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#1

Hi All

Just wanted to invite everyone to post their story here.

You might want to include such things as (where applicable):

  • How your condition started
  • Any precursors that might have been related (ie. a lot of those with MAV had motion sickness as a child, some like myself had cyclic vomiting syndrome).
  • Where and when you were diagnosed
  • Other diagnoses that you have had
  • How you are treating your condition
  • What has worked for you and what you might recommend other people try

Regards
Adam


#2

Thank you Adam for this forum.!
I am 47 years old and had always had migraines during periods. I also slept walked a lot as a child and had terrible motion sickness. However I did not become chronically sick iuntil my hysterectomy five years ago. About a year after that I began to feel lightheaded alot. That progressed to full blown spinning and vertigo that occurred for hours and hours daily for several years. Rounds of doctors could not identify my problem. I had left sided weakness and tingling sensations and shimmery vision but no head pain. None of the doctors I saw mentioned migraine as the problem, I was told that I had an anxiety disorder. This led to me taking ativan daily, which took a little edge off but did nothing to stop the vertigo. I pursued testing of my inner ear, all of which came out normal.
Finally I went to a chiropractor who told me he believed I had a migraine problem. His pain specialist who “claimed to be a headache expert” started me on imitrex. The very first one was like a miracle for me. It lessened the vertigo dramatiically. Not knowing anything about rebound or the danger of taking too much imitrex or ANY for that matter with basilar migraine, I wound up taking it daily sometimes twice daily. By now I was in deep trouble from this but completely clueless. I began having chest pain from all the constriction the imitrex was causing and wound up in the hospital having all sorts of heart related tests. The doctors there were appalled that I had been taking that amount of imitrex. I had to stop it cold turkey in the hospital and I quickly became seriously ill. I had fainting and collapsing episodes and stroke life manifestations. My speech was gone for several weeks. They started me on IV depakote. I was in the hospital for several weeeks. When I came out, I was still extremely ill. The vertigo came back even stronger, and I told my husband I had lost all courage and strength to fight. I planned to turn on my car in the garage and just go to sleep. By now I was having severe head pain also.
He then arranged for me to go the Michigan Head Pain and Neurological Institute in Ann Arbor Michigan at the advice of my neurologist.
These incredible people saved my life. They diagnosed me with basilar migraine and began my treatment. I was in their hospital two weeks. They found that my estrogen level was BELOW menopause levels, which they believed was the main reason for my migarine problem.( Very low hormone levels can produce vertigo and as in my case lots of it)
I had been taking estrogen after my hysterectomy however, my brain had abosrbed NONE of it. I remember practically begging my gynecologist to test my levels. He kept saying it was not necessary, that they simply went by my symptoms. I have now learned that the reason they don’t perform the hormone test routinely is because the insurance companies throw huge fits and refuse to cover it. It is an $800.00 test. The doctors in Michigan said that women may have to try many differnt forms of estrogen before they find one that is compatible for them. They recommended that I see a gynecologist-endocrinologist (a Dr. who specializes in women’s hormones) which I have done. He tested my hormones every three weeks for six months until my level was at the appropriate place! (The insurance companies don’t fight them because that is what they do! They deal with and test hormones!) When I went to Michigan my estriol level was 20. It is now 120! I have learned that estrogen is a precursor to serotonin and other brain chemicals. If you don’t have the right amount of estrogen, you won’t have the correct brain chemistry either.
None of this would have happened if my gynecologist would have tested my estrogen levels. Instead I just complied like good patients do. I tell my story in hopes that it can help someone like me who had predispostion for migraine variant, but that becomes worse due to menopause or hysterectomy. Actually I think ANYONE could benefit from seeing an endocrinologist. Mine certainly understood the connection between hormones and vertigo.
I would be more than glad to talk with anyone any time. Just email me. I am now without major symptoms or episodes. However I have chronic daily headache. I currently take elavil, lexapro, zonegran, zanaflex, magnesium, daily aspirin and co Q 10. To be free form the vertigo is the greatest gift I have been given through all of this.
Vertigo brought me to my knees, however I believe God has used this lowest point imy life for incredible good. I believe this also for each of you. Hang on because there is an answer for each of us. NEVER give up!
gayla


#3

I wanted to thank Adam for this most needed forum. As a child I can’t remember having any dizziness or motion sickness.
I never even had so much as a headache. When I got into my 30’s I had a bout with dizziness which lasted a week and went away. I have had some anxiety which would flare up but then leave. Durning those flare ups I would get dizzy in stores and have to leave but once I was out, I wasn’t dizzy. I had a long period of being fine and worked and went shopping without any problems.

When I was around 46 I startd to have fatigue problems and some dizziness when trying to scan store shelves. I lived with it. I started to notice that when I would workout on the treadmill it would make me very dizzy. This was the start of all hell breaking lose. One morning I woke up and was down stairs watching tv before work and I felt like I was going to pass out. I called 911 and was take to the er. I had this sensation in my neck and base of my skull that felt like throbbing without the pain. I had no spinning vertigo and the Drs were stumped. I was given meds through IV’s and walked out. I was still off a bit and noticed that walking made me worse.

I could not work and I stayed home trying to get better. Another attack hit me a mo or so later and it was bad. Same feelings as before and throw in some panic for good measure and I was really sick. I ended up in the hospital for 4 days. This time I was so nauseated I couldn’t eat. I ended up back in the hospital in Chicago this time for 5 days while tests were run. Nothing showed up. I came home really depressed and full of panic not knowing what I had.

I was put on Elavil and it made my panic worse so I stopped. The only thing that helped was ativan but it was not good enough to get me back to work. I went on for a few mo. with my life at a stand still and ended up so depressed I ended up in the psy ward for 10 days. I was so bad from the dizziness the staff thought I was withdrawing from street drugs, that made me feel at my lowest. Here I was this mother and wife who worked out every day, helped in the church, in a psy ward, most of my time there was spent crying. I lost 25 pounds and could not eat but small amounts. I ended up leaving there to go home with no dx. I learned to cope and just quit going to the Drs.

I am now 49 and have started up again with trying to get myself well. In the early days of this A Dr Battista thought I had mav. It was hard to believe but I kept thinking about the throbbing without pain at the base of my skull and thought he may be right. I did’nt have any ear symptoms when all this started, but have now notice that I have a light hissing in both ears. My right ear now vibrates with low sounds such as a man speaking or base sounds. My left ear aways had alittle less hearing but not much to even notice, tests showed this a few years ago.

I have had some base of the skull icepick pain but not to often. Maybe a dozen times since I first got sick. The one thing that has convinced me its mav, is I had one aura of a pattern, one morning, not to long ago. I get the pressure in my head which I believe is blood vessels. I am biting the bullet and starting topamax I cannot take this life anymore and have to try.
I am med sensitive but thought I would go real slow. Well thats where I am now and I’m hopping for some relief. I feel like my ears have been damage to some degree with all this. I do have a family history of migraine as my mother suffered for 8 mo with them. She has not had any problems since then, seems weird to me that they came and went never to return.

I have my good days and bad. Late morning I feel not to bad and when night time rolls around I get worse. I have a hard time when I see others living their lives and I’m at a standstill, many days I fight the tears but try not to go there. I feel like I’m in a never ending hangover. I am going to go to psysical therapy for my 2 herniations in my neck soon. I wanted to believe this was my problem and a surgery would take it away. From my reading I found cervical dizziness without whiplash is rare. So I must go the route of mav, scared to take the meds because of the side effects but it could help. Maybe one day I will be back to some what normal again, its hard to believe but I have to have some hope.

Charisse


#4

Thanks everyone for posting your story so far. Time for me to post my long-winded one!

When I was very young, starting at about 5 years of age I would often be playing with my friends
when I would suddenly be overcome by extreme nausea. I would then usually vomit and sleep for a few hours
and then feel better. At the time, noone was particularly worried about it (or interested in it) so we just
thought it would pass. It started getting a little worse to the point where I was waking up at night about once
a month and vomiting for a few hours before going back to sleep. I never had any headaches at this stage.
Noone knew what to make of it, but life went on.

Shortly thereafter, I had my first episode of vertigo. It was very violent and I had no idea what was happening
to me. I remember not knowing up from down and being totally incapacitated (having to be carried). I would spend
the next few days in bed with the lights off and windows covered and vomit profusely. The vertigo would continue
for about 48-72 hours at which time I’d start to emerge from bed and it would take me a few days before I felt completely
normal again. Again, no real headache, but during the vertigo any (even slight) movement of the head made
me feel like I was falling and I’d be vomiting again.

I had a pretty good run in junior high school. No real problems except one episode (my first) of migraine with aura. My vision
went cloudy in my left eye and eventually I was not able to see in that eye. I felt sick and vomited for a few hours but was
normal again the following day.

Interestingly, all of my vertigo episodes were almost an exact multiple of 6 months apart - these episodes would come like
clockwork. If I passed the 6 month mark without another episode I knew I’d be in for one at 12 months instead. This has been
described before in the literature on benign recurrent vertigo (which is a migraine syndrome). Also, about 80% of my episodes
were precipitated by fast-moving video games. Often after a few hours of playing them I would start to “lose sync” and could
no longer follow what was on the screen. I’d feel fine until about 12-24 hours later when the violent episodes of room spinning
vertigo would start. The attack of migraine with aura was also precipitated by a video game, so I suspect these episodes
were visual-stimulation induced migraine with vertigo. Hence, I don’t believe the visual stimulation caused vertigo as such, but
caused an episode of migraine - which in turn caused the vertigo. This is not common, but has been described before. Visual stimulation
is still a trigger for major episodes of true vertigo for me so I avoid it wherever possible. I also take 0.5mg Pizotifen daily which I believe
has also assisted with preventing these recurring episodes.

Fast forward to 17 years of age - still undiagnosed but not having too many problems - had a severe episode of vertigo
a few months earlier while at school. This was particularly violent and I became quite ataxic (unable to walk, clumsy, in-coordinated). I
had to be taken to the school nurse in a wheelchair. This resolved within a few days. A few months thereafter, close to my 18th birthday
I woke up dizzy. I had never experienced this sort of non-specific dizziness before - it didn’t feel like vertigo. I didn’t worry about it
too much and thought it’d be gone in a few days. 7 years later, the dizziness is still with me and has been every day. Overnight,
I also developed the visual symptoms many of us with MAV describe - incoordination between the eyes, black lines and dots that
float in the visual field, and flashing lights especially when blinking. I was very distressed by this and it has really taken its toll on my life
but I felt more able to handle it when I was finally diagnosed with “migraine without headache” by Dr GM Halmagyi in Sydney, Australia.

Pizotifen has helped me somewhat, and in the last few years I have trialled a number of migraine preventatives. I have had a terrible
time tolerating them - one in particular was Flunarizine which put me in bed for 5 weeks with the worst vomiting, nausea, diarrhea
and abdominal pain I had ever experienced in my lifetime. This drug has a particularly long half-life (19 days) and if you do have serious
side effects from it, they take a long time to resolve. I was pretty sure I was going to die - I had already lost 13kg (30lb) from my already
insignificant weight in those 5 weeks having not eaten at all. I also had bizarre neurological problems emerging such as constant rythmic twitching
of muscles in my arms, legs and eyelids. I also felt confused - this is interesting because the aura I always had before my vertigo episodes
(which lasted about 1-2 minutes) was one of being dazed and confused.

These days, I am probably as dizzy as I ever have been, and also suffer daily nausea, diarrhea and dizziness. I have not had an epsiode
of episodic true vertigo for quite some time, however. The nausea does make me vomit on some days which is problematic as I have to struggle
to maintain an adequate body weight.

Having read huge amounts on these conditions, I suspect I do suffer from a migraine variant - perhaps one very similar to those
which are described by Dr Baloh and others - calcium channelopathies. These are gene mutations that result in incorrectly functioning
brain and inner ear calcium channels. I have not yet tried the gold standard of treatment for these conditions yet - Acetazolamide (Diamox).
Much is happening in this area, however, and I am very sure that in the next 10 years the amount they know about these bizarre forms
of migraine will be staggering.


#5

I have had a problem with headaches as far back as I can remember. (The age of three or four.) I have also had a problem with motion intolerance since about the same time. I remember in elementary school, watching all of the other kids do summersault after summersault with no problems, and being amazed. I would do one, and have to stop to let the room quit moving.

Later on in life, teens to earlier twenties, I started to pick up some positional problems as well. I couldn’t do pushups, or lay on a workout bench with my head hanging off of the end. This problem has gotten progressively worse with age to the point that I can no longer lay on my back on the floor.

Then about six years ago, my wife went into labor two months early with our oldest child. The stress level in my life was extremely high then as the doctor did everything they could to keep her from giving birth. About that time I noticed that occasionally the phone would sound weird, and I just figured it was the phone company having problems with their lines. Then one day I had to move the phone to my other ear and discovered it was me. About the same time I made this discovery, I started to get a sound in my ear much like a seashell, but louder, and it continued to get louder over the next week or two. The came the fullness, and the hearing loss. I could no longer hear the wind in my bad ear, and I felt low pitch noises instead of hearing them.

The doctor I was seeing then was baffled. He tried steriods and antibiotics with no success and then sent me to a specialists. The ENT ran a hearing test and gave me a diagnoses of meniere’s based solely from the hearing test and the description of my symptoms. At that point I never had any vertigo, so I was a little confused.

The vertigo started a few weeks later, and it was a rocking sensation, or falling, not rotational. Again it didn’t match up with meniere’s but the ENT was dead set that was what I had and treated me as such. After four years, my balance started to get very bad, and I fell A LOT, sometimes with warning, sometimes without. The ENT wanted to do surgery, but things just weren’t matching up well enough for me to let him do surgery.

I started doctor shopping until I found one that would listen to me, and he agreed that the ENT was jumping the gun. He sent me to the local university for testing that was never done but should have been. The specialist I saw down there told me flat out that I did not have meniere’s and that the surgeries the ENT was recomending could make matters worse. He didn’t know what I did have, so my primary care doctor sent me to a different specialist. She was very thorough in talking with me, and was almost convinced that I have MAV instead of meniere’s.

Now my doctor and I are playing around with the meds in search of one that won’t kick my a** with side effects, but help me out with the balance and vertigo problems. I have tried three meds in the Tapomax family and only depakote doesn’t make me miserable with side effects. The nuerologist that I saw told me that the only way to properly test/diagnose MAV is to treat the symptoms as such, and if they work then it is MAV. If they don’t work then keep looking. Well, the depakote seems to be working so she must have been right.


#6

I’m new to this forum and i’m so glad i have found it!! I’m 31 yrs old and as far as I can remember I have suffered from motion sickness and since probably around the age of 16 I have suffered from daily headaches. When I was 22 I began having debilitating migraines, extremely light sensitive, noise sensitive, vomiting and passing out from the intense pain. The only thing that has ever worked for the pain is to go to the emergency room to get a shot of narcotics. Anyway thought maybe a chiropractor could help me so in 1999 I went for an adjustment and 5 hours later I had extreme vertigo which lasted for around 6 weeks. Went to an ENT who ruled out ear complications. Since that time I have been to numerous neurologists who all seem to have differing opinions or no opinion at all of what is wrong with me. I’ve even been to Mayo in Rochester and I guess they kinda said it was MAV. Since the first vertigo attack I had several more until finally I pretty much have vertigo at some level all of the time now. I have taken so many OTC’s for the headaches along with prescriptions and narcotics that in the past I have had rebound headaches so now have to be very careful about what I take and how much and when and it still doesn’t work but I keep on trying just praying that one of these times the pills are going to get rid of the pain. Since March of last year I cannot remember having a pain free day and feeling normal. My neuro here has diagnosed me with MAV but also said he has done everything he can to get rid of the headaches, that they are just too complicated for him and he suggested me going to Diamond Headache Clinic in Chicago. Now that I have no job and no insurance as my cobra has expired I cannot afford a 7-10 day hospital stay :frowning: I’ve also ben taking topamax for a little over a year, who knows maybe it lessens the pain some but now I find out from the state they aren’t going to pay anymore so i won’t be able to continue taking this anymore. I’m sorry to vent like this but I’m exhausted, physically, emotionally, mentally. I have no one here who even tries to understand and just feeling extremely alone and really tired of this sickness and don’t know what to do anymore. I have alot of faith in God but I still have my bad days and I pray for all of my MAV brothers and sisters out there that you find some way to overcome this sickness. If anyone out there ever needs a shoulder to cry on or just wanna chat and compare stories pls feel free to contact me. I promise I’m not always on this pity party i’m on today, just one of those really bad days where i feel like it’s never going to get better. God bless you all and i pray for your health to get better each and every day.
vertigo_princess


#7

Hi Everyone,

I’ve been struggling for almost two years and its a relief to find this website today. I would love to hear from anyone about whether this sounds familiar as at the moment I feel like I am the only one in the world with this weird illness.

It started about two years ago. I had a minor head injury but wasn’t knocked out and a few weeks later started to develop symptoms. I began feeling spaced out, dizzy, unbalanced when walking and it was frightening. I noticed that being in busy places or looking at moving objects triggered the dizziness - sometimes even having a conversation with someone and watching their face would do it. I would get dizzy, nauseated, and feel disoriented and unable to think. I also noticed that my vision was not clear like it had been before, particularly when moving. My eyes felt different, tired, like they were moving more slowly and like it took alot of effort to keep them still and focussed on something. By the end of a day at work I would have sore eyes. I also developed tinnitus around this time and my hearing on the left seemed slightly less sharp.

I have had headaches all my life but have never considered myself a migraine sufferer. I get throbbing headaches on one side though. On a small number of occasions, I have had episodes of unexplained nausea and vomiting and, come to think of it, probably vertigo, and always put it down to food poisoning or something like that.

I have seem lots of specialists. I have had all the balance tests numerous times and on a couple of occasions my caloric on the left has been down 30%. I also have a very small high frequency hearing loss on the left. Some doctors believe I have an inner ear problem and treated my with steroids orally and injected into the inner ear. This helped once but not the second time. Others have suggested migraine which at first I was reluctant to believe. However now that this has been going on and on and on I will try anything to get relief. My neurologist has put me on Prinivil which is supposed to be a migraine preventative. I have been taking it for 2 months with no relief. Now they are talking about Topamax or Lamictal but I really want to avoid anything that makes you drowsy as I already have enough problems with concentration.

I would love to hear anyone’s comments or recommendations about what medication might help because I want my life back!

Bye for now.


#8

Hi Everyone:

Just discovered this forum - it’s Fantastic, very much appreciated, and oh so necessary!! Thank you!!!

Here’s my story -

In my early 20"s (I’m 40 now), I was diagnosed as having panic attacks. After many Dr.'s, and many tests I finally took my neurologists advice and saw a psychiatrist. He referred me to a cardiologist after hearing that I had a heart murmur. Anyway, the cardiologist diagnosed me with Mitral valve prolapse (very innocent, common condition). The psychiatrist (who I really liked, even though I didn’t feel I needed to be there) prescribed Inderal (beta-blocker), saying “give it a try, it may be all you need to kick these panic attacks”. Anyway, it did. I was on Inderal for approx. a year and a half. My panick attacks disappeared and until recently, I always thought it was it was more of a placebo effect, but it didn’t matter.

Then about 3 years ago, out of the blue I experienced a terrifying vision problem. I was reading, and noticed there were blank spots in my vision, then it changed to this “zig-zag” pattern moving across my field of vision. I was so scared!!! By the time I got to the ER, it had cleared up completely. The ER doc told me it was probably due to a combination of taking Sudafed (for my sinus problems), caffeine, and cigarettes. I went home that day extremely exhausted - quite the same way I used to feel after a panic attack.

I didn’t have any more problems like that until around this past Christmas. I had a serious case of bronchitis and was down for about a week, it cleared up, no problem. One week after that, out of nowhere, I had the very same vision problem again. Once again, it only lasted for about 20 minutes, and cleared up, but I was very, very, scared. My sister said she thought maybe it could be migraines, because I have 2 sisters who have been diagnosed with them, both started right around 40 years old, however, neither have had migraine with aura.

Within the next couple of weeks, I started having short dizzy spells. Very intense, but very short. I kept thinking I was probably coming down with an ear infection. My family doctor didn’t find any evidence of infection, and said it was probably my sinus problems causing my eustachian to become blocked. She gave me a nasal steroid, and a decongestant. I ended up back in her office 3 times in the next week and a half, because my dizziness was getting worse, and becoming constant. She did an ekg, and some blood tests - all were normal. She said I must be coming down with viral labyrinthitus, and just wait it out. Wait it out I did, in fact I still am waiting it out. (During one trip to the ER they did a CT scan (normal), and sent me home with meclizine for the dizziness and told me to go see an ENT.

I went to see an ENT about 2 weeks ago. They did a hearing test, it was normal also. They scheduled me for an ENG test, which I called and cancelled. I just didn’t want them putting water in my ears and making me any dizzier than I already was. Besides, from what I was reading about Labs on other forums, the ENG test was not a really very reliable test. (I don’t know if thats true, maybe I was just afraid of being told I have Menieres. I didn’t really care for the Doctor either. )

Anyway, here I am. I don’t know what I have. I can relate to just about all of the Labs symptoms, including this dizziness that just won’t go away. It’s strange, but all the doctors I have seen say that Labs should clear up in 6-8 weeks, but it seems not always for many people.

I can’t help but think my panic attack problem many years ago, was maybe actually migraine-related. I responded beautifully when I took the Inderal, and come to find out, I think its prescribed for MAV. Anybody have any insight?
I’m so tired of being dizzy. I’m a single Mom and I really have to get back to work, I’ve been off work for weeks now, but I just can’t seem to shake this never-ending dizziness.


#9

hi azdizzy, I was diagnosed with menieres about 6 months ago and then later told i didn’t have it because my hearing tests were normal. My doctor told me to go back to him if i started getting sick again. I was dizzy for months, my attacks were on and off for seven months, at first i was told it was viral lab and then i had all different tests done, they always came back negative. I decided to figure out what was triggering my attacks on my own and discovered that coffee is a big problem for me, by taking caffeine completely out of my diet I stopped having attacks, I also stopped drinking soda, which caused attacks instantly. Later i discovered that aspartame is bad for some people with migraines. I was so scared of what was happening to me because i would be literally on the ground crawling to the bathroom so sick and pale and the whole world would be spinning, it would happen so fast. I had a lot problems with my left ear also. None of my doctors mentioned migraines. I discovered i was most likely suffering from mav because i found that menieres is similar to mav. I’ve suffered from migraines since i was young. My advice is to watch your diet, see if certain things are making you sick and cut back or eliminate them. I still get attacks but not very many. Make sure you get regular amount of sleep and don’t panic when you get sick it makes it worse, stay calm. As far as meds I wouldn’t know. But i would go see a neurologist or neurotologist and mention migraines, see if you can get diagnosed. I haven’t been diagnosed yet but i know that if i get worse again, i’m going back to the doctor.


#10

I have SO many of the same symptoms of all of you.

-Been mild to moderately dizzy and have had violent vertigo with drop attacks since 1999 when I fell in a Target parking lot after being sick with a cold on a flight back from Germany. I just figured the cold and the flight had made me dizzy.
-The attacks put me out of commision for between 2 and 21 days at a time monthly where I can’t move my head, can’t walk without holding onto walls, sleep constantly, can’t even watch tv, can barely read, etc.
-Full, itchy ears that feel wet in my case. Drives me crazy at times.
-Sensitive to visual and audiable things like loud noises, shopping at Walmart, driving, bending over to load dishwasher, tilting head in the shower, watching movies and tv shows when they jerk around, etc.

Now for the story… I’ve lived in 14 places in the past 16 years I’ve been married. My husband is in the military and I’ve had countless numbers of doctors see me dizzy once before either they move or we move onto another duty station. They all wrote me scrips for meclazine and told me to sleep it off. Well, this time I wouldn’t let that happen. I’d spent three weeks dizzy in bed and had had 2 hour long drop attacks that literally scared the crud out of me. We were going to be stationed somewhere long enough to hopefully see the same doctor, so I didn’t take my scrips of Meclazine and Allegra this time without being sent to a specialist.

Fast forward a month. Up until this week my ENT who specializes in vestibular disorders and I thought I was in the process of being diagnosed with Meniere’s Disease or at least atypical Meniere’s… as I told the doc I didn’t think I had hearing loss at all and I had no constant tinnutis.

But, after my hearing tests (audiogram and EcOG) were negative, my MRI was negative, my million blood tests were negative, I went back to my NEW GP this afternoon. (Mind you, this was not the same gp that sent me for the inital tests as he was transferred to Italy last week.)

But, I digress.

So, I go to see my new GP to get my bloodtest results that the old GP and ENT both ordered. I give him a brief rundown of my symptoms and that my ENT is thinking I might have atypical Meniere’s. He quickly shoots that down, tells me that he thinks I have migrane headaches. :?:

In my head, I’m doubting him very much. I even told him “Look, I only have sinus headaches every once in a while. Why do I still get dizzy with no headache? Why can’t I shop in walmart and not get sick from the visuals and the noise? Why does bending over to load the dishwasher set me off with what I call the mild dizzies? Why do I get the violent drop attacks that leave me breathless and scared to death with eye movements? And ear noises? And fullness in my ears?”

Evidently I had wasted his time or either he felt like he would waste his time explaining it to me. He said just a little more than he thought I had migranes and that I should just talk to my ENT about the fact that I didn’t have hearing loss, but that was it.

I promised him that I would and walked out of his office convinced that he was an idiot! …Then I got online and figured out that he JUST MIGHT BE RIGHT! He didn’t explain WHY he might be right like a respectable doctor should have, but it doesn’t change the fact that he might be right!

So, almost two weeks ago I started reading a Meniere’s forum which sounded SO much like me… except for the fact that I don’t have hearing loss! Now I find myself here, bc I’m not sure I have Meniere’s. Now that I’ve read about MAV as well as Meniere’s, I’m anxiously awaiting to talk to my ENT about both tomorrow. I’ll keep you posted on what he says!

I’m sure I left stuff out, but I think you get the general idea of my history from this. I’ll be a LOT happier whenever I figure out what it is that I have!!!


#11

Aloha Everyone!!

I google “migraine Associated Vertigo” every once in a while hoping I would stmble across some type of support group. I don’t know why I never came here. As I was reading some of the post, I began to cry…FINALLY some people who I can relate to. I would like to tell you my story.

In 1998 (it’s a LONG story!), I woke up in the middle of the night (at about 2am) with a HORRIBLE spinning episode. It lasted for about 4 hours. I Thought I was having a stroke because nothing like that ever happened to me. I couldn’t even move to the other side of my bed to reach the phone, I thought I was going to die. I ended up puking over the side of my bed on my carpet (it was old carpet thank goodness!) for 4 hours. I worked as a medical asst. at an urgent care clinic at the time and I went in to work at 1pm, feeling really like off kilter, the only way to describe it was it seemed like everything was on a delay. (Hard to explain!) I was (as well as my co workers) we trying to explain it, everything from my blood pressure droping to spiking, to my electrolytes were off to Meniere’s tgo hypoglycemia. I felt like that for several hours but after that day, I was good.

My next episode was about a year later, then six months later for a couple of time, then three months later for a few times. Then the episodes were a month apart, then weekly (mind you this whole time it would only occur in the middle of the night). I finally broke down and told my parents what I had been going through. They wanted to know when it happened so they could take me to the ER (thinking if I arrived in the middle of the spell, it would be easier to diagnose…(yeah…RIGHT!). Went to the ER finally and the dr said it was Labrynthitis. This was my worst episode yet and it had lasted 6 hours of complete Vertigo. I had no equilibrium whatsoever! When the Dr told me that, he told me what had happened that day and I told him that I had a migraine earlier in the evening and I had taken an Excedrin Migraine. I asked him if they might be related, he said that he didn’t think so (this was in 2001). Shortly after, I was getting woken up in the middle of the night every other day, calling in sick from work. I was at a point where I was afraid to go to sleep…so sleep deprived, crying at work 'cuz I was so exhausted!

(2001) I finally started going to the doctor to see what they could do. I started with my PCP and she ordered an MRI, MRV (I think), prescribed me Meclizine and Phenergran. I brought up Migraines again but no luck. The Mec seemed to work. Of course the MRI and MRV (?) came back negative and again, she dx’d me with an ear problem. Then, I went to an Ear Specialist but I didn’t get the test done I think because it wouldn’t be covered by insurance (i’m not really sure why I didn’t - I think I thought he Mec was working and I thought it cured me.). At this time, I had one episode sitting on the couch…my only other episode while upright was in 2004 (i think).

(2002) It had been a year and I had no spells. At this point, I was living with my parents because I was moving from Denver to Hawaii with my then boyfriend (now hubby!). One morning I woke up spinning. My parents were in Europe so no one what at the house with me. I ended up having to crawl to the bathroom, and at that point, I had things coming out of me from both sides (too much info??). The doctor increased my dosage and everything was fine.

We moved to Hawaii and I may have had one or two episodes between Oct. 2002(when we moved and got married) and Jan. (2003). Then…SURPRISE…WE’RE PREGNANT! I had no episodes from January 03 until July 03. Then, all the sudden they came back. The OB’s thought it was relate4d to the pressure of being so big (I was huge) preg induced Hypertension. Of course I was an emotional wreck being 8 months (pretty much 9 months)pregnant and having these episodes returning in my life! It was to a point where i would wake up my hubby, he would lead me to the bathroom and he would have me lay in the bathtub with the lights out and him falling asleep on the toilet.

(2004) Started going to doctors here in HI went to one and basically shrugged his shoulders and said, “I don’t know, let me give you some Valium”. I can’t be a mom of a toddler on Valium so, I rarely took it. I then went to another General Practitioner and she told me that I was wasting my time because I had every test done and nothing has come of it. She gave me a brochure of Benign Paraximal Vertigo (that I had already read) and told me good luck. I left her office crying. I then went to the Balance Center of the Pacific hoping…praying they would tell me something new. I had positional tests done. They wanted me to come back for additional tests. One test invoved wearing these wierd looking goggles and following a dot on a wall. The other test involved some different goggles with a camera focused on my eyes, the “specialist” then had me lie down and proceeeded to blow hi pressure air in my ear. It automatically made me dizzy and nausious I thought, “Great…I might feel like real &*%&^$#^# now…but at least they will know what’s wrong with me!” Well, I came back for the results and the “specialist” said the tests were negative and in a nice way told me that it could all just be in my head and that maybe I was making it up. Again, I walked out crying.

ALMOST DONE…

(2005) The meclizine at this point wasn’t working but I was afraid to get off of it fearing that it would make the episodes worse. I went to see an NP for a yearly physical. I wasn’t even going to tell her because I knew what she was going to say. But, it came up. She decided to try me on a blood pressure med (forgot the name) and she told me to come back in a month and see a Doctor she recommended. Well, a month later, my life changed. I met a wonderful doctor at Kaiser Permanente by the name of Dr. Doi. She was the very first doctor that ever opened up my chart. I had always taken my chart with me to the doctors in Hawaii and the other two as well as the specialists I saw NEVER looked at my chart. We talked for about an hour (maybe more). She was looking on the internet and asked me “do you ever have migraines?” OH MY GOSH!! That was whewn she told me about MAV. I cried. It wasn’t in my head, I wasn’t crazy!! She ended up giving me Nortriptyline and Maxalt. I then saw the Neuro she recommended and again, I cried. She validated my 7 years of agony. Although she said it is rare, it is a true problem! She also told me to go on 400mg of B2. I kind of forgot the whole B2 thing until recently.

(2006) I was taking 25mgs of the Nortriptyline but I increased it to 50mg (on Dr’s orders) because I was starting to get more episodes. About a month ago, I started to take the B2 after I got 2 wpisodes in a week. I also made an appt to see Dr. Doi again. I told her that my head migraines happen almost daily during my menstrual cycle and the spining episodes have increased. I did tell her that I was taking the B2 for a couple weeks at that point and I only had the head migraines 3 times the week of my cycle! (YAY!). She increased my Nortrip. to 75 and wants an update in a month. She said if things didn’t improve to see the neuro.

WHEW!!! Okay…I kinda rambled there towards the end and I hope you guys don’t mind…It is so nice to know that you guys are out there. My hubby always told me that I couldn’t be the only one in the world dealing with this! Hope to hear from you all soon!! Sorry…I think I just got a bit too excited!! ALOHA!!


#12

Hi:

Since I was in high school, I have had attackks lasting one to many days of what I call Brain Fog. It feels like I have a severe hangover. Nothing could cure it. When I went to work I had these same “attacks” every two weeks or so. Finally in 1999, I had them constantly. In addition, I developed vertigo, photophobia, sound phobia and the inability to work. In the past, I was always able to make up any work I didn’t complete on the days that I felt fine.

I went to my local doctor and he pescribed Antivert(sp?) and indicated I would get better from an ear problem in six weeks. The medicine worked but everytime I stopped taking it, I fell right back to where I started. Finally in December 1999, even the drug failed to work. I had to stop working.

My doctor send me to an Ear doctor who had me go for vestibular therapy which didn’t work. He then sent me to an internist who called my primary doctor and indicated he tought I was gold bricking. I did get him to reccomend more physical therapy and I commuted to the NYU Hospital center in Manhattan which is considered to be have one of the best vestibular therapy centers. They referred me to a doctor associated with them.

Once it was clear that vestibular theropy didn’t work, he didn’t know what to do. The therapist at NYU told me they were starting to refer cases that they could not heal to vertigo doctors. She gave me two names. One was associated with another hospital in Manhattan and one in CT. The doctor in Manhattan did not take insurance but his partner did and someone (I don’t remember who) indicated his partner was just as good. I went to her for a year but she ressited callling my condition MAV because I did not have headaches (My current doctor sees my brain fog as either parft of the aura or the headache itself.) I whent to a phychologist(sp?) to see if I lost any cognitive function. I passed his tests with flying colors only to find out that only two percent of people fail. There is no way of testing how much cognitive reasoning I have lost without haven taken the test when I was well prior to getting sick.

All this time I was trying to get disabiltiy from work and SS Disability. You can imagine the problems I had. Each time I had a doctors appointment I would FAX ahead my symptoms and the problems I was having. I then sent thes plus all my various test results, about five inches thick to SSD and my work disabiltiy. Very fortunatle I had worked with my manager for 20 years and she really pushed my case. When SSD at first denied my claim, my employer paid for the lawyer who eventually got it for me. (The SSI check I get is subtacted from my work disabily check so it was to my employers interest that I get SSI.)

I called back my NYU vestibular therapist in 2001 and she regave me the name the doctor in CT. He is considered one of the best in the country in the area of MAV. He actually believed I had MAV.

Between 2002 and 2005 I became a science experiment. There appears to be no drug that diretly helps people with MAV. Drugs meant for other conditions sometimes have side effects that work on MAV. He started me out on an antiseziure drug for epileysy. After two weeks, I couldn’t remember my phone number (even the area code). He gave me drugs meant for heart patients which reduced my heartbeat to 40 beats per minute and my blood pressure to 80 over 40. Finally after trying about twelve drugs he found one that seems to partially work.

I have been on Trofranil-PM (300mg which is a weak dose) for the last nine months. I still get vertigo if I only bring in the groceries. I crash with head fog If I do to much physcial work or read for more than two hours. (I sometimes use darvon - a week opiate for the brain fog.) At least the head fog is gone for the most part. Using Trofranil, I sleep about nine hours at night and two hours in the afternooon. He has recently prescribed Provigil(200mg) to offset sleep effects of Trofanil.

Although I am not cured, this is the best I have felt in seven years.

Adam: Thanks for the forum

Jim O


#13

One day in august of 2004 I woke up, got out of bed and felt lightheaded and mildly dizzy or “off”. I still had it after 2 weeks,I went to the dr. and he thought it was my ears,but it wasn’t . Also I felt like sometimes I was on a rocky boat or walking on jello,it was very upsetting . I could not really work ,it was not painful but very uncomfortable to live with.Then I started to get pressure in my head and clogged ears and weird sensations in my teeth and gums. I felt like I had a couple beers, mildly dizzy and lightheaded,I was terrified to even TRY drinking alcohol for fear of becoming worse. I went to many doctors had MRI’s etc… nothing came up .I went to 2 ear specialists, one said I was fine and the other neurootoligist said my Dix Hall Pike was off a little and I might benefit from rehab. Rehab was useless. I went to a TMJ specialist and headache pain specialist and he made me a splint, that did seem to help a little.After a year I went back to work…I am 75% better but I am at a point to where I dont feel like I will ever get any better than where I am now.My ears are clogged all the time and I have pressure feelings in my head, the dizziness is not as bad but its still there and my balance always feels off, I am like this ALL the time,I never get a break.I have had 3 auras in the last year and they REALLY freaked me out. I dont know if I have MAV or not I just feel like I am a patient who has fallen thru the cracks and nobody seems to know what to do. By the way I NEVER get headaches. When I go back to my pain specialist I may ask him about taking some of those drugs mentioned on this board to try to help the dizziness/imbalance. I dont really tell anyone at work how I really feel because I dont want them to think I cant handle the stressful physical work I do.Its odd but my balance feels off but my therapist said I have perfect balance and I must because I have a job that requires perfect balance: carrying heavy ovals trays with up to 50 glasses on them with 1 hand.But I feel my body pulling to the side, I just dont feel right.I just want to be normal,I have forgotten what normal feels like it has been so long. Lolli :cry:


#14

I am so thankful to find this site. I have thought for five years now that I was the only one with these strange symptoms. I had my first bout of vertigo the week after I delivered my twin boys. After 5 weeks in the hospital on complete bed rest and a C-section delivery, I was told that my vertigo was just my body adjusting and the stress of having premature twins. This did not prove to be the case. Once my body did get back to normal, I started experiencing vertigo and dizziness every two weeks for a couple of days at the time. I did not seek treatment due to lack of health insurance until a year and a half ago when I actually started to experience seizures. My neorologist says that people that have epilepsy are more likely to experience migraines. He has put me on Depokote ER and Topamax. The seizures are under control but the vertigo and dizzyness I am sad to say are not. I hope that we will find the right combo soon.


#15

My Story - I have had balance problems since I was in the 7th Grade(late spring of 1999). I remember just sitting at the lunch table, talking and eating my lunch. I felt a “click” in the back of my head, which after that day lead to years of dizziness and a “disequilibrium” feeling. Then in the summer of 2004 when I was visiting my best friend in Kentucky, I had a very bad middle ear infection. He looked inside and said it was really inflamed. Thank God that my friend’s father is an amazing allergist and had some prednizone’ handy(it reduces inflammation/swelling). I had also been to an amusement park earlier that day. All I did was ride the stupid Ferris Wheel, then later that evening(Due to the ear problem). I started to feel like everything was “Spinning” around me. I went home, and I was then diagnosed with Labyrinthitis. That went away in about a week, but the dizziness/off balance feeling that I had experienced before I had the infection, because worse(the dizziness feeling I had before was “livable” and I never had a problem with really falling). Now after the infection the feeling was worse, and not as intense(as I feel nowadays). Then in early 2005, I had mono, that made me dizzy/on top of being dizzy(if that makes sense), but those feelings went away. WEll, I thought I’d mention that even though it really doesn’t have much to do with my problem. In January 2005, I was given tests to determine if I had an inner ear problem, I was given an “ENG” aka Electronystogram. I hated that, especially when they pour hot water in both ears, then later on they test with cold water. It tests your balance system to see which ear might be affected. But the whole idea is to piss your balance system off to make sure that you don’t have ear-related dizziness. Well my test didn’t go long, I yanked that tester right out of my ear. I hated the spinning feeling, never wanted to feel it again(theres more to this). The water in the ear, wasn’t bad, it felt like getting a massage where fingers can’t reach or when you have a bad itch in your ear, this really felt great until the vertigo was set off. Well, since I bailed out on my ENG, I was ordered to have an MRI. Well I was laying on my head for a half hour, and the MRI is annoying, but I got through it. When I got the results back from my ENT(Ear, Nose, Throat Doctor). My MRI results were FINE. I was really pissed off and depressed, but glad to know I didn’t have brain cancer or a tumor. In late 2005 I started to have “vertigo attacks” where I would have the spinning sensations. I still get these, but usually average 1 attack every 4 months. My vertigo attacks kill me. I can’t drive, everything is moving, when in reality it’s not. But I am glad that the attacks have only happened at night so far, and they usually last about a day. Here is the current status of my vertigo. I still suffer from the dizziness/off balance feeling that I felt since 1999, and I now have vertigo episodes. I am so glad that I never get motion sickness. I have never got sick to my stomach from my vertigo problem. It’s just an inconvenience to suffer from this stupid condition, I just wish I could find a medicine out there to help my problem out. Ocassionally, I got a feeling of fullness in my head, EXTREMELY lightheaded, and I have “eye pains” - the kind I have during a migraine, except the headache is not present…I hope there is a treatment or cure out there…somewhere.


#16

Hello, my name is Jay and I have entered this forum on the behalf of my wife, Stephanie. We’ve read through a lot of the postings together. She has been suffering from vertigo for over 2 years now. Her first “attack” hit her suddenly and the vertigo feeling hung on for at least a month. Our family doctor initially diagnosed her with Mienere’s Disease, but sent her to a neurologist who tested her and tested her and tested her again. Finally he sent her to an ENT who diagnosed her with Vestibular Neuronitis. After about 6 months of physical therapy for vestibular retraining she was told that there was nothing more they could do for her and told her to continue her excercises at home. She continued to have “attacks” although the vertigo effects didn’t seem to hang on as long with each one… until about a month ago. Through all of this we had done some searching online and a lot of the symptoms she’s been having didn’t seem to match up to VN. Then we came across some information for MAV. It seemed to match closer than any of the other disorders that we’ve looked into. History of migraine headaches (although she has never had one during a vertigo attack, but there have been times where one occured shortly afterward), sensitivity to light and sound, motion intolerance, tingling sensations in the back of her head, numbness in her hands and legs, and spinning vertigo are the symptoms that she’s having. After her last attack we went to see our family doctor again and asked about the possibility of MAV. He looked over her test result from before and said that it could not be MAV since signs of migraine headaches would have shown up on her EEG. Well we asked him to refer us to another neurologist anyway. The neurologist we talked to seemed to agree with us (and told us that only about 5% of migraine sufferers show EEG results). He wrote her a prescription for Topamax, but my wife being the health nut that she is decided that she’d rather try a natural alternative first (probably the best decision after I researched the possible side effects of Topa). So he told us to try 300mg Co-Q10, 150mg Butterbur Extract, and 400mg Feverfew once daily before bedtime. She has only been on these for 3 days and were told that it may take a good 6 weeks before we begin to see results. We are hopeful. Has anybody else tried a natural alternative for MAV? I’ve heard of B-2 but also heard that dosages of 250mg or more if taken over a prolonged period of time it could cause nerve damage. Anyway… we were very happy to come across this site and hope to learn from all of you as well as share as much as we can with everybody as we learn more about this ourselves.


#17

Hi there

I just found this website last week - I don’t know how I didn’t before, but I’m lucky to have now. Reading through some of the postings was like putting lots of little bits of my experience together, it is also reassuring as ‘vertigo and migraines’ seem to have a stigma attached to talking about them with non sufferers - so to find you all here is comforting (although I wish for you all that you weren’t on here, if you know what I mean!).

I first felt ‘dizzy’ at 11 years. At 12 I had my first really bad bout of vertigo - I had to lay flat on my back for 24 hours and take stemetil (which I still take when needed now). I couldn’t raise my head an inch without rotational spin. Ever since then vertigo has been something that I have had to live with in varying degrees. I was intially told I may be anaemic and put on iron tablets - then told it was anxiety and panic attacks which made me dizzy (I was unhappy at school and became agoraphobic, so all illness was treated as psychosomatic I think!). I did indeed have the occasional panic attack, but mostly when I was having a vertigo attack, that was very anxiety creating in itself! The panic attacks have practically dissapeared (for many years) and the agoraphobia too, just a problem with travelling by certain methods is left.

It took till I was 26 for me to realise that my ‘vertigo’ was not self induced as had been suggested all those years from the anxiety but a real physical condition. At 16 I had my first migraine - with aura. I would have a migraine roughly every few months, the vertigo would be a bad bout of days or a week in bed every 6 months or so, with lots of little short vertigo bouts in between. I never associated the two items until a 10 years ago, when I moved to London and got myself a fantastic doctor who told me it wasn’t panic attacks at all.

My migraines and vertigo seem to have got worse during my 30s. I get migraines with and without aura - some I have had are definately basilar as I have had double vision along with speech problems, paralysis, light and noise sensitivity, stomach problems, confusion (I call it scrambled brain) that lasts for days - but I am never sick. My mother was a migraineur - a bad one, but never suffered from vertigo. I have had hearing tests and have been to see a neurologist - everything is fine as it can be - apart from the migraine which they cannot prove is connected to the vertigo, but they feel strongly that it is. The vertigo is bad for me, when I am walking I have to be careful not to look down or sideways otherwise start to spin - sometimes I get those wet ears - they feel hot and inflamed and the pressure in my head and that knotty feeling behind my eyeballs is not nice - then I know I have vertigo on its way. The tiredeness before is often another sign - I find if I can rest a lot then I think I can sometimes avert the attacks. I don’t like flying or boats - I don’t like the sensation of movement and I know this is to do with my vertigo/balance.

It has really affected my work and I have had bad experiences in the past due to the time I have had to take off to deal with the migraines and vertigo. Currently that situation has improved since I changed jobs, and that really helps. Fortunately I have a very kind and understanding husband who is very supportive. I lead a pretty full life, but in reality I often feel unwell for days on end with the migraines and vertigo - I would just love to feel well more of the time. I have consoled myself that I just have to learn to live with them and manage them to the best of my ability - rather than feel ashamed or get angry with myself as I have for years. I try not to let it stop me doing too much - though when you are recovering from a really bad bout of vertigo all you want to do is stay near home.

Thanks for reading - I hope I can contribute something positive on the message threads on here in the future.


#18

Hello everyone
After 5years of acute symptoms I have finally found a doctor who took my collection of seemingly disconnected happenings and given them a label. Migainous vertigo. I cried because there was no fight needed on my part, she didn’t try to refer me to the pschyiatric team, nor was there any suggestion of being referred to a whole collection of other consultants. She even smiled and nodded her head as I recounted what to me sounds like a repetitive and tragic 5 year saga. She asked me questions that drew out more symptons that I didn’t recognise as connected.
So now I am relived that I’m not crazy but in reading about the condition not very optomistic that it can be controlled.
Last year my GP tried me out with Pizotifan. For 2 months it was like a wonder drug. Felt human for the first time in years. Then rapidly deteriorated. the dr kept upping the dose until I became a junkie and unable to work. I took 2 1/2 months to come of them . Nightmare.
My new wonder-consultant has started me on KEPPRA (levetiracetam) and again the first 6 weeks I’ve been functioning generally better than I have in years. But yet again with the increase of dosage to 1000mg a day, my attacks are less frequent but more severe. But more scarily the side effects are affecting my personality making me quite depressed and very snappy with the kids. I think that work is going to become a distant memory again. How do others deal with this issue?
I wonder if treatment is worse than the condition… Unfortunately my episodes are so random that I have no triggers to avoid. Lots to think about. I’ve appreciated reading everyone elses stories. Has anyone really stabalised their condition? if so, how?
I think I’ll stop there before I go on a ramble!!! :slight_smile:


#19

I realize I’m not telling my story: but just to reply about controlling MAV: I have it with associated nerve damage and some episodes of BPPV; my younger daughter has it purely with migraine. Since she was a little girl, she would wake with the room spinning. She developed classic migraine with aura at around age 11, was fairly stable, but during high school–when she played the saxophone every day–she complained about her head not feeling right. She got acutely ill after tonsil surgery, and had a week long bout–mostly vertigo–which stumped the neurologist and ER doctors. Then after the flu in 2005, she ended up in the hospital with a status migraine–again, mostly vertigo. She was in rough shape for the next year or more, but was started on nortriptyline. It was difficult to find the right dose, because 50 mg made her ill, and 25 mg didn’t control the vertigo, but 30mg has worked well for her. She just finished her first year of college, and although she had a few spinning mornings and some dizzy moments, she could control them with ibuprofen.

Her neurologist just suggested trying to taper off the nortriptyline, but since she woke up just last month with the room spinning, she’s declined that suggestion.

For myself, it’s a longer story and the MAV was diagnosed in Boston after a long struggle with a local neurotologist, who just said I had a protracted vestibulopathy. I’m on klonopin and it has made it possible to work and function, although the vertigo is still lurking at times.

In response to an earlier post: we use the magnesium 400 mg/day, fish oil 1 gm/day, riboflavin 400 mg/day and CoQ10 150 mg/day. I think it helps.

My otologist firmly believes that people suffer through bouts of severity and then tend to get better. He says if he’s treating them, he gets the credit for the improvement, but he thinks that the disease tends to get better on its own.

So, I think there’s hope. I believe Adam has tried multiple meds. At least you have a physician who gets it: that’s invaluable.


#20

Hi J_S_McG,

I have researched the natural alternative and I think what your neurologist has suggested is a good idea. I have tried Butterbur (Petadolex), CoQ10 and Feverfew but unfortunately, they didn’t help me. I am trying Magnesium at the moment.

Please let us know how you go with the natural alternatives as all the drugs have huge downsides related to their side effects.

Rob