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#361

Hi my name is Julia
I’m new to these boards but have been lurking for a while looking at all the fantastic stories and resources. My story began in March the day after my birthday. I currently work as a nurse and after working an extra large amount of night shifts over the winter period I decided I would have some time off and booked 3 weeks.

Unfortunately this was the time migraine decided to attack in full force (think it was probably sleep deprivation that caused it plus mega caffeine usage). Originally I thought I had trapped a muscle in my side as I had pressure in my stomach/rib area continually. After about ten days I decided to go and see the G/P about this but never got there. I suffered an SVT in the afternoon (fast heart rhythm) at home and fainted which resulted in my going to A/E. My heart rhythm returned to normal after but I noticed that I had pressure in my nose with a headache and dmissed it as part of the SVT. Over the following weeks I kept getting a feeling of being very drunk/confused mixed with sudden onset of vertigo where I became completely disorientated as to where I was in relation to the room which lasted less than 5 minutes. This was always followed by a headache/pressure of either being like a tight hat or in one half of my head swapping to the other sometimes. Throughout the whole time I suffered with continual gastric problems/stomach twitching. I attended A/E again as we thought it had something to do with my heart and I was waiting for a cardiology apt. I was chest x-rayed and sent home with diagnosis of a trapped muscle??? :lol:

My headaches became more and more frequent and severe over the following weeks and the straw that broke the camels back came when I suffered migraine with senory disturbance to both legs and left arm, visual disturbance and felt very faint everytime I sat up. I thought I was having a stroke! My head felt as though something was about to explode inside and the migraine affected my whole head. I was taken back to A/E again by ambulance this time and they kept me in overnight and did a CT and an MRI. I was very dizzy and felt as though I was rolling off the trolley all the time even though I wasn’t. I felt as though I wouldn’t be able to walk about as I was so dizzy and although a little unsteady I could walk. I wanted to vomit and was injected with stematil (bad for migraines) to stop me being sick. As they couldn’t find anything on my MRI/CT they discharged me the next day and said I would be followed up by Neuro and suggested that I might be anxious causing my symtpoms. I was still continually dizzy and unsteady on my feet. When I got home I suffered severe back pain with sensory disturbance and still continueed to have hadaches. I went back to A/E again and was given entonox which made me feel weird! I was discharged and told I would get an urgent neuro referral.

Over the following weeks I suffered daily headaches with the occassional more unsual symptoms once or twice I woke in the night with flashing zig zags (aura) and when I tried to get out of bed and walk I fainted followed by vomiting. Another time everything became so loud and the room expanded that I felt like I wanted to vomit (Alice in Wonderland). I had continual dizziness all the time at this point which I would describe as a rocking sensation, bobbing sensation when stood still (like being on a fast pogo stick all the time) and floor moving dizziness when I took a step it felt like the floor would slant down. Even when I sat on the toilet I felt like I was setting sail! I had been given no explanation for my symptoms. My G/P sent me for a gastroscopy as I had lost weight and had continual gastric twitching for over 2 months, It made it difficult to sleep lying flat due to having reflux. I was put on omeprazole and buscopan with no effect. I then had a gastrocopy where they diagnosed gastric spasm which again they put down to possible anxiety till I told them I had it for 2 months all the time. I was put on Mebeverine and domperidone which made a difference in 4 days and I could lie falt and eat well!

I finally got my neuro appointment which was very disappointing. I went with my boyfriend and dad safety in numbers! I was dismissed and told nothing pathological could be found and that I would be sent to ENT :evil: .
The nurse followed me out of the clinic as she knew I had not been given an answer. She told me that I needed to go and see Dr. Silver but did not say why. She repeated this again and when I asked her what did he do she did not answer me but merely repeated hereself. This set me on the right path! I put a complaint in about the first neuro and asked for a second opinion didn’t get Silver but got someone just as good. I got a second opinion from another neurologist who was fab and was diagnosed with chronic migraine. I was started on propranolol and after about a month all my diziness had gone although still suffering with daily headaches with occassional bad ones. I was dizzy for almost 4 months everyday but I am never dizzy now. It’s amazing how little most doctors know about this condition and even myself as a nurse I knew nothing about migraine and MAV despite the fact my mum and aunt both suffer from it. Reading peoples work like Dr. Silver, Dr, Bernstein and even Dr. Goadsby has been great and the penny finally dropped as to what was wrong with me!! Getting a diagnosis is the first step on the pathway to cure.


#362

Hi Julia,

I am so happy to hear that your story has a happy ending!!! How long have you been on the propanolol and what dose are you on? You could write a story in the success stories section of the site to give others hope. Glad to hear you are feeling better!!! Thank god for that wonderful nurse who set you on your path!!!


#363

Hi Sarah,
I have been on propranolol since the beginning of July so almost two months. Originally I was started on 80mg of the slow release stuff and upped this to 160mg after two weeks. I now just take 160mg in the morning. I didn’t really get any side effects from being on propranolol felt a bit sleepy at first but was fine after a couple of days. I’m really thankfull for that nurse I wish I had taken her name! I will put my story in the success bit. It’s really intersting reading everyones journey with migraine and vertigo.


#364

I am a 43 year old woman, who began having cyclical headaches in my
30’s. My mom suffered from migraines from early childhood and so I figured it was in my genetics. I never had any trouble with my cycle until I was 37. I began having really bad hormonal trouble, irregular cycles, increasingly more migraines, fatigue and depression. Dr’s tried putting me on b/c, which didn’t help and eventually I ended up having a hysterectomy. My migraines have evolved to a couple of times a month and lasting several days.
My g/p had tried every med under the sun to help me. I am currently on 400mg of b2 a day which seems to lessen the headaches a bit.
Last January I was walking out of a store when I heard and felt a loud pop in my right ear. It proceeded to hurt for a couple of weeks. I then had to have emergency gall bladder surgery. After surgery, a couple of days later I had a very loud buzzing in my ear. I thought it was from the stress of surgery and hoped it would go away. I still had pain and now fullness in my ear. I was experiencing slight dizziness, but attributed it to surgery. After a couple of weeks I ended up at the ENT. Tests were run with no diagnosis. My dizziness subsided, but the buzzing and fullness remained. About a month later I started feeling like I was leaning and walking to the right all of the time and having lots of lightheadedness. Went for a second opinion and then was sent to the top dr at the clinic. He ended up diagnosing me with MAV. I actually wasn’t convinced he was right. Since then my symptoms have come on for a few weeks and then almost disappear for a couple of weeks. Then back again. Though I still have episodes of migraine in between and the ear buzzing is always there. After reading through a lot of this forum, I think the specialist was correct. I see there are others with a lot of the same issues. I also feel completely exhausted during the episodes, bowel issues, depression (probably because it has come back again), brain fog and speech trouble.
I have gone through moments of thinking I am crazy or just making it up in my head. I am very healthy otherwise, I eat a very healthy diet and exercise 6 days a week. I am not a stressed out person, I have a very blessed life a great marriage and wonderful children. So, after I try and tell myself I am only imagining it and do my best not to think about it, it hits me full force and I realize there really is something wrong. The dr told me to try diet changes, which I did, with no avail. I am super hesitant to try daily meds. I have had a few for migraine in the past and the side effects are horrendous! I feel as though I just need to “suck it up” as you may say and learn to live with it. As silly as it may sound, it is comforting to know there are other people experiencing the same things. Not that I would wish this on anyone.


#365

Hi. I am a 40+ female in UK. I was diagnosed with MAV about six years ago. Comments had been made at work that I often appeared drunk and on one particular occasion I was sent home but knew I hadn’t been drinking so went to see my doctor straight away. By the time I got to see him I had lost some movement down one side of my body and my eyes had gone crazy (Now I know it is nystagmus!) and I was sent straight to hospital where I stayed for three days having tests to rule out everything else.

I can remember as a child getting really bad headaches if we travelled anywhere at night and when I ate certain foods. In particular butter cookies. As nobody in my family has migraine it was never something that was considered. I can also remember having dizzy spells after my first child but that was put down to low blood pressure. I was put on meds for postnatal depression after my first daughter, which are also used to treat MAV and I think they may have masked the symptoms as it was about six months after I stopped them that I started to get the drunk feeling again. I thought it might have been because I was drinking too much. I was drinking less than my friends but now realise any amount was too much as it triggered migraines.

I did start taking amitryptiline (sorry about spelling) but came off that to have my second child and was a lot less dizzy when I was pregnant. No morning sickness just a little light headed every so often. It also wasn’t too bad whilst I was feeding her. This may have been hormonal or it could have been that I had cut out all alcohol during pregnancy and then cut out dairy food as well when I was feeding her.

Since having my daughter I’ve continued to avoid alcohol and I don’t drink caffeine after lunch (really must cut it out altogether) and I gave up chocolate and cheese to try and lose weight.

Once the baby was weaned my dizzyness started again. I often appeared drunk, which isn’t ideal when you’re training to be a teacher, so I gave up my training and because a full time mum.

I am now on pizotifen and migraleve but I’m due to review this soon with my doctors. I have seen loads of really great information on this site and really must give it a try. In particular I want to stop migraleve as I don’t think they are much good.

Triggers are: Hormonal (2 days before period lasting up to a week on and off); Lack of sleep; Too much sleep; Skipping meals; Eating too many sweets; Flashing lights (police cars, camera flashes etc); Fire alarms; And the really odd one: Listening to two noises at once. (Like when my 4 yr old is watching tv whilst playing candy crush on my phone. She hasn’t heard of a mute button yet!) And stress (so I usually appear drunk at interviews… Cant think why I’m still unemployed!)

I don’t usually have headaches with the dizziness, just problems with co-ordination, speech and nystagmus. My hormonal migraines do come with headaches though. I also get really irritable which I think is more because of trying to cope with the other symptoms. I am seriously considering asking my docs to put me onto a low dose anti-depr that is know to help with MAV just to see if I can stop being so irritable. Hopefully I will get a doctor who has heard of MAV!

It really is great to have a forum where I can come to and realise I’m not on my own and I can pick up some great tips!


#366

I’ve decided it’s time to post - I’ve been reading this site for the past few months. I’m mid 30s female with young kids. I’ve had MAV for just over 12 mths. For a year or so before the diagnosis I noticed my vision had a bit of shimmering/slight movement. I’d asked my GP who thought it was probably a virus. Then just over 12 months ago I noticed every time I bent forward I had a brief falling feeling.

I went and saw an ENT who said again probably virus and come back in 6 weeks. During that time I had woken a number of times during the night with spinning dizziness, however I went back to sleep and when I woke things were normal until one day I woke with the off balance feeling where I felt the floor moving. I saw another 2 ENTs who did all the ear tests, MRI head and neck. The only thing that came back was Echocochleogram which said possible inner ear fluid but as hearing test was normal Meniere’s was dismissed. Eventually ENT sent me to a nuero which I didn’t find helpful and after my own research came across Dr Waterson.

My main symptoms were vision bouncing/shimmering , off balance feeling when walking , difficulty with bright lights. I’ve never had any nausea. I’ve had a couple of spinning episodes since being diagnosed when I have woken up in the morning but its more the chronic off balance feeling.

I tried Verapamil to begin which I thought slightly helped the vision movement but not the off balance. I then started on o.5mg Pizotifen in Jan which after a week or so slightly helped the bouncy feeling when walking. I then increased to 1 mg in April and felt it has helped again with stopping the off balance feeling when walking around. It probably took 3 mths of being on the 1mg dose to feel as though I had improved. I did get the tiredness in the first week or two but it wore off, I also have put on weight through increased appetite but that wore off too. I’d say I’m probably 80% most days.

I still find it difficult to accept the migraine diagnosis. I’ve never had headaches even as a teenager and never had motion sickness either. I definitely feel better when in motion ie cars, trains but then once we stop it takes a while to ‘rebalance’. I also feel a lot more balanced when I first wake up for 5-10mins but then as soon as I’m moving around things start to get off balance.

This site has been a great help to show I’m not alone with this illness. It’s very difficult for family/friends to understand…they think I look normal on the outside…maybe just a bit less motivated. My hubby has been very supportive. Thanks for reading.


#367

Hi Adam

I have just come across this site and it has some very useful stories and information.
I have just been diagnosed with VM by a dizzy clinic that my physio put me onto. I am still yet to have a Vestibular Function test but they are pretty certain it is VM. I have never had a migraine in my life and the dizziness was only just brought on by a knock to my head 2 months ago. I had all the relevant tests, CT, MRI and all came back clear. I have seen one neurologist and off to see another who knows a little about VM. I have started I guess what you call balance exercises which it is still to early to say whether they are effective or not. I am also seeing my local osteo who is treating me for my neck and back pain.
I think I am pretty fortunate in that the posts I have read some people have it so severe, thats not to say I dont have bad days but overall I just force myself to carry on :), but I do get very tired and concentration levels are not that great.
Its great to know that there are other people out there that have this and this forum is certainly very informative.


#368

Hi all

I am a 33yo sufferer of MAV. I found this forum after being diagnosed with migrainous vertigo by the London Hearing and Balance Clinic last month. It all started one evening in early August (this year) when I suddenly felt strange and slightly off balance. I felt disconnected from the environment and everything looked different. I didn’t experience vertigo or real dizziness, but I did develop ear pressure and mild tinnitus. It cleared up in two weeks and I had two days of perfect vision, balance and equilibrium. I then returned after a headache at work and frustrated, a few days later, I deliberately span (like a pirhouette) to see what would happen. This seemed to trigger my current symptoms - constant dizziness, slight imbalance, tinnitus, brain fog, inability to concentrate (although I think this is caused by anxiety) and occasional headache. No idea how that self-induced sensory input lasting a second could trigger worse, chronic symptoms. Prior to all of this, I have maybe had one migraine in my life and a couple of tension headaches a year. Oh, and now supermarkets and shopping centres really get me dizzy and disoriented.

I was tested at the Balance Clinic and my hearing and ears were fine. My eyes did tend to beat towards the left ear, suggesting I had a weaker left ear I think. Anyway, I was diagnosed with migrainous vertigo and asked to return for VRT and CBT. I’m unsure as to how VRT can help me when my brain is in a constant state of change. I am however, open to the fact that anxiety has a large part to play in all of this and maybe CBT can help me.

I have chosen to get another opinion on treatment by Dr. S who was the most prominent specialist (Guardian, Daily Mail artciles etc.) according to my internet searches. I am seeing him in two days time. Since mid August I’ve been following the 6Cs diet and not really sure that food is a trigger for me.

Fortunately, I’ve only experienced the vertigo sensation the day after eating a meat feast pizza (yeast, cured meats, cheese :lol: ) and have been able to continue working, however I’m really worried that this will get worse and I won’t be able to support my family.

This forum has been a source of huge support for me and reading your stories and experiences has been very informative. I wish you all the best in your efforts to overcome your migraines.

Sailesh


#369

Hi everybody
My story so far.
So glad I stumbled across this website and forum.
I have suffered with migraine since I was thirteen, and it was thought at the time that puberty an hormones were to blame.
My migraines have always started with an aura of zig zags and lights, and I would get facial numbness along with pins and needles in my left arm, however as I got older the migraines seemed to be less intense with most symptoms disappearing apart from the visual disturbance which has remained the same, I have taken prescription drugs in the past, but not for at least fifteen years as the side affects far outweigh the migraine, currently I take paracetamol or Ibruproven which do not really help apart from taking away some of the fog.
After suffering for years in desperation I was referred to an acupuncturist privately, it was here that I met his wife who is a trained nurse and at that time was conducting her own migraine clinic, this lady was like an angel sent from heaven she knew exactly how I was feeling and understood completely about the side affects of prescription drugs, as she too had been suffering for years from migraine, an exclusion diet was put in place for a month with food and drink introduced one at a time every three days thereafter. It transpired that my brain takes three days to realise that there is something in my system that it does not like, so for the last ten years I have been able to control my migraines by avoiding my triggers which are mainly MSG, anything processed and preserved with sweeteners. However although my migraines were under control I was still suffering with headaches and unfortunately was hooked on codeine up until three years ago.
March this year I woke up to the room violently spinning, I had to crawl to the bathroom, by this time I was sweating profusely and nauseous, eventually made my way back to bed and slept for hours, only to wake to a horrendous headache that was migraine level, episodes of spins and wobbles have carried on ever since, my GP thought initially that I had Labyrinthitis but realised after a few months, this was not the case and referred me to an ENT consultant. who after various hearing and balance tests announced that it was MAV, I have also just had results back from an MRI scan which was normal. I am now in such a quandary I cant seem to accept the diagnosis because for the last ten years I have been able to control my life and migraines, now at the grand old age of fifty six the migraines have moved the goal posts and appear to be taking control again.
I am due to see my GP next week to discuss the outcome, hopefully there is a new wonder drug out there.

Thanks for reading my story
Jackie


#370

Hello.
I’ve been reading all these posts for weeks now, hesitant to create an account because, well, I was hoping I would get better. My problems started 8 weeks ago and have progressed to the living hell I’m in now. I started out with a couple days of sudden nausea and dizziness, and a feeling of slight vertigo. On the first day, I experienced a few hours of this, then it was gone. On the second day, I had a twinge of dizziness, and then nothing for 2 days. On the fourth day, the symptoms arrived, different than the first two days, and have never left me—not for a moment.

I remember feeling oddly off balance. I wasn’t actually losing my balance, but I didn’t feel sure of my footing. Then, the next day, the dizziness began. For about a week, I felt better laying down, and didn’t really feel much of anything unless I was up. No vertigo at all during the first week—just dizziness and balance issues. Then, very slowly, I began experiencing a back and forth rocking vertigo, but only when laying down. That slowly progressed from lasting a few minutes upon laying down to lasting longer and longer each time, but it was more of an annoyance than anything else.

The dizziness and poor balance (though I never lost balance—just became increasingly less coordinated) continued to varying degrees ever day, but all along, the rocking vertigo increased. Then it became a steady companion whenever laying down, and even when just sitting still. As the weeks went on, the dizziness decreased (though it’s back today, and meaner than ever) and the off balance sensation ebbed and flowed. To this day, my balance really differs each week. But again, I’ve never fallen over.

What has increased, and radically so, is the vertigo. It transitioned from rocking when sitting/laying down to horrible swaying whenever laying down. Bad swaying, as in, makes me want to lose my cookies kind of swaying. From there, the rocking vertigo morphed into chronic vertigo in any position. I used to feel better while in motion, or up walking, but now the vertigo is present ALL THE TIME, and it’s far, far more violent than it was. Also, it’s no longer just rocking. It might be dipping, swaying, falling, swooping, rocking. You name it—I’ve got it. Sometimes the vertigo makes me lose my footing a bit, because it can literally move me back and forth, side to side, etc. Again, no matter what I’m doing, or how I’m positioned, the vertigo is God awful, and is only getting worse, day by day.

A couple weeks ago, the nausea started. Throughout this entire ordeal, I felt moments of nausea. You know, a quick wave of “Oh crap!” But I never was terribly nauseous. Now, the nausea is becoming more of a problem, and today is the first day that the dizziness is back—along with the vertigo that never leaves—and I’ve been nauseous all day. That’s the first for me, since the nausea was always intermittent. Also, to this day, the worst of the vertigo still comes when I’m laying down. It’s hell on earth, and the upright and walking vertigo is slowly catching up in severity.

I had a brain MRI, with and without contrast. I had a CINE (flow study) done. Blood work. All normal. I’m scheduled to see a Neurologist next week. I wasn’t sick when this began, and I never had any ear symptoms. The only thing that proceeded this was TONS of stress—prolonged stress. I also had not experienced any migraines. In fact, I’ve never had a migraine. I do get neck aches (which can cause headaches), most of which have to do with my position; if I strain my neck.

I am married, and thank God my husband is a knight in shining armor. I also have two beautiful daughters, whom I home-school. I’m already at the end of my rope. I feel hopeless and spend most days crying. I feel like I’m in the bottom of a pit, and there’s no way out. Not even Buffalo Bill, lowering a bottle of lotion to me.

All jokes aside, I really, really need some hope. I need some words of encouragement, because even as I sit here typing—feeling nauseous, and swaying forward and back—I am crying. I don’t know what to do anymore, and I can’t see ever getting better. I read all these posts, and I’m terrified of feeling this way forever. I simply can’t handle that.

By the way, I’m 31 years old, and a woman (as you probably assumed).

Thank you, from the bottom of my heart, for any kind words.


#371

Hi,

My names Pete, I’m 33 from the UK and was very recently diagnosed with chronic migraines by my gp, having spent some time looking into my condition I’ve come to realise that I am in fact a sufferer of MAV.
I’ve just been referred to a specialist so hopefully i’ll get a full diagnosis but after reading more online material then i care to mention i’m pretty sure on this one.
It started a few months ago in work when i suddenly came over very nauseous, i rarely feel ill (unless i’ve had waaaay to much alcohol) and i felt really bad, i left work got the train home whilst somehow managing to hold on to my lunch and made it to bed, there i stayed wiped out for about a week. Lethargy, nausea and sleeplessness were the symptoms so i assumed it was a bug of some kind perhaps a virus and after that week i felt a bit better, saturday i went out to a friends stagg do, i declined alcohol and just drank soft drinks but by 10pm i was a wreck and i’d clearly overdone it too early. I wasn’t going to pass on a close friends stagg mind.

sunday is when i first noticed dizzyness and a bit of motion sickness, by the end of the week i was a full blown jellyfied mess! i felt drunk both physically and mentally and i was having trouble explaining to the doc a feeling of being disconnected to the world it sounded so strange in my head to say that at times i wasn’t sure if i was having a really lucid dream or if i was actually out in real life, along with sinus pain and pressure in my ears i was a relieved when the doc said i had Viral labyrinthitis and prescribed me prochlorperazine.
i went home and started taking the meds.

however, i didn’t get better, the constant vertigo, sinus pain, ear pressure, lethargy and the general feeling of discombobulation was still there. It wasn’t until about 3 weeks later i came in again and saw another doctor and when i described my symptoms along with some mild headaches i’d been having on and off she immediately sent me to the GP assessment unit at the local hospital, queue a 5 hour wait to see someone (the NHS is not renowned for being fast!)
i saw a nice doc who took on board my symptoms and booked me in for an MRI the next day and sent me home for the night, now as i’ve already stated the nhs is not renowned for working fast so a next day MRI had me panicking somewhat that i had some sort of alien brain parasite or tumor etc…

anyway, 25 mins in the metal tube with all my piercings removed (that was a pain) and i had to wait a week for my results.
i came back in and saw the same doc and he said “you have a very nice brain” in the manner that someone might compliment a host for their roast dinner, i was just thankful they didn’t find a coconut with a lime in it. Nothing showed up on the scan happily, it was confirmed clear but he then told me i must have chronic migraines, i didn’t believe him at first because i associated migraine with headache and i’d only really had mild headaches here and there, but he insisted that vertigo could be caused by migraine and prescribed amytriptaline and sent a letter to my gp.
oh and amytriptaline? seriously ‘May cause drowsiness’ it should read “DON’T MAKE ANY PLANS!” in giant letters, it is the best knock out drug ever!

I am now on 20mg a night of amy’ and it is working, the discombobulation is mostly gone, my lethargy is gone, i can think clearly and i don’t feel like I’m in a dream state anymore, its eased my motion sickness but hasn’t got rid completely but it has helped the vertigo, most days its pretty manageable others i look like a 2am drunk, but at least i’m not like that all the time. I’ve sworn off caffeine, chocolate and anything with aspartame or MSG in which was not a pleasant experience i must say, but needs must and all that and i’m now simply waiting for the specialist. i’ve taken to walking with my hiking stick, i find the extra support lends a mental hand as well as a third leg to keep me from toppling over, i do look drunk when stood still, like a marionette with loose strings but so far i haven’t fallen over!

i haven’t figured my triggers yet, i needed to get everything out of my system before i could start punishing myself but i’m thinking of trying a few things singly then perhaps a couple at a time and see how i go. one annoying thing is i can’t play first person shooters anymore i feel really ill if i do, but i was always more of a strategy game person so it isn’t all bad.

so that’s me, i’ve read through the survival guide (scott is a diamond!) and a lot of it really helped me put into words to what i’ve been feeling, chronic dysequilibrium, derealisation, and happily the phrase “brain fog” which is what i used to explain it to my gp. the only thing that really disturbs me is just what can set this all off and i do wonder if i’ll ever get back to normal, but people on here seem to have suffered for years and are still ticking so i guess i’ll have to get used to a different way of life. :smiley:
Pete


#372

Hello,

My name is Tracy. About 10 years ago in my mid-30’s I started experiencing hearing loss. I had a very bad doctor at the time. So skip ahead 8 years.

2011 - New wonderful family doctor, sent me to an ENT. Unfortunately the same day as my first appointment I was diagnosed with cancer. In the next month I was prescribed a hearing aid - LOVE IT! - and scheduled for cancer surgery and treatment. The hearing issues were put on hold while I took care of the pesky cancer cells.

2013 - Back to trying to figure out what was taking my hearing. A third hearing test was done with very different results, my hearing was much improved. Now they really started digging. I never mentioned my dizziness or light-headedness that I’ve had for as long as I can remember because I never associated it with the hearing loss.
A few more months, a few random tests, a couple of probing questions and bam! Meniere’s diagnosis. I was pretty happy to have a name for it but not happy with the prognosis. New Doctor two months ago who specializes in Vestibular disorders and he takes away the Meniere’s diagnosis and changes to Vestibular Migraine.
Currently taking Amitryptiline and feeling pretty good! FL41 tinted glasses on order since it was time for a new prescription anyway. I work on a computer all day and play on a tablet most nights. Fluorescent lights in my office and my home so I’m really hoping the glasses make even more of a difference.

I use to get full blown migraine with aura’s pretty regularly but they actually mostly stopped about the same time as my hearing loss started.

My story in a nutshell.


#373

— Begin quote from “Melonfish”

I am now on 20mg a night of amy’ and it is working, the discombobulation is mostly gone, my lethargy is gone, i can think clearly and i don’t feel like I’m in a dream state anymore, its eased my motion sickness but hasn’t got rid completely but it has helped the vertigo, most days its pretty manageable others i look like a 2am drunk

— End quote

Hey Pete! That part of your post is exactly what brought me to the boards. I have been slowly upping my Amatryptiline (which I spell differently everytime I type it) dosage and was trying to figure out if I should stop when I’m feeling exactly like you just said, or if I should keep upping and hope for complete symptom reversal. Same dosage too!

Best of luck!


#374

When I was almost 17 years old, I started to feel extremely fatigued after activities that required very little energy. This was at the end of my junior year in high school. One time, I drove 20 minutes away and had to lie down after due to the fatigue. This was not like me because in high school, I was always extremely busy with school and activities. At the time, I just thought I was overtired and just shrugged it off.

 I still had this feeling of overwhelming exhaustion into my senior year of high school.  I continued to shrug it off until two months into the school year. I went to my high school’s Homecoming and did not return to school after that weekend.  At Homecoming, the lights and sounds made me a little dizzy. I was also more sensitive to temperature.  Insignificant things in class, such as certain subjects, made me feel dizzy. On the Monday after Homecoming, I felt like I had some type of flu. I was nauseous, dizzy, lightheaded, fatigued, was achy, had headaches, had neck pain, had back pain, and had overall weakness including in my hands and feet. I fell into a very deep state of depression also. I just felt like something was really off.

 I was out of school for 4 months of my senior year of high school. I could not go into public places due to hypersensitivity to light, sound and movement. I could not drive either.  I was diagnosed with a whiplash injury along with Generalized Anxiety Disorder and Depression. I was put on Zoloft and Klonopin. I was started on 25 milligrams of Zoloft and 1 milligram of Klonopin. I eventually went up to 50 milligrams of Zoloft.  This seemed to help for the most part. However, it did not help completely with my driving. I could only take back roads. I could not take the highway. Fortunately, I was able to graduate on time. 

 I went to college and everything was going well, so I decided to get off of the Zoloft and went down to 0.5 milligrams of Klonopin in the spring of my freshman year of college (I was 19 years old). This seemed to be working fine until the fall of my sophomore year. I started to get the fatigue again and then very severe headaches appeared. Again, I shrugged this off. Certain subjects bothered me even more than usual (Side note: I was diagnosed with Vaso-Vagal Syncope at the age of 7. My triggers to fainting are usually needles, dentistry and other graphic medical topics). 

 Anyways, when I came back to college from Winter Break, everything seemed so difficult. I had to drop a class because I would keep getting extremely lightheaded whenever the professor used the term “blood”. I was not able to do the 7:40am lab that went with the biology class (yes, apparently 7:40am labs exist). I was taking three classes and everything seemed so difficult. All of my symptoms from senior year were coming back (headache, fatigue, nausea, dizzy/lightheaded, weakness, depression, anxiety, hypersensitivity, more neck pain, and more back pain). During the last few months of the semester, I legitimately forced myself to go to the dining hall. I would become incredibly dizzy with the noise and sound and would always feel like I was on the verge of passing out. I was in a Juvenile Crime & Delinquency Class and little things would really bother me to the point where I felt like I was going to pass out. Even things in my Sociology of the Family class would bother me.  This was not like me. During finals, I almost passed out in my history exam. I hung in there until the end of the semester. Obviously, I needed to do something. My life had gotten to the point where I could not function.

  This summer, I got off of Klonopin, which was kind of tricky due to the fact I had been taking it every day for three years.  I started to only eat fresh food. I started to avoid caffeine and alcohol, yet my migraines were not going away. I made an appointment with Dr. Rauch on October 10th and he diagnosed me with Migraine Associated Vertigo. Now, I am increasing my exercise and continuing to eat healthy. If this does not help, I will be put on preventive medication. That's basically where I am in this process. I've noticed that exercise can make my migraines worse. I have also been going to a chiropractor for three years because of my whiplash injury.

#375

It all started 9 months ago. One day I have a severe attack out of nowhere. The spells started out a few times a week, and they got worse and worse. for the past four months it has been every day. sometimes I have migraines with it and sometimes I don’t. it gets really bad as the day goes on. Stress makes it way worse, along with everything else. I am only 24 years old, and I was very healthy before this. I get so dizzy and confused that I cant drive or hold a conversation. I started getting panic attacks, and I thought I was dying. it effects my memory and balance too. I realized that I was panicking, and it was making it worse.MRI and everything came back ok, and they believe it is MAV because I got migraines as a child. they have tried Elavil, zonegran, topomax, propanol, and now oxcarbasapine, which is for epilepsy and anxiety, but I didn’t find much on it for migraines. none of the others worked, and topamax side effects were aweful. I hope this medicine works, because this is no way to live. I am depressed, because I am not myself. I was happy before all of this. its so hard to get people to understand what it is like, but I feel like they think I am crazy. It is an illness you can’t see, and that is tough for people to get. I know alcohol and caffeine are triggers, but I cant figure out what else is. I am going to try the whole eating healthy thing along with herbs to see if it helps. I just want it to stop…


#376

I am so sorry. I hope that very quickly you find something to help so that you can get back some of what you’ve lost.


#377

Hi everyone,
I think this is the place where we’re supposed to introduce ourselves? My long story is as follows, and I would love to hear anyone’s opinion.

In 2004 I was 30 years old and had no health problems. I woke up one day and things were swirling around. I remember vomiting in the shower that day. For the next 2 or 3 months I had many days where I would have vertigo and vomiting, always waking up with it. My GP diagnosed me with BPPV - but with no testing at all, not even a dix-hallpike. I went home with the Epley maneuver instructions and did Epleys at home. After a couple of months the episodes of vertigo stopped, but I would go into stores and start to feel really spacy…I couldn’t put my finger on what was wrong but it was just like sensory overload.

About a year or so later I was at work and bent over to pick up my purse and I spun like I’ve never spun before. I took a cab home and proceeded to spend the next 6 hours lying on the bathroom floor vomiting, and eventually ended up in ER. The doctor there diagnosed me with…BPPV. He did do the maneuver and diagnosed it based on nystagmus. After that (for the next year, roughly) the spinning attacks became more frequent. During those episodes, any head movement would cause vertigo and nausea. Horrible, terrible nausea. But, in between episodes I was pretty much okay.

Over the next few years I started having different symptoms…feelings like the room was tilted, or feeling unsteady, problems focusing on objects, feeling exhausted and nauseous much of the time. In 2008 I finally got proper vestibular testing; the test showed almost no vestibular function in my right ear. I had the ice water test and had a very mild response. I was sent for VRT after that but every time I tried to do it I would get worse and have what we thought were episodes of BPPV. These episodes were slightly less intense although I would have days where I would get dizzy while asleep, the dizziness would wake me up and I would spend the whole day having vertigo with any head movements. But at the same time as the intensity of the spins subsided, the other symptoms (visual problems, oscillopsia, imbalance, vague dizziness) increased in frequency. I still do get milder vertigo at times, which is always made worse by positional head movement.

I had another set of vest. testing in September 2012. It was there that they diagnosed me with bilateral loss and said that the left ear was damaged too. I have not had IV antibiotics, head injury, autoimmune disease, or antyhing else that could have caused bilateral loss.

I have tried Serc (which did nothing) and flunarizine (which I had to stop because of side effects). I’ve been amitrptyline for about a month after finally convincing a neurologist to prescribe it on the chance that I have MAV. I have asked the ENT, neuro-otologist, and neurologists that I’ve seen if I could have MAV and they all say probably not because 1) I have confirmed vestibular loss and 2) I don’t really get headaches. However, I know you don’t have to have headache to have MAV, and additionally, I had severe migraine with aura as a child and teen. I hadn’t had a classic migraine in about 18 years, but I recently had a miscarriage and two weeks after it, I had three migraines over the span of a weekend. Clearly they were hormonally-related but it makes me wonder if I do have some MAV component now.

So, like I said, I would love everyone’s opinions. Does this sound like MAV to you?


#378

rhoda it does sound like u might have mav, sorry ur drs. havent been helpful, u dont need to have headaches in order to have mav. i think migraine can actually cause inner ear damage which could be the bilateral loss. where do u live and can u see another otoneurologist or another otologist?


#379

— Begin quote from “sarahd”

rhoda it does sound like u might have mav, sorry ur drs. havent been helpful, u dont need to have headaches in order to have mav. i think migraine can actually cause inner ear damage which could be the bilateral loss. where do u live and can u see another otoneurologist or another otologist?

— End quote

Hi Sarah, it’s Rhody from Dizzytimes. I live in Canada, Ontario, and I’m trying to see a neuro-otologist but the wait times are very long. As to whether migraine can cause inner ear damage, there seems to be no definitive answer. I’ve heard everything from definitely not to possibly.


#380

— Begin quote from “rhoda”

As to whether migraine can cause inner ear damage, there seems to be no definitive answer.

— End quote

Prof Steve Rauch: This (vestibular damage) is actually very common. Remember that approx 20-30% of patients with migraine headache exhibit VM. About 20% of VM patients develop hearing loss on one side – evidence of “endorgan damage” in the cochlea. Those patients with VM who mimic Meniere’s syndrome — episodic vertigo lasting 20 min-24 hrs plus hearing loss — nearly all gradually develop evidence of endorgan damage (a.k.a. “vestibular hypofunction”) in the form of reduced caloric response and/or reduced VOR gain and increased phase lead on rotation testing.

Some patients with VM who do not look like Meniere’s disease can also develop peripheral hypofunction, too. The challenge in studying and/or assessing this issue is that VM patients tend to have very labile vestibular function test results. In other vestibulopathies, we see test abnormalities on a vestibular test battery that “cluster” — peripheral disorders, such as Meniere’s, labyrinthitis, and vestibular neuritis, show peripheral hypofunction (reduced caloric response, direction changing paroxysmal positional nystagmus, reduced VOR gain and increased phase leads on rotation testing) and central nervous system disorders, such as stroke, cerebellar degeneration, and TBI, show central dysfunction (direction-fixed position-insensitive spnotaneous nystagmus, vertical nystagmus, poor optokinetic nystagmus, impaired fixation suppression, etc…).

The hallmark of VM is that the test abnormalities do not cluster well (i.e. there is a mix of peripheral and central findings) and there is poor test-retest stability (i.e. every time you repeat the test battery, you get different results). Since vestibular function testing makes migraineurs very ill, it is nearly impossible to test them at all, let alone repeatedly. However, in those with a lot of vertigo, repeat testing often shows a more and more persistent and worsening unilateral peripheral hypofunction in the symptomatic ear (same as we see in Meniere’s disease).