zipster
Your sympoms sound very familiar - as do the ‘dismissive’ remarks of the docs! Anyone would be massively anxious if they had all these symptoms for three months. Like you, I “self-diagnosed” & spent nearly a year visiting local ENTs & neurologists locally before finding a neurologist in Sydney experienced in treating MAV. It was worth the 2hr flight! While waiting for the appt I had an MRI to rule out brain tumour, etc and asked my GP for a migraine preventative med (lists available here on evidence based meds)
Suggest asking your doc for a referral to a neurologist - & as you are in the uk ask to see a neuro who is also an expert in diagnosing vestibular migraine would be the best route if at all possible. Dr Surenthiren (London & Kent) is highly recommended by many on our forum. Dr Silver is also a migraine specialist working in the north. Look up these two here for more info.
Do you have someone to support you? This is such a frightening experience to deal with when no doctor seems to be able to help. However, there are people who can help and you will get better so keep reading the info here - there is much that will help. And post any questions or just tell us how you are feeling if you need some support under the ‘General Discussion.’
Barb
Hi everyone,
Around 5 years ago, I was loving life, renovating our house, feeling fit, energetic, capable, and confident. I did very heavy work, especially for a woman, bricklaying, concreting, roof tiling, etc, and I think some of this took its toll on my body, giving me what I thought was a haemorrhoid, but in fact I had developed a rectovaginal fistula. I also remember developing very stuffy ears at the same time, and every now and then my hearing would be a bit off. I thought it was the dust from my work, and paid special attention to wearing the correct dust masks, ear plugs etc.
I mentioned my ear issues to the various doctors I saw, and by that time I also had a constant feeling of being sick with the flu, and they said it was ‘just toxins’ from the fistula. I also developed anxiety and depression, and they put me on Lexapro for 6 mths, calling it ‘reactive depression’ due to going from being a healthy person to a patient. I had 10 surgeries over 4 years. To cut a very long story short, 2 months before the last surgery (April last year), still feeling very sick but trying to push on, I was breaking out an old brick fireplace, but because my bottom was too sore to lean down, I sat on the floor (on a ring cushion) and reached up above my head with the chisel and hammer, and worked like that. The next morning I had a severe spinning vertigo attack, full on vomiting, nystagmus, etc which lasted hours. My husband called an ambulance. The hospital said I had labyrinthitis and that it would just go away.
I seemed to make a textbook recovery, but then in June, days after my final surgery, my wound appeared to fall apart (giving me quite a shock because it had done that the year before) and I had another vertigo attack. This one started with a feeling of fire shooting up the base of my skull. My GP said it was just anxiety, and gave me Xanax. I remained dizzy, so I went back to him, and he gave me Lexapro. I became worse, lightheaded, neck pain, shoulder pain, nauseas, tingling fingers, twitchy eyelid, gritty eye, etc. I couldn’t eat. I couldn’t stop crying. I threw out the pills because I felt like I didn’t want to live anymore, and I was afraid I would overdose. My husband was so worried about me, he hid all the knives. Everyone thought I was just in a panic because I had looked up my symptoms on the internet and was thinking the worst. I insisted my GP refer me to an ENT.
The ENT was a very dislikeable woman. She only saw me for 3 minutes and declared I had Meniere’s disease, even though my audiogram showed perfect hearing, and that I didn’t have tinnitus or hearing loss during the vertigo. When I asked her how she knew, she said “when you die and we chop you up, I’ll know.”
I decided to take my health into my own hands, and along the way, went down many paths. I wondered if my neck muscles being strained had something to do with the 1st vertigo, and if stress had contributed to the 2nd. I looked into tmjd , recurrent labyrinthitis, lyme disease, had acupuncture, bowen therapy, osteopathy, tried anti viral medicines, botox (for tmjd), allergy testing, all sorts of blood tests (hormones, anemia etc), CT scan, MRI and more …all the while overlooking migraine. I went to a neurotologist (only one in Perth apparently) who also diagnosed Meniere’s, and when I questioned him about my 24/7 symptoms, he added, ‘maybe migraine as well’. It still took a couple of months before I looked into migraine.
I had BPPV type symptoms in November last year. I went deaf and had loud tinnitus in my R ear for 2 ½ weeks in January this year. This had happened to me once before, for 2 weeks in September last year. Both times it ended with severe vertigo. I was so afraid of Meniere’s that I listened very carefully during the attack, and found that my hearing was restored before the vertigo, and tinnitus was gone. Another ENT said I had Meniere’s, though atypical, or recurrent labyrinthitis. And he also gave no thought to the 24/7 dizziness, etc.
I heard on the news of Prof Griffith at Griffith University in Queensland having a breakthrough using Vit B6, B12, and folate as migraine prevention. (I felt a little jealous of migraine sufferers, having something as easy as that to help them!) It was enough to get me thinking, and then researching, and then I found this website, read all of my symptoms being felt by other people, and wept! Then I felt stupid for waiting so long.
I had motion sickness as a child, I still do. Supermarkets make me very ill most of the time. I hate fluorescent lights. I have always had menstrual headaches. Every surgery I had a monster headache going into the anaesthetic and the same one coming out, that no drugs would fix. I used to get frequent headaches at work, always starting with a gritty feeling in my eye. (I thought I had a fleck of mascara in my eye). I would even have headaches wake me up at night. When all of this dizziness started I remember thinking that I would get the gritty eye, but that no headache would eventuate. My MRI had shown white spots in my brain which the neuro called ‘just freckles.’
My new GP agreed that migraine can present in many ways, and prescribed propranolol (which I stopped using) and now topiramate (which I haven’t started yet). I’m trying the B6, B12, folate plan, as well as magnesium. I feel like I might be getting better.
Sorry this is so long,
Janet
Hi Janet,
After reading your story I am really confused- did you have a fistula in your ear or in your behind??? Where did you have your surgeries??? Fistulas can occur many places in the body.
sorry, i should have been more clear, it was in my behind (I have now edited my original post…I was trying to be delicate I suppose), but the doctors blamed all my ear stuffiness, ear popping, and flu type symptoms (facial pain, neck and shoulder pain, sore eyes, etc) on the toxins from it. (except for those who diagnosed me with ‘health anxiety’ - hypochondria - that is!) The fistula is all fixed now, but of course the other symptoms are ongoing. Looking back, I think the stress of the situation was what flipped my switch from episodic migraine to chronic migraine. I was in much the same boat with that problem that I have been with VM, that is trying to get doctors to work out what’s wrong, and the best way to fix it. Also the disruption of 10 general anaesthetics, along with all the tests, and the associated fasting,etc didn’t help.
janet
Crikey Janet - you have been through the mill! Please keep us posted how the Folate, B6, B12 & Magnesium works for you. I am taking all of those but perhaps not in sufficient quantities! Does Prof Griffith have a website with the info on or does it need to be tailored specifically? In the meantime I’ll press on with the Topamax!
Barb
Barb,
I just use the amounts Prof Griffiths used in one of her trials. She hasn’t perfected it yet, and is recruiting for another trial. (2mg folic acid, 25mg B6, 400micrograms B12). Here are some interesting links…
http://app.griffith.edu.au/news/2013/01/19/griffith-migraine-research-success-continues/
I everyone, I am new to this board but have been posting up a storm. I am actually new to MAV as well. I am female of 38 yo, with 3 kids, onc which is 8 months old. I am so glad to be posting with others who totally get what I am going through. It has been a real struggle mentally, physically and emotionally. I have lost a lot of friends through this as well bc, well, i guess they suck as people. LOL. I think this all freaked them out and now they have split. This is another aspect of this issues that has been hard for me. I mean, what kind of person does that? Anyway, I will answer the questions below.
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How your condition started- Mine started about 2.5 months ago. I was doing great right before. Finally feeling good after having my baby, and finally going out again and having fun. Started going to the gym where i started to notice i was feeling a little off balance but shocked it up to being in the gym again after baby. Then I started to get this low humming in my ear that litteraly felt worse than the dizziness. I could not take it, it was driving me insane. Then both just kinda got worse until i was couch bound and could not get up with out being totally off. the dizziness was worse while walking. it felt like the world was bouncing and it made me ill. everything felt off and it was hard to explain the kind of dizzienss i had. one of the tests i did showed that i had sort of motion sickness. that rotary chair test. i of course had headaches on the right side only. but i have had them for so long, that i didnt even think about it. i remember thinking while pregnant and after giving birth that i probably have a tumor bc of the non stop headaches. but i was too busy to even deal with it. I had to have my MIL come and help me with the baby. I had to hire friends to help me during the day to help with baby and the kids after school. I ended up having a panic attack that sent me to the ER, and then to the mental ward. ug. what a mess. I was so anxious and messed up mentally from it that it ruined my life. Then my ear started to blow up like a balloon inside my head. I thought for sure i had excess fluid in my brain. When I knocked on my skull I could hear a hollow sound, like when you have water in your ears. But of course through all the million tests nothing showed up. I did have a thinning of my right superior Canal, and my symptoms mimicked Superior Canal Dehiscence, but after two CT scans, it showed no hole and that there was clearly a nice layer over my canal.
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Any precursors that might have been related - i cant not think of any precursors. Maybe that i had had some sinus issues a couple years ago that lead to infection. I also on the same ear had an ear infection after birth with my 1st son where they had to slit the ear drum and take out the fluid. Maybe just giving birth really is a precursor, bc it always seems to give me some sort of ear problem.
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Where and when you were diagnosed- I am seeing an orthonlargologist/nerotologist at U of M. After countless test-ct, mri, vestivbular tests, ecog, vemp, ear conductions, audiologists, even eye doctor…he said, well he is not quite sure and that he wanted to try to see if this may be MAV. I was seeing a Psychiatrist who was going to put me on Nueronton anyway for anxiety, so he said lets do that and see if it works. I thought for sure he was nuts. I mean this seemed so much bigger and horrible.
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Other diagnoses that you have had-one doctor was saying maybe it could be mieners, but i dumped him quickly as he also said, oh just wait, maybe your ear will pop. that is why i left and went to U of M doctor.
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How you are treating your condition- been on Nueronton now for 4 weeks, I also self diagnosed and used amoxicillan incase of any bacterial infections. I started both at the same time and wa-la, after about 4 weeks being on Nueronton it worked like a charm. Took away that full head feeling, dizzienss, and now my low hum, is very very low and almost gone! still have a little ear fullness that comes about once a day, but goes away quickly. I was having maxillary inflammation as well on my right side and the antibiotics seemed to help take that away. i think i was getting an infection which seems to happen every winter now. ug.
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What has worked for you and what you might recommend other people try-the meds Neuronton! I now see a psychiatrist for my anxiety as well as a therapist every week. I also try and meditate and keep myself grounded bc my mind sometimes goes into a bad space. Trying to keep positive and know that i will not die from this helps. Knowing that there is nothing seriously wrong with my head from the mri and ct scans also helps me stay in a good space. I am also starting to exercise, which does make me get a headache but it is totally worth it bc everything else feels good. Before all of this, i was a huge exercise fan and health person. Never did I think I would be one of those people stuck on meds for the rest of my life. That really sucks, but you know what, it is what it is.
Peace, love and light to all of us struggling.
what is U of M? University of Maryland?
HI All
I have had migraines for as long as I can remember; probably the first one I remember was when I was around 9 or ten years old. I got up and got the paper form the letter box and found that I could not read the large writing, it was all blurry, I didn’t have any headache as such just a strange feeling in my head. Visit to the doctors and long story short the doctor said it was ‘focal migraine’!
After that I had headaches and classic migraine with aura on a fairly regular basis – more so around spring time. The good news was that the frequency did get less and less to the point that I only had a bad migraine once a year maybe.
However in 2002 I had episodes of dizziness ear fullness and hearing loss and was quickly diagnosed with meniers by my GP. Had an ENT appointment to check hearing etc. Put on serc 16mg X 3 daily. Discharged form ENT after three appointment (they did do the walking with your eyes closed test and I remember lying down in a chair).
For several months I had background unsteadiness and tried a variety of different potions to try and help.
Three years ago after a bout of vertigo which always affects my hearing I tried anti virals (Aciclovir) and they appeared to help with the hearing and eventually the unsteadiness seemed to get better.
Then two years ago I had another ‘attack’ which really brought me down and I had an increase in the migraine headaches and the GP found I had high blood pressure so put me on Half Inderal 80mg once a day I also took another short course of anti virals. Following that I had the best two years I have had in the last eleven, I could just get on with my life like the old me, it was wonderful.
Unfortunately in October 2012 things started to go downhill again with dizziness and vertigo and an increase in headaches. I have to say that I had not been compliant with medication either serc or half Inderal , I was feeling so well that I forgot to take it and ran out of Half Inderal for several days on two occasions.
Christmas day afternoon was spend in bed as I had managed to get tonsils an ear infection chest infection and sinus infection – lucky me, I was also very unsteady.
Blood test showed that my iron level was very low and started ferrous sulphate. In between times the GP changes my half Inderal to Half securon which just did not appear to agree with me – I constantly had a headache, so changed back two weeks ago. (I also have a referral for an MRI for the other ear as the GP said that it looked slightly sucked in so may be causing some of the problems I am currently experiencing).
Headaches have gotten better but still unsteady and have had vertigo every weekend for the past four weeks.
I have recently bought Heal your headache by Dr Bucholz – having read this it makes me wonder if possibly Migraine is the cause of the dizziness etc., I always thought (well the doctors told me) that if you have hearing loss then it’s not migraine. But thinking back I felt sooooo much better after starting the half Inderal. I’m going to give the diet a try and see if it helps.
Thanks for listening and any advice or thoughts you have would be very welcome. 
Mandy
Hi Mandy,
I am confused about a few things- when you said “put me on Half Inderal 80mg once a day I also took another short course of anti virals. Following that I had the best two years I have had in the last eleven, I could just get on with my life like the old me, it was wonderful,” did the steroids only last a few days, and then the next 2 years you only took the inderal? Did you have any problems with your balance and did it help with that?
when you said “I had not been compliant with medication either serc or half Inderal , I was feeling so well that I forgot to take it and ran out of Half Inderal for several days on two occasions”- did you just stop taking it altogether? Did you start feeling bad after you skipped a few doses and then that continued until Christmas or until now? Did you restart it after missing a few doses?
Then you said “still unsteady and have had vertigo every weekend for the past four weeks.”- why do you only have vertigo on the weekends? Are you fine during the week?
I am so glad i found this board, it’s full of information and people who understand. Here’s my story-
Since i was a kid I’ve had sensitivity to lights(my mom used to yell at me to turn on a light), sounds(I still block my ears when watching fireworks), and smells(perfume and smoke). My ears have been blocked, like swimmers ear, for at least 15 years.
About 5 years ago I had my first episode of vertigo. I was at work and it came out of nowhere. I had to hold on to walls to get to a place to sit down. I also had nausea and ringing in my ears. It lasted a few hours. About a year later I had the worst ear pain of my life. I went to my PCP but she said there was no infection. I went berserk and insisted there had to be an infection due to the pain I was in. Finally she gave me a prescription to get rid of me I guess. Looking back I’m thankful she didn’t call the police on me!
3 years ago I started working out and going to the gym 5-6 days a week. I was in great shape, then boom! Vertigo hit me and lasted for 3 weeks! I had to argue with my doctor to go back to work. Dizziness, nausea, ringing in ears, ear fullness were daily occurrences by now. Pcp ordered an mri(neg), lyme test(neg), ent referral and neurologist appt About 2 months later I had another episode of vertigo, this one lasting about a week. ENT did a bunch of tests and said my ears were fine, no hearing loss. I went for vestibular testing with an otoneurologist. He suspected vestibular migraines, but never officially diagnosed me. He put me on verapamil. My daily symptoms remained,but no vertigo episodes. After 4 months he discontinued me on verapamil(not sure why) and basically dropped me as a patient.
I’ve had some short episodes of vertigo lasting a few hours in the past year. Last month the severe ear pain returned. The ENT confirmed there was no infection and suggested sudafed 3x day. After 11 days the pain disappeared. This week the vertigo returned. I drove to work on Monday and when I got out of my car, Bam! The vertigo hit me. I have been home from work the past 3 days and not feeling any better.
I saw a new neurologist last week and she started me on 25 mg topomax to increase to 100mg within a month. I am hoping to have some relief. Years ago I started modifying my diet and cut out caffeine, alcohol, MSG. I am going to look more at what I eat and what I can change.
— Begin quote from “sarahd”
Hi Mandy,
I am confused about a few things- when you said “put me on Half Inderal 80mg once a day I also took another short course of anti virals. Following that I had the best two years I have had in the last eleven, I could just get on with my life like the old me, it was wonderful,” did the steroids only last a few days, and then the next 2 years you only took the inderal? Did you have any problems with your balance and did it help with that?
when you said “I had not been compliant with medication either serc or half Inderal , I was feeling so well that I forgot to take it and ran out of Half Inderal for several days on two occasions”- did you just stop taking it altogether? Did you start feeling bad after you skipped a few doses and then that continued until Christmas or until now? Did you restart it after missing a few doses?
Then you said “still unsteady and have had vertigo every weekend for the past four weeks.”- why do you only have vertigo on the weekends? Are you fine during the week?
— End quote
Hi Sarahd
The second lot of antivirals was for only two weeks and I started these at around the same time as the half Inderal which I continued to take. For those two years or just over I didn’t have any vertigo or unsteadiness and next to no tinnitus.
It was prior to October 2012 that I missed doses of Half Inderal but have been taking them daily now aside from the short time the doctor changed them for two weeks. I started taking the serc as I should have been around November (3 X 16mg Daily) I started to feel unwell around October not much just a bit of light headiness and headaches etc. this got steadily worse until Christmas when I was very unwell tonsillitis ear infection, sinus and chest infection (had antibiotics) just after Christmas.
As for the vertigo on the weekends that’s just how it’s happened over the past four weeks. Having said that its Friday morning I have just picked up the shopping and am feeling really unsteady.
I should have put in my earlier post that I am 49 and form the UK.
Hope this makes things clearer.
Can your dr. raise your dose of inderal? Sorry to hear you aren’t feeling well hopefully things get sorted soon!
I have been on and off viewing this forum for months now, deciding if I should join or not?? Finally have built up the courage to do so.
My “MAV” story begins 12 months ago, (2 weeks before Easter). I woke up early to take daughter to bus stop and the room was spinning, made my way to bathroom, then felt my body becoming heavy, began to lose function in legs, while calling for ambulance loss function in arms then speech. Originally the doctors were thinking stroke, but it wasn’t long and movement returned, dizziness, nausea remained I felt like I was in a lift, or that I had just got off an amusement ride. The hospital had a falls and balance clinic, I was accessed by a physio who told the doctors in emergency that I was having an acute vestibular migraine and should see a neurologist. Long story short, spent a good deal of time in hospital, then a good deal of time in and out of hospital.
My migraine stays with me, its constant - I learn to deal with the “boat ride”, it flares up which means that I can loose movement in some parts of my body, but this has only happened on three occasions and does not last long. Its the brain churning feeling I hate the most, which panics me. OK - now for the drugs - on reading what other posts have done… I have been on… Endep, Effexor, Cymbalta, Stemetil. These were not good I didn’t cope well with the side effects - don’t get me wrong I gave them a really good go.
I started to “see the light” with Sandomigran - I was on 8 tabs 0.5mg things were traveling well “clarity” was returning, more good than bad days. But the fact that I was raiding the fridge in the middle of the night, eating bags of chips etc, and gaining weight didn’t go down well with the neurologists so the game plan has changed.
Current game plan is: - Sandomigran - 5x0.5mg, Topiramate (Topamax) 100mg, Lexapro 5mg, Thyroxine 50micrograms. I have been on this game plan for 4 - 5 months. Along with all of this I have taken it on myself to eat preservative free (no trigger foods), drink 2-3 litre water per day, massage, see a psychologist (my neurologist wanted me to see one as he felt I needed to come to terms with my illness!). I also do Vestibular Physio at the hospital, which has been fantastic to strengthen my balance. With all of this I can manage to get a 4 to 6 week period of some clarity, then its not so good, (like now). Maybe that’s why I have finally decided to join.
Anyway - now that I have purged I feel a little better. Thank You.
There are not enough words for me to describe the feeling I had when I stumbled across this forum! My back story goes as follows:
I will try to make this as brief as I can. On Sept. 25 I was driving down the highway and had 3 massive spins that came out of nowhere. They were very short, maybe 1 second at the most. Over the next three days I had more. Sometimes I was just sitting there, another time I was at the gym, sitting, standing and lying down. I went to my doctor and he tested me by tipping me over backwards a few times. It made me very nauseous. He diagnosed me with BPPV. I continued treatment with him for a while, but then I saw a physiotherapist who used a different maneuver and it seemed to help…kind of. It fluctuated from having these big spins to feeling like my head was full and lightheaded, dizzy and very unbalanced. I saw an ENT specialist who did some testing and said I have Recurrent Vesibulopathy.
I have tried all of the “maneuvers”, chiropractors, massage, MSR.
Fast forward to present day. Over the last few month I have noticed that the “spins” are gone, but the full feeling in my head and the unbalance and lightheadedness have continued. However, I can go 5 to 7 days without any symptoms at all. I feel 100% Then, something visual will send me into that feeling. For example, when I walk my dogs out in the snow, about halfway through the walk I will start to stagger. I had to drive through some fog the other day and have been staggering for 2 days after.
Dim light, certain patterns will also do it. When I am unbalanced like this, I weave, sometimes significantly, and I can shake like I have Parkinsons or something. That’s about as close as I can describe it.
I have been in touch with the head of the Vesibular program at a rehabilitation hospital as well as a lady who runs a vesibular clinic, told them both my history and they both said that they didn’t think the BPPV diagnosis was correct and then they asked me if I had migraine history, which I responded yes. They then told me about MAV and suggested that this is what might be the issue. You could have blown me over with a feather! I have never even heard of this. My Dr. has not heard of it either.
I am going in for a balance test in a week, as well as the vestibular clinic . Hopefully I will get some definitive answers.
Sm
Sounds very much like Vestibular Migraine! Yes, this forum can feel like finding the ‘Holy Grail’ - a place that understands exactly the weird & scary symptoms & so much info & support. Welcome! Good luck with your journey.
Barb
Yes Barb, that is exactly how I felt…complete with the Monty Python music! Thanks!
I have been reading everyone’s posts for sometime now and thought it was time to post mine.
Woke up on December 20th 2012 feeling very dizzy. I my PCP thought it may have been do to a bad gallbladder. Had all the tests MIR, Ultrasound, Hydascan all came back clean. In and out for the next 2 weeks or so was told to keep a low salt diet. Finally got to see an ENT around the first of the year and went through the battery of tests. I did tell him that I was diagnosed with Labyrinthitis back in early 2007. He said all check out no signs of nystagmus and my hearing was fine. Kept pushing through thinking that I had just pushed myself to hard at work (i worked 72 hours a week so my wife could be a stay at home mom) Finally in early February I saw our local Neurologist who told me I was dealing with silent Migrianes and he started me on Topiramate 50mg. After several days I started myself back on Topiramate at 7.50mg and I am finally up to 30mg per day working myself up to 50mg per day. I am currently in the process I trying to find a good Mirgraine Neurologist. Currently I have 24/7 dizzy/uneasyness, fullness and ringing in my ears, a bad case of light sensitivity(always wearing sunglasses). When I stand up with my eyes closed, hands to my sides and I stop breathing I fall to my right. When I try walking heal to toe with my eyes closed I generally fall to the right. I saw another ENT last week and he could not explain why this was happening. He told me I had BPPV and some residue for an old ear virus that should pass.
That is my story so far. I want to thank everyone who continues to post thier stories and suggestions and you have all been a real breath of fresh air. I feel I have gotten more helpful information for this site than all my doctors visits.
Hi Ziggy
Glad you have got a diagnosis - all sounds pretty much like Vestibular Migraine! The ENT obviously doesn’t know much about symptoms as the falling to one side is quite common as is light sensitivity. I always wear sunglasses when out particularly in stores with fluro lights. If I shut my eyes I still fall to the right & have done so since day one of the ‘big bang’! Not surprising you still have lots of symptoms- 30mg is still quite a low dose for Topiramate to be effective but it’s good to increase slowly so your brain can get used to it. 100mg is usually the dose most Migraine Specialists aim for. I’m on Topamax too & getting up to 100mg ‘slowly’! Migraine docs suggest no VRT until your brain is stablised on meds.
Let us know how you’re going.
Barb
I just wanted to extend a warm welcome to our new members and thanks for posting your stories. There is a lot of great information here and the support of others who truly understand what you’re going through. Good luck on your road to wellness, we’re here for you! 