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Specific Illnesses & Conditions VM/MAV
321

Hello everyone,

I am 47 years old. My story begins on February 17th, 2013. My monthly friend came that day and I did not protect against two known hormonal migraine triggers for me: deyhdration and hunger. My daughter had a swim meet that day so I was in a humid pool arena and did not drink enough water. Dinner was much delayed and bang–I had one of the worst hormonal migraines ever. Previous to this, I usually had one migraine a month (and I bet some months I did not have one at all) and they were very mild. I would take 3 ibuprofen and in 2-3 hours they were gone. This one took a while to go away. I should also mention, I was crazy with stress that week and the few weeks before. I have twin daughters who were deciding where to go to college. They’re top choice and our top chocie for them turned out to be the school that did not offer them any merit money. So, I was stressed about paying for college.

Two days later I was feeling better from the migraine but still blah. I had told the girls we would take the train into New York City. We did. On the drive home from the trian station, I had out of the blue panic attack about driving at night. The next day I came down with full blown sinus cold (although ENT now says he just thinks it was all part of the migraine.) I love movies and I had yet to see LIfe of Pi and the Academy Awards were the next day. So, I went to see it in 3D because that was the only offering. (I hate 3D). Fast forward, I go to doc and get antibiotics for sinus infection. I feel better from that in a few days, head to dentist for cleaning. That night, I become extremely nauseous and watching TV makes me motion sick and dizzy. I go back to Dr., fill doc gives me Zofran for nausea. That weekend my ears are so full, I pop my right ear and then have excrutiating pain in my left ear. I go back to Dr. to see if there is an infection, she says no. I am still sensitive to light, sound, movement, etc. She diagnosis Labyrnthitis and gives me meclizine. I think get my monthly friend a week early and have another migraine. Two tylenol take care of the head pain but the other symptoms intensify. Sensitivity to light, sound, dizzines, motion, etc. Next, a trip to the Neuro. He concludes it is vestibular (also orders and MRI which turns out fine). He saw a Nystagmus.

Fast forward to trip to dizzy specialist who is an ENT but runs the Dizzy and Balance Center in Hartford. After hearing test, balance test and the eye goggle test he concludes no Labs, but Vestibular Migraines. He wants me to try diet first and then see him in 3 months to see how I am doing. I am actually not doing that badly (compared to posts I have read, although it makes me worry that I could wake up and have horrible episodes.) I am still sensitive to light and sound, I can only handle maybe an hour of TV per week. I still feel ear pressure and sometimes ear pain. Nausea comes and goes. I typically have a daily dull headache that usually ges worse at night-- but not in the last few days. Could be bc Dr. gave me a medrol pack to try to break it. Competing noises are my worst enemy right now–so if there are multiple conversations going on or background music, etc. it really sets me off. My ears start throbbing and the dizzies come. I wear earplugs when I can.

However, I try to look at all the positives:

I definitely watched way too much TV (If you knew me, you’d know that this is a huge life changer for me–I am an entertainment addict–however, it is all in perspective–I wake up everyday and that is a great thing!)
I am saving money, I barely go out to shop or out to eat.
I am eating better on this diet (still learning the ins and outs of reading ingredients and trying to find that hidden MSG)
I have learned how incredibly supportive my spouse is–he has been great during this.

P.S. The reason I mention the train ride to NYC, 3D movie and Dentist visit–I am convinced that those 3 things contributed to the water going above my head. Sometimes I think if I just didn’t do those two activities maybe this would not have happened. However, hindsight is 20/20 and time to deal with the present.

Thank you all for sharing your stories and reading mine. I loved reading the success stories. I have been on other sites but this is truly the most encouraging. I had to back off the other one’s because they were making me crazy.

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Hi everyone,

I am 37 years old and I have recently been diagnosed with MAV.

From as far back as I can remember I have suffered from vertigo. It was not always present and I led a very active life. Was a snow ski instructor for many years and travelled extensively overseas on my own. When my ski instructing ended I worked in the medical industry and my last job was as a Practice Manager at a very prominent centre here in Sydney. Sept 2011 I was sent to an ENT on one of the recommendations of one of the doctors I worked for to help with my vertigo. He put me on Serc and told me to cease once symptoms disappeared. That was 2 weeks. No more symptoms till February 2012. Would walk to the cafe to get a coffee and while waiting had a severe loss of balance, increased heart rate and sweating. Had no idea what was going on and put it down to extreme stress. May I note at this time my work was putting me under extreme amounts of stress and would go home everyday extremely fatigued. Prior to this I was playing tennis 4 times a week, spin classes, running, 2 gym sessions a week etc.
Then while sitiing at my desk I couldnt see the screen and then an almighty migraine started, Im talking headache migraine, never had one in my life. Was given panadeine forte and layed down in one of the treatment rooms for 2 hours. Then I was OK. But I kept having these awful spells where I would be pulled to my right and complete loss of balance. Then came the clincher.
March 22 2012 was a normal stressful day at work and after lunch I had what I call The Big Bang. Pallor, low BP, feeling like I was going to pass out, tremors, complete loss of balance, nausea. This was severe, I thought I was seriously dying. Walked out of the clinic and couldnt cross the road. Sat down and was thinking I just need to get home, (only lived up the road). Got home and got into bed and forced myself to sleep. The next day nothing had changed and had my sister take me to the GP who diagnosed me with Labyrinthitis. Gave me a shot of Stemetil and told me to start taking the Serc again. Felt a little better till later that night went to meet my girlfriends for dinner and it all happened again. Had to walk out and get home ASAP. Then started my 4 months of becoming bed ridden. Moved into my parents as I couldnt even get to the bathroom or take a bath unaided. Horrendous. Went to an ENT and he said labyrinthitis and prescribed me valium to take before bed for a week. That calmed the anxiety feeling but not much else. Went for a second opinion and he ordered for blood work, MRI, and balance and hearing tests at Dr Cremer’s. All came back negative except for the caloric which noted 53% loss of inner nerve damage to my left ear. The ENT concluded vestibular neuritis and sent me home cawthorne exercises. Gradually started to feel better but havent been 100%.
Started acupuncture and massage and chinese herbs July 2012 and noted some ease of symptoms for a day or two after visits but would come back. Shopping centres, airports, loud traffic, restaurants, bars etc have been an absolute no no for me. So I ahve been relatively house bound. Then came another severe attack, couldnt get up from the lounge, everything bouncing around, then the anxiety kicked in. Straight back to the GP who sent me to a neuro physio at St vincents hospital, diagnosed with BPPV. Performed the Epley and felt 90% after 10 minutes, yay…Im cured…till 6 weeks later it came back and went back to see her and she said couldnt be BPPV. Checked me again and said yes it is. Performed the EPley and felt OK again. Not 100%. Have had good and bad days. There was a period where there were 2 bads a week instead of 6. Thought I was on the road to recovery. Not so.
All this year I have been having the same symptoms but started with incredible pain in my neck and shoulders and put it down to the broken shoulder i sustained in 2010. Not so, my GP then sent me to Dr Granot in BJ.
He diagnosed me with MAV. I completely broke down in his surgery as I just cant live like this anymore. He requested a redo of my balance tests and hearing. Went and saw my ENT on Monday as requested and he couldnt believe I hadnt recovered and he felt so bad. He kept saying “why didnt you come back, there is something seriously not right and you need to be helped” such a lovely man but I didnt want to keep going back as all the advice I was given was that it would take 6-12 months to get better.
Hearing is normal, not sure about balance tests till I go back to see Dr Granot.

He has started me Sandomigran which I am now on day 3. I certainly wake up dizzy in the morning, but this is a different kind of dizzy (one I can handle) and goes away by about 10am. I know this is a preventative drug for MAV, but I have noticed a significant improvement. I am smiling when I wake up as the vertigo isnt there, and I am able to sit up at my dining table for my morning peppermint tea which I would always have to lie down as the pain in my neck and shoulders was so intense. I am hoping that it just isnt a placebo effect on me and I am now taking something for my symptoms but they seriously have improved. I know it is only day 3 and am looking forward to being able to manage this condition as I am aware that I am in the same boat as all of you.

Also, I have traveled a few times during this albeit with assistance. Sunglasses on, earplugs in, valium taken etc. Bright lights and business in the airport is horrific. Also taken two O/S trips where I was in need of a wheel chair as I couldnt even walk, I mean, severe nausea, loss of balance, drop in blood pressure, pallor etc. I am fine when taking off and flying, but standing up once the plane has landed sends me into my hellhole again. I even know when the cabin doors close and open due to the pressure change. My sister thinks that Im a marvel haha always looking for the positives.

I just want to be good enough to resume my active social life which is now non-existent, my active lifestyle and be able to work again. Even contemplating writing a novel as I cant see myself back in the workforce anytime soon.

I have read many of your stories and I am so glad that there is a forum for us. It is very difficult for people to understand the absolute horrendous nightmare there is.
I look forward to all of your support and know I will give back any advice I can bestow on any of you.
PS. Love hearing the success stories, we have to have a shining white light at the end of this dark and gloomy illness.

323

Snowflake
Just wanted to say Hi & Welcome! Sorry you’ve landed in this horrendous mess but thank goodness you found Dr G! He was my knight in shining armour too! Now I’m well on my way to getting my life back & you will too. Good on you for keeping so positive.
Barb

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Hi everyone,

I’ve just registered for the forum, although I’ve used it as a resource for months. My story starts many years back when I started getting motion sickness while flying. For about 10 years I only had problems while flying. Then a few years ago the motion sickness started happening in cars, even when riding in the front seat. I was also having some lightheadedness and dizziness when walking through stores. I first went to the doctor for this in the fall of 2010. I was cleared by the ENT and sent to the neurologist. The neurologist performed tests, which led to more tests, and finally to an inpatient seizure monitoring stay. Those results were inconclusive and I was referred to a cardiologist who did a tilt table test and diagnosed POTS syndrome. Up until this time I had no trouble working 2 jobs and caring for my preschooler. When I was diagnosed with POTS, I made numerous medication and diet changes. This was my “big bang” event. I went from functioning really well to barely being able to walk around, being constantly dizzy and nauseated, severely fatigued, unable to sit in resaurants or ride in a car, unable to read on the computer longer than 10 minutes at a time, and eventually started getting chronic migraine headaches.

Fast forward to January of 2013. I went to the Mayo clinic in Rochester to be evaluated for POTS syndrome and determine why I was getting so much worse by following treatment that was supposed to help me. They diagnosed me with chronic migraine, including probable vestibular migraine, and chronic subjective dizziness. It turns out that many of the changes I made based on the POTS diagnosis were things that aggravate migraine. I’m happy to have a diagnosis and know that I’m moving in the right direction, but recovery is SLOW. Part of my treatment is to slowly build up my tolerance for working on the computer, so here I am!
Sarah

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— Begin quote from “Barb”

Snowflake
Just wanted to say Hi & Welcome! Sorry you’ve landed in this horrendous mess but thank goodness you found Dr G! He was my knight in shining armour too! Now I’m well on my way to getting my life back & you will too. Good on you for keeping so positive.
Barb

— End quote

Thanks Barb,

I had no idea what was happening to me for so long and felt like I was having a breakdown or was imagining my symptoms. Im sure you would understand that. You feel like you are going insane. Fingers crossed Im on the road to recovery. I must say I am starting to feel alot better.

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snowflake that is wonderful you are feeling better on the pizotifen, please keep us updated on your progress- I hope things keep getting better for you!!!

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I am 30 years old and new to this forum! I began to have the “classic” migraines with aura when I was a teenager. They would begin with aura which led into a severe headache, nausea and vomiting. I couldn’t tolerate light or sound. My migraines were so severe that they would often lead me to the ER. They were typically triggered by bright/flashing lights and food. My neurologist put me on a daily dose of verapamil which I took for a year and my migraines disappeared so my neurologist discontinued my use of the verapamil. Around this same time, I began using birth control pills to regulate hormones so it was either the verapamil or the regulation of hormones that did away with the “classic” migraines - until February of this year!

I had my first child in August of last year and was nursing him when I had my first classic migraine with aura in 10 years in February. It was the same as it was when I was a teenager - aura, severe headache, nausea and vomiting. Needless to say, I was unable to nurse my son that day which led to eventually weaning him throughout February. Around the same time of that migraine, my eyes began to “jump” or “bounce” about once a day - typically in the middle of the night when I was nursing my son. As an aside, he is not a very good sleeper so since August, I have been up every few hours with him throughout the night. Back to my vision - for example, I would be looking at my phone and my eyes would seem to jump or get off track and then it would correct itself quickly. It started doing it once a day then twice and then it continued with more regularity until it was doing it pretty constantly during the day and night. I also noticed that I would get a bit off balanced at night when I walked to get up with him. This continued throughout February until the first week of March when I began having a bit of dizziness and tingling in my hands and feet. I went to the ER to get it checked out and they did blood work (everything was OK except low potassium - potassium supplements helped but my levels keep dropping after I stop the supplements) and a CAT scan which was OK as well. The ER doctor told me he believed it might be something he referred to as a “complex transient migraine” - he just said it was some variant type of migraine without a headache. He referred me to an ophthalmologist and neurologist to make sure and to rule out anything else like MS.

The ophthalmologist said everything looked fine with my eyes so that was reassuring (no optic neuritis which is a symptom of MS - I also don’t have double vision which is another visual symptom of MS). Then I went to see a neurologist who after a normal neurological exam said he also believed it was a type of migraine disorder but wanted to make sure so he ordered a brain MRI. The radiologist report said it was “suspicious of demyelination” but my neurologist read the actual brain MRI scan and said that the couple of white spots were due to migraine. I read on this forum that apparently migraine can cause white lesions that mimic MS - which is also what my neurologist said. He also did a nerve conduction test and everything was normal. So he prescribed verapamil and nortriptyline to see if that would control what he referred to as a vestibular migraine/migraine associated vertigo. I began at 10mg of nortriptyline and it gave me insomnia and didn’t help my symptoms, so he increased me to 25 mg last night. He also suggested that I repeat my brain MRI in 6 months to 1 year just to make sure. When I went to see my neurologist for the first time, my symptoms were then jumpy/bouncy vision, dizziness, head rocking/moving, disequilibrium when walking, extreme fatigue and tingling hands/feet. During this time, my hormones also hit rock bottom. I had a female hormone blood panel done and I had NO hormones in my system, which my neurologist said could have caused all of this to rear its ugly head. He believes that regulating my hormones may help a lot. Up until I got pregnant with my son, I was on birth control pills since I was young, then I was pregnant and then nursing, so my hormones were pretty much regulated until I started weaning my son/losing sleep from him being up all night.

After seeing the first neurologist, I had two more “classic” migraines with aura - one so bad that I ended up in the ER because of the pain. During this one, my hands and feet actually went numb - not tingly but numb! Given all of my symptoms and the brain MRI, I wanted a second opinion so I went to another neurologist. He did another neurological exam, said something about one of my toe reflexes (which my first neurologist rechecked and said was fine) and then ordered a spine MRI (cervical and thoracic) and an evoked visual potential because he believed it was MS. He looked at my brain MRI and said he thought the white spots looked like MS to him, but when asked if they could be migraine, he said it was definitely possible. My spine MRI and evoked visual potential both came back normal - thank goodness! During all of this testing, my symptoms began to improve - the tingling all but went away, the fatigue was gone and all that was left was a bit of dizziness, head rocking, disequilibrium when walking and just a little jumpiness in my vision. The second neurologist said that because my other tests came back normal, he would not suggest a spinal tap but would just repeat the brain MRI in 6 months to 1 year - although he appeared to be much less confident in the vestibular migraine/MAV diagnosis (he actually didn’t really give it much credit at all) and more about the possibility of MS.

I have also been to an endocrinologist who again found that my female hormones are extremely low (at post-menopausal levels) and that the hormone aldosterone is at zero. He is doing further testing to see how to properly address my hormones.

So after all of the testing and appointments, both neurologists arrived at the same recommendation - wait 6 months to 1 year and repeat the brain MRI while treating the symptoms with verapamil, nortriptyline and vestibular physical therapy. All of that being said, I would love any input that anyone may have!!

328

Hi Everyone,

In December of 2012 I began feeling spaced out, and had a very hard time concentrating. I just felt “off”. I should also mention I was put on birth control and had been on my period for about three weeks. I went to my family Dr and she thought I was coming down with a sinus infection. She gave me a z-pack, meclizine and sent me home.

Later on that month I went to an overseas seminar and within a matter of a couple weeks my grandmother passed away and my father-in-law had emergency brain surgery. I was also under a tremendous amount of stress at work and it was at this point when the migraines began. They came once every few days. At first I thought it was a bad headache or some type of psychosomatic sympathy pain for my father-in-law…(lol what was I thinking!!!)

I ended up back in my family doctor’s office soon after because my dizziness was getting worse and I felt my body constantly pulling to my right. The lightheaded feeling I had and my “headaches” began to intensify. I would wake up in the morning feeling hungover. At times the walls would seem to move. Within a matter of days my migraines became chronic. I went from fully functioning to barely being able to walk. I was unable to drive, sit in a restaurant, go to the movie theatre, shopping, going to work was a nightmare…all I could handle was my couch and bed.

Luckily Dr. K referred me to a neurologist who specializes in balance disorders, and after a hearing test and several different blood tests that all come back negative he diagnosed me MAV and referred me to a migraine specialist.
She then ordered MRIs, MRAs, confirmed the diagnoses and I’m now on Topamax.
Topamax is a very difficult drug, which has given me a long list a bizarre neurological problems as side effects, but the benefits are well worth it!

I began taking Topamax 2/06. I’m finally at 100mg and I’m starting to feel much better!!!
I can drive (with some dizziness) and go to a restaurant and shopping with out getting sick to my stomach. I still have a ways to go. The migraines are still chronic and unpleasant but bearable. This last week I’ve had “clear” days that have made me feel somewhat normal again.

Don’t give up, there is hope! Three months ago I could have never imagined I would be able to return to any kind of normalcy…

329

thats wonderful zoe!!! please keep us updated on your progress with topamax! hope things keep improving!

330

Hi all,
I am Kris, female, 36 yo, runner and personal trainer. Very thankful for this forum. I hope I can find some answers and support here.

I would like to share my story. Would love to hear from anyone on their experiences.
Started with a facial tingling only 2 yrs ago. Diagnosed with migraine with aura. Never did have headaches with it. No meds were prescribed, as this was my only sympt (facial tingling). Worried me, since i thought that was some sort of scary sign for stroke… but anyway happend about 6 more times over next few years with no major issuses, just made me somewhat anxious, passed after 3 or so days.
This past week, i was running and my arms and legs and rt side face went tingly and heavy feeling. Stopped to regain myself and think about it. But sypmtoms continued and limbs got heavier and more numb feeling as did face. Went to ER. All tests donw, EKG, xray chest, blood. All clear. Went home.
Checked in with my regular doc next day as sypmptoms didnt get better, thought maybe migraine with aura progressing. And suggested brain scan and dye scan to rule out the ‘bad stuff’. ok, fine. being home things were worsening. of course i was anxious cuz i have never had such severe symptoms in my life. in fact never have had more than maybe 10 regular ole headaches, and def never a migraine. And not getting much of a migraine with this ‘migraine aura’ i was diagnosed either.
ok anyway, day 3 since all this started, vertigo began, i coudn’t drive, and i was also just dizzy. when i walk just feel like knees will give out. Very unlike me, never experienced these sypmt before. Other weird issues i have had are:
strong smells of floral or diesel, and when i smell this i feel on the verge of fainting.
lightheaded many times when i’m upright and walking.
when lying down, throbbing thru back of neck, sides of neck and crown of head.
pressure behind eyes intense.
twitchy musclses, mostly in legs.
a high pulse in back of calf.
facial tingling rt side. also in upper forehead and eye area.
tingling in limbs started to subside day 3.
fingers felt week like motor skills not as sharp, for ex: using microwave i couldnt push buttons i wanted to, my brain knew what i wanted but fingers wouldnt do it.
weakness in arms and legs, tire easily, which is so odd as im very fit.
2x i got numbess on rt side of tounge and slurred speech.
ER visit again as i was getting sick of being in bad, freaking out about all these fast symptoms and no friggin help with them. i went in demanded help. i have 2 little boys and active life, someones gonna help me.
they gave me valium (saying its best fast treatment for vertigo) and steroid, saying it should reduce inflamation with headache and other body issues im having.
have been scheduled to see neurologist tomorrow. im anxious.
i will say the steroid and valium have been the only thing to help me function. so im on day 2 on these drugs, and i am feeling well, but still dizzy. and when i wake in morning after drugs are wearing some, i can tell headache and dizziness is coming back.
today i am going to try no steroid or valium, just to see if this has all been some freak thing, or if it comes back… if it comes back ill be on the steroid/val straight away!
im super worried, this all seems very stroke like to me, im pretty young, very fit. i just cant understand it. i feel worthless and have never needed so much help. i feel a burden to all. please help explain any of this to me!

thank you
kris in nebraska

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*also was prescribed imitrex and it hasn’t helped any symptom. which i find odd! thank you all for listnening.

332

Hi all,

Thanks to your forum the puzzle pieces are all starting to fall in place! After 3 visits to a GP, a dentist, an endodontist, two otolaryngologists, a neurologist and finally an otoneurologist I finally have a diagnosis!! Went to the otoneurologist yesterday and diagnosed me with MAV. I didn’t believe him at first and immediately came home and got on the computer. I ran across this forum and some of the things ya’ll describe, I have been doing for years–ie: waking up repeatedly in the night, headaches that I would not classify as migraines etc.

So this is me now: 42 year old female living in southern US. Had an episode of very severe, debilitating vertigo (room spinning kind) at the end of 2010. Went to emx room to be told it was an inner ear infection. It never responded to treatment and I couldn’t follow up because we had no health insurance; after 2 months on the couch it finally went away on its own. Didn’t think much about it until this past November. In October I started having the feeling of fluid in my R ear which then turned into severe pain and pressure by November, sending me to the GP’s office who diagnosed me with an ear infection that we treated with antibiotics. By the end of November I developed, vertigo, was still having pain and pressure and fluid feeling; I was having difficulty hearing, had tinnitis, and was constantly hearing my cell phone ring when it wasn’t. He then said probably Meniere’s which we treated aggressively. I did not get better–just worse and developed the rocking on the boat vertigo and other worsening symptoms including balance problems. I ended up at the first ENT’s office. I then had a Videonystagmagram which came back: “bilateral caloric weakness” and “overall central weakness and etiologly”. I then went for an MRI to rule out acoustic neuroma. I tried twice and was usuccessful twice! I had a panic/claustrophobia attack both times–even the second time was the Open MRI and I had 5mg of Valium on board. And I’m not prone to panic attacks. The first ENT passed the buck and sent me to a neurologist within their practice. She was an idiot! I then referred myself to the second ENT who suspected either vestibular neuritis or acoustic neuroma, but wanted me to go to the otoneurologist to confirm. In the meantime we started Vestibular Rehabilitation Therapy which hasn’t made much of a difference.

Overall I have experienced: pain, pressure, fullness in my ear; mild hearing loss; pain and tenderness above and behind my R ear; daily tinnitis; auditory hallucinations–cell phone ringing, knocks on the door, people talking that aren’t there (second time in 3 years this has occurred); room spinning vertigo with head or body movement (non-stop since November); continual rocking on the boat vertigo no matter what position (non-stop since late December); balance problems, rocking back on feet, falling over, stumbling over objects, swaggering when walk and leaning to the right since late February; tingling and numbness in both sides of face and neck, but always worse on the right; a couple of episodes of severe lightning strike pain and burning in face (trigeminal neuralgia?); flushing in my face; muscle spasms in cheek and jaw muscles.; sensitivity to movement on TV etc; can’t stand to have anything near my face; periodic sensation of floating or being drunk without the alcohol; chronic fatigue.

I now can’t walk anywhere without using a cane and am taking Zoloft due to severe depression from being debilitated for so long and not having a diagnosis or treatment plan. The otoneurologist has said that almost all of these symptoms are related to the MAV, I have tendonitis behind my ear from not wanting to turn my head, hence the pain, and the dentist said I’m having muscle spasms from Temporo-mandibular disorder from grinding and clenching my teeth so much due to the stress I have been under lately. To be honest I was kind of hoping the diagnosis would be acoustic neuroma because that has a more clear-cut treatment and recovery plan–surgery, VRT, hearing-aid, better in two years, but, I am happy to have found this forum so I know that there is hope and plenty of success stories.

So the plan now is: stop VRT until I get the vertigo under control and start back up again for balance issues, take 400mg of Magnesium oxide once a day for two weeks and if that doesn’t work try increasing dose of Zonegran, take 600mg of ibuprofen 3x a day and a muscle relaxer 3x a day for the tendonitis, and I’m using a night guard and bite retrainer for the TMD. I hope all this stuff works!! I’m already taking a boatload of meds for reactive airway disease–which I got from having whooping cough for all of 2010 and most of 2011! BTW, I also have suffered from IBS for the past 20 years and finally got on an RX to treat that.

Sick and tired of being sick and tired,

Nicole

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I’m really sorry to hear how much you have been suffering nicole. It sounds like you have a good dr though and the right diagnosis. What mav meds have been suggested to you- or have any yet? I also grind my teeth like crazy and have had headaches from this my whole life- once I got a nightguard it improved the headaches and associated face/jaw pain considerably.

334

Thanks, Sarah. So far the only thing I am taking for MAV is MagOx 400. Once daily. The next step is to try Zonegran an anti-seizure med. We opted for that one over amitryptaline due to weight gain and other side effects. N.

335

Hello,
I am new here… 29 years old female.
I had an ear infection in November 2012 and it all started there.
I had dizziness due to the ear infection and it took a couple of weeks to go away.
I went to the ENT after being referred by my doctor to check my inner ear just in case.
It was there that I discovered polyps in my sinuses as well as a deviated septum. We assumed this was related to my headaches and dizziness. nasal sprays and what not later (oh and prednisone… eewwww… )
CT scan on my sinuses… they are a bit jacked up… but shouldn’t be causing this “rocking” sensation i get once in awhile, right??

Sent to a neurologist (a special one that deals with ears) and am going over my MRI on Wednesday but he has already started to diagnose me with Vestibular Migraines… in which my good friend directed me to this page.

I usually do not get headaches… just lots of dizziness and unbalance.I am a band director so cannot escape LOTS AND LOTS of sound on a daily basis . My dad thinks I should change professions but I love my job. :frowning: It is becoming dibilitating.
All I ever want to do is sleep and lay down. Afternoons are THE WORST.
When I have a “bad spell” it feels like I am constantly rocking on a boat.
These past few days are the first days I have experienced the bad headaches with the dizziness. I mean it hurts all over my head… especially around my neck.
I got a massage the other day and instead of making it feel better it may have made it feel worse?? Has that ever happened to any of you??

Sorry this story was so fragmented. I feel like I have told it a million times to all my friends and family it’s hard to type it out again.

UGHHHHHHHHH :?

Autumn

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Hi all! I am so happy to have found this board, like so many of you! I am a 30 year old mother of two young, sweet girls. My migraine story started back when I was a teenager. I would get what they called “cluster headaches.” I would wake up with migraines and basically be out of commission for the day. Sleep and pain killers would get rid of them. During my twenties I dealt with migraines, but they were manageable. There were a few times when I would get auras right before getting one, or one time half of my tongue went numb (which sent me to the ER as I feared stroke). I suffered a few anxiety attacks throughout my twenties, but I associated these with stressful times in my life, not my migraines.

I had my first daughter in 2010, and I had no problems with migraines. It was when I became pregnant with my second daughter that my problems really started. A little over a year ago I started having dizzy attacks. I spoke to me OB about them, and he said that this could happen in pregnancy, and it was nothing to worry about. A few months later I noticed I was having problems driving my car. It is really hard to explain, my eyes just weren’t focusing correctly. I even ended up avoiding the freeways because the higher the speed, the more my vision felt “off.” I gave birth to my second daughter in Sept. 2012. The birth was rather quick (we barely made it to the hospital), and I had no time for any drugs. It was a painful birth, in which I was hunched over on my right side really straining my neck. Everything went well and we were home shortly after. I did breastfeed, and about a week in I pinched a nerve pretty badly in the right side of my neck. A week after that I ended up driving to meet a friend for lunch. On my way home (driving on the freeway), I got very dizzy and ended up having to pull off the freeway and have my husband come and pick me up. That was last October, and I still haven’t been able to drive my car!

After this episode things just got progressively worse. My husband took me to minor emergency the next day as I thought I had a bad sinus infection. The doc put me on antibiotics and sent me on my way. I still wasn’t better after the meds were finished. I was having horrible, continuous migraines, facial pain, ear pain, vision disturbances, balance issues, anxiousness. I also started having neck pain and tightness. I made an appointment to see my GP and he put me on another round of antibiotics. These did nothing for me. I was continually getting worse, not being able to walk straight, feeling faint, nauseous; I would get hot and shaky and then get very cold. I also had trembling hands and my legs felt weird (heavy, tingly). My head felt horribly heavy and I couldn’t even sit up at the dining room table to eat dinner. The day after Thanksgiving I woke up horribly dizzy! Everything was spinning; I could not get out of bed. Going to the bathroom was horrible since I was sure I was going to fall over. After six hours of this, I had my husband take me to the ER. The ER doc ordered an MRI of my brain to make sure I didn’t have a blood clot (since I had given birth two months earlier). Luckily my MRI came back clear. He did say that I had a small spot on my brain, but it was so tiny he was not concerned and people who suffer migraines will get these. He diagnosed me with BBPV and completed the Epley maneuver. I was sent home with some meds and told me that I needed to see a physical therapist.

I still felt horrible after all this and kept having horrible dizzy episodes. There were a handful of times that I would get extremely dizzy and hot, and then I would have to use the restroom. After this I would get really cold and shaky and about an hour or so later I would get hit with a nasty migraine. At this point I was taking Advil every four hours for days and days. I went back to my GP and he referred me to a PT. About 10 days after my first ER visit I was back again. I was on the couch and all of the sudden it was like the whole left side of my body went numb. I believe this triggered a horrible anxiety attack and I was sure I was dying (I know, super dramatic). So my very patient husband took me back to the ER. I think right off the bat the doc thought I was crazy. He immediately brought up anxiety. They did an EKG, just to calm my nerves and that came back fine. He told me I was fine, I just had an anxiety attack. He told me to go back to my GP and get my thyroid tested (which I did and that was fine as well). All of my blood work has been great through all of this.

I started physical therapy which was awful! It only made me feel worse. My PT diagnosed me with a strained SCM muscle. I saw him two times a week for months. I never felt better. I couldn’t even function around the holidays. It was a chore just to hold my head up or ride in a car. And don’t get me started on trying to walk through any kind of store! I could not handle anything. Also, my face was becoming increasingly more numb and painful, and my ear pain was almost unbearable. I was also sent to an ENT during all of this. All of my testing turned out fine, and I even had above average hearing, although my ears feel plugged all the time.

With some gentle pushing from my in-laws I ended up seeing a chiropractor. I have always been hesitant, especially with my neck, but I was desperate! He took X-Rays of my neck and told me I had tilted C1 vertebrae. I ended up being adjusted two times and then decided I was not ok with it (after hearing horror stories from my PT). At this point, I was getting nowhere and feeling very depressed and anxious. On March 15th (which just happened to be my 30th bday), I had my last PT appt. He told me that I wasn’t getting better and there was nothing else he could do for me. As much as I appreciated his honesty, I was devastated. It was definitely my lowest day.

I made another appointment with my GP. She felt around my neck and definitely noticed muscle tension. At this point, I was starting to get tension in my trap muscle and having some pretty decent upper back pain. She sent me for a neck X-ray (which turned out to be fine). She ended up referring my to a neurologist who specializes in MS. I just had my appointment with him a couple of weeks ago and I can finally see the light at the end of the tunnel. He strongly believes I have migraine associated vertigo with possible cervical dystonia. He wanted to start me on Botox injections, but he decided to try migraine meds first to see if my neck issues are related to the migraines.

So, tomorrow I start Topamax. I am a little nervous as I have read that some of the side effects are not very pleasant. I am hoping to get my life back. Slowly I have regained most of my balance, I can go into a lot of stores now, but I still can’t drive and generally just feel fuzzy all of the time. That is most of my story (I know I am leaving a lot of the little weird symptoms out, but I can’t remember all that has happened)! Thank you for taking the time to read! 

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Hi everyone.
I’m Sheena from the UK, its hard to say when my condition started, but I remember suffering from “dizzy spells” when I was a child, and waking in the night with feelings of dissociation and “Alice in Wonderland” symptoms, whereby my limbs felt odd… I’ve always been a light sleeper and require complete darkness in order to get a good night sleep. I never suffered from motion sickness, or anything like that.
I was diasgnosed with migraines in 1998, when, after several GP visits, and a visit to the ENT specialist, who told me that my condition wasn’t labyrinthitis, but was migraine. I was then referred to a neurologist, who at that time, threw everything he could at me… I tried everything, even exclusion diets… nothing worked, I either was made more woozy by the drugs, or completely knocked out. At this time I was in a state of chronic migraine, with perhaps 1-2 days of clarity every few days… I spent most of the time either resting or asleep! I was medically retired from my Care Assistant position at the hospital after being signed off “sick” for a year. The next 2 years was spent just trying to recover. I treated it, as I had treated it after being discharged by the neurologist, who basically told me “You have migraines, I’ve tried everything, you’re just going to have to live with it!” by just taking to my bed when I felt an attack coming on, until, usually 3 days later, returning to “normal”. A medical assessment found me “fit for work” and I began part time work…then full time. I had the odd attack down the years, though during this time I was taking Prozac… whether that helped or not, I have no idea… But it does seem funny that I didn’t get an attack while on it! Anyway, my attacks have no returned to once per month, not specifically linked to my cycle… and I’m developing more symptoms… this time I’m getting loss of vision in my left eye, as well as vertigo attacks, nausea, disassociated feelings, and at times an overwhelming sense of foreboding. I have suffered restless legs down the years and short term memory loss. I suspect my mother suffers from them, but has never been diagnosed, but she doesn’t really talk about her health much, and if I tell her how I’m feeling and what my symptoms are, she just says, “Oh I get that”… but when I try to convince her to see a doctor, she won’t… and has instead developed severe OCD!!
This January, prompted by suffering for 9 days straight, I went to the GP and was prescribed Pizotifen (0.5mg initially, now on 1.5mg)… which is helping a bit, means I can function to a degree, the nausea isn’t so bad, but still have some vertigo symptoms, photosensitivity, etc…
From reading the forum symptoms, I’m pretty sure that I may be MAV… but obviously am returning to my GP, to find out more… After being effectively written off by the medical profession years ago, I am reluctant to go back in and go through what I went through… However, I realise that times have changed and that there are new diagnosis, sub-branches of migraine, like VAM that were not commonly known about 15 years ago.
Thanks for listening…

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Hi Sheena,

I’m sorry to hear how long you have had this and that you are suffering now. I am curious what you said about Prozac- how long did you take that for? Did you have any attacks or any vertigo while on it? Many people on this site have had their MAV helped by SSRIs like prozac.

Are you completely normal in between attacks?

What meds have you tried besides Pizotifen for MAV?

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Hiya, thanks for understanding.
I took Prozac on two seperate occasions, once in around 1997-1999… and as I was diagnosed with migraines and had my worst attacks at that time, I don’k think it was that effective. I took it again following what I was told was Post Natal Depression from 2007 to 2011… and didn’t have a migraine or vertigo attack, though I do remember having the odd incidence of zig zagging, but that was all… If I do get the zig zagging, I tend to only get it for 20 mins and tend not to get any other of my usual migraine symptoms with it (weird, eh?)

Between attacks I am relatively “normal” … though I get the odd zig zagging in my field of vision attack, but nothing else.

Before this most recent bout of attacks, and my 9 day attack in January, I have taken nothing since around 2000. Before that I tried anti-epileptics (notably Epilim… which rendered me unable to communicate, I lost around 80% of my vocabulary and slept virtually all the time, even on a pediatric dose)… I tried so many drugs, I can’t remember the names of them.

I’ve just been back to my GP, and he’s suggested I stay with the Pizotifen, because I have had some relief and to try metronadazole for the nausea and to help me to absorb the dispersable asprin, which he’s just given me too. Apparently, he suggests, that our digestive systems slow down during the attacks, which renders unable to absorb as much of the medication, and that the metronadazole, being an anti-emetic, will help this… So I’ll wait and see what happens.
I’m on day 5 of this current attack, which is why I returned to my GP… They’re being very supportive… and while I’ve not been diagnosed exactly with MAV… from what I have read its the most likely thing that I have… as my symptoms don’t seemt o fit classic migraine, I don’t always get a headache with it… but I do get varying degrees of room spin, nausea, weakness, tiredness, etc…

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Hey all,

I have been visiting this board on and off for awhile, and finally decided to join in! I have had chronic migraine for about 16 years now (episodic ones before ever since I was very young), with multiple episodes of MAV - the first really nasty one being around 10 or so years ago. Of course, it was misdiagnosed as labyrinthitis (or maybe not the first time? Who knows), and would clear up in 3-6 months, only to be hit again with another “inner ear infection” a year later.

Approximately 2 years ago, I went chronic, and this little joy of life has been with me ever since. It has been a long road of medication trials (and failures), dietary and lifestyle changes, and major upsets trying to find something that works. I am better than where I was 2 years ago, but in no way would I consider myself a functional human being yet. I have learned so much from reading here, and since those with MAV that never leaves us is such a (relatively) small minority, I strongly believe that sharing and learning from one another is an important part of the healing process. I look forward to “meeting” all of you.