Post Your Story

New discussion on all things to do with Vestibular Migraine (VM) and Meniere's disease (MM).

new here!!!

Postby MEREDITHHNY on 01 Jun 2009, 09:57

hi everyone,
my name is meredith and im new here...although i have been reading stories for quite some time!! long story short..been through the whole routine...started last year feeling reaaly off..didnt know what was going on..it felt like i was losing my mind...
had all the ear test,one ear has high level mri ,cat scan, every things fine
have allergys, ent says borderline minieres, nuero says vertigo!!!
mine dizziness last for weeks at a time..
it feels like constant 24/7 dizziness not spinning but light headedness
constant brainfog/ confusion
looking at life through someone elses eyes
totally off my rocker
like im in the twillight zone
it feels like living hell....
the nuero gave me meclzine, i ve been on 75 mg 3x a day, and nothing, im still dizzzy..
on my second day of Topamax...still confused if that is for the dizzys??
does anyone else have these same symptoms??? i have two little girls, and i feel like this thing has taken over my life..
i just want to be back to me!!!
what are the best meds for the brain fog/dizziness??
any help, much appreciated!!!
thankyou, meredith
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Re: POST YOUR STORY

Postby scott on 01 Jun 2009, 10:17

Hi Meredith!

Welcome to mvertigo. Really hope you can find some solutions here and stop this junk from disrupting your life.

Probably best if you start a new thread below to enquire about meds or anything else you would like some help with.

All the best ... Scott 8)
Probable vestibular neuritis in 2003 which kicked off chronic migrainous vertigo.
Treatment: lifestyle mods, low-dose paroxetine, valium as required.
Twitter: @mvertigo_guy
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Re: POST YOUR STORY

Postby DizzyinColorado on 03 Jun 2009, 07:31

Hi - my name is Dawn and I live in Denver, Colorado. As a child I had severe motion sickness - in the car, airplane, carnival rides and on boats especially. I still cannot be on a boat today and would never think of getting onto a spinny ride!! :D I have been very active my whole life. I have run one marathon and over a dozen half marathons. I love to hike, ski and camp with my family and my husband and I have four children ages 23, 21,19 and 14. I have had headaches my whole life but no-one ever diagnosed them as migraine but I never went to the doctor specifically with questions about my headaches. In August of 2006, I was at the computer when a terrible vertigo attack hit me out of the blue. It lasted for 8 hours at least. I had 7 more attacks that fall of varying intensity and was diagnosed with menieres disease by several doctors. I was given the diuretic and lo-so diet plan which has never made a difference in my symptoms. Then, in December of that year, I went into an 8 month remission without any vertigo but still had tinnitus and fullness in my right ear. In July of 2007, it came back again but worse than ever. I was having attacks every other day and had over 50 (either vertigo or dizziness) that fall. The doctors were still convinced of menieres even when I told them that I was having tingling in my face prior to attacks and would get terrible headaches when the dizziness subsided. The menieres doctors had me on prednisone, methotrexate, antibiodics, sleeping pills, and herpes drugs. I went from 122 lbs to 100 in a few months and thought that I was dying. Finally, yet another doctor listened to my story about the tingling and headaches and sent me to a neurologist who believes I had MAV. I was put on amitriptylin and within a month and a half, all symptoms were gone. I stayed on 30 mg ami at bedtime and had 18 months of freedom from any symptoms. About 3 weeks ago, back it has come and I am once again sick and scared. I have upped my ami to 50mg in the past week and have eliminated all foods recommended in "Heal your Headache." I have had two really bad vertigo attacks and one dizziness attack (4:30 am until now). I am meeting with the neurologist at University of Colorado on June 11. I hope that she can help me figure things out. Do you think that the amitriptylin isn't working anymore or haven't I been on the increased dose long enough? I am so glad to have found this board and look forward to getting to know all of you better! Dawn
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Re: POST YOUR STORY

Postby caglenn on 26 Jun 2009, 23:38

My name is Claudia. I live in suburban Chicago. My story is long but I will try to stay on track. In early 1998, my hearing started to decrease and I was diagnosed with otosclerosis. In June 1998, I had a stepedectomy on my R ear. I started to have vestibular symptoms almost immediately. The ENT gave me Valium and didn't have much advice. I could walk most of the time, but really ended up hanging on the walls most of the time and then using a cane. The systems lasted for 5 months. I had a HA for the entire time, but it was the dizziness, ataxia, vertigo and poor balance that was really disturbing. I also had a hard time reading. The symptoms finally abated with VRT.

As the vestibular symptoms decreased, my hearing gradually decreased over the next two years and I quit using the phone in Jan. 2000. The vestibular symptoms stayed away until 2004 when I was working with an agency to finish training my Hearing Service Dog. We were in a mall & I happened to look at an escalator and went into full blown vertigo. I could not walk out of the mall. For the next 2 years, these episodes would come & go, generally lasting 2-3 weeks at a time. Finally, in the summer of 2006, everyone that I worked with was hounding me to see Dr Hain so I made an appointment & saw him for the first time on Dec 18, 2006. He did a neuro work-up and had me do a Valsalva maneuver (bearing down). I nearly fainted. I walked into his office but brought a cane with me. It was only with God's help that I made it across Michigan Avenue in Chicago without getting killed(I was dumb and went to see him by myself). He felt that the issue was with the prosthesis from the stapedectomy surgery way back in 1998. I had surgery to remove the prosthesis in April '07. The prosthesis was completely dislocated and the surgeon stated that 1/2 the oval window was torn open, so he did a fistula repair at that time. I was so sick after that surgery that, literally, I could not move my big toe without having a vertigo attack.

Unfortunately, the surgery did not solve my vestibular issues so the next step was a series of gentomycin injections into my right ear to chemically "kill off" the inner ear. I was using a walker or a wheelchair by that time and not moving around much. When I went in for the 2nd gent injection, the surgeon looked at me and got on the phone with Dr Hain to discuss having a Labyrinthectomy the next week. That was August 30, 2007. I have used a wheelchair for the most part since that time. Dr Hain said my brain and left ear have compensated pretty well since the last surgery, but unfortunately the headaches have become a big issue. So the current diagnosis is MAV. I have ~60 migraines a month.

I have also had issues with tremors(Dr Hain sent me to Mayo to check those out), but that has been helped (because of acetazolamide?). Now I only have tremors or increased tone in my right hand if I am really feeling awful. By time the tremors come, I have difficulty moving my body (especially my legs) and difficulty talking. All I can do is go to bed with ice surrounding my head. Verapamil did not help, but Klonopin has helped a lot. I am on Effexor & Propanalol for the MAV and am currently increasing the Effexor to 150 mg. If the migraines continue, we will add Topamax to the mix. That's my story. Sorry it is so long. I think Dr Hain is a great diagnostician and a great listener. He types all our conversations so I understand him quite well. It's not often that you find a brilliant mind and a compassionate person in one doctor.
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Re: POST YOUR STORY

Postby Brenda on 04 Jul 2009, 06:47

Hi everyone

I’ve been reading for a little while now and thought I would share my story with you. I had my first vertigo attack at 19 years old, I’m 57 now. It came out of the blue as I woke one morning. It passed after two hours and I was able to get up and I thought no more of it. Had had headaches from aged 13, proper migraines from early 20’s.

I got episodes of dizziness upon waking for the next 20 odd years. They would knock me out for 24 hours, then I’d be able to get up and would have a sinusitis type headache for a week, then I’d be ok ... more or less.

That was until I was 45 and had one of those 24 hour dizzy turns that just didn’t go away. For the first time I went to the GP about it. Viral labrynthitis. Told it would clear up in six weeks. It didn’t.

The last twelve years have been a nightmare. I’ve tried cinnarazine, piztotofen, stugeron, buccastern, bendrofluazide, flixanese, promethazine, propanalol, serc, but basically nothing has worked.

I’ve had all the vestibular tests – negative. I refused the water in the ears one as I’d not long come out of my scariest experience of all - three weeks in bed unable to move a muscle – and I was frightened the vertigo might be set off again. But everything else showed clear. The only positive I’ve ever had was when I was told that my reaction to one of the electronic visual tests was typical of someone with migraine.

An MRI scan and CAT scan both showed nothing. Meniere’s and MS were ruled out. And when I was told it was migrainous vertigo by one hospital and vestibular migraine by another, I thought they were having me on. I’d never heard of it.

Anyway, long story short. As nothing seemed to be working and all meds and vestibular exercises seemed to make me feel worse rather than better, I decided to have a break from them all. I went on the internet and did some research and eventually came across Heal Your Headache. And it talked about vertigo in relation to migraine! First time I’d come across that.

Following the migraine diet has made just the biggest change for me. It has worked better than any medicine I have ever taken. For the first time in years I was able to open my curtains on bright sunny days, noise began to bother me less and less and my standard of living improved immeasurably.

But I was still really disabled compared to “normal “folk. Then I learned about hypoglycemia, something else I’d never heard of and recognised myself in what I read. I factored that into my diet. More improvements, enough to allow me to go outside the house other than for hospital visits. Brilliant!

Then the big one. Stress. I still haven’t quite got a handle on that one yet, but I’m getting better. Along the way I managed 12 months doing a freelance job from home. But had to give that up when things got bad again, as they do from time to time, and the deadlines were just causing too much stress.

I got past that and was doing really well, improving all the time, until in 2006 I had to have a hysterectomy and oopherectomy. I’ve never been as well since then – MAV wise.

So now I’m struggling again with dizziness to some degree 24/7, although I’m still a thousand times better than I was to start with. Walking is a problem on bad days, I look like a drunk!

Although you get used to things don’t you to a degree and after a while that initial terrifying fear of what on earth is happening to you dissipates into a sort of reluctant acceptance of oh, no here we go again type of feeling, accompanied by sheer unbridled frustration of being scuppered again.

At present I'm looking into histamines and opioids as triggers, as well as leaky gut. I feel I'm missing something. I've lost over half my life to MAV and that makes me so sad and also angry. So I'm still trying to learn all I can to see if I can find that last missing link.

Anyway, I appreciate this forum so much. So nice to be able to read of folk experiencing the same weird things as me … that makes me feel so normal for once!

Brenda.
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Re: POST YOUR STORY

Postby TammyM on 03 Aug 2009, 00:41

Hi everyone. I stumbled across this website and I think finally there may be hope for me! My story is a little complicated because no Doctor seems to be able to tell me why I have this vertigo and I am desperately seeking an answer!!! This really kicked in on me in the spring of 08, I would wake up in the morning and just not feel right, I would have a bit of a headache,stiff neck, numb hands,feel dizzy and shaky, like I was nervous but I didn't have anything on my mind, I pretty much kept going on with my daily activities, I had had a few spells like this before on and off for probably a year and had always attributed it to too much coffee not enough food. By the fall of 08 I was down!! I had daily headaches, earaches,dizziness, blurry vision and one time double vision, my neck and shoulders hurt and my muscles were incredibly tight so much so that I didn't even want to turn my head.I finally went to the doctor (hadn't seen one in at least ten years) who said I had a sinus infection and fluid in my ears that was causing vertigo. I was prescribed antibiotics, meclizine and sudafed. 8 weeks later I still didn't feel better, I basically was an invalid from september thru the beginning of november. During this time I thought that my head was literally going to break in half I swear it even made cracking noises, some of this I think may have been the sudafed, I would feel a bit better when it wore off, but walking and moving around was near impossible, it feels like I'm in a funhouse with the floor moving. Went to the docs again and again here is what they discovered,
1 c5 c6 disc rupture, c6 c7 herniation
2 tmj
3 vestibular hypofunction (left ear)
the docs still don't know why I have vertigo, I got the bite plate from the tmj do, do the vestibular exercises, and have finally started to loosen up my neck and shoulder muscles due to muscle relaxants and proper physical therapy.Through all of this I have not really treated the headaches, and at times they are really bad, I didn't even consider that they could be the cause, I thought they were just an added bonus to my miseries.
A few days ago I went to see a neurologist who asked about the headaches and has prescribed propranolol for me. I really hope this stuff helps!!!!
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My Story

Postby wave on 02 Sep 2009, 08:35

My symptoms began about 6 months ago. They began with imbalance. I felt like I was
leaning or rocking, like on a ship. At times it would make me motion-sick. I began waking
up with nausea and weakness. I'd often get up and shower, but then became very sick
and have to lie down for 4-7 hours, with extreme nausea, sensitivity to sounds and light
and sometimes tinnitus. Without any meds, this happened for 3-4 days in a row, separated
by 3-4 weeks.

My GP thought it was an inner ear infection, but when it continued for 2+ months, he
ordered an MRI. I then went to an ENT and a neurologist. Over a couple of months,
my imbalance became almost constant, but varied in intensity. I also had trouble with
coordination that would last about 2-3 minutes -- using hands, especially. When very off-balance,
I'd have difficulty starting speech, or I'd stutter for a minute, but then be okay. I'd also
get nystagmus and some double-vision that would come and go. Fast moving visual
stimuli triggered or worsened my dizziness. However, I've never had rotational vertigo.

The ENT did lots of tests -- ENG, VEMP, audiogram and others. He detected some
problem with my right inner ear, but he said my symptoms seemed neurological and
wanted me to see a neurologist.

The neurologist saw me over the last few months and tested for about everything that could
cause the symptoms; all blood work came back negative -- nice to know I don't have Lyme
or syphillus, among other things. He said my "deficits" were all common to multiple sclerosis.
He especially noted that hot showers greatly worsened them. But, my open MRI was negative,
so he said it was not likely MS, but could be "vertiginous" migraines. He wanted
to start me on preventive meds, but I was getting better my last visit, so he said
to keep a diary and follow-up in 6 months to plan another MRI.

At my first visit, he prescribed my Meclizine and Zofran. My GP had given me Valium.
When the imbalance makes me motion-sick, I take 25mg of Meclizine. I find that
relieves the nausea, but doesn't do much for feeling off-balance. I've never taken
more than 50mg/24hr and usually 25mg/36hr. A 5mg Valium gives me some relief,
but I rarely take them and it doesn't help that much. I haven't tried the Zofran yet.

I never noticed headaches, at first, just extreme nausea and balance problems. Oddly, while
my imbalance and other symptoms have much improved, I've begun getting headaches
and facial pain. When I get those, I also get off-balance again. Now, mostly smells and
heat trigger my symptoms, though I'm rarely feel completely normal, balance-wise. Now
I've had headaches that last 10 hours. I still don't think of them as migraines because the
throbbing comes and goes, rather than build and become intolerable. It builds a bit, but
then goes, then comes.

Certain smells have made me almost immediately sick since my 20s and still do now,
as does heat. My mother, her mother and my sister all have or had "regular" migraines.

I'll update this when/if the Dr's settle in on a firm diagnosis.
wave
 
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Re: POST YOUR STORY

Postby Timeless on 03 Sep 2009, 22:00

Wave,

Please keep us updated and feel free to join in the discussions below. When will you go back for your next visit?

Have you gotten the book yet Heal Your Headache and have you had a chance to read it. Let us know what you think.

Hope you are having a better day...Timeless
Time is a companion that goes with us on a journey. It reminds us to cherish each moment, because it will never come again. What we leave behind is not as important as how we have lived.
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Re: POST YOUR STORY

Postby Radhika on 05 Sep 2009, 01:32

Hi everyone, here is my story

I had a history of ENT issues as a child but thought I grew out of it. for most of my adult life I had no problems.
In July 2002 I moved to Dartford, Kent, England which has high levels of pollution due to the M25 and Dartford tunnel. Diagnosed with asthma in 2006 and suddenly started having hay fever in the summer. I spent the previous year in Switzerland on holiday twice and after that had constant popping and fizzing in my ear with a fullness feeling and I put it down to aeroplanes and mountain altitudes. In June 2004 I had a preterm baby who sadly died at 15 days (another long story) and in June 2005 I had a full term daughter by C section - now 4 years old. In April 2007 I had a miscarriage. So that is 3 pregnancies in 4 years. Since then my periods have completely changed their pattern (I'll spare you the details) but I put it down to hormone overload. I am now 40 by the way.

In October 2007 I had a bad ear infection in my left ear and my ear drum perforated and a load of gunk kept coming out. I was also getting periods of nausea after getting out of bed. This continued on and off for 6 months and felt there was some hearing loss at times. In 2008 had hearing test which and CT scan which were normal. I decided that year to get fit and lose weight. I joined and aerobic class but the ear infection meant I had to stop because that type of exercise made it worse. I also joined a weight loss group which meant I cut down on fatty dairy and ate a lot of low fat yoghurts which I didn't do before. I started doing sit ups and noticed that I would feel dizzy and unsteady but put it down to change of diet and exercise.

The lady who ran the weight loss group said that the programme should not make me unwell and I was now experiencing severe light headedness, dizziness and spinning, floaty sensation after every meal.

My GP did all the usual tests but all came back clear. In August last year I had a terrible attack which left me breathless and with palpitations and was rushed to hospital but they found nothing except my red blood cell count was low - this proved to be a red herring. I ended up having a load more tests, including an endoscopy.

I noticed that the attacks would get increasingly worse each day and become longer. Then they would crescendo up to a massive attack which would last for most of the day and I would need 2 days to recover. This was usually about the time of my period. Then I would have a couple of days without any attacks and then it would slowly build up again. The symptoms would be nausea, dizziness, spinning, aversion to light and sound, aching limb, breathlessness, palpitations. I felt like I was drunk or trying to walk on a moving ship. Simple daily tasks would finish me of, especially emptying the dishwasher, walking up the stairs, driving round car parks and going into shopping centres and particularly supermarkets.

My GP eventually diagnosed labyrinthitis and put me on something to sedate the middle ear and this was like a miracle drug but my GP did not want me to take it long term as it had side effects. So I weaned myself off it and within weeks the symptoms started again and I had to take time off from my new job. My GP decided to send me to an ENT at Medway hospital, Kent, who did another hearing test during which I had a bad attack. He was quite concerned as he did not recognise these symptoms and thought it could be neurological. I had an MRI scan soon after. They day after the scan I had the worst attack ever and ended up in hospital with severe breathlessness and palpitations and vertigo but all my vitals were fine so I had to go home because they had no idea and said I should see what the MRI results showed.

Fortunately I had kept a symptom diary for a one week period in August last year and the doc at the hospital said that was helpful but she had no idea what it sould be. Fed up by now I sent a copy to the ENT consultant who immediately referred me to his colleague in the same hospital. When I saw this neuro-otologist, a month ago, it was obvious he knew what I was on about. He runs a balance clinic – one of only 3 in the UK.

He explained that the brain is like a jug which fills up with daily activity and gradually empties as the brain processes. However, my brain does not empty sufficiently quickly before the next load of activity and stimuli so it overflows, causing a migraine attack which I can have even if there is no pain. This is why the attacks escalate over time and then the jug completely spills over and empties so I have a couple of days of no problems. In my case the migraines trigger spasms in the blood vessels in my brain and depending on which part of the brain is affected , I have vision, sight, or balance/vertigo problems etc. The brain then tells the rest of my body to panic and I have breathlessness and palpitations

He put me on Nortriptyline and told me to cut out the 6 C’s – Cheese and other dairy, Caffeine, Cholcolate, Citrus fruits and bananas, Chinese take aways and other MSG, Chianti, other red wine and alcohol. He did not tell me to cut out any other foods and he also called it ‘a type of migraine’ but did not mention MAV so I am only guessing that it is MAV. I found this site by googling migraine and vertigo. I am also supposed to be doing exercises to retrain my balance and will be having more physio for this and learning how to breathe properly.

All in all the diet is working and so are the meds, although I have wacky dreams. I feel so much better but have had a few setbacks when ingesting trigger foods by accident. Plus I think I am affected by other food triggers but I will discuss this further when I see him again in November.

This website has been really helpful especially with food concerns and advice. Thanks a lot.
Radhika
 
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CONSTANT dizziness? (feeling like rocking on boat)

Postby DizzyBAT on 08 Sep 2009, 07:25

Hi,

I've had CONSTANT dizziness and ringing in the ears for 15 years. Doctor to doctor and no positive diagnosis except an ENT doc who was able measure my dizziness with a test involving eye movements.

MY QUESTION: Is constant dizziness a symptom of MAV? I'm talking not so much spinning, but a feeling every second of the day that I'm rocking on a boat. It doesn't change whether I'm standing, walking, or lying down, whether my eyes are opened or closed.

Thanks,
Brian
24/7 rocking on boat, bilateral tinnitus, low-grade headache, since Dec. 23, 1993. Diagnosed MAV at UCLA in Feb. 2010; started treatment Jan. 2011.
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Re: POST YOUR STORY

Postby MAVLisa on 08 Sep 2009, 07:51

dizzybat - That is absolutely a symptom. however, many neurologists do not understand MAV. It could go on and on for years if untreated. I am so sorry you're suffering for this long. People might not see your question under the post your story category. Why don't you write a new question in the general discussion section. People here are so supportive and helpful. btw - I have rocking as well, but not true spinning vertigo, like many on this site.
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Re: POST YOUR STORY

Postby MelissaH on 19 Sep 2009, 04:55

My name is Melissa and I am a 28-yr old female. My MAV symptoms started about 3 years ago, when I fell on the ice in a particularly brutal blizzard and whiplashed my head, causing benign positional vertigo. I was hardly able to function for about a month or two- with severe room-spinning vertigo, until I did the BPV exercises and was able to overcome it. However, I began to notice a dull, fuzzy feeling in my head that never quite went away and was getting worse as I spent time on the computer at work. My ENT that treated me for BPV diagnosed me with MAV and put me on verapamil 3 times a day (I forget the dosage). It definitely has helped some, but the dizziness has never completely goneaway. She told me that I should just stay on the verapamil and to date, that is the only drug I've tried for this problem.

In addition to my MAV problem, I have hypothyroidism and currently take 1.5 grains of Armour Thyroid daily. I have noticed that when my thyroid levels are off, my dizziness gets worse, but my endocrinologist doesn't believe there is any link. I'd like to get more information on this possible connection if anyone out there thinks there is one.

For a period of about a year, my MAV was tolerable to where I could work at a computer and go out with my friends. However, in the last 4 months or so, it has come back full swing with constant head pressure, motion intolerance and extreme lightheadedness.

As far as history, I've had migraines all my life since I was about 12, but after the hypothryoidism treatment which started about 5 years ago, I rarely get the extreme migraine pain anymore- instead I'm just dizzy 24/7. I also have a history of motion intolerance, I could never read in a car or go on amusement park rides. Being a grocery store or mall has always been hard on my senses, and my head has always gotten fuzzy with too much light and commotion.I find that oversleeping and undersleeping are also huge triggers for me, but it's also hard to not oversleep when I'm constantly run down and my head feels like it weighs 100 lbs. I've found that drinking is a huge trigger, as well as caffeine, and I've tried to cut down on these things.

Does anyone else find the computer screen to be a huge trigger? It seems the movement of my eyes during the day can cause me to go from a pretty good day to a terrible one in a matter of hours and also brings on headaches from eye strain (I've had my eyes checked and they are fine). On days when I'm not on a computer, I feel much better, but unfortunately my work requires me to be.

That is my story! I try to not get depressed when I read how long people have suffered from this on here. My husband and I would like to start a family in the next few months, so I'm wary of trying a bunch of new meds right now, but would love to just feel better!
MelissaH
 
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Re: POST YOUR STORY

Postby TheSpinMeister on 26 Nov 2009, 12:30

Hi Melissa -

I'm brand new here ....

But yes long term staring at the computer is a definite trigger for me. I switch back and forth between a cube job staring at a computer for a few months and then working on remodeling homes, and being out and about doing physical labor type stuff. I was doing the remodeling stuff most of this year and had 0 symptoms of vertigo or dizziness, and then as soon as I went back into the cube life this fall, whammo, it hits me again. Nothing as severe as most people here, but I'm still pretty uncomfortable, and did have to leave work one day as the computer kept spinning. For me, picking up reading glasses a year ago really helped knock down my symptoms alot. I'm still trying to determine if I have MAV or not. I just found out about MAV yesterday after my first appt w a neurotologist (did I spell that right?) and he wants to do some testing to determine if his instincts about me having MAV are correct. The thing is I can go months w no symptoms then have a flare up. But only twice (late 2007 and early 2008) have I had 'drop attacks' - where the room was spinning so badly I had to lay still, drenched in my own sweat, and swearing that as bad as I felt, if it continued for more than a day I'd run out into traffic and start to play. Each of these lasted about 4 hours. I don't know how some of you folks have dealt with this super severe stuff when it is so chronic.

Most of the time when I am experiencing symptoms its a general dizzy feeling, with a lot of funky perspective issues with my eyes. For example, if I go to a pro game of any kind and sit in the upper deck I'm guaranteed to get dizzy and nausous from looking down at the field then over to my friend then back down etc.

The doc I saw yesterday - supposedly the best at this inner ear.vertigo stuff in our city - told me to get off of the 3 Cs - Caffeine, Chocolate, and (Yellow) Cheese. Those are migraine triggers. I do not ever have migraine headaches, but he explained to me what migraine really means, and he thinks that I have the vestibular migraines.

I'm getting an MRI next week, and the doc also wants me to do their in office battery of tests that they told me would make me sick. I passed on that one for now! Not feeling bad enough to be motivated to make myself sick. I’m going to post a question on another area of this board to get people’s feedback on those motion tests.

Ok – there is more but I gotta run. This stuff certainly sucks and I have a bad feeling I’m in for more of this in my life before I’m through, so want to learn about it.

Jay

(PS I’m in my mid 40s)
TheSpinMeister
 
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I thought I was going mad.

Postby TCW UK on 04 Dec 2009, 03:35

What a relief
to discover this forum, I thought I was going mad.
I don’t know if I have MAV but I seem to have many of its symptoms. My GP didn’t seem to know what to do with me, but at least arranged an appointment with a neurologist, although (good old British NHS) this isn’t until February 2010. Here’s a rough idea of my story:

*Always had painful migraine attacks, lasting 1 to 7 days at a time, often with neck pain/stiffness. Sometimes once every few weeks, sometimes longer gaps.
*Last few years I’ve had regular visual disturbances without pain - flashing vivid black and white patterns, often but not always after seeing glare or a strong contrast between light and shadow.
*For the last 3 years or so I have odd occasions (say once a month for instance) where I suddenly feel as though my eyes have gone out of focus and the room whips round suddenly. This lasts only a minute or so and leaves me tired and weak and nervous - I’m not a ‘nervous’ type usually.
*Increasingly over the last year or so I’ve become hyper sensitive to light, sounds, smells which either give me a headache and/or make me feel queasy and/or make me sort of panic that things are getting out of control - I can’t explain it properly. Almost a feeling of impending doom.
*Shop lighting, car lights (indicators/brakes in day time as well as night) and traffic lights, sunshine, perfume, repetitive noise - all make me shakey-eyed, tight-headed.
*I’ve gradually become more and more ‘tight headed/spaced out’ in that the world seems warped - as though one eye can only see things in the distance and one eye can only see things close up and as I move my eyes up/down, side to side, it makes me feel as though I’ve been stunned by a whack on the bridge of my nose (without the pain!)
*I often feel as though one side of my head has frozen solid.
*My balance is terrible - I often have to hold onto walls, etc. The ground sometimes looks as though it’s moving.
*I find it really, really difficult to concentrate when I’m in spaced-out mode so I’ve lost interest in many things - sometimes I can’t even follow a conversation in a group setting because it’s so difficult to look from one person to the other while also taking in what’s being said above background noise.
*Things have been so bad for the last few months that I stopped working a month ago - I couldn’t cope any more with the open plan office environment - the lighting, telephones squealing, humming equipment, cooking and perfume smells, computer glare, blah blah blah.
*I have other health issues which I believe are not connected to this - a kidney problem which gives me very high blood pressure, for which I’m on meds, and I had a heart valve replacement 3 years ago so I now have to take anticoagulants daily. I have wondered if the meds have caused the increase in severity of symptoms over the last 3 years.
* I have also wondered if being female and fifty means my hormones are doing weird things to me.

Luckily I have a very, very understanding and sympathetic husband. But I’ve not had the courage to tell my friends exactly the kind of pickle I’m in - I’ve just said that I’m getting migraine a lot. I just wouldn’t know where to begin telling them these weird symptoms, and it all sounds so whiney. It took me ages to pluck up the courage to tell the GP exactly how bad I feel, as I was sure I was just turning into a hypochondriac.

Anyway. Thank goodness I found this forum.
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TCW UK
 
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Re: POST YOUR STORY

Postby scott on 04 Dec 2009, 11:44

Welcome to mvertigo TCW. Everything you've written is textbook stuff and you sound like you've had the misfortune of inheriting a "migraine brain". The good news is that by making lifestyle adjustments and/or using preventative meds to stop the cortical spreading depression (CSD) behind migraine, you can regain control of this and enjoy a mostly normal life.

Scott :)
Probable vestibular neuritis in 2003 which kicked off chronic migrainous vertigo.
Treatment: lifestyle mods, low-dose paroxetine, valium as required.
Twitter: @mvertigo_guy
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scott
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