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Specific Illnesses & Conditions VM/MAV
241

I have been lurking around this forum for a little while now soaking up all of the useful information posted but thought it was time to join in and share my story. :]

I’m 22, from BC, Canada and this all started for me 3 months ago. I was leaning up against a wall at work (I’m a receptionist at a hair salon) and started to get an awful headache right between my eyes. I have been suffering from headaches (I guess I would now call them migraines) at various points in my life always in the same place but in the past 2 years they have gotten much worse. This wasn’t a regular migraine though, my vision started going very blurry and I felt completely unbalanced. I couldn’t focus my eyes on anything and felt exhausted, like my head was too heavy for my shoulders. I went home from work and laid down in the dark thinking it would subside but it just seemed to get worse. I felt extreme anxiety thinking something bad was happening and would get a feeling of de-realization and disassociation lasting 30 seconds about every 5 minutes. I called the health line and they told me to go to emergency but it was a Friday night so it was packed. I waited 3 hours to even get close to being checked in but finally gave up and went home thinking I would get better in the morning. I had a really hard time sleeping, just kept feeling like the room was moving around. I woke up the next day with the headache gone but still feeling the anxiety and all of the other symptoms so I went back to emergency. Waited 5 hours to be told it’s probably nothing and go see my doctor on Monday. It was Saturday and I started throwing up and freaking out so my Mom drove to see me and gave me some of her Valium. It actually helped! The next day I woke up and I was not as dizzy as before and had no disassociation but still felt really off balance like I was walking on a moving ship. My ears also felt extremely plugged for no reason. I went to the doctor and he gave me Ativan for the anxiety and said the other symptoms were likely BPPV and since it seemed like I was getting better to not try the eply maneuver. I got my balance back after a few days and had no headache or vision symptoms, the anxiety also went away but my ears still felt plugged. The next day they felt like they had water in them and I started feeling really nauseated and had gastrointestinal problems. I went back to the doctor and he said I probably had a stomach bug and to take Imodium. That night I had the worst ear pain imaginable in both ears! I was clenching my fists from the pain and no pain reliever would touch it. It felt like my head was in a vice and my ears were going to explode! Then the next day all of my symptoms subsided and I thought I was in the clear. My period followed right after.

Round two happened almost exactly a month after this but followed a different course. I was listening to loud music in my headphones (SO STUPID in hindsight) and started experiencing really bad ear pain, more so in the right ear. I stopped the music and got up and almost instantly had the dizzy off balance feeling and weird disassociation from myself. This lasted maybe 5 minutes and then went away but then my ears became plugged again. I was so sensitive to sound and light, it felt like my boyfriend was screaming at me. I tried so many things to clear my eustachian tubes and nothing worked. The next few days consisted of ear pressure, turning into a feeling of water in the ears, turning into severe ear pain and back again. Whenever I took my Mom’s Valium it seemed to help a bit so I took that off and on. I saw my doctor again and pleaded with him that this was not BPPV and I couldn’t deal with this! I told him I did not think I had Meniers because I had no tinnitus or hearing loss and when he asked me if I got headaches we both thought it might be migraine associated vertigo. He put through a referral to see a neurologist and said I would just have to ride it out, but to come back if I was dizzy. He said he couldn’t send me to an ENT and neurologist at the same time which I thought was really shitty. We did a CT scan which came back fine, tested my hormones which were all fine, did an ECG which was fine, and he has looked in my ears over and over which both look fine. After the ear pain subsided I got the gastrointestinal problems again and could not eat for a few days. Then I was okay again until I took a Midol and had a 5 second episode of dizziness and then my ears plugged for two hours. Then my period followed right after.

In all of these instances I had had caffeine so I decided to give that up. I also realized there was caffeine in Midol so I identified that as a trigger. I read the migraine diet (still need to order “Heal your Headache” - sounds like the bible of MAV) and cut out all necessary foods. Ketchup, MSG, coffee, and dairy are the triggers I have identified so far. If I have any of these my ears plug up for a bit right away. Cut out Tylenol and Ibuprofen because they weren’t helping the ear pain anyway and I did not want to get re-bound headaches. This month my symptoms changed yet again which I think is because of the dietary changes. I never got dizzy or anxious, my ears just started hurting one day, that turned into ear pressure which turned into extreme pain and then went back and forth between pressure and pain for only 3 days this time. I am still sensitive to sound and light! I am still waiting to see a neurologist as well and have been given Relpax to take and see if it works next month on the ear pain. One night the ear pain, mostly in my right ear lasted 10 hours and again I almost went to the hospital. I forgot I had Ativan and decided to give it a try because I was freaking out and almost immediately my ear pain turned into a headache. Then it dulled it to the point of being bearable or just put me to sleep. Ginger, lemon, honey tea slightly helps my ear pain and so does an icepack on the back of the neck. Right after this episode I also got my period, but gladly escaped the gastrointestinal problems. I listened to music really quietly and not in headphones and my ears plugged up right away for a few hours as well.

So, sorry for the novel of a post I just really wanted to document everything that has happened to see if anyone has similar symptoms. I don’t read much about others having ear pain, having a water in the ears feeling or stomach problems but would be interested if there are people out there with the same. Does this sound like MAV to you? I called the neurologist and they said it would be 13 to 14 months to get in (!!! I cried!) but I am close with a client at my work who is high up in the medical field so she has moved me to another list to get in as soon as possible. I cried again when she offered to help me, not sure what I would be doing if she hadn’t. Very interested to see what the neurologist has to say and to be honest excited to try some medication that might actually stop this from happening to me! I have no problem following the lifestyle modifications but I feel like I have to tell everyone to stop shouting at me and I am anxious all the time that this will happen again. The pain is just unbearable when it happens. I have so much respect for many of you who have been dealing with this, and worse symptoms for any length of time. It is a true test of character and strength of the spirit to get through all of this.

Thank you for reading, let me know if you have any questions or comments! I look forward to meeting others who are going through the same sort of thing. :]

242

I’ve been reading everyone’s stories on here for a few months and its been a great help to me to know that there are other people out that understand MAV. So i thought i should now post my own story, here goes…

On November 25th 2011 i went to my best friends 30th b day party, afterwards we stayed up all night drinking port and dancing around the living room (great fun :-)) The next day I had to get on a train back to London, its a 3 hour journey and i always feel sick, so when i started to feel unwell i just thought it was travel sickness, apart from the fact that i’d never actually felt on the verge of being sick before - this was another level! Then the next day i woke up for work and when i got out of bed I felt dizzy…

At first i thought it was my blood sugar, i tried drinking lucozade and eating more but after 3 days it hadn’t gone away. I’m a keen runner but i couldn’t go running, i felt sick and just unwell, the symptoms were sometimes worse than others, particularly when i walked around my office and if i went in a supermarket it was like my brain went haywire. The next weekend i went out to do some xmas shopping (still feeling unwell) i was standing in a que to pay and all of a sudden i felt as if i might pass out, the walls started closing in and the room was spinning. I was on my own and was panicing that i was going to faint. I managed to get out of the shop, but everything was moving and it was the strangest feeling ive ever had.

On the monday morning i went to the doctors, i was diagnosed with an inner infection and told it would go in a week or so. I struggled through another week of work, my boss was less than understanding, when i asked to work from home as i was having problems with my commnute into work he accussed me of basically making it up he told me i ‘looked fine’. Finally after 2 weeks of dizziness i was signed off work for a week. Things got worse, i couldn’t move my head without feeling like i was going to pass out, i was house bound and my boyfriend and parents were looking after me. After a week i was well enough to return to work but still soooo dizzy! For the next week i sat at my desk trying to do my job, with a constant rocking sensation, sickness and i started to feel like i was losing my mind. I felt constantly on the venge of tears, i just couldn’t understand what was wrong with me :frowning:

Another week went by and i called the doctor to say i was no better, i was sent to see an ENT specialist at the hospital and he conducted some tests and diagnosied me with MAV - i was so happy to know what was wrong with me! It was 2 days before xmas 2011 and i went on the migraine avoidance diet. I was told to cut out:
Chocolate
Citrus Fruits
Caffeine
Yoghurt
Very Salty foods
Cheese
Red wine

I was also given a prescription for pizotifen, but i decided i’d rather try to get it under control through diet first.

I managed until early jan just on the diet but the migraines were still frequent so i started the medication. I tried re-intrducing chocolate after 4 weeks but it set off the dizziness again. A week later i tried cheese - same effect :frowning: I’ve been advised not to try any other foods on the ‘banned list’ until ive been stable for 3 months but im finding the cheese thing v difficulat as im vegetarian and its a big part of my diet. Ive tried feta and i seem to be ok with that. I was meant to be running the London marathon this year but ive had to give up my place, i just can’t commit myself to a training schedule, for example this week ive been very dizzy and i can’t go running, walking is hard enough! That’s what’s made me the saddest about this, ive always been so fit and healthy, i love the feeling of running miles and being in control of my body, but right now i don’t feel like i am.

Looking back on my history i’ve realised i’ve always been prone to vertigo after journeys, as young as 5 i can remember being dizzy after a 30 min journey to my Nan’s house - i thought it was just travel sickness but now i realise there was vertigo too. I have always been v sensitive to caffeine too, i don’t know why i didn’t turn to decaff sooner!

I guess now i’m just getting on with it and hope that one day ill be ‘normal’ again! :slight_smile:

Toria x

243

Hi. Thought I’d add my story to the list…

I have MAV. I also have SCD (superior canal dehiscence) in both ears. I’ve had surgery twice on the left ear for the SCD and I think that it’s as fixed as it’s going to get. I tried a PLF surgery on my right ear but it was a waste of time and money. I should have researched it more before agreeing to it. I have permanent tinnitus in both ears - hissing & static noises. In the left ear I’ll hear music from time to time and in the right ear it sounds like someone is whispering right behind my shoulder from time to time. I get most, if not all, the listed MAV symptoms - I have visual snow, paliopsia, oscillopsia, disequilibrium, some vertigo - the spinning kind, photophobia, phonophobia, autophony, hypercusis, anxiety, panic attacks, the tingling & pins & needles in various places, fatigue, pain & pressure in both ears, headaches, occasional migraines, occasional visual auras, poor concentration. They vary in intensity and duration day by day and can be made worse by stress, movement, light, noise, the weather… (I’ve been tested for brain tumors, MS, lupus, RA, Sjorgens, etc.) It is exhausting in multiple ways - physically, mentally and probably even spiritually.

I’ve had plenty of head trauma so can’t pinpoint the exact cause of my MAV. My childhood had a fair amount of abuse - usually in the form of being hit in the face and on the sides of my head. My ears would ring for hours sometimes. After I left home I joined the military. During those years I had 2 moderate concussions and was around explosions from time to time. Without ear protection. Then I was in a car wreck that broke most of the bones in my face (left cheek, left obit bone, both jaws), fractured my skull and caused internal injuries. I began to have migraines two months after the wreck and the visual auras started about two years later. Around the time the auras began I also began to have moments of disequilibrium and nausea. Ten years later I had a violent vertigo attack one night, seemingly out of the blue. Soon after that I began to get pulsatile tinnitus in my left ear. Ten years later the heartbeat noise bumped up to include the whooshing noises of the blood moving in & out of my head. Other odd symptoms started as well. I started having panic attacks. Then I began to have trouble with my vision and the migraines increased from 2-4 per month to 4 per week.

During all this time I saw, like all of us, too many doctors to count. I was told that I was “just anxious” and given a variety of tranquilizers to take. I never did because then I felt like if I took the tranquilizers I was validating the doctor’s dismissal as being “just anxious”.

When the migraines increased I sought out a new neurosurgeon and was told that I had an aneurysm behind my left eye. He felt that the car wreck started it and it took 20 years to grow enough to cause problems. It was clipped during a rough 8 hour surgery. While that surgery saved my life the resulting swelling from the surgery caused the crack in my left superior canal to split wide open. During my year long recovery the SCD and MAV symptoms became quite the puzzle - for me and my neurosurgeon. In time I heard about SCD and saw doctors for that and ended up at Johns Hopkins to have my first surgery for that. It helped get rid of one VERY debilitating symptom but seemed to make the other symptoms worsen. At the time I thought the surgery had failed and eventually sought out another opinion. That doctor recommended a revision surgery. So, add two more craniotomies to the mix (1 for the SCD revision and 1 for the PLF).

Interestingly, especially now, I was told by my first SCD surgeon that I had something called MAV and would need to go on medication. When I asked him how it could be a 24/7 problem, he replied that it just was and I needed medication. Given that I was only 6 months out from the surgery and still very emotional about things (moving the left temporal lobe can really upset your emotions for some time) I felt soooo helpless at his diagnosis and burst into tears and hung up the phone. (Note - he is a really good doctor. I just couldn’t grasp what he was telling me and his explanation was pretty clinical which made me feel lost and hopeless.) I investigated MAV a bit but couldn’t find any good information about it and it was suggested to me more than once that it all had to do with me “being an extremely anxious woman”.

The second opinion doctor told me that MAV was “just a medical catch-all explanation” and that I needed another SCD surgery. He is a well-regarded doctor and I was living my life on my sofa (all the MAV symptoms really ramp up after a crani) and felt lost & confused and so, trusted him. I had the revision SCD surgery and then the PLF surgery just 4 months apart. (So, it was 3 craniotomies in 17 months - not counting the aneurysm crani.)

So, time goes by and and the symptoms, which I was told were purely SCD, were not going away. I went through the entire vestibular testing mess again (two days worth) and was told by the revision surgeon that for some reason I was just not responding to surgery so he felt two more SCD surgeries (1 per ear) could be done - just in a different surgical approach (which would mean more cranial scars & recovery). That just didn’t make sense to me (by now I was able to think things through a bit clearer) so I just sort of shut down for a few months with regard to doctors and medical appointments. I simply could not figure out why I was still having most of the SCD symptoms when I had had two surgeries. I decided to try again and saw a local doctor who suggested a new CT scan. The scan showed a clear dehiscence in the right ear which explained the new SCD specific symptoms on that side. Then he suggested MAV to explain the rest. I told him about my first conversation with a doctor about MAV and about how helpless it had made me feel. But, I also told him that I was now able to consider it as a viable explanation. I think it just took time to recover from so many surgeries in such a short time - recover physically of course but also mentally. (In 7 years I’d had 4 craniotomies, an emergency appendectomy, an emergency open choly (gallbladder) and a knee surgery (I fell after one of the craniotomies and tore up my knee).

The local doctor gave me some initial info on MAV and suggested I contact another doctor - ironically, it was the doctor who first told me about it! :roll: I did contact him and this time around he had more info and told me about this website.

So, I’ve been reading here since around Thanksgiving of last year and learning a lot. I have to print out the pages and read them as I can, so it’s taking me a while but it’s all been so very helpful and encouraging. Just knowing that MAV is a real disorder and that I’m not bonkers - well, that’s such a relief that I find I don’t fall apart and cry like I used to on bad days. I still get down about it but just being able to say “I’m normal for a MAV person” is a wonderful thing. I’m in the “lifestyle changes” phase. I will now take Klonopin if I have a bad day or bad episode. If my headache gets too painful I do have meds for that. And, this is a huge step for me, I will not only consider but will take medicine if the lifestyle changes don’t help enough.

I will go back to Johns Hopkins later in the spring for testing on my right ear concerning the dehiscence and will decide then on having that surgery. I do have a few SCD specific symptoms in that ear and they are bothersome. Maybe if some of the MAV symptoms can be reduced by lifestyle changes and/or medicines, maybe then the SCD symptoms will be tolerable without the surgery. Time will tell.

I am thankful for this website. I appreciate all the stories and information. I find hope here.
Molly

244

I am not a newbie to vertigo. I have had symptoms since 1995. But nothing too unmanageable until 2004. Then the attacks were several times a month instead of once every 2-3 months. A big difference in how it affects your life. I am always waiting for the next one, knowing that they will always be with me. I strive not to be like this because life should be more fun. They are brief attacks, lasting 30-60 seconds or so. But very very violent to the point where I cannot open my eyes and even with my eyes closed I feel like I am falling off the world, etc. I can only hold on to something, sitting on the floor and not move a muscle until it passes or it worsens greatly. I have had periods where I have become very phobic about driving due to this. I was doing pretty well with that phobia until Nov 2011 when I had 3 attacks while driving. (prior to that I only had 3 attacks while driving over a period of years) so just the luck of where I was at the time it worked out I was not in the car. So since Nov 2011 I have severe problems driving. Fortunately I only live 2.5 miles from my work. I am back on some meds I have taken in the past but they don’t seem to be helping a lot. I think my fear is the biggest prob. Recently my daughter needed urgent surgery and her Dad was out of town, so I had to drive her to the Surgical Center about 45 min away. I did fine driving her to and from and I was so thankful since this was important that my daughter feel safe. She is 20 and knows about my vertigo prob. Then she had a slight complication a few days after surgery and her Dad and I drove her back to college. (2+ hours one way) I drove her car and rode back with him. I had a really bad attack (as a passenger) in his car and it was awful because he would not stop (which I understand) and the movement made it so worse. So now I am back to very phobic even being a passenger. It’s not just the phobia I actually do have motion intolerance as well. When the sunlight flickers in the trees it makes me immediately dizzy so I have to look away. I am going to order some of those Migralens that someone suggested. I have been to numerous ENTs, Neurologists and Psych Docs. My only official diagnosis’s from ENT: “You have a little balance problem and you over react to it.”(after balance testing done 2008) And from Neurologist: “Well it can’t be serious since it hasn’t killed you yet!” 2009 (that was my personal favorite) (after I asked him if it could be Migraine) he said “well if it is it’s atypical” with a doubting look on his face. I just wanted to relate my story as it seems similar to others. I know it could be much worse, my vertigo could last a lot longer. I am not sure how I could cope with that (since I over react to it) sometimes it is so violent the only way I can stand the spinning is to scream. I only see a Psych Doc now since anytime I go to any other doctor they just call me crazy anyway. I might as well go with it. I know it is prob a Migraine symptom. I don’t have any pain (sometimes slight pain) and occasionally I have a visual dist, but these I would not even mention if I didn’t have the vertigo they are not very bothersome. Most people in my life do not understand and I don’t really expect them to or try to explain it much. I get too frustrated because I have tried before and had long conversations and then a few minutes later have them ask me if I want to go in the car somewhere with them. I just tell them no, thanks for asking but I am so uncomfortable in a car I might as well be on a roller coaster. Do you want to go on a roller coaster ride to the store? I know there is no answer. I am over there being an answer after almost 20 years of it. I was hoping that vertigo would lessen after menopause but that did not happen. So I guess I am self diagnosed and don’t have any great ideas for things that have worked other than Valium which prob helps just about everyone but I don’t want to stay on it and it becomes ineffective over time anyway. It’s my best hope short term right now until I get a better idea. Without it I would be walking everywhere. Am trying some meditation also. Didn’t mean to be so long, but I wanted to join the discussion. Thanks for reading.

245

Hi, I got my balance problem way back in Feb/March 2009. I had a very bad viral illness in Nov 2008 that lasted 2 weeks which the docs think I never fully recovered from, however I was back at work and only slightly tired, nothing major.

Either way, I woke up one morning in March 09 and felt like someone had put a pill in my drink - although I hadn’t been drinking the night before, so this new strange feeling couldn’t be hungover/still drunk, I figured it was a cold coming on - I knew something wasn’t right though. I’d never felt quite like this before.

This feeling never went away, Where are we now… 2012. Brilliant.

Had most testing done and all results are clear. Docs think uncompensated VN that turned into chronic MAV. I am doing VRT and on pizotifen to try and get better. Feel there is no hope anymore. Walking helps. I now no longer have caffeine/alcohol/nitcotine. All of this I am coming to terms with, acceptance is hard.

What I’d like to know is, I never had any symptoms of headache/migraine prior to this. I simply woke up and have been f :!: d ever since. Why!? and How!? Can anyone explain this - also I don’t think I’ll ever be who i was before, I’ll never be the old me again. I get glimpses of her, but I’m 24 (got this when I was 21). My prime is gone and now I have ‘migraines’ - just seems a bit like shove her in a box that fits. How can one ‘catch’ migraines after a viral illness. That doesn’t make sense. I never had a predisposition to headaches/migraines before and now they are silent and I’m ‘dizzy’ 24/7 - doesn’t sound like a probable causation to me. I no longer work. I no longer do anything really.

246

Hi everyone,
My story is pretty long, but to make it short, I have been through numerous doctors and because of one doctor who noted “psychosomatic” on a report, I went about another year or so without a diagnosis, until one day I demanded to see an ENT to find out what was causing my pulsatile tinnitus (the sound of my heart beating and my blood flowing in my left ear at all times - enough to drive me stark raving mad)!! FINALLY - a doctor took the time to actually put a stethoscope up to my ear and actually heard what I was hearing. He called the neurology department and got me in to see a neurologist that very same day (unheard of)!! The neurologist was spectacular!

He moved quickly - sent me for a CT Scan and tons of blood work. He sent me for an MRI, that I couldn’t finish because of an attack of vertigo - had to repeat later with the help of diazepam. All came back good, except a deficiency in Vitamin D. Even so, he was concerned with the symptoms I was having when I would have attacks of vertigo and how they would only come sporadically, or when traveling. He sent me to see a neurotologist in Chicago! Yet another great doctor!!

After more hearing and balance tests it was determined that I have migrainous vertigo or MAV. He prescribed a vitamin supplement regimen along with a no sugar, no grain diet and suggested yoga or other balance promoting exercise like qi gong and/or pilates. I felt great for a while - until one evening after a spinning class. I just felt off and sure enough the next day I had a full attack of vertigo with all of the classic symptoms (for me) - nausea, diarrhea (the urge to urinate/go #2), photophobia, hyperacusis, spinning, and general confusion or the feeling of just being “off” as well as heavy headed.

The problem I have now is that I seem to be on a plan for prophylaxis, but have nothing for an acute attack. A recent attack while on a shopping trip in Chicago prompted me to find a forum - it is hard because my family doesn’t understand. They worry, but when (like this last time) I get sick on trips or to where I am non-functioning or physically ill, I feel so alone and feel even more horrible for always ruining their good time…and mine, for that matter.

I am so glad to have found this site - I don’t feel so alone and hope to find out what I can talk to my doctor about with regard to emergency meds/treatment.
Looking forward to hearing from and reading more about all of you!
Andrea

247

Hello Andrea
Welcome to the forum - you have found the right place to come for support but sorry you’ve had all the trauma to get here. We understand all the ‘weird’ stuff & difficulty finding a doc who can diagnose & treat MAV. Who did you see in Chicago? Hope your preventative med is helping but a lot us find we need an extra fix for those bad days. I take Ativan, others Valium, etc. My local doc. prescribes this for me. How long have you been taking the prophylaxis, which one is it? - it may be you need to be on a higher dose to get rid of the dizzies.
So much to read on this forum - try Scott’s’ Survival Guide for MAV’.
Just post on the Discussion Board & you’ll get lot’s of help & support from us MAVers.
Barb

248

Hi Barb!
Thank you so much for your reply. I actually went to the Chicago Dizziness and Hearing Clinic, I believe it is associated with Northwestern Hospital and I saw Dr. Michael Cherchi. It was an awesome experience.
Unfortunately, I probably used the word “prophylaxis” too loosely - I am currently taking magnesium, riboflavin and calcium, plus vitamin D due to a deficiency. As far as other meds, I was given a script for phenergan, which I take when I actually have an attack, to reduce vomiting. I have been taking this vitamin regimen since November 2011. Other than that, I am on a no grain, no sugar diet and have switched to local, grass-fed dairy and meats - I have been trying to adhere to the migraine diet, but I find trying to do it all at once is slightly overwhelming. One thing at a time, one day at a time - I don’t need any other aspects of my life spinning out of control - pun intended. :o

My symptoms started over five years ago while on vacation in Mexico. Doctors kept saying it was altitude sickness from flying - but I always doubted that because I never got sick flying home, only when we would arrive somewhere. Then, because of the symptoms of vomiting and diarrhea, I was sent on a two year journey to find the cause - bacteria, liver, gall bladder, etc. Shortly thereafter, I was labeled “psychosomatic”. Then the ear problems started about two years ago - this is when the second leg of this crazy journey began and here I am…

I am discouraged, which I can see from other replies, many others with MAV are as well. My family thinks I can just “get through” it by breathing and they tell me to “just relax” - when I am in the midst of an “episode” that kind of talk is useless…

I will definitely take a look at the survival guide…because that is exactly what I need to learn to do. I just want to be able to travel and not get sick, I want to be able to run for exercise, walk without seeing the ground moving, to hear when I get up in the morning, to sit on a beach on a hot humid day and not worry about getting sick.

I know EVERYONE says this, but I am SO glad there are people in this world who get this, who know what I am living with and who know it is more than just a panic attack or something that can be solved by Lamaze breathing exercises. :wink: Truly appreciative of this forum!

249

Hi and welcome, Andrea. Glad you finally got a correct diagnosis. There is nothing worse than being sick, knowing something is wrong, having serious trouble functioning, but being labeled “psychosomatic” (or hearing one of two dozen other ways of saying “it’s all in her poor little head”) and being told you just need to calm down and forget about it and everything will be OK. It’s hard enough hearing it from doctors, but family members, too? Unfortunately, most family and friends are happy to jump on the doctor’s lazy “nothing really wrong” conclusion and put no effort into trying to understand what’s really going on.

The diet sounds like a tough one. It can be a long process of trial and error with medications, diet, managing triggers, etc. I hope you feel better and get your treatment optimized soon. This forum is a wealth of information!

Best of luck, :slight_smile:

Nancy

250

Hello Everyone

I will try to keep it as short as possible. In June 2011 I started noticing that I was feeling a little off balance. It was getting worse every day and came to a point where I couldn’t move without getting the feeling that I would fall over to my right side. For some reason it always feels as if I am being pulled to the right. Never the left side. Anyway, at that point I faced the common symptoms of a heavy and foggy head, off balance, and dysequilibrium. I did not face any spinning vertigo attacks, headaches or visual disturbances. The off balance, foggy head and dysequilibrium started getting better on their own and the ENT I visited in Singapore diagnosed me with vestibular neuritis presumed to be related to my sinuses. I do have some sinus problem which showed up in my MRI of my brain but nothing major. I took the medicines which the ENT prescribed and the symptoms vanished in 2 weeks. The medicines were tebonin (improves blood flow to the inner ear/brain), Betaserc, Aerius (anti-allergy medicine) and a nasal spray (steroids).

I then had a similar attack again in August with all the above symptoms except this time I would get a sharp recurring headache through out the day on the right side of my forehead which would last for 1 or 2 seconds and go away. Again the ENT told me to continue the same medicines which he prescribed earlier. I took a second opinion from a neurologist in Singapore and he said “it could be vestibular migraine” due to the headaches. He prescribed me Lyrica. I began taking Lyrica (without knowing what this drug was all about and trusted the neurologist’s judgement) along with the other above medicines the ENT prescribed. I started getting better within a couple of weeks but this time it took longer maybe 2 months to be symptom free. I stopped the medicines once the symptoms were totally gone. To date I am unable to figure out whether it was the Lyrica that successfully treated the symptoms or if it was the other medicines prescribed by the ENT. I would place my bet on the Lyrica as I am sure it was MAV back then as well.

From October to January the dizziness (off balance feeling and dysequilibrium) would come and go but not as fierce as the August and June attacks so I didn’t do anything about it and believed all this time that it was vestibular neuritis and my brain was probably compensating with the balance problem and it would eventually go away.

Beginning of February – BANG – another massive attack. All the above symptoms reoccured but this time with visual disturbances and nausea and it has stayed with me ever since. I happened to be in Sydney at that time. Once again no spinning vertigo but the rest of the above symptoms are existent including the sharp 1-2 second headaches in different parts of my forehead, foggy and heavy head, off balance, dysequilibrium and visual vertigo (objects shake left and right when I look at them and I cannot look at patterned rugs without getting the feeling that the patterns are moving). I visited a Professor Paul Fagan in Darlinghurst, Sydney, who has confirmed that my condition is definitely vestibular migraine :slight_smile: Sigh!!!

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I was wondering if this sounds like MAV to anyone? When I was in my twenties I would get dizzy when I laid down. It was a spinning out of control and whirling sensation that only lasted a matter of seconds and was gone. I ignored it and it eventually would go away. It can and went for about five years until it came with a vengence when i was about 25 and I was constantly spinning and could not keep anything down. I was hopsitalized and put on fluids and got better. When I was 30, I started to feel the sensation again only when I laid down to go to bed at night. Went to an ent this time who I believe did the eply meneuver on me and I was cured. Two years ago, I got sick and it started again. This tme i went back in to get the eply menuever done again and it got rid of the spinning but it left this after effect that I had never experienced before. Brain fog,fuzzy head, hard time in stores, could no concentrate, dizziness when i turned my head, very hard time using computers. Had to take a leave from work as I work on computers all day. Started Vestibular therapy. After about three weeks I was doing better and went back to work. At that time, the PT said I had bppv and a unilaterial vestibular hypofunction.

August 2010 it started to come back again. I was having spinning sensations and went back to vrt but the the physical therapist said she could not see the nystagmus. I was totally conused she coulnd’t see it and started thinking it was all in my head. Again, after a few weeks i started doing better but it never fully went away this time. In feb 2011, It came back again. Terrible brain fog this time. ( I remember that being the worst symtom). Again, still had the spinning sensation. The Elpy menever was done and the physical therapist still said she could not see the nystagmus. My ent did and Eng and it came back normal. I was so frustrated. Not that I wanted to have something wrong with me but I knew there was something not right and I felt like people thought I was making it up. It got somewhat better again but never went away. The Dec 2011, it started getting bad again. Very fuzzy head. Felt like my head could not keep up with me. Could not handle store,crowds,computers,going up and down stairs. Went back to ent who sent me to a new physical therapist. She saw the nystagmus. Said it was bppv. After ten weeks of vestibular therapy could not get rid of the nystagmus. I ended up going to a neuro-vision doctor who saw my problem as well and said my vision system is under duress because of the vestibular issues i’m having.

There is not Ent im my area who speciale in vestibular disorders so now i’m traveling 275 miles away to see a new doctor. The doctor there suspected mav. I get headaches but I’ve never classified them as migraines. I’ll get a lot of them over a couple of weeks and then gets better. My last bout with them was a couple months ago. What do you think? Sorry so long.

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Hi new to site but when I started reading stories I went “thats me” THis “vertigo” started 5+yrs ago.Out of the bule one day;I had no idea what was wrong but it affected my vision right away.Felt like my eyes were moving!Saw Internist (we were in PR)he sent me to a ENT who could of cared less.Gave me Antivert sent me home!
Gradually got worse,we moved to California saw another ENT did all tests they called it BPPV great I thought (wrong) Started having vibrations in my head all the time and 3 Drs later still the same.I am on Cipram and valium.My last Dr. a Neurologist who I liked, had me see an ENT to do all the usual tests,nothing showed up!He said anxiety seems to trigger it(yes at that time my husband was very ill so stress was a factor)but what about before and now? Last year before we came overseas there where days I could not drive going over rough roads would start the vibrations going.I am now thinking I must be crazy!!! My husband had to take a job over here in Oman OK stress big time but I raised 2 children without this!Hard to get my meds.Not like going to Walgreens in USA valium only given for 1 week so they write it so I can get enough for 28 days at a time.Grocery stores,Malls, large crowds make it very bad! Tomorow I am going to see a Migraine Specialist from Germany not sure if he knows anything about this but I would love if any one has some questions I should ask since I just learned about MAV. I did suffer with migraines most of teenage,adult life.Diet and new meds out then help alot.Then they stopped around when I was 49,this started 3yrs later.
When I went 2 days ago to get RX filled the Dr.that day said I should see a psychiatrist ! She was right about one thing ITS ALL IN MY HEAD! They would tell you that when I first started with the migraines years ago.Thanks for listening i need feedback :

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It’s so nice to meet more of the guinea pigs from Duke club. I am Number One G.P… I was misdiagnosed Bell’s Palsy on March 23, 2008, seen at 3 different ER’s, all same diagnosis. I discovered after doing some extensive research that I actually had Ramsay Hunt Syndrome (RHS). It started with severe ear ache, blisters in the ear (shingles), unilateral facial paralysis and severe vertigo. The blisters healed, the ear ache became tolerable, the facial paralysis has greatly improved, the vertigo was an issue only at bedtime. What I did have was chronic disequilibrium and balance issues, nasty brain fog, double vision, tinnitus, hyperacusia (some sounds seem very loud), slight hearing loss and headaches that would vary all over the grid. My headaches sometimes were just in the post herpetic (neuralgia - PHN) region of my eye socket, other times the top left of my head, or the base of the skull, or the sinuses, or both sides (like in a vise). Been quite a trip.
I have been seeing Dr. Kaylie since March 23, 2009. Last year he told me about a conversation he had with Dr. Linda Gray about my symptoms. Dr. Kaylie was thinking I had mild viral encephalitis preventing my brain from compensating for the loss of use of the vestibular system in my bad ear. Dr. Gray thought to check it through a lp, at the same time check the idea of abnormal CSF pressure. Had my first lp in Aug 2010. In less than two weeks I had major symptom relief. And so the project was born.
I finally relented and had a lp shunt installed on Nov. 1st of last year. My symptoms turned to low pressure, especially the headaches. UGH. Had a lp recheck in March and was low, so Dr. Linda added imitation spinal fluid, then the Neurosurgeon’s PA adjusted my programmable valve on my shunt, and I am finally getting big time improvements. Cognition is greatly improved, as is balance, double vision is gone, as is the tinnitus (thank God for that one). Headaches come and go, no longer have a daily ono-stop variety. I am having migraine auras coming more frequently. Not sure what that is about. Maybe I need to start doing the migraine diet to see if that will stop those. I currently take Diamox and Furosemide and amitriptyline (but may go back onto Gabapentin). At age 59 (I was 55 when I got sick), not quite sure what is going on. The Duke Docs are treating me for PTC/SIH (Secondary Intracranial Hypertension - secondary to the zoster virus ((RHS)) ).

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OMG - the site is AWSOME!!!

I am 55 and have suffered with migranes since I was 27. January24, 2011 I was hospitlized for three days with vertigo (after having the flu). In March 24, 2011 my ENT Doctor called and said they found a small acoustic neuroma tumor and Severe Vertigo BPPV.

I began to research doctors and ENT specialist - I went to Rush for acoustic neuroma, Mayo clinic and the hearing institute in Chicago. My Neurologist was not much help - I kept asking - could my migranes be associted with the dizziness that has never gone away? the Neurolgist answered no. I am not able to drive - working from home but had difficulty focusing and concentrating, my life was/is spinning out of control. I went to vestibular therapy at McNeal Hospital - 10% better than when I started.

I have taken varioius medications but now I am on Effexor (ENT) and just began taking Topamx (Neurologist - 3rd) and Metropropl. My second Neurologist was absolutey no help, was not a partner in my health care - he said the tumor is small is could not be causing the symptoms I am experiencing. Again I asked if my migranes could be causing the dizziness, could it be metaboic or food intolerence - he said NO. I have seen several specialist (ENT) and I am on my third Neurologist. Two of the Neurologist says there is no way my migraines could be causing the dizziness. One of the ENT Doctors says size of my tumor is small my dizziness could not be caused by the Acoustic Neuroma. My symptons has never stopped, the dizziness has to stem from somewhere! Since this illness I am also seeing a Therapist, helps to talk. Also since this started my blood pressure has elevated.

I am currently going to Loyola seeing a new Neurologist(3) I am praying this one is the charm. He has ordered blood test but all other test have been normal. He wanted me to know I AM NOT CRAZY - what a relief. He has not diagnosed Migrainous Vertigo he called it a hypothesis.

Current Symptoms - Dizziness 24/7, Migranes, Headaches, Nausea, Motion and light sensitivity, fullness in ears and ringing.

I have been off work since January 2012 dealing with this condition- I am back in Rehabilitation until June but at my wits end. I am reading the Blogs and there seems to be great Doctors that have knowledge in this area. I will definately investigate. THERE IS HOPE… :stuck_out_tongue:

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First of all congratulations to the creators of this site - just wished I had found it much earlier. There is a lot of comfort gained in knowing you not alone and not going mad when it comes to this insidious condition.
My story starts just over 2 years ago. I was 32 and living the high life in London on my OE with a great job earning good money. Life felt like one big holiday (which there were plenty of) and things couldn’t be better. I had had a bad virus for about 3 weeks (all in the head) and had started to recover. I decided to take a weekend trip to Amsterdam. I smoked some very strong cannabis and had a really bad reaction - heart palpitations (thought I was going to die). Returned to London and went to work on the Monday where mid morning I had a ‘normal’ migraine (one with pain). I have suffered acute migraines since I was a teenager however as I got older there frequency reduced to about 1-2 a year. They only ever affected me for about 2 days then I would be fine. Anyway 2 days after I was experiencing ongoing dizzy spells and nausea which usually would have subsided with an acute migraine. Due to the Amsterdam incident I thought it was something to do with my heart so took myself off to the walk in clinic at the hospital I was working at (I had not seen a GP since I was 17 so had no Dr). Anyway they did a bunch of tests and turned out my heart was fine. 1 weeks later and I’m still having dizzy spells so sign up with a GP who prescribes me an antiemetic which helped with the nausea but not the dizziness. At this stage I am feeling terrible, not able to concentrate very well at work and starting to have ‘panic attacks’ at the train station as I keep getting this overwhelming urge to throw up! 2 weeks later I am describing my symptoms to one of my physio colleagues who suggest I see the balance disorder service at the hospital I work at. Luckily they see me pretty much straight away and do a raft of tests and diagnose me with vestibular migraine and prescribe propranolol 10mg. Anyway life continues and symptoms stay pretty much the same though have good days and bad days however the toll soon gets to me and all I can manage is a day at work and then come home to sleep. This carry’s on for 6 months to the point I have no social life and most of my friends are steering clear of me as I am not the most joyful person to be around!. So I decide a long holiday is what is in order and leave my job put my things in storage and head back home to NZ for what I think will be a 3 month break and this ‘thing’ will be gone. Well here I am 1.5 years later and it hasn’t gone. I am living with my parents and haven’t worked since!
I am currently on 60mg nortriptyline which seemed to have been controlling the symptoms (about an 80% reduction) and was planning to head back to the UK however had a relapse 2 weeks ago for no apparent reason. So more internet trawling led me to find this site which I have been spending a number of hours reading other people’s stories and seeing how my migraine ‘journey’ is so similar to many others. Anyway info from this site has given my some additional things to take to my GP to consider trialing and some hope that there may be a light at the end of the tunnel albeit a dim light in a very long tunnel! Anyway as we say in NZ ‘Kia Kaha’ (be strong and my thoughts are with you) to everyone out there with this very hidden, little known about, but very debilitating condition.
Shane NZ

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Just wanted to welcome Shane and Spring to the site (with the usual caveats that we’re sorry you have to be here). Lots of great information which will hopefully help you in your quest for wellness.

Shane, one of our delightful members, Muppo is in a similar position to you (but in reverse, she’s from the UK but currently residing in NZ). You might want to PM her regarding help finding a doctor in NZ.

Vic :slight_smile:

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Thanks Vic. Site has been great have a list of things to take to the GP. One of them is peractin which I see you are on - how do you find it and what dose do you find beneficial? Just trying to come up with an effective drug that may help augment the Nort. Muppo has recommended discussing an anti epileptic such as gaba.
Shane

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First time poster. Not new to the forum. Really great support for people with Mav. My issues started last February while on a business trip in Anneheim, California. Started with minor waves of dizziniess and turned into almost passing out in my hotel room. I ended up in the emergency room diagnosed with BPPV. After returning home I was treated for BPPV for the next 6 months. I rarely took the meclazine b/c it wiped me out. I did not change my diet at all and sometime in July or August everything just got better. I was perfectly normal with only a few mild dizzy spells after a night of to much drinking (first sign of a trigger) until February of this year when I had a late night of drinking and took a Tylenol with codeine before going to bed. The next morning I had a meeting with a client and I remember like it was yesterday. I was jacked on caffeine and felt anxious and as soon as I sat down with my client I felt like I was going to pass out. Everything came back in a flash and has not gone away since. I have had the MRIs, etc., and everything is normal. I finally went to see a neurologist who diagnosed me with basilar migraine and has me on 180 mg of verapamil er and .5 of klonopin both at night. Neither one seems to help too much. I do have good days and bad days and my main symptom is imbalance and full head. I was having bision disturbances and that seems to have cleared up.I have radically changed my diet and no longer drink caffeine and am trying to follow David Bucholz diet plan. I did cheat last week on vacation and had a really rough week so I feel pretty confident that diet is playing a big role. I feel like I need to drop the klonopin and increase the does of verapamil and continue to work on my diet. That being said, I also feel like there is an underlying anxiety issue that is not being addressed. Thanks for the forum. I feel like I am educating our local docs on MAV :smiley: . Almost forgot that I do have a history of migraine with aura but they were very infrequent.

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Hi Chioca and welcome to the forum,

It sure does sound like you have migraine - what you describe is all too familiar. Great work on getting things happening with your diet and glad that that is working in some way for you. I think anxiety and/or stress is Bad News for all of us with migraine so good luck sorting that out too.

Plenty of great information and lots of on this forum.

Vic

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It’s been exactly two years now since I was sent home from a job I loved which is a tough pill to swallow!

I’d been on a sailing holiday and as I’d experienced before, had the old ‘sea legs’ for a few days when I got back to dry land and to be honest, thought I was being a bit pathetic. But, unlike before it just got worse and worse to the extent I was walking into door frames and crawling on the floor. I went to the GP who diagnosed labyrinthitis (June 2010), I needed to rest but it should get better after a week or so. I (stupidly) attempted to go to work the next day as, come on! - I’d just got back from holiday, but was promptly sent home as I could barely stand. Things just got worse and worse and I tried to get back to see my GP but ended up on the pavement unable to get off the floor and was taken to A&E, treated for dehydration and given prochlorperazine and betahistine and told it could take weeks. I moved home to live with my mother as I just couldn’t function, I was only ok if I stayed still in bed.

As I continued I seemed to make some improvement and then seemed to revert back to my initial state. I had another short stay in hospital where all tests came back essentially normal. As I have had migraine with aura since I was seven years old an ENT consultant suggested that the vertigo could be due to migraine. I saw a local neurologist who said it couldn’t be linked as I wasn’t having migraine headaches with it. I remember commenting that I had, in fact, not had a migraine in ages and as I’d been burning the candle at both ends prior to the vertigo and had been half expecting to have some. He did start me on amitriptyline just in case which made me loads worse but I stayed with it as I was a bit desperate. I have to add that my GP surgery was useless, I won’t get into some of the awful things that happened with them. Please if you are new to this, see a specialist who knows what they are talking about, I can’t express enough how important this has been to me.

Fortunately we read an article in a national paper where Dr Surenthiran was profiled. We decided enough was enough and went to see him privately for a second opinion. AMAZING, the relief to see someone who could explain everything that was happening to me, was positive in my diagnosis(MAV in Dec 2010) and adamant that he could make me better. I broke down in tears and asked if I could hug him! I had actually started believing that I was going crackers and all the symptoms were in my head.

By this point I was noticing that I was being ‘set off’ by the gravel on the drive, by wall paper patterns, any busy areas and shops were just impossible. Walking even short distances was a major challenge. If I’m tired there is no point even bothering to leave the house as I know from experience it will end badly. The vertigo gets worse and worse until it all gets too much and the next thing I know is that I’m on the floor. I have done this in so many places now I’m really lucky I’ve got a stubborn streak that means I keep trying. I don’t suffer from anxiety like I know a lot of people do and I’m really thankful for this. I then feel exhausted and have to go to bed. It’s all very variable. Sometimes I can go and sleep for a couple of hours and feel better and sometimes it makes me feel awful for weeks, even months like I’m walking around like a zombie on a giant bouncy castle (interesting image!). I feel generally drunk most of the time and that I’m on a different planet to everyone else (this is on a good day), it makes it a very lonely place to be. I think what’s really hard is that I look like a healthy young woman, or just plastered, yes I’ve had people give me wide berth in Tesco’s before; they clearly thought I’d taken something! You have to laugh or you would just cry!

Friends have been supportive but I don’t think most of them really get it, how can they when they are on a different planet to me most of the time? It’s my fault too, I try and make out everything s ok when it’s really not most of the time and I have quite a dry sense of humour so I try and make a joke of it. I have been to a few weddings but this involves complete bed rest for a week or so prior, depending on how bad things are, and then days, weeks, after the event to recover. So it’s not my friends fault. They see the laughing joking girl on that day and not the planning and the aftermath. I guess I should be grateful I get to have that day, some MAVers don’t even get that.

Stress and tiredness has always been a major cause of my migraines so no surprise it makes the vertigo really bad. My breakup with my less than supportive boyfriend was really unhelpful, he just thought I had gone a bit mad and it was all a massive inconvenience to him as we couldn’t play tennis any more. I have always had (comedown) migraines. I have never identified any other triggers.

Dr S was great. He put me on the migraine diet and started physiotherapy. He took me off amitriptyline and started nortriptyline which made a huge difference for a start as the side effect profile is much better. Unfortunately, I started getting tachycardia’s on it after about six months so had to come off it. I have since tired pizotifen which seemed to make me worse. I’m currently on pregabalin which has worked so well with no side effects I was even contemplating going back to work part time. Unfortunately, I had a massive relapse and I’m currently really ill, struggling with lots of migraine symptoms like pins and needles around my eye, numbness of half my face, headaches, fatigue as well as the vertigo discussed above. I have started topiramate (or topira-not-my-mate but I hope we will be very good friends soon) which isn’t much fun, but I’m willing to give it a go, I really want some sort of life back. I realise chances are I wont have my old life back but some sort of independent happy life where I can work and just nip to the shop without causing a scene would be brilliant!!

So I’m currently in a massive mess but staying optimistic that Dr.S will fix me. I think it really helps to have a consultant that you trust.

Anyway, all in all, never have got off that bloody boat but really hope to one day!

Really glad I found this forum, sorry I’ve gone on a bit, it’s therapeutic don’t you know :lol:

Sues