone has any thoughts on this, I’d love to hear them. So far I haven’t found any triggers for the dizziness, and I haven’t found anything to help it. I’m also really interested in seeing if others have this sort of flashing/pulsing experience? It’s pretty startling and makes sleeping difficult.

Thanks!

Dave

Hello, and so nice to join this forum. I’ll enjoy getting familiar with it and meeting the members.
In looking back, I have learned that my migraine issues began in my pre-teen years and all through my life I had symptoms that were MAV and I blamed it on, or it was misdiagnosed, as something else, whether meniere’s or allergies or sinus problems or eye strain. I had a vertigo attack when I was 12. I didn’t have another until in my 40’s. But I had so many classic MAV symptoms all through my life, I just didn’t know it. I was a chronic headache personality, not the stereotypical migraine headaches but everyday pressure and painful areas around my skull. In my mid 20’s, MAV was ramping up at a fast terrible pace, I was on a certain path to vertigo. I couldn’t drive because I was so dizzy nearly every day for about 6 months. It was my doctor that said to abstain from dairy foods for a month and see what happens, although he never said the words “migraine”, “vestibular”, or “meniere’s”, even though I had terrible tinnitus along with the debilitating dizziness and fluctuating muffled hearing. Lucky for me the dairy-free life did the trick back then. Even the headaches went away. I was good for another 15 years as long as I stayed away from dairy products and all its separate components. Then it started up again, with a vengeance not seen before.

Eight years ago, for a couple of years, I had nearly constant dizziness, and when I wasn’t specifically dizzy it didn’t take much to push me over the edge. Two years into that the tinnitus started. Intermittently at first, but by the 3rd month it was constant. Ear fullness and muffled hearing began to increase in my right ear, sensitivity to noise was horrible and I wore an earplug nearly 24/7. And by the 8th month I had gradually become stone deaf in my right ear, no more fluctuations. I was devastated and had some symptoms in my left ear but nothing significant at that time. Also, by the 6th month into the tinnitus, I had my first vertigo attack since I was 12. It lasted about an hour and it was terrible and exhausted me, but not as bad as what was to come. Within another month or so the 2nd one hit and this one held nothing back. It_was_hell. More would follow.

I had to try something, with much of it being familiar with what I went through in my 20’s, I experimented with common food offenders thinking it was something else I was eating. Nothing definite was identified at that time. But we had been suspicious that I was being adversely affected by things I was breathing in and we made huge changes at home to lessen those offenders or even eliminate them (anything with a fragrance or chemical outgassing had to go, dust and dustmites had to be eliminated as we pulled out carpets and replaced fabric furniture with leather and launched a daily campaign of intensive cleaning, my home became a clean air space), I began the game of dodging what would assail me when I stepped out into the smelly and particulate world, and I began to feel better, the vertigo attacks stopped their frequency, but I was never really well, just barely managing, always so easily derailed with the smallest of triggers. One of the really awesome things that improved with the changes I made was that my hearing slowly returned with little permanent damage. The tinnitus faded and the fullness went away. But I was still afraid because this beast could come on so easily and for what seemed like no reason at all. I always kept my promethazine with me every where I went and used it a few times each month to ward off what felt like an impending vertigo attack.

At first I believed I had meniere’s, for 3 years I was certain of it, but as time went on and I learned more about meniere’s, that definition just didn’t fit. I was dizzy so much, it completely altered my daily life, I felt like I was walking on couch cushions most of the time, and that is not meniere’s. Something felt wrong with a meniere’s diagnosis. But I never considered migraine. I had been fed myths all my life, like the rest of us, as to what migraine was suppose to be, and I didn’t fit that narrow, stereotypical definition that is perpetuated by those that don’t understand, and sadly, many in the medical profession don’t understand it either. So I remained uneducated about MAV because I had ruled it out before even investigating it.

I had improved only to a point of barely managing my symptoms. What I was eating and becoming increasingly intolerant of began to take it’s toll for the next 3 years after that, until it could no longer go unaddressed and I was thrown into a relapse for months that added another symptom I had not experienced up to that point, and that was the MAV defining one. Along with the typical ones of constant dizziness which at times was debilitating, tinnitus and ear fullness, I then began to experience extreme sensitivity to light during surges in symptoms along with extreme sensitivity to noise more than ever before. The answer became clear with the help of some of my friends that experienced migraine. It was not meniere’s, it was migraine. Hindsight again proved to be clear as day.

The following 3-4 months afterwards I charted and targeted and experimented with foods and food additives, immersing myself into Dr. Buchholz’s book, “Heal Your Headache”. Later I discovered the book, The Migraine Brain, by Carolyn Bernstein and it is excellent also. I started really getting well, and I lost my fear because what I really had was no longer unknown. Since then not only have I identified my food triggers but have found so many wonderful substitutes that I don’t feel deprived at all, even processed foods, and I know how to read a label in about 5 seconds flat. For 3 years I adhered to a low sodium diet and it turns out that sodium was never an issue after all. Food additives are my biggest food offenders and yet it is the inhaled offenders that will hit me the hardest and be most devastating.

I know what I have and I understand it. It’s a constant struggle, I have to think about it every day, make choices every day, and I feel it often but it is rarely more than just annoying, but I know what it is and what it will do and how to manage it. I have not had a vertigo attack in a long time. I don’t use medications. I am not afraid anymore.

Hi Folks,

New here this is my first post, I was Dx with Meniere’s in 1984, I’ve since had the Shunt (failed) and then went on to the VNS in 1999 (Success). 11 years vertigo free.

As someone who no longer suffers I won’t spend a lot of time here but will check in every once in awhile. My intent is to be a source of information, someone who has been there and done that to the point of a success story.

I’d be happy to answer any questions about my experiences if anyone is interested.

Thanks for the site Scott.

Chris

I am 29 years old i have suffered from dizzy head all my life had my first bout of true spining vertigo when i was about 13 lasted about 10 min went to the dr told me i had a inner ear infection .Later found out when i was 5 i fell down the stairs and lost my balance for about 30 days running into walls so on back then the dr didnt do anything for me told my mom i would get better . Since i was 13 i have felt pretty normal other than everytime i was sick i got dizzy the dr kept telling me it was normal . Then i woke up in march of 2007 and felt very off of balance could barly walk made it to work worked all day woke up the next day and felt the same so i went to the dr and was told i had and ear infection take mechlazine i tried it made me sleepy and i am very scared of medacine seems like ever pill i have ever taken has had bad side effects on me and no one can explaine that to me i have even been told it is all in my head . ok so 2 weeks later i was still sick dr sent me to an ent who sent me for all the test eng so on results came in that i had a 60 % loss in my left ear he said i would adjust and get better do rehab wich i did it made it way worse so i stoped and i did get back to normal then about 3 months later i got hit with dizziness while walking it was real bad it subsided and i was left very foggy and of balance and scared so i went to my gp he said he didnt have any idea to take valium to help and to see the ent which i did a week later and was told i had minears and to go on a low salt diet which i did for 30 days made no diffrence but i was allready feeling better . Had a few of those days through out the summer but lived through it so in dec on christmas eve i worked till noon on my way home i had to pull over and call my wife as i could barly see everything was to bright and were big spots floating around so i waited about 10 min and made it home layed down it went away in about 2 hours we had alot to do so no time to go to the hospital woke up on christmas with the worst headache ever and felt so out of it it lasted 3 days till it subsided i had to push through it as i have 2 young kids so after that i never seemed to ever feel normal again so i went to the ent told me he allready told me minears i went to my gp who was out of ideas so i went to a nurologist he sent me for a eeg, mri , ct scan all came back normal so over that year he sent me for 4 more mri’s he thought i had ms which i didnt so i i changed gp and went to a dr of internal medacine she was helpfull she is who first suggested migrains but also kept blaming it on my alcohol use as i like to drink a few beers after work it takes the dizzy away but she also sent me to a nurologist that specializes in headachas as soon as i told him a 1/3 of my storry he stoped me and said it basilar migrains which since then he has said are about the same as mav he gave me inderal wich i have not tried yet as i have irregular heart beats i nned to get checked first so thatmy storry in a nut shell i have been dizzy of and on for 3 years and for the last year i have been dizzy more than not it is really affectiong my job my life i cannot do things i love to do we love to go boating wich just is to much now plus towing a 30 ft boat dizzy is really heard my job requires alot of travel and driving wich i have been putting off and now i am having alot of anxiety i just want my life back but i am also so scared of medacine its a no win well thanks for listing to me rant .hope i posted this right

I have specifally been diagnosed with Autoimmune Inner Ear Disease (AIED) and bi-latteral Meniere’s in 2002 about seven years after I first started going to the doctor with complaints. but it doesn’t stop there:
Dyspepia - acid refuls disease
Agorophobia - fear of leaving the house (in this case)
Dyslipidemia - high cholesterol
HTLV II - immunity based blood disorder
Bipolar - extreme mood swings
Manic Depression - again, extreme depression
Post Tramatic Stress Disorder (PTSD) - anxiety about a lot of things because of other things that have happened to me.
Periphal Neuropathy - nerve disorder (in my case it’s mostly my feet and legs)
Pustular Psoraisis - rare form of psoraisis (feet and hands)
Degenerative Disc disease - speakes for its self wouldn’t you say?
Fibromyalgia - Pain - all over continuous pain.

I take a number of meds for these things though most are for the mental stuff and pain management.
When thinking about all of it, I really don’t have a lot to say. My story is sad of course and, actually too depressing to go into great length. Needless to say, I have a lot going on and I don’t think this site has automatic spell check for all that I could write about.

I don’t have any answers for anybody as I’m still trying to figure out stuff on my own. I belong to another site for Meniere’s and talk about many subjects. I know Scott from that site as well as a few others here.

I’m hoping to medically, find out more about my diagnoses’ and what I can do maybe, to get relief. I currently use zanax only for my Meneire’s. For all I know, it could be MAV, who knows with the way doctors diagnose things these days (by the seat of their pants).

I’m hoping to mentally, find people who, like me, suffer from like diseases/disorders and relate to them on a personl level.

Well, that’s about it for me right now. don’t worry, I will get long winded at points along the way… :wink:

Hi everyone,
I joined this forum a few months ago, but I have not posted anything yet. I was diagnosed with MAV September 2010 at the age of 21 after having severe vertigo spells since March of this year… It has been hard to manage this disease as well as all that goes into being a senior in college. I am student teaching and I find it hard to do so because I am getting dizzy all the time. I also have developed pain in my jaw and neck, but I am not sure what that is caused by. It is quite a battle that I am fighting, but I have too much to look forward to to give up. I am looking into more intense treatement besides a strict diet, as it does not seem to be helping. I think the added stress of college life may be playing a factor in this. It is hard to find people who understand what my daily life is really like, so I am looking forward to using this forum for some support and connecting with people who experience the same life that I do.

Age: 54
Female
Date of Diagnosis: 2008

When I learned in 2008 that one could have a migraine without the headache I was incredulous. I had never heard of MAV, and yet I have suffered from this condition most of my life. And at various stages of my life I chalked my symptoms/MAV episodes up to: Hangover, Flu, Food Poisoning, Seasickness, Car sickness, Neck problem/Whiplash, Sensitivity to perfumes/odors, Sleeping improperly with a bad pillow, Strenuous Exercise, etc…

My vertigo episodes come and go, and rarely do I suffer more than 2 or 3 a year. That’s why when one came, hung around for a couple of days, and went away I was perplexed but not debilitated enough to see a doctor about it. I always chalked it up to any of the above. About 20 years ago I did attempt to have my GP diagnose my “dizzies”, and he told me I had benign paroxysmal vertigo. Gave me a real funky drug, cannot recall the name, that I took for awhile but decided was more trouble than the illness so gave it up.

It was only a couple of years ago, as I approached menopause, that my dizzies became more severe, and were accompanied by temple-splitting headaches, that I became concerned.

I went to the Cleveland Clinic Oto Neurology/Vestibular Disorders Program, and Dr. Judith White put me through their tests, diagnosed MAV.

I am not on any preventative medication since I now only get fewer than four of these a year. She said if I started having them more often I should head down to their Headache Clinic. Was prescribed Ativan to sleep through the first couple of days. Have used it once, and it worked nicely, at least for the first couple of days. Dr. White also told me to get a copy of Heal Your Headache and use that to help create a more structured lifestyle.

I must say, as I am now post-menopausal these episodes have become more severe, in that they last longer, at least a week before I feel normal. My greatest fear now is that I will get one and it won’t go away at all.

I quit drinking alcohol last year. I only have one cup of coffee in the morning. I am recovering from a doozy dizzy that began last week so now I am determined to put together a lifestyle that will help me avoid this nasty disorder. My goal is to find some answers for myself in 2011. But I am realistic about the idea that very little can be done about this.

Thanks to this forum, I feel like I now have a place to share this part of my life. I have read many posts, and so appreciate everyone’s participation. Thank you!

Hi I am new here on the forum. BB from Georgia, USA :smiley:
Thank you for inviting me Scott.
I wanted to share something I was told by my new ENT. He said something I did not believe. I have vestibular migraines and not meniere’s. After being told I have meniere’s for past 1 year and 3 months, and after explaining to me why, he wanted me to get the book “Heal Your Headaches” by David Buchholz, MD. Which by the way I have found, is a very good informative book, he says all people have migraines just different severity some with minor to severe pain some without pain at all. I never have headaches or head pain, just the vertigo, dizziness, nausea, and vomiting and ringing and hearing loss, but after or during all this I acquire a headache. I also had tender pina (outer ear) and knots behind ear and sore tender there to touch. I thought an infection.

I did not know you could have migraines without pain, and that migraines would cause all meniere’s symptoms, this has really been a sobering experience with me, because now every time I even feel like I am getting dizzy with vertigo, or high horrible noise in ear, or a heaviness feeling in head, I immediately, take doses of either one of these over the counter medications, 660 mg naproxen, or 800 mg ibuprofen, or 1000 mg acetaminophen and lie down and rest with eyes closed and this controls it, where when I did all the medication before that was to help with symptoms didn’t help immediately I would loose all control and get sick as a dog throwing up down on my knees some times 30 minutes sometimes 1 hour of it :roll:

The author of the book says many people that have been diagnosed with meniere’s, don’t have meniere’s. but have vestibular migraines, I would have never believed it, but when I did what he said it works!! I stay away from the triggers that trigger my feelings I have, which are, aged cheese, balsamic vinegar, chocolate so far. I am still learning all my triggers. I have gone now for 2 months with none of the symptoms that continue, as they have before. They stop at least within 20 to 30 minutes.

ENT said if I cannot continue to control it with the over the counter meds we would try different prescription meds to ward off the migraines that I would only have to take maybe twice a week.

Just thought I would give my experience in case anyone out there might want to try it, or read the book, author says also that hearing loss and ringing can also be damage to nerves within inner ear done by the severe migraines. I would imagine if it doesn’t work it must be meniere’s.

Even my ENT of specialist on meniere’s said he doesn’t know much about meniere’s because it is so illusive!!!. He said you know more about it than I do, because you have all these symptoms that relate to it, and vestibular migraines.
Will keep all informed on my progress.

Hi everyone, my name is Michaela and i´ m 45 years old. I was diagnosed with MAV 3 weeks ago and wanted to get my story down and start participating in the forum. Having now been diagnosed I can draw on memories from the past 40 years that may or may not be related to my condition now.

I suffered with travel sickness as a child as did my mum who also suffered very badly with migraines. Up to the age of around 13 I had episodes of un-explained fainting. In my later teens and twenties I remember isolated attacks of vertigo and dizziness as well as a growing problem with headaches and sinus pain.

Finally in 1995 the ENT surgeon I had been referred to decided that a sinus type operation was worthwhile. In the week following the op, I developed what was subsequently diagnosed as “tension headache,” this completely knocked me for six; I was unable to drive, look at the pc monitor (and therefore work for more than a year.) My head felt foggy and heavy all of the time, the pain seemed to come from the base of my skull and up and around my eyes, I often felt confused and disoriented and moving around was more than often associated with a strange floaty type feeling that would worsen in large stores like supermarkets. I seemed to suffer with more and more severe “norml” headaches as well. Pain killer’s didn´t work and the doctor was at a loss and prescribed “rest.” In the end, after a year of misery I went to see a Mc Timony Chiropractor and after many, many sessions I began to feel a little better and was able to return to work. My husband still says that 1995 was the year that i “changed” and that I have not been the same since.

Over the next couple of years I noticed that I was having more frequent headaches and mild 24/7 dizziness would appear at the time of the month. Whilst pregnant during 1998 and 2000 I suffered with severe all day sickness, foggy head, headaches and a few spinning attacks when getting out of bed. I generally felt unwell and spaced out.
After the birth of my 2nd child, my symptoms became more severe, I was constantly feeling spaced out and often felt disorientated when driving, I found it difficult to concentrate, my head hurt all the time, supermarkets always made me feel worse and it was difficult to tolerate social gatherings. I stopped wanting to go out and felt very isolated whilst struggling with 2 young boys. I also had a number of spinning type attacks. I was diagnosed with post natal depression and panic attacks and prescribed antidepressants. In 2003 we left England in search of a new life in Andalucía, Spain. I stopped taking the antidepressants in 2006.

In 2007 I developed a problem with my jaw, which would intermittently lock open when yawning, cleaning teeth etc. This didn´t really present me with a problem except when it locked almost shut one day and the chronic head pain re-started plus intermittent mild dizziness. I could only open my mouth about 1-2cm, which meant eating was a problem. Eventually I was diagnosed and treated for TMJ.

Then in August 2009 I had a bang to my head, which although didn´t require any treatment did leave me with a very severe headache! A couple of weeks later I got out of bed one morning and I literally fell over back onto the bed as the room was spinning so much. I got up again, confused and fell into the window! I made it to the bathroom by “bouncing off the walls.” I was violently sick and made it back to bed on my hands and knees. I spent 3 days in bed feeling like I was going down with flu (achy limbs but no fever) and was then up and about again.

In the middle of October things really changed for the worse. Again, I woke up one morning feeling very dizzy and sick; I had a very bad headache, felt very disorientated and again those aching limbs. After a couple of days in bed I felt a little better but no way near 100%. One afternoon 2 days later I fainted and was violently sick whilst out with family visiting from UK. From then on I have been plagued with …

24/7 dizzy, floaty feeling the degree of which changes
Feeling of falling sometimes when walking (especially in the dark)
Feeling that the ground is moving when walking
Nausea
Headaches and tension “dull” type chronic pain
Heavy/foggy head
Tired all the time
Fullness in ears
Concentration problems
Disorientation
Confusion
Vertigo attacks
Blurry vision
Tinnitus
Ear Pain (Infrequent)

I went to my GP who prescribed Valium at night and Serc whilst waiting for an appointment with ENT at the hospital. It didn´t work so he changed the medication slightly but still no improvement. The ENT couldn´t find anything, prescribed Dogmatil (Sulpiride) for 3 weeks (which did work quite well but the symptoms returned when I stopped taking them) and referred me onto a Neurologist. The Neurologist arranged a MRI scan (February 2010,) the results, several months later of course, showed nothing.

In March I decided to take an alternative approach as I was virtually housebound being unable to move around much let alone drive; also trying to look at the computer screen became virtually impossible (work at home) as the dizziness and nausea increased to a point where I had to lie down. A Dutch doctor specialising in alternative therapies (Chiropractor, Osteopath, Acupuncture, etc.) was recommended to me in Portugal. I saw him regularly for the next 4 months and spent a fortune on having my spine and neck re-aligned and multiple acupuncture sessions. My husband had to drive me there for the first 3 months and then in June and July I was a little improved and started to resume ´normal´ life. I had 6 fairly good weeks between August and mid-September but then very gradually the symptoms started to return. Acupuncture this time seemed to give little relief and sometimes made me feel worse.

Then at the end of November the weather changed from a prolonged warm autumn to cold wet wintery weather overnight. My symptoms all returned with vengeance. After 2 months of suffering again and no help from the doctor (must be stress he said…) I started to search the symptoms on the internet and found a Meniere’s forum, I thought that the symptoms seemed very similar and read about Neuro-otologists. This was my turning point as I was able to see someone privately here in Huelva. After 2 appointments and 2 hours of tests the conclusion was Migraine Associated Vertigo. What a relief to get a diagnosis. I have been prescribed 10mg Flunarizine at night and have been taking it for just over 2 weeks so early days yet. I hope my story may help others struggling with a varied set of distressing symptoms that baffles their doctors and I hope to see you in the success stories posts soon!

Michaela

Hi
I have recently had a baby 5months ago. About a month ago I started suffering dizziness and was diagnosed with labs. I went to see a balance specialist who disagreed with this and said I had anxiety. I then saw another balance specialist who has said he thinks it is migraine associated vertigo. I have an appointment to see a neurootologist on Monday but currently feel like life is not worth living. Don’t see a way forward.can’t even manage to sleep as anxiety pains in chest are that bad.
Please please please help

Hi, I’m a 37 year old mom of 2, married, on disability because of all of these strange symptoms, which made it impossible to keep a real job… I should first tell you that I do also have panic attacks, but it seems what TRIGGERS them are the following symptoms:
BY the way this has been going on for about 15 years…
feeling like the earth isn’t there below my feet when i step to walk
bouts of slight nausea, only lasting for short time
sudden feelings of dropping, like falling off a cliff
sudden vicious spinning, lasts for about a half second(happens only a couple times a month)then stops
can’t drive due to strange visual things going on(hard to explain)and kind of a feeling of disorientation, feeling of veering too far one way or the other, also the glare kills my eyes…I really miss the freedom of driving myself places and i want that freedom back!!!
also…
sensitive to light, especially fluorescent(they trigger dizziness then anxiety attacks follow, shopping on a bad day isn’t advisable)
eyes feel like they are cloudy
feel like i am on a rocking boat when standing still
feel disconnected from my body, like my head isn’t connected
ringing in both ears, or a strange low hum on occasion
fullness in ears and in my forehead(although i do have sinus issues which doesn’t help any of the other issues)
earaches
can’t sleep with my head flat or will wake up feeling like on a rocking boat

I am just so tired of all of this being blamed on my anxiety disorder or my sinuses…this all started after I had my first daughter in 1995. Maybe something hormonal triggered it?? It has had some times where it is almost 100 gone, but then will sneak back up on me. I feel so cheated! I do have chronic sinus issues, but some of this stuff just doesn’t feel like sinus stuff…please anyone let me know if this sounds like MAV to you. I have recently decided I am not gonna play these games with the dr’s anymore. I want REAL answers! I just want to know if it is Meneiere’s, some other ear or eye/neurological disease or what! Have lost so much of my life because of this…I am right now taking 37.5 of effexor and 0.5 of klonopin for depression and anxiety which has helped some, but the floaty headedness keeps coming back!! If this sounds like what you all are experiencing, I would just like to know…maybe then I won’t feel like such a hypochondriac like they keep trying to tell me and I will get someone to listen to me already!!

Thanks for reading and have a nice day!
Lori

— Begin quote from “Susie”

Hi
I have recently had a baby 5months ago. About a month ago I started suffering dizziness and was diagnosed with labs. I went to see a balance specialist who disagreed with this and said I had anxiety. I then saw another balance specialist who has said he thinks it is migraine associated vertigo. I have an appointment to see a neurootologist on Monday but currently feel like life is not worth living. Don’t see a way forward.can’t even manage to sleep as anxiety pains in chest are that bad.
Please please please help

— End quote

Hi Susie,

I KNOW how you feel…like you, after I had my first daughter a whopping 15, almost 16 years ago, the dizziness started for me. I know for a fact the dizziness triggered my anxiety disorder and not the other way around. I have had many a day where I too feel like life is just not worth living, but it is!!! It is good to hear that you have a dr who thinks it may NOT be anxiety…I haven’t had that much luck yet. If you get on the right meds you will get to feeling much much better. Are you on any medication? Try to get on Effexor! I know a lot of people have not a lot of nice things to say aboutthat medication but for me and some other people I have known, it has helped to make life feel like it’s worth living again.Try asking for Klonopin to help you sleep or Xanax. These are the meds I have had the most luck with…You may still have some off days with the dizziness, but it will get much better. I am babbling…lol…sorry. I just want you to know I have been there, actually I am still there. The worst thing for me is that it has taken away my ability to drive. This makes me very sad, but I know I will be able to again some day. Don’t give up! Positive thoughts floating your way~~~~~~~~ :smiley:

Hi all,
So great to find this forum, what a blessing to have such research and knowledge in one location!!

In April 2009 my dizziness started–two months after the birth of my second son and the week following my lay off from work. I felt like the floor was moving underneath me at times, other times nauseous, lightheaded, dizzy, but no real vertigo. Going to stores made it so much worse. I had tingling in my hands, back and heart palpitations from being so anxious about it all while caring for my newborn and two year old. I was a mess, as I know you can all relate to.

Went to two GPs who thought it was postpartum depression/anxiety but to rule things out referred me to a neurologist and neurotologist who both thought it was migraine (or somatization the neurotologist’s report says) but didn’t do a good job explaining it to me and I didn’t believe that a migraine could make me feel so awful all day, everyday. I have been a headache sufferer since I was a kid, and diagnosed with migraine 10 years ago. But I went with the postpartum depression diagnosis and started Celexa, meeting a therapist, and accupuncture. By this point I truly was depressed and so overly anxious I could barely take care of my babies and cried everyday. Postpartum depression seemed logical to me at the time.

The Celexa worked but it didn’t take away all the “off” feelings that I had. After 10 months on the Celexa and a 20 pound weight gain I asked to slowly wean off the meds. In August 2010 I was off the meds completely and in a few weeks time the dizzies started getting more intense and I’ve had more migraines since then too, needing to take Imitrex several times. I’ve even experienced some true vertigo and oh lord that is horrendous! I tried to ignore it/work through it but I couldn’t and met my therapist again who switched me on Prozac thinking a different med might not cause the weight increase.

Then I pulled out my report from the neurotologist and re-read the conclusions and did a search for migraine and dizziness and found you all. Given that I responded (but not completely) to Celexa, and reading more about migraine here and in the book Heal Your Headache, I’m going to pursue this migraine diagnosis more and return to the neurologist in two weeks. I think I’m feeling improvement on Prozac, but I’ve just been on it now for three weeks and just bumped up to 10 mg 3 days ago as I’m so sensitive to these meds we go slowly. I’ve discovered that Ativan is a real friend right now!

Thank you to everyone for this great community!

Hi everyone, my name is Tom and am a 55 year old physical education teacher that hasn’t been able to teach for over a year now. My symtoms include (included) brain fog, disassociation to my surrounding, dizziness, lightheadedness, loss of balance, light sensitive. My symtoms started in Oct of “09” soon after i received the seasonal flu vaccine. The symtoms were tolerable but very pesty. In Jan. of “10” i had the H1N1 flu vaccine and by the end of the month i could no longer work. I had hearing and balance tests, MRI, MRA, EEG,EKG, and lumbar puncture that all came back negitive. In May of “10” the Mayo clinic diagnosised me with Chronic Subjective Dizziness possibly due to A-Typical migraines, meaning i don’t get the headache. Through the month of June I saw improvement doing the Vestibular rehab and the medication zoloft. During the 4th of july i “crashed” and have gone down hill ever since. The zoloft was increased and still no improvement. For the last several months i have been on 100 mg of topiramate and 75 mg of Venlafaxine with no possitive results. Currently i have weaned myself off of the topiramate and working on getting off of the venlafaxine. (my experience is that venalafaxine is one nasty drug to eliminate) Getting off of the meds has helped me “feel” better physically but still suffer from dizziness and imbalance. The symtoms are with me or just under the surface 24/7. Most of the time i am pretty good sitting down but walking faster than my comfort zone allows (comfort zone varies from hour to hour—from a slow walk at best to baby steps at the worst) my vision jumps all over, like my eyes were attatched to springs and would vibrate with each movement causing me to lose balance. Any close work such as reading or doing small tasks which involve close eye hand cordination will bring the symtoms on very quickly. (please excuse my spelling and typing mistakes for that reason) Morning seems to be the best time for me but by evening i am doing “baby steps” to get into bed. After i was at the Mayo clinic i did try to eliminate possible triggers by eliminating certain foods and drinks such as caffine, however, after months of no improvement i relasped as far as the caffine and diet went. Having read some of your posts I guess it is time to jump back onto the “mirgraine diet” again. In April i am seeing another doctor and plan to be off of all the meds and start from square one again. If anyone has any comments or suggestions they would be appreciated. Hang in there everybody!!

Hello everyone, My name is Anne and live in Denmark, West Jutland. I have wanted to write my story for quite some time, but I wanted to wait until I was completely dizzyfree – so I could post my story under success stories. Compared to many other stories on this board, I think I have been ok lucky so far.

It all started in May 2010. I was out shopping after work one friday evening and suddenly I felt like I was about to faint. The ground was moving and it felt like all blood was leaving my head. I thought i just needed some fluid or sugar – even though I never have fainted before. Over the next few days these episodes kept coming especially when I was i supermarkets or so. The next monday at work it all came crashing down. I got more and more dizzy during the day – and at lunch time I had to hold on to a table so I wouldn’t fall to the floor. I went to the doctor straight away – and they sent me home just to see if it would pass over by itself. I have prior had neuritis vestibularis (A virus on the balance nerve) but this time it was very different and much much worse. (looking back my two cases of neuritis vestibularis – might also have been a very mild form of MAV). After a few weeks the doctor sent me to a chiropractor – since I’m a graphic designer – and work a lot in front of a computer – they thought the dizziness might came from my neck and shoulders. After a couple of months and a visit to the ear specialist doctor – who told me that I was imagining the dizziness – even though i was swaying like grass in the wind in front of him – and I were sure it wasn’t stress related either – I got my doctor to write a recommendation to see a neurologist for a head scan.

During these couple of months I was doing pretty bad. I could hardly work. It felt constantly like somebody was trying to pull me of the chair or was trying to push me of the sofa when I was lying down. It all got worse with head movement. I had a lot of trouble with noises. For example when somebody laid a knife on a plate it sounded very loud in my head. I had tinnitus on my right ear and sometimes I lost my hearing on this ear for a few seconds. I had big trouble with places with many people and all kind of shops. I had problems with things moving fast in front of my eyes and bright light. Sometimes my heart ran very fast. But I found one place that gave me peace. When I was driving in a car it almost all went away. I had problems telling people about this at first – cause the doctors had already been trying to tell me, that it was all in my head.

Luckily I have an extra health insurance at my work – so with the doctor recommendation in my hand I was free to see any doctor in Denmark. During the two first months I had done a lot of googling to find answers to my dizziness. And I knew there were one doctor to see in Denmark. He’s name is Søren Vesterhauge and is working at a private hospital called Hamlet in Copenhagen. I went to see him in the middle of july 2010. I went through all kinds of test and afterwards had a good long talk with Søren. He asked me if anyone in my family had migraine – and I answered that my mother probably did. At the end he gave me a sheet of paper with a migraine diet on it and asked me to come see him again in two months time. I went home feeling very bad. He was the only one left i Denmark to tell me what was wrong with me – and to talk about migraine – he had to be crazy – I have never had a migraine headache. As soon as I got home I went on Google – and now I suddenly got hits for my search on dizzy+migraine. Prior I had been searching on dizziness alone and could’t find anything similar to what I was experiencing. But now I got a lot of hits mostly from this forum where i could read about others that had no problems when driving – and for the first time it all maked sense.

I went on the diet and when I was going back to the doctor a few months later I actually felt a little bit better. I found out that fresh air and exercising was really god for the dizziness. I also found out, that too much exercising was not so good. It gave me my first real headache migraine. The doctor and I agreed, to try out the diet a little longer to see if it would help even more. Sadly enough I got worse. Especially when working I had a very hard time sitting in front of a computer monitor for a whole day. So I gave up and called my doctor. He put me on Nortriptyline starting at 10 mg increasing 10 mg every 14 days. I had no side effects and when I reached a 100 mg it had taking the top of the dizziness. 14 days ago I went to see my doctor again. We agreed to go up to 150 mg. Since I was not having any side effects, he thought it was sign that my body were not taking in the full amount of the dose. I am now on 125 mg and nothing is changed.

I am almost dizzifree on weekends. I have no longer great problems when shopping. Some days are much better than others. I feel dizzifree when driving and swimming. I have no longer problems with noises and bright light. I had troubles when getting my period earlier but now it seems that magnesium has helped me a lot with that. I still have tinnitus on my right ear – but it is very little and I can only hear it when it’s completely quit at night and I have no problem sleeping. My only big problem is still every day in front of the computer. I have tried anything from anti glare sheets to less light and so on. I have no problem with watching television or using my laptop at home. But as my doctor says – you can not make a living of not working – so we are going keep trying until we find a solution. I have recently started up my social life again. Now I can overcome doing trips og having visits in the weekend – which I could’t overcome the last half year. This has been one of the worst things with this illness – besides from being very much alone. The people around me have been very understanding – but it must be hard for them to understand, when you don’t look ill at all. It’s the psychological side of it that is very hard. Other times when I have been ill it’s just about the pain, and you know that it will end some day. MAV is in your head all day every day and you have no idea what the next day will bring and when it’s going to stop. It’s also been hard since no body in Denmark seems to have heard anything about (MAV) My doctor told me, there is no chance to find a doctor – besides him – in Denmark.

I’m just gratefull that it only took a few months to find – what it seems – the right diagnose. Compared with may others on this forum.

Please let me know if anybody have a solution for the computer monitor issue :slight_smile: and thank you all for this fantastic site.