Hi lizziebb,
I just read you post and wanted to tell you that I have been on Keppra hor some months now. I was wondering how you were going with it. I felt it was helping in the first month or so, but now it seems the effect has worn off. I am taking 1000mg twice a day.
Hi all i have suffered with mav for a long time, but the last 3 years have
been the worst. I had severe attacks for over a year and a half, visiting
my gp on numerous occaisions, seen ent specialists, and finnaly a brilliant
neurologist, who diagnosed me with migrainous vertigo, a rare type of migraine.
As it took a long time to get a diagnoses,and my father dying from a brain tumour"", i had a nervous breakdown and also suffered with intrusive thoughts and high anxiety which is not surprising, all do to having
mav,
I tried eppilum,which i had a bad reaction to,and i am currently taking
25mg of amiltryptiline, which is helping a little and the migraines are
reducing, very slightly.
Congratulations on setting up this wonderful forum, i do hope it raises
awareness of this debilitating illness, and no doubt it will all of us who are
suffering, keep up the good work.
Hi RobSydney,
Iāve just nicely come off Keppra. Like I said, the first few weeks were amazing then down to little help then, as my consult put it, I became āan emotional liabilityā! mood swings to end all mood swings! And still the vertigo. Coming off it was not fun but worth it. Iām now taking a beta blocker. At the moment juory is out but vertigo attacks are less severe and recovery time is better. I am quite greatful not to be taking yet another wonder drug as I am sure that my anxiety levels would rise anticipating the fall!
Hope you find a way through, my GP keeps telling me that in his experience, this sort of problem usually just magically dissapears on itās own!!! :x
take care
Lizziebb
Hi lizziebb,
Yes I found that too. At the beginning I thought the Keppra was working really well, and lately I feel it is not helping at all. My neurologist wanted me to stick with it for six months to see if it will work but that is just too unbearably long for me. I am thankful I didnāt become an emotional liability too on top of everything else!
Hope things go well for you on the beta blocker.
IĆ¢ā¬ā¢m really glad to have found this forum. Thank you, Adam, for putting it together.
My first vertigo episode was in 1997. I was suffering from chronic fatigue syndrome at the time and had also recently had an upper respiratory illness. It came out of nowhere and scared me to death. It was full rotational vertigo with the room spinning around me. I was 21 at the time. The ENT did a lot of testing (I know he did the caloric testing and hearing tests and the test to measure the inner ear pressure Ć¢ā¬ā I donĆ¢ā¬ā¢t remember what else). He diagnosed me with MeniereĆ¢ā¬ā¢s (I know I had elevated inner ear pressure in both ears and also had hearing loss in the lower frequencies during the attack that resolved after the attack). He told me to follow a low salt diet. I had a really hard time with that though, because, at the time, I was actually on a high salt diet for a low blood pressure condition (neurally mediated hypotension). Anyway, the low salt diet did not help the vertigo and made everything else for me much worse. From 1998 through about 2003, I had about two vertigo attacks a year. They lasted about two weeks at a time. TheyĆ¢ā¬ā¢d usually start with the full spinning followed by several days of feeling like I was on a boat. They were severe when they happened, but in between attacks, I was fine. So, I didnĆ¢ā¬ā¢t worry too much about it. IĆ¢ā¬ā¢d eat a low salt diet when they happened (even though it didnĆ¢ā¬ā¢t seem to help at all and often made me feel worse), but that was about it. My chronic fatigue had resolved, and everything else was going well for me, so I didnĆ¢ā¬ā¢t mind just riding it out. The only other option I was given was trying steroids, but given the infrequency of my attacks, I didnĆ¢ā¬ā¢t think the side effects were worth it.
Well, starting in 2004, my vertigo attacks started getting longer and longer. I started seeking other answers. Fast forwarding to now, my attacks are lasting an average of two months at a time. Most of that time is not actually spinning (although I do still spin), but is more along the lines of severe imbalance, feeling like IĆ¢ā¬ā¢m on a boat, like someone is pushing me, like I am falling, etc. IĆ¢ā¬ā¢m also lightheaded/dizzy most of the time. Lying down and being completely still generally relieves my symptoms, although I do still get occasional spins even when being still. IĆ¢ā¬ā¢m on my fourth neurologist now. I am now working with an ENT/otoneurologist who did immediately diagnose me with migraine associated vertigo. He said that I donĆ¢ā¬ā¢t have MeniereĆ¢ā¬ā¢s disease. He referred me to a vestibular therapist and a neurologist. He didnĆ¢ā¬ā¢t expect the vestibular therapist to find anything (I was in between attacks at the time and feeling fine), but she did. As soon as she saw me moving around she commented that I didnĆ¢ā¬ā¢t move like someone that Ć¢ā¬Åfelt fine.Ć¢ā¬ Her tests all showed that I do have positional vertigo (I failed many of the balance tests and did have the nystagmus with certain head movements and positions). She started me doing vestibular rehab exercises which I found very hard to do and which made me extremely sick. IĆ¢ā¬ā¢d only been doing (or trying to do them) a few weeks when I got my latest full blown vertigo attack. This one is going on two months again. I have started on topamax, but it is too soon to tell if it will help or not. I have also developed acute gastritis since starting it (we arenĆ¢ā¬ā¢t sure yet if that is a result of the topamax or unrelated). We also tried the epley maneuvers three different times during this attack, kept up the exercises, and have tried valium. None of these things have seemed to make a difference for me though. I do seem to be slowly coming out of this vertigo episode, but it was only after the therapist basically gave up on the epleys and exercises. IĆ¢ā¬ā¢m still on the valium, and the plan is to keep working with the neurologist on trying to find a migraine preventive that might help and also to re-start the VRT once this episode is over with (but more slowly and while IĆ¢ā¬ā¢m still on the valium) to see if that will help as well.
I guess I should also mention that my grandmother had severe migraines. I had maybe two severe headaches had a teenager that, looking back, were migraines. In the past year, I have begun to have actual migraine headaches as well. They generally occur just before my period. Once I get them, they are very sensitive to motion. They are tolerable as long as I donĆ¢ā¬ā¢t move.
Also, even though my vertigo lasts months at a time, the attacks almost always start during my period. So, there is definitely a hormonal component for me. I am not on any hormones (because I know they can make things worse), but my vestibular therapist mentioned that there is a gynecologist in my area with an interest in the relationship between hormones and vertigo, so I am going to try to get a referral to see her.
IĆ¢ā¬ā¢m currently in graduate school and just hoping that IĆ¢ā¬ā¢ll be able to stay there Ć¢ā¬ā that is in danger right now as these attacks are really disabling.
Best of luck to everyone.
Allison
So glad to have just found this forum. Would like to thank Adam first of all.
My story started in July 06. Had an āacute rotary vertigo attackā while at work operating heavy equipment. Was taken to Emergency, prescribed SERC and told to visit GP as soon as possible. Seen Nueorologist, ENT and had all tests (CT-Scan, ECG, MRI) as ordered by GP. Was suspescted of having possible Menierās. First Nuerologist had only heard of it and referred to ENT.
About 6 months into this and still having some vertigo, lots of dizzyness. tinnitus, off balance, pressure in ears, and pressure with visual blurr, head blurr, etc.
ENT order the ABR, VideoNystagmography, the works. All within normal limits but fairly low in Vestibular Responses (also still within normal limits)
Turns out ENT was only familiar with Menierās, had never heard of MAV or ME as I had not yet either. Started searching the internet and found others who strongly suggested MAV. Meanwhile, I changed GPās a few more times. Menierās had now been ruled out and MS was suggested by another Dr. as I was DXād with Trigeminal Nueralgia 2 years earlier which only lasted a very long 3 months of pain and had an attack of some sort in October which started out like Vertigo (just the feeling before vertigo), but this time I lost my sight for a few seconds and when it came back; my vision was stacked vertically. Off to emergency, another MRI clear.
Was told possible mini stroke(TIA) and kept for 10 hrs for observation.
Posted this on the web and was again told by other people, check into MAV.
Got another GP, and asked him if he heard of MAV and he did. He referred me to a nueroloigist who dealt with these disorders, and said to stop the Serc as they were not working for me and said to try Ativan and let him know how it went. It went well, so he prescribed Clonazepam at 10 mg twice a day until I see this new nuerologist.
In July 2007, seen the new Neurologist in Edmonton. He had everything on me, all my medical records for the past three years. His first words were ābefore we start, I am 99.9% sure what you problem is, but Iāll tell you at the end of these in office tests and questions.ā
He then told me I have Migraine Equivelent or MAV. Started me on Nortryptyline building up to 25 mg at night in addition to the clonazepam.
I am close to 100% at the moment, working and happy again. Hope all of you find what works for you some day as I have. And thanks to those of you who led me in the right direction.
A history of Migraines in my family ( the pain migraines)
Ken
Mine started suddenly a few years ago. I had a bad cold. One day at work, I was doing a spreadsheet, and POW!!! The world started spinning, my vision was blurred, and I felt a bit weak. I thought it was perhaps just a quick, hardcore dizzy spell, but then I realized that I couldnāt type. I took some deep breaths, got myself together, closed my office door, and took it easy for a few minutes. When I eventually felt safe enough to leave my office, my balance was off, but no vertigo. After about an hour, I went home for the day.
The symptoms of disequilibrium remained for several days. I thought it was just a bad cold messing with my ears. I still had trouble typing at work. I took some decongestants, but nothing changed. When the weather warmed up a bit in the next week, things got better. I was able to workout, and I thought it was behind me. Thenā¦
ā¦It got worse. Someone once told me when you have a bad cold or sinus infection, to use a solution of saltwater. Snuff it up through the nose, and it will clear everything out. That turned out to be one of the scariest experiences of my life. I got a wicked headache, shocking pains all over my body (especially my feet). It actually took me to the ground for over 2 hours. I tried to relax the best I could, but it was absolutely crazy.
My work suffered as a result of this. I had trouble driving, and had a lot of trouble functioning continuously at work. I felt weak, my balance was bad. I generally leaned against a wall for support when I spoke to someone. One doctor gave me some new decongestants, but those created similar symptoms to what I experienced with the salt solution. The pain in my ears was extreme. The GP I was seeing prescribed some pain medication for it, and I had an allergic reaction to it and ended up in the hospital. I stopped seeing that doc immediately, and found an ENT.
From there, I seemed to improve a little bit over a few weeks. Steroid nasal sprays, rest, etc. Then, it got worse again. Certain foods would set me off. Tuna, dairyā¦all sorts of pressure and pain in the earsā¦sometimes at the top of the head. Shocking pains in my hands, feet, back. Disequilibrium and weakness increased. The ENT ran all sorts of tests. ENG, etc. All normal. He suspected it was neurological.
The neuro rans all sorts of tests as well. MRI of head, neck, and spine. Ecogramā¦lyme titerā¦diabetesā¦M.Sā¦and tests for myasthenia gravis. All he found was some very mild carpal tunnel, mild thinning of the disks in my neck, and a slight abnormality in my right foot. He saw the pain and distress I was in, gave me some lortab and xanax, and told me to take it easy. I had to go on medical leave. Never had been sick for any extended period in my life before that.
After that, I went downhill further. I ended up in the emergency room twice. Severe, wicked pain in my ears, the top of my head, vertigo, shocking pains in hands, back, and feet. Nobody could figure it out. I went to a new ENT, and he agreed with the previous doc that it was neurologicalā¦but he wasnāt a doc who was committed to helping or working hard to diagnose me. My wife found me an otologist. When I went to see him, I needed assistance to walk. I was pretty much out of it. He thought it could very well be the onset of Meniereās and put me on a trial of triamterene and valium.
The above sequence of events from the medical leave to seeing the otologist was about 3 weeks. I had kept the owner of the company abreast of what was happening, but after I informed him that it could be Meniereās and was on doctorās orders not to return to work yet, I got a notice in the mail that my employment had been terminated. I had been hired to turn the company around, and it was going well up until I got that nasty cold (temps. were around 0 degrees at that time). When I got sick, obviously, things didnāt go well. Several friends and family suggest I litigate, but to be frank, at that point, I didnāt care that much about losing my employment because, due to my continued downward spiral, my main concern was to simply stay alive, and not become disabled. I could get COBRA, and just start over.
I improved incrementally with the new treatment regimen, but no huge improvements. The valium seemed to be the most effective. Realistically, however, I was still quasi-bedridden throughout the next month, but not in serious danger like I was before. I started doing some freelance writing to keep busy, and did better throughout the next several months. I really thought it was just a virus that had spread, and that Meniereās wasnāt really the culprit. My hearing was ok. Ringing in my ears had always been extremely minimal. I stopped taking the triamterene. I took valium when I felt off balance.
Thenā¦after several months of things looking better, the winter came.
I felt like Iād been hit by truck. Vertigo, pressure behind my ears, and to the top of my head. I was flat on my back for 10 days. A new otologist thought it was āatypical Meniereāsā and put me back on the same regimen I was initially on. I moderately stabilized thereafter, but not enough to work consistently, either part-time or full-time.
After a few months, I got a little bit better. Tried some acupuncture. It would work for about a day. Went back to the otologist. He put me through VRT, and it helped a little. He suggested the Meniett, and I improved a little more. To be sure, I have ear fullness 24/7, and am always a little āoffā as far as balance goes. Sometimes the pressure increases to a breaking point. From the upper part of my body to the top of my head. Salt intake was never a huge factorā¦it was more the types of foods. Tomatoes would put me under. Chinese was a huge no no (Iād just give it a try when I felt goodā¦big mistake). Oranges would put me in distress. If I tried a glass of red wine, I would be in pain. A glass of beer would do the same. I stayed on a quasi-vegan diet, and improved. Exercised a lot in the gym, but weights were a problem. Mostly aerobic workā¦and that helped my symptoms.
I was able to re-enter the part-time workforce early this ear, and worked until my children were out of school in June. Regarding work, it wasnāt easy, but I did ok. Gradually, however, despite seeing so many doctors, I knew I needed to do something different. I needed a full physical, and hopefully we could find something different than had been found when I initially became ill. I had a GP do a complete physical. All ok. BP and pulse below normal standards. Cholesterol in the 160s. Everything good for my age of 43.
We took that data and went and saw a new specialist. 2.5 hour exam. No appreciable hearing loss. Several other ear tests came out normal. Posturography was off, but not too bad. We talked about everything. He thought it was more MAV than Meniereās. He thought I was one of those borderline MAV/hydrops cases. Put me on verapamil and Serc. Verapamil started working faster than normal. It was just a few days before I felt a difference. Serc would sometimes seem to clear my ears a bit to the point where the combo of verapamil and Serc left me almost symptom free for the first time since late 2004. However, I do have side effects with some headache issuesāmajor headaches that force me to lay downā that pop up about an hour after taking Serc.
Right now, Iām about a month into the regimen and I am considering going off Serc. I want to give it more time, but it really seems like the verapamil is helping more than any other treatment Iāve received over the last few years.
In sum, at this juncture, I think the new doc was right about MAV. As we all know, however, you never seem to really know with these types of ailments considering that there isnāt a single, silver bullet test to identify it. Itās more a process of exclusion. Iāll continue to take the verapamil, discuss the efficacy of Serc, and explore other alternatives if necessary after seeing the new doc again in early November. Iām going to try to go back to work and try about 30 hours a week, and see how that goes. The goal, naturally, is to lead a normal life. Tough stuff.
Hi
Sounds like an all too familiar story - maybe Meniereās but doesnāt quite fit the picture - so letās call it atypical instead! I am glad youāve finally found something that seems to be working. I recognise your journey - Iāve been told that Iāve got atypical MD & Iāve never developed hearing loss in 11 years. I too have lots of head pressure and headaches, with and without vertigo. At the moment Iāve decided to try Coenzyme Q10, just because Iāve read about trials that show it may help prevent migraines and vertigo. Iām only a week into it - only a mild headache so far this week but not done much for the disequilibrium as yet but itās early days.
Take care
Chris
Let us know how that works out for you. COQ10 is expensive, but if it eradicates the symptoms, wellā¦it certainly pays for itself rather quickly.
Hi everyone,
Iām new here and Iām very thankful to find this site. Thank you so much Adam for this forum!
First of all, Iād like to apologize for my bad English. Iāll try to sum my story up.
My nameās Riccardo, Iām from Italy and Iām 27 years old. My life has dramatically changed after a whiplash neck injury that I had in 2000. I was going down in a street on my motorcycle and I drove into a door of a truck which was suddenly opened. My head was thrust forward and then backwards. I had the helmet.
After 15 days I developed a lot of symptoms: costant dizziness 24 hours a day (my feeling is like that of being on a boat), feeling of nystagmus, blurred and distorted vision, photofobia, strong neck pain, headache, tingling left and right arm. When I move my head up and down or when I move my eyes on the left or right side, dizziness gets worse. I did a lot of exams (MRI, CT Scan, vestibular tests, blood exams, etcā¦) and they were all negative.
Doctors in Italy didnāt understand what my problem was and they told me that I was depressed. But I knew I was not. They prescribed me a lot of antidepressant drugs but Iāve never taken them because I didnāt feel depressed at all. I spent 7 years of my life going to the doctors without a diagnosis. They looked at me like I was an āalienā. It was horrible!!
Because of this disease, I canāt study, I have difficult in concentration and I almost donāt have a social life anymore. For me itās very hard to see my friends because I know that theyāre fine and Iām not. So I wonder: Why me? Why me? I just want to be normalā¦.I have forgotten what being normal feels like. I also dropped out of the Medical University because of MAV and becoming a doctor was the biggest dream of my life. 
After 7 years of dizziness and vision problems, I decided to go to the USA and, after having done a lot of vestibular and neurological exams, I was diagnosed with MAV. The doctor prescribed me Gabapentin drug (Neurontin). Iām a bit scared because Iāve heard that it has a lot of severe side effects. But I canāt take this dizziness anymore so I think I will start the therapy as soon as possible. I think itās worth to give it a try. Has any of you ever taken Gabapentin for the dizziness? Any good results? I would love to hear from anyoneās comments or recommendations.
I would also love to talk to anyone so please feel free to contact me.
Hi Rik
Youāve had a long journey to get your symptoms recognised, maybe now this is your turn to get some of your health and life back! Try anything that you think may help you and Iām sure the wisdom of others on here will help you no end. Being/feeling unwell a lot can leave you feeling isolated as you just canāt always do the things others are around you - but this can and will change for you.
I hope you find this forum as helpful and supportive as I have since I found it - I am sure that you will.
Mrs G
I started having classic migraines when I was a young adult. Strong visual aura, headache, and hangover. After some years, i would get just the aura and the hangover, no headache.
A few years ago, i had some bouts of disequilibrium and vertigo and a strange pulling/pressure sensation on the right side of my head (my bad side). I thought these spells were related to viral illnesses that I also seemed to be getting at that time. within a few months I got hit with a dizzy spell that almost knocked me to the floor and iāve been dizzy ever since.
I thought it would go away, but after 4 months, I started doctor hopping. I went to an ENT, had an MRI (normal). Went to a naturopath who looked over my history and suggested that this might be a migraine. I cried - it just felt like she really hit on something. She suggested Imitrex, which I did not take. She also suggested a homeopathic remedy which helped ALOT but for only a short time. I decided to see a professional homeopath whose treatment made me MUCH sicker (I will spare you the details of this horrible experience)
Over the last year, my dizziness, vertigo, disequilibrium has worsened, noticably, by the week. It took me months to even figure out how i was going to get out to a doctor for treatment. My husband and I got so desparate one day that we loaded me up with Valium and took me to the ER. They looked at me like I was a freak and sent me to a local ENT and local neurologist who also looked at me like I was a freak.
Thatās when I decided i needed to get out of the community setting and started researching places like Hopkins, U Penn, and JFK in New Jersey. The people at Hopkins were great listening to my story in detail and suggested that i get on the migraine diet to see if that helped, while waiting four months for my appt. Iāve done so. In the meantime, I saw an otoneurologist at JFK who diagnosed me pretty quickly with MAV. He was so certain of the diagnosis that he didnāt even insist on an ENG or other torturous testing. He started me on Zoloft and I am in the process of increasing my dose to a therapeutic level.
My symptoms, BTW, are mostly rocking and swaying, with alot of bed swings (vertical and horizontal) some of them pretty violent and scarey. The floor is never solid, everything is whipping around, visually, and I have a ton of visual aura symptoms, including visual snow, blue blobs, and a constant clickering in my peripheral vision. When itās bad, i feel like the scarecrow, like the parts of my body are not even connected, and anything i look at is whipping around, not just moving, but whipping - very disorienting. The pullling/pressure in my head is constant, with an occasional, weekly/monthly right-sided headache.
Iām very drug sensitive - is that common among migraineurs or just people who post on this forum? - so have stayed away from taking much of anything my entire life, but iām that desparate - i have to give this a try, because i feel i have lost all quality of life.
The only thing Iāve tried so far, have been the diet, which has not helped at all so far. Valium takes the symptoms down enough so that I can tolerate a car ride to the docās office (with the seat reclined and sunglasses on) but I have to take a ton of it - 20 mg. Itās really very strange, before all this happened that much Valium would have put me to sleep - now I barely feel it - it just helps lower the symptoms.
Anyway, thatās my story, so far. I hope to hear more success stories from you guys 
Hi all
Have just joined the MAV forum. Am completely blown away by the similarities in my symptomsā¦thereās someone else out there like me (not that iād wish it upon anyone!).
I have never as much as suffered from a headache in my lifeā¦March 26, 2006 - (Iām now 48 years old by the way) I woke up to an uncontrollable spinning and managed to make it to the bathroom only to lie on the floor for 2 hours whilst the world spun out of control. Thought it must have been a bug or something and settled back to normality the next day, feeling just a little out of sorts. During the course of the next week I began to feel that I was having mild panic attacks, which I later understood to be dizzy attacks of only a split second happening several times daily.
That little situation continued for about a month (bit unnerving), but slowly becoming more debilitating and feeling incredibly nauseous daily until 3 May 06, when I felt like a bomb had gone off in the back of my head towards the base of my skull. I couldnāt move my head in any direction and was so ill, not being able to talk, eat, drink etc, that I was taken to hospital. After initial survey by doctors, they carried out CT scans whilst under the impression that I might be having a brain haemorage. Results were clear and I was referred to a neurologist at the hospital.
After running tests, MRI etc, he said that he thought that it might be a manifestation of a disease and proposed that Meniereās Disease could be the most likely. He referred me to a ENT specialist and after further tests, the ENT said that whilst I had overlapping symptoms, there was not enough evidence to conclude Meniereās.
The ENT was particularly good, thank heavens and then referred me to a Neurologist in Sydney who specialised in balance/dizzy disorders. The Neurologist said that he was often the ālast bastianā for people with unexplained symptoms. I relayed my symptoms to him (I keep a diary and a Excel spreadsheet to chart my progress for sanity sake), he concluded that I most probably had Migrainous-Vertigo (I think thatās Oz for MAV!), or maybe Multiple Sclerosis as I also had white spots on my brain and suffered from myoclonic jerks (which started soon after I started feeling all these symptoms). Iāve been visiting the Neurologist for well over a year now and he is of the opinion that MAV is much more consistent with my symptoms.
Symptoms:
Headaches, Migraine Headaches, daily dizziness, trouble watching tv & reading, trouble being in shopping centres too long, difficulty speaking to people too long as it seems to āoverloadā my brain, photophobia, phonophobia, general feeling of āunwellnessā, just making it through the day but not having full quality, feeling about 60% perpetually, trouble concentrating with a āfogā surrounding me, fading as the day goes by, isolating myself in the evening in my bedroom resting and closing my eyes often, resolved eventually by sleep.
I think I probably havenāt covered all of my symptoms, but Iām sure you all get the drift.
My specialist appears to be really āon the ballā and has offered me migraine medication called Sandomigran (I donāt know if anyone has ever heard of this) and I have been taking 7 tabs per day for the past 12 months but cannot conclusively say they have been helping as I have definitely improved but assume that I might have improved over time anyway??? The other tablet Iāve been taking just recently is Serc for my nausea. Since taking the Serc, my nausea has pretty well gone (I hope it never comes back!!!). Iāve also had several relapses over this period particularly when I catch a virus or something, but have never found myself as bad as I was initially.
Iām still running on about 60% and canāt work. Iāve been referred to an occupational therapist and have found great benefit in vestibular therapy. After following the exercises given to me for the dizziness, I now swim half a kilometre three times a week as the OT said that bi-lateral swimming was the best form of dizzy exercise out, and I can certainly vouch for that. It gives me sanity in such an insane predicament.
I hope I donāt sound too ādownā about the whole issue, but this forum has given me the opportunity to ālet looseā about the garbage that goes with it. Iāve always been an optomist and hope one day, to bounce back or at the very least, feel that I have a little control over the situation.
Your thoughts and experiences and perhaps any improvements you have had with your own condition, would be of value to me.
cheers
Dizzyblonde
I am very comforted to have this forum. (Sorry in advance if I did not post this properly ā am not at all computer literate).
My life changed dramatically this year February 6, 2007. I am 33 and was making my daughterās bed when severe, black out quality vertigo struck me and I went thud to the floor. I had to ask my daughter to get me the phone (she was 5) so I could call 911. I thought I was having a stroke. I literally could not lift my head, as all I could feel was the world spinning. My vision was also fleeting and I felt I could āgoā at any time.
I was diagnosed as having an āinner ear infectionā at the ER and sent off with Gravol.
Well, this āinfectionā did not go away! Six weeks later of feeling like a prisoner of my body, my ENT suggested MRI and ENG testing. MRI was normal, as was the ENG. I was, by default, diagnosed with āvestibular migraineā. I was told to take a calcium channel blocking med, but cannot as I am still nursing my youngest son.
I feel āoffā all of the time, sometimes it is ālie down in bedā off, sometimes I can disguise it and pretend I am ānormalā. I notice I am always holding my head or supporting my face in some way. I cannot focus on reading anymore, and find driving extremely challenging, due to my horrible concentration. I cannot socialize or have long evenings out, as the imbalance and fatigue is all encompassing. I went from a super fit, weight lifting, aerobic loving athlete to an absolute ācouch potatoā by necessity. I literally ponder 'can I walk from the couch to my bed?" I cannot describe how horrid and life -quality robbing of a disorder this has been. I am afraid to go to stores anymore with my children in case I fall or pass out, am leery of attending events with my children (noise is horrid) and basically pray each day to make it through without anything truly horrible happening. I am always lightheaded, sometimes severely and scarily so.
I do get the āmigraine headacheā which come and go, but the vertigo stays. Sometimes in bed I feel as though I am falling, spinning, or flipping end to end. Blessedly, I also feel still on occasion.
There is very little understanding by others and I suspect I am judged as someone either anxious and/or depressed. Mind you, I do feel anxious and depressed resulting from this craziness!
I am due to see my first real life neurologist in a few weeks (this is Canada and specialist waits are several months). I cannot wait to talk his ear off and beg for some relief!
Everyone out there ā is there a ācureā or a med which will control this? Or do I have to accept this as my ānew normalā? Is the calcium channel blocking med the magic pill? Itāll be nice to hear something before I see this new Dr.
Thanks for listening and best wishes to everyone.
Hi Momof3
Sorry to hear you are having a bad time all i can say is keep a log of how you are feeling on a day to day basis and take it to you specalist when you go try to change your diet as some foods can be a triger i was told to cut ouy these tea,coffee,chocolate,cigarettes,alchol,asprin,ibuprofen,oranges,lemons, limes,grapefruit,Quinine,cheese,salt and monsodium glutamate also to keep stress levels down i hope this helps as for a cure is there one out there who knows so take it easy
best wishes
Janet
My story
Hi Adam and everyone,
My Mav raised its ugly head, 13 yeas ago.
After my first international flight to china from Australia,
on a working visa, 6 nights a week singing in a 5 star restaurant in shanghai.
And During a stressful period in my life.
After disembarking the plane I immediately felt the rocking.
The rocking stayed with me during the years contract in china.
At first I thought it was something to do with the flight,
And after a while I started to believe it was the bad shanghai environment.
I worked 6 nights a week with mav for a year,
And after almost ending up in the loony bin, my hubby and I came home.
The first thing I did was go to a Dr and they started a gamete of tests.
All negative results.
Eventually being diagnosed with mal de debarquement.
Due to the fact it started directly after the flight.
MdDS is typically diagnosed when a person reports a persistent rocking feeling (though they are not necessarily rocking). This usually follows a cruise or other motion experience. Your doctor(s) may throw up their hands because your vestibular tests all prove negative. Many doctors believe this came about when your brain did not return to a normal sense of balance after adapting to a motion experience. A major indicator is that most of us feel BETTER while driving or riding in a car.
It wasnāt until this 2006 I started to notice my visual aura,
I didnāt worry about the aura as initially an ENT had said people with Mal de debarquement did have visual problems
and my initial aura only consisted of an illusion of my environment (furniture ect) slowly moving rocking and rotating
my other aura consisted of a feeling of confusion, dreamy states much like described by people who suffer from simple partial seizure,
And Phonophobia causing a lot of panic.
Like everyone here I too had my share of specialist and GPās that only made my condition worse by not listening to symptoms, and labelling me with anxiety.
One female neurolowitch even suggested it was simply just my age, 44 years old and being told it was (old age blues) by ginkoās what a loser, considering this all started when I was around 29 .
To this I scoffed and in my disgust toward the medical profession became even more determined for a true honest diagnosis.
Finally, I met a wonderful Neurologist,
Dr D.B. McLaughlin, from Brisbane QLD
He saw me for 40 minutes took my history and asked me about the aura picture I had very badly drawn for him.
And he said oh you have one of two things mav or sporadic ataxia.
He said for now we will start treating you for mav.
Well you could have blown me down with a feather.
For 13 years Iād imagined this scenario of me crying my eyes out with sheer relief,ā but no nothingā
Upon telling my husband and family, I finally felt validated.
I wasnāt a complete nutter.
After reading everyoneās stories I do consider myself very lucky,
At my worst times my symptoms are mostly like mal de debarquement, with constant rocking, pulling, falling, unsteady balance, like walking on sponge
Where the ground will bounce up to meat my feet
persistent aura 24/7
If it gets really bad itās similar to when I was drunk as a teenager with very mild bed spins.
The constant brain fog is my worst symptom. energy levels are zilch
Through out my illness, Iāve suffered
Anxiety
Panic attacks
Feeling Depressed
My heart goes out to everyone here,
Iād like to thank everyone especially Adam, for doing such a wonderful job in getting this forum up and running.
What a great source of information,
Verapamil 240mg slow release tabs at night.
zoloft 25mg
300mg neurontin
My triggers are computers screens,
Reading, Tv, Fluro lights are my worst enemy,
coffee, alcohol,nutra sweet.
Five minutes under a fluro light and Iām out to it with the pixies. I dread going to a hair salon.
Iām waiting for meds to work and hope someday to be free of the curse
Thanks for reading,
Warm regards Jen
Hello everyone! I am so happy to have found this site to share experiences with people who understand what I am going through!
Nine months ago I decided to see an ENT after having ear pain, ear fullness, and slight dizziness for a few months. The doctor ordered an MRI. My MRI showed that I have Chiari I Malformation. (More info can be found at conquerchiari.org ) My ENT told me that he did not know what was causing my problems but that it was not my Chiari. Shortly after this, I experienced my first bout of severe vertigo. It was so severe that I was unable to even make it to the bathroom and held my bladder for 9 hours! At this point, I decided to research Chiari on my own and was alarmed at what I found. I began searching out a doctor that specializes in dizziness. I found Dr. Timothy Hain in Chicago and was lucky to get an appointment within a few weeks.
Dr. Hain suspected that I could have Meniereās, MAV, or Chiari related vertigo. We began testing and many of the tests came back inconclusive. He treated me with Topomax and Betahistine. I was on these medications for approximately 3 months. Although, I was too āin the momentā to completely understand it at the time, looking back I can see that these medications made me even more of a wreck. Not only was I still having 2 severe episodes of vertigo per month but I was also irritable, anxious, tingly, and just an overall emotional mess! After, having 3 severe episodes within a 2 week period I went off of the Topomax and Betahistine and began treatment with Effexor. Since beginning the Effexor I have felt much better. My episodes are much less frequent and much less severe. I still feel what I call ābobble-headishā at times and struggle to keep a facade of feeling ānormalā for my family. However, the improvement is there and I am happy for that!
At this point, Dr. Hain believes that I am suffering from MAV. Although we do not know to what extent my Chiari influences it.
I do get anxious about flying and have not done so in awhile. Does anyone notice their symptoms get worse after a flight? I also have heard horror stories about going off of Effexor. Although I am on a relatively low dose (37.5mg) I plan to start a family within the next year and dread both the āgoing offā and ābeing offā of a medication that seems to be helping. Any experiences with this?
Again, thank you for your posts on this site.
It is so nice to have support and red stories of others going through a similar experience.
I wish a happy new year to all and hope that you all can find a little more peace and rest in 2008.
Meghann
Hi Jay ,
how is the natural therapy going , working yet??
jen from mav forum.
ā Begin quote from āmeghannā
Hello everyone! I am so happy to have found this site to share experiences with people who understand what I am going through!
Nine months ago I decided to see an ENT after having ear pain, ear fullness, and slight dizziness for a few months. The doctor ordered an MRI. My MRI showed that I have Chiari I Malformation. (More info can be found at conquerchiari.org ) My ENT told me that he did not know what was causing my problems but that it was not my Chiari. Shortly after this, I experienced my first bout of severe vertigo. It was so severe that I was unable to even make it to the bathroom and held my bladder for 9 hours! At this point, I decided to research Chiari on my own and was alarmed at what I found. I began searching out a doctor that specializes in dizziness. I found Dr. Timothy Hain in Chicago and was lucky to get an appointment within a few weeks.
Dr. Hain suspected that I could have Meniereās, MAV, or Chiari related vertigo. We began testing and many of the tests came back inconclusive. He treated me with Topomax and Betahistine. I was on these medications for approximately 3 months. Although, I was too āin the momentā to completely understand it at the time, looking back I can see that these medications made me even more of a wreck. Not only was I still having 2 severe episodes of vertigo per month but I was also irritable, anxious, tingly, and just an overall emotional mess! After, having 3 severe episodes within a 2 week period I went off of the Topomax and Betahistine and began treatment with Effexor. Since beginning the Effexor I have felt much better. My episodes are much less frequent and much less severe. I still feel what I call ābobble-headishā at times and struggle to keep a facade of feeling ānormalā for my family. However, the improvement is there and I am happy for that!
At this point, Dr. Hain believes that I am suffering from MAV. Although we do not know to what extent my Chiari influences it.
I do get anxious about flying and have not done so in awhile. Does anyone notice their symptoms get worse after a flight? I also have heard horror stories about going off of Effexor. Although I am on a relatively low dose (37.5mg) I plan to start a family within the next year and dread both the āgoing offā and ābeing offā of a medication that seems to be helping. Any experiences with this?
Again, thank you for your posts on this site.
It is so nice to have support and red stories of others going through a similar experience.
I wish a happy new year to all and hope that you all can find a little more peace and rest in 2008.
Meghann
ā End quote
Dr. Hain is my doctor as well. Dual diagnosis of MAV and Meniereās, although it appears quite possible that it might only be MAV. He started me on Verapamil 120 SR and Betahistine. I was already using low doses of Valium, and continue to do so. Verapamil was more effective than Betahistine. Dropped Betahistine after a few months. Increased dosage of Verapamil to 180 SR/ER, and am doing better and better. Not ānormalā, but sustained, incremental improvement. He did mention that low dose Effexor would be the next medication should I fail on Verapamil.
I have not flown since coming down with this illness, but probably will in May of this year. Instincts tell me valium is the way to go, although I havenāt spoken with Dr. Hain about this yet.
Compared to other docs Iāve seen, I both like and respect Dr. Hain quite a bit. A good man and a good doctor. Considering that I live several hours away, he urged me to send him e-mails on my progress on a monthly basis. Seems that few doctors who treat this illness are as dedicated and focused as Dr. Hain.
As an aside, my wife bought me the book, Heal Your Headache, by Dr. David Buchholz, for Christmas. Although I was very disciplined prior to reading the book, it has proven to be quite beneficial. Iāve noticed more improvement since following some of his principles.
I have had alot of the same symptoms, feeling of rocking all of the time , fullness in the ears, ringing, headaches, unable to read or write,now Iam starting to have panic attacks. I have had terrible migranes since I was a teenager. When I was 23 I had a migranous infarct (like a stroke). I didnāt develop the MAV until 3 days after delivering my 2nd child, but during the end of the pregnancy I noticed i was getting dizzy, wen t to the dr, I was told i had an ear infection, took the medicine the dizziness didnāt go away. the third day after I delivered is when it was full blown, within a week I had to go live w/ my mom, with my 3 year old, my husband was freaking out. after 2 long stays in the hospital from vomiting dehydration etc, I finally got an appt. w/ dr hainā¦thank god I have been on verapamil for 2 months, and am 70% better than I was. I am at least able to somewhat function nowā¦ before i couldnāt even get out of bed, or the couch. I have an appt with dr. hain on tues 1/15, I am sure he willl change me to effexor. I hope to god this will be over soon. has anyone been cured from this. I am a nurse, and am on disability due to this hell i am in, I am so depressedā¦I just want my life back. I changed my diet, i went for accupuncture, everything, i feel like this will never end. I read all of the stories and it seems like that this can go on for yearsā¦Has anyone been cured!!!