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#401

Hi Jamie,

Sorry to hear of your story, I’m a 43 old male in the UK and my symptoms started about a month before yours. I’d say you’re symptoms are pretty typical to those on here and I have a lot of those except that driving was also bad for me and in fact it first came on when I was driving at 70 on the motorway!

If you can it may be worth getting a private appointment at a Bupa hospital etc - it usually costs about £150 for an initial consultation and about £100 for a follow up - not that bad in the scheme of things, though fortunately I was covered through work. Fortunately I’ve managed to struggle back to work and keep my job (had about 3 months off) and am slowly improving now, somewhere about 75-80 %. For what it’s worth I didn’t find my neurologist all that helpful but the ENT people were and my GP is very open to trying different meds which helps.

Anxiety goes hand in hand with this condition but is a symptom NOT a cause in my experience and one of the hardest to deal with. It really sounds like you need to need to start trying some of the meds and find ones that works for you.

Good luck.


#402

Hi all,
I’ve lurked here a while, so thought its time to present myself. I am a 32 yr. old man, diagnosed with MAV recently. It all hit me in July 2013, after an exhausting three-day trek over a mountain and a couple of nights out drinking. I can remember it first hit me like a panic attack during the night, and then came and went until it settled and became pretty much constant. I never had migraines before, allthough my mother had it. In the beginning of all this crap, I would spend all day in bed and be miserable with anxiety through the roof. Spent my days researching (as much as I could) and for a long time, thought I had Labyrinthitis or VN. Saw a lot of ENT’s who could find nothing wrong with hearing or nystagmus. Then I finally got to see Dr. S in London Blackheath, he diagnosed me, put me on Nort 10mg going up every 2 weeks, the 6 c’s diet and VRT. Symptoms are:

  • Constant rocking sensation 24/7, allthough better in mornings. Feeling it in the head like I am being pulled down at times. It’s just weird.
  • Tinnitus and cracking/popping ears, right ear is worst.
  • Light sensitivity to artificial lights (particularily LED lighting, star like trails of head lights of cars etc). This is so &%$# annoying. I am sure I will get used to it, but its hard. Its just a constant reminder at night.
  • Mild fatigue (better now)

Unlike others I dont get visual vertigo or motion sensitivity, I never have true spins. I can never figure out when I actually have migraine attacks, I never get headaches. And I actually feel good while driving and good when I am doing physical stuff, working out, swimming, running. Am currently off work and spent a lot of time going to doctors/researching stuff, now I am just focusing on getting better. Working out helps me a lot, I try to do it at least 3 times a week. I feel like I got some kind of control of my symptoms and know what to expect from this disorder, and after a month on Nort my concentration came back and the brain fog lifted, so I feel like I can be old myself in some ways, and its moving in the right direction. I try to stick to the diet, but I cant give up alcohol as somehow it a few glasses seems to improve my symptoms and make me forget about MAV.

My main problem at the moment is getting acceptance from doctors/other people for this disorder. I live in a small country with an extremely conservative medical profession. They’re all obsessing about BPPV like it’s the only reason people get dizzy. I am pretty sure even people with MAV think it’s all BPPV and keep doing Epley maneuvers and what not for years without improvement. It’s just ridicullous.

Well, anyway, I am happy I found this forum and community, it’s helped me greatly!


#403

For most of my life I would occasionally experience unexplained nausea, dizziness and flu like symptoms. Around mid May of ’09 I started experiencing these symptoms on a more regular basis. My symptoms lasted most of the day and sometimes included headaches and light and sound sensitivity.

In mid June of ‘09 I started taking Nexium, My doctor believed that acid reflux could be the cause of my nausea and dizziness. My doctor also ordered an MRI due to my daily mild headaches and family history of strokes. The MRI came back normal.

In mid August ’09 I stopped taking Nexium since it wasn’t helping with my symptoms. Three days later while taking a warm bath, I turned my head to the right and suddenly experienced extreme nausea, dizziness and vertigo followed by vomiting. I also began experiencing extreme fatigue and diarrhea, my symptoms never subsided. After many months and visits to multiple doctors, I still had no clear diagnosis.

Over the past 4 years since my migraines be came constant, I tried 17 different medications and went to 13 different doctors including Mayo Clinic! I finally got a diagnosis of Migraine Associated Vertigo and Chronic Subjective Dizziness from Mayo Clinic.

Unfortunately none of the therapy or medications that were prescribed helped except Gabapentin which gave me about a 10% improvement and vitamin B2, Co Q10 and magnesium which also gave me a slight improvement. I’m also currently trying Petadolex but its to soon to know if it’s helping.

My symptoms are constant and their intensity can change without warning. For example, my symptoms may be at a low level but 30 minutes later they can be high enough where I’m experiencing a full blown attack and need to lay down in a dark quiet room to recover or sleep it off for 12 hours or so. Due to the severity of my symptoms I am homebound 90% of the time.

My symptoms are constant but variable throughout the day, they include…dizziness, headache, fatigue, flu like feeling, nausea, light/sound sensitivity, odor sensitivity, weakness, body pain, abdominal discomfort/bloating, occasional vertigo, blurred vision, confusion, head pressure, neck pain, tinnitus, brain fog, insomnia….the list goes on and on.

Some of my triggers are…
-Moving my head from side to side causes EXTREME dizziness and nausea and can trigger an attack.

  • A long list of foods, I now read every ingredient of every food I eat to identify possible food triggers. Food triggers can wipe me our within an hour of eating them!
    -Stress can greatly increase my symptoms.
    -Changes in atmospheric conditions are a major trigger especially drops in barometric pressure.
    -Concentrating on something for too long.
    -Using a computer for more than 15-30 minutes.
    -Being a passenger in a vehicle.
    -Having an empty stomach.
    -Bending down then standing up.
    -Large open environments or excessive activity around me.
    -Not enough sleep or a bad night sleep.
    -Any constant activity that must be maintained such as conversing with people for extended periods and attending social gatherings.
    -Good stress can actually lessen my symptoms by a few points but only temporarily. Once the “good stress” is gone my symptoms return and are usually much worse.

These are some of the tests I had done:

MRI – results normal
Multiple blood and stool tests – results normal
Lyme Disease – negative
Possible gastric disorder- negative
Possible psychological disorder – negative
18 sessions of vestibular therapy, which made things worse – no help
Endoscopy – normal
Colonoscopy- normal
Gastric emptying test – normal
Ultrasound of liver – normal
Upper and lower CT scans – normal
Abdominal MRI – normal
Audiometric Evaluation – normal
CT Brain w/o contrast – normal
Full spectrum eye exam- normal
36 sessions with a chiropractor performing spine & neck realignment 3 days per week – No help
EEG- normal
ABR – normal
Otoacoustic emissions – results negative
Vestibular evoked myogenic potentials – results negative
Electrocochleography – results negative
Computerized dynamic posturography – results negative
Full blood workup – all tests normal
Mayo Clinic ran a battery of tests all came back normal

On a “pain/symptom scale” ranging from 1-10, my daily symptoms are usually around a 5, 6 and 7. I get spikes of 8, 9 and an excruciating 10 about 4 times a month.

Needless to say some friends and family are confused and don’t understand my disease. Some don’t even try to understand and some take my illness very seriously. The ones that don’t understand never see me when I’m at my worse. They say to me “you look fine”. I tell them “that’s because my pain/symptom levels are below 7 so I’m just able to function today.” They just don’t understand that I planned for this day! I rested for days prior to the get-together and avoided any possible trigger so I could be with them that day. I’ve also allotted at lease 2 days afterwords in case visiting with them causes my symptoms to spike. When I want to attend any social gathering I must rest for 2 days before the event and allow 2 days after in case my symptoms spike. I need to do this even if its getting together with a couple of friends.


#404

Hi everyone! It has been such a comfort to find this site.

I started getting migraines when I went on BC at 16 years old. I would get about 15/month. It was terrible, and the pain was debilitating. I switched BC multiple times trying to see if that was the cause, but anything i put in my body just made it worse.

The vertigo started when I was 18. I took the balance test, and my neuro concluded that it was MAV, especially since I was starting to have less pain and more vertigo symptoms. He gave me anti-vert, which did diddly squat. I started having depression in college, and the vertigo got worse. I would have periods of migraines, vertigo, or both for the next few years.

Eventually, I went off all estrogen based BC and my migraines, vertigo, and depression got better. I am happy to say that my depression has been kept at bay for nearly 6 years!

I went on a progesterone shot for BC, and all of my MAV symptoms disappeared. I’d get tension headaches when the meds wore off, but that would only be every 3 months.

I had to go off the shot last July, as it was causing bone problems. Took about 3 months for the migraines to return.

On January 1st of this year, I got brutally attacked by my dog. Needless to say, it was traumatic for multiple reasons - one being cellulitis. My vertigo came back a month later.

My GP thinks the infection caused labyrinthitis. I went to an ENT, and I’m having the balance test (again) today and an MRI of my inner ear on Friday. I’m a little nervous, but pretty certain that my test results will come back negative. I’m 99% sure this is MAV, and probably hormonally driven, as it had been in the past.

My vertigo is like I’m on a boat. I don’t get the whirls or spins, nor do I think it’s from head position. In fact, I mostly get it when I’m looking forward and not moving. I also feel like I’m still moving when I’m in a car and the car has stopped.

My family is worried for me, but I try so hard, as I do with everything, to stay positive and take each blow as it comes.

Thanks again for this community! It’s comforting to know I’m not alone. I’ll let you know how the tests turn out!


#405

Hello

I am new to the site but i have been viewing it for several months now to get information on MAV which has been really so helpful. I have been diagnosed with migraine variant disorder a few weeks ago but I had already guessed this is what I had even though I have been told by doctors for months I had vestibular neuritis. I woke up in January with the room swinging backwards and forwards and was violently sick for hours with this. After this episode I was left with blurred vision, visual vertigo, walking on a boat feeling etc truly hideous symptoms 24/7. I could not lye flat and felt sick alot (motion sickness and very heavy head like it was full of weights) Pressure on the right side of my head. Looking back it was so awful and I struggled doing anything, i have not been at work since and its been hard just trying to cope day to day. Things have got better, my vision is clear now and i am walking on a boat less but it is not normal yet that took about 3 months to improve but I still struggle in supermarkets, patterns and busy environments. I started the MAV diet and was on Ami 20mg and I saw an improvement but now changed to Nort because side effects are less and the consultant thought this was better, been on this a week. Slightly digressed this week but this might be because of the change of meds. I am not sure I have posted this in the right place but the thing i am struggling with is I am feeling so low about this. I used to be a happy confident girl and this has shattered my confidence, I can t think clearly, I can 't do nearly as much as I used to I have a constant pressure in the right side of my head with a pulsating feeling.
Things are getting better but my mood has spiralled to a point where I don t recognise myself anymore.
I really enjoy reading the success stories as it gives me some hope of recovery but its like my life is on hold and I find that difficult to accept. I have been off work 4 months now and I am so worried that I won t be able to do my job again. My consultant was very reassuring but i am not coping very well with this and worried i’ll never live a normal life. I also have cut myself off from friends and family as I feel nobody understands these symptoms because I look ok! I suppose I writing this because its nice to get it off my chest to those that might be going through something similar and any advice on how to move forward on a day to day basis would be So appreciated.


#406

Hey all,

Another newbie here. My story is as followed. I was diagnosed with Labyrinthitis/VN 4 months ago, and over that period I experienced a whole barrage of horrible symptoms. Here is an extract from a letter I wrote to my first ENT visit a few days ago, who in the end said he suspects I may have had VN, but the symptoms also point to MAV:

"On Saturday 15th of February, I was at work, coming out of the reserve (store room), when suddenly my body was pulled on a hard left angle, and I couldn’t walk straight for a minute. This shocked me, as it came out of nowhere, so I instantly took a break and checked my symptoms online. I wasn’t sure what it was, and that afternoon as I was going home I bought a chocolate bar to give myself energy, thinking I was having another hypotension attack (I have low blood pressure, and have had in the past attacks of light headedness that only left if I consumed something sugary and lay down with my legs elevated above my head).

From that day onwards the symptoms gradually got worse. I began to feel unsteady and unbalanced. My vision was gradually getting blurry, and I felt like was walking in a dream. The brain fog and derealisation didn’t last longer than a few weeks, but it scared me. I work in retail, so the artificial lighting was aggravating the symptoms as oppose to natural lighting outside. There was also a strange pulsation/bobbing sensation, which began to show up in my head, neck, hands (including fingertips, which felt like they had heartbeats) and feet. That symptom would gradually get weaker over the following months, however would still remain in my head, hands and feet. I noticed the bobbing seemed to move in rhythm with my heart. If I am looking at my mobile phone, my hand “ticks” back and forth. If I look at the fringe of my hair, it does this also. My feet also do this when I sit perfectly still. Palpitations were also strong during the early days. I recall one night, I had slept with my necklace on and woke up seeing the pendant bouncing on my chest to the rhythm of my heart.

The vertigo and dizziness was minimal and did not stop me from performing daily tasks throughout the the whole time I have had this illness. I have only really had a few really “dizzy” moments, but my main problem seems to be imbalance, and a feeling of swaying and rocking (which is noticeable if I am standing still, or stabilising my chin in both palms on the table). I have tried simple tests such as standing on one leg with my eyes closed, and tend to fall over quickly. Thankfully, I did not have the room spinning vertigo I have read about. The vertigo was mild, and so was the nausea. I did not throw up, but at one time I had dry heaving.

In the following weeks, my vision caused me head pressure and eye strain when I was in busy environments such as grocery stores. I also noticed a slight blur around the edges of people, which was persistent even outdoors in natural lighting. It took me a good two months for those symptoms to become minimal and finally go. The eye strain in malls comes back on rare occasions.

It was about two months in when tinnitus suddenly struck. I woke up one night to the ringing in my ears. In the following weeks it slowly reduced and is now at a tolerable level. I occasionally get pulsatile tinnitus in my right ear, and at night when I lay on my pillow I can hear my heartbeat.

Symptoms

Balance problems (disequilibrium, rocking and swaying sensations)
Occasional dizziness (barometric pressure and weather fluctuations)
Sinus inflammation (red eyes), which I only treated two months
Tight/stiff neck (disappeared after 2nd/3rd week)
Left ear frequently feels warm
Left ear occasionally feels cold and wet behind eardrum (although no signs of otitis media)
Heart palpitations
Pulsating/bobbing head, neck, hands and feet
Can hear heartbeat whilst sleeping on pillow
Could feel pulsating in finger tips in the first month, which came back for brief moments
Strange vibrating/shuddering convulsion in chest (has decreased in time)
Blurry/unfocused vision (this still comes back from time to time)
Eye strain (could not bare looking at busy environments in first couple of months)
Derealisation (left in first month)
Brain fog (left in first month)
Nausea (on and off)
Burping (most days for the first month – no other illnesses or dietary connections)
Tinnitus in both ears (pulsatile tinnitus in right ear that comes and goes)
Fullness of left ear
Popping/crackling of ears when swallowing or flexing ear muscles
Headaches and tingling in various parts of brain/head
Tightness of forehead
Paresthesia in hands and feet
Fatigue

Possible Contributing Factors

I had a terrible diet, drinking a lot of energy drinks, late nights, and had high stress levels prior to this attack due to a situation at work. Last year I had shingles in January at the beginning of last year, which also arose from a poor diet (low immune system) and high stress levels. I have read medical journals and articles online saying that both the shingles and vestibular neuritis virus are from the same herpes family, and lay dormant in the body, responding to low immune systems and stress. So my main suspicion is VN/Labyrinthitis. In the past, I use to be bad with ear hygiene in the sense that I would use pens or paper clips to clear wax out of my ears. Disgusting to admit that, but I wonder whether any infection could have happened via that?

Also, I constantly ground my teeth at night for several months prior to the attack. I have read that bruxism can contribute to the symptoms by stimulation of the trigeminal nerve.
Throughout my entire life, I use to get migraines during weather fluctuations (i.e. prior to a storm). I suspect it had something to do with my sinuses. I haven’t had a weather migraine since I was struck down with this thing, and my latest reaction to the storms we’ve been having is head pressure and dizziness, which could be symptoms of Migraine Associated Vertigo. My sinuses were inflamed when I had the CT scan, and during the first two months my eyes were quiet red, until I finally used Avamys.

Prior to this attack, there was a lot of mould on the ceilings of my bedroom, bathroom and computer study. Since then, I have had the landlords clear the mould streaks off, as I also suspect that might have caused the sinus infection. Or possible the dust in the storeroom at work. I have never had an allergy test, so I do not know my allergies other than excessive dust and cats.

Other things that may or may not be related include a rock concert I went to a weekend before I was struck down. I was recovering from a stye as well in that week, but I don’t know if that is relevant or not.

Preventative Methods

I have changed to a low sodium and sugar diet, drink a lot of water, cut out caffeine and alcohol and eat more healthy than before.
I sleep regularly, and have not stayed up late in months.
I do basic VRT exercises that I have found online (YouTube), which has made me feel a little better. But not sure to what degree.
I have had a CT scan, MRI and a blood test, to rule out disease and autoimmune disorders like MS, and they have all come back clear.
I have taken Avamys nasal spray as prescribed by Doctor Ian Walsh (GP), which has since cleared my red eyes. But I also plan to get purchase sinus rinse as well, and an air purifier for the unit.
I also do sinus and Eustachian tube massages on my head and throat, incase congestion is contributing to symptoms.

Persistent Symptoms

Since this attack I still suffer from imbalance, head pressure, and occasional unfocused/blurry vision (I’ve noticed these hit me if I sleep in longer than normal – I have woken up with blurred vision, which has taken a few minutes to refocus back to normal). I have only had two minor dizzy spells that have lasted less than an hour.

Also, the paresthesia in hands and feet, and the bobbing pulse that shakes my body, was the major factor for me to get a MRI. I have read that these symptoms aren’t common in vestibular injuries. I cannot guess what the rhythmic bobbing is, because even when I’m not anxious and just relaxing, reading a book, or having a good time, it is still there. If it was anxiety, wouldn’t it be gone by now?"

After my meeting with the ENT (Dr Andrew Lomas), he is directing me to see a neurologist named Dr. Mark Paine. I wanted to have a referral to Dr Michael Halmagyi in Sydney, but Lomas said I should see Paine first because he is just as good, and well known as well.

My main questions are, if I have MAV, can it exist without dizzy spells? My major symptoms are: tight forehead (it went for a good month, and is currently back), pain that moves to different spots on my head, tinnitus (which has decreased), and imbalance. I also get strange unfocused vision from time to time – mostly if I have slept in of a morning (which is odd).


#407

Hello,
I was wondering how you have been feeling. I was dx in Dec 2013 with MAV. My symptoms are dizziness, especially in busy environments and with loud noise and lots going on. I noticed some more head and neck stiffness. I tried driving today and noticed that the head and neck feel lots of pressure and it is very difficult. I really miss being able to drive normally. This was the first time I tried driving for months. I thought I was getting better last summer, but it hit me very badly in Sept last year. We were in a grocery store and I felt so out of it. Like I was not there, almost like a dream world or out of body feeling. It really freaked me out and scared me. I have pressure on both sides of the head above my ears. Also, stress now seems to make me for more disoriented and frustrated and feeling dizzy now. All this started 10 weeks after I gave birth and right after a sinus infection

I have not been driving and tried to today. It was only a few miles and I use to drive all over the place. :frowning:

I am taking klonopin and I really want off of that because I do not want to become addicted or have any problems with it. May I ask what your symptoms are and what medicine has helped you?

Also, my ENG showed 25% vestibular loss but the neurotologist said that would not be the reason of my problems. Can you give me any information? Thank you so much for your time.
Nicole


#408

Hi Nicole,

Not much has changed for me.

I would suggest going to a neurologist that specializes in migraines. There’s a big difference between a neurologist who dabbles in migraines as opposed to someone who specializes in them, I went to many doctors before I figured that out. A neurologist who specializes in migraines tends to have a vast arsenal of medications, therapy, homeopathic remedies among other possible solutions to help lessen the discomfort.

I have done just about everything that can be done for my migraines. For me the best medication is gabapentin even though it only gave me a 20% improvement. What also helped was changing my diet completely and eating only natural healthy foods. No more boxed or bag foods and no more chemicals in my foods. I’ve gone on a complete migraine diet and have only been able to bring back a few items such as peanut butter and mozzarella cheese. I also do whatever I can to avoid all triggers which is not easy. I plan for everything days in advance and I allowed days afterwords for recovery. It’s been five years now since my migraines became chronic and I’m pretty used to this routine.

The symptoms you describe definitely sound like migraines. My migraines usually are accompanied by a mild to moderate headaches, rarely are the headaches severe. My worse symptoms are dizziness, fatigue, body pain and many many other symptoms, too many to list here, headaches are small part of my migraine symptoms list.

Busy environments and loud noises are a definite trigger for me. I also have a lot of neck and shoulder stiffness/pain. I used to drive 12 to 15,000 miles a year now I only put on about 3000 miles a year, I’m just too dizzy to drive regularly. Grocery stores are also hard for me, going through the long isles and scanning for items makes me very dizzy and nauseated. I also often experience the dream world/out-of-body feeling. I wound up in the emergency room a few times because of it. Stress is also trigger for me, I think stress is what caused my episodic migraines to become daily/chronic. Stress is bad for people with migraines. Weather is also a major trigger for me, unfortunately not much can be done about it. Taking a sedative for migraine attack is only a temporary fix and it’s not a good one either. Your neurologist should be prescribing prophylaxis type (preventative) medications.

I would love to answer all your questions about migraines. Ive had vestibular migraine attachs all my life but my migraine symptoms became chronic/daily 5 years ago after multiple stressfull situation. It seem that once migraines become chronic its very difficult to control them. I dont think my chronic migraines will ever be eposodic again.

For the first 2 years of my chronic migraines, no one including me knew what whs happening! My doctors were no help until I went to Mayo Clinic and talked to a migraine specialist.

Let me know how I can help, I’ve gained a lot of experience over the years. What works for me may not work for you but I can tell you about my experiences which may help you gain more control.

Ron


#409

New member from Australia here…found this forum via Google tonight.

I’m still a little lost as to what I may actually have, but after much reading it seems I display many symptoms of Vestibular Migraine/MAV [I have seen it written as MRV?] or perhaps early Meniere’s Disease.

I have never had migraines * in the past, although my mother suffered from classic migraines most of her adult life.

Some history for me [a lot of my symptoms, not initially thought by doctors etc to be related, are starting to gel with me]:

Multiple childhood middle ear infections in the 60’s [I was born in 1963], categorised at the time as ‘glue ear’, with chronic left ear tinnitus since this time. Pure air tone hearing tests & diagnostic testing over the last 10 yrs reveals nil significant change in this left ear *.

Diagnosed with chronic sinusitis [one or two initial infections only] approx. 10 yrs ago, but I remain always ‘blocked’ on the left side, especially worse when suffering from mild head colds & the like…my normal classic ‘cicada or cricket-like’ tinnitus left ear rises at these times, but generally constant at all other times anyway.

Six years ago experienced episode of dizziness when rolling over in bed & moving head or position suddenly [told by G.P. at the time it was BPPV], which lasted for several days & then dissipated, never to return.

One year ago [August] had several weeks of ‘fullness’ in the left ear, intermittent occipital dullness left side of head only, plus altered hearing levels/sensitivity to noise, culminating in a 30 minute progression to vertigo, nausea, collapse, shaking, & photophobia one morning. Admitted to hospital, given oral Stemetil medication…symptoms subsided & then discharged home with a ‘diagnosis’ of Vestibular Neuritis [I don’t agree with this, but who am I to question as a mere layman? lol]. Slept for hrs & had a dull occipital/base of skull headache afterwards for a short while.

Nil new symptoms of any sort until 29th July this year, at which stage [after only a couple of days of left ear ‘fullness’ with increased tinnitus this time], I collapsed quite suddenly at work with only a minute’s warning, & the same pre-symptoms as above, although much truncated. Again admitted to hospital & another emergency Junior House Dr [no doubt reading my 1st admission notes] put Vestibular Neuritis on my Discharge papers. I have since read it is nigh impossible to have two episodes of this in a lifetime??

Several days ago I saw a Vestibular Physiotherapist, who conducted balance tests & ruled out BPPV, as the symptoms of vertigo & nausea [apparently one has to have 'loose calcium crystals in the lateral vestibular canal for a firm diagnosis of BPPV] could not be re-produced via the Epley Maneuvre & another technique involving goggles & sudden movements of the head by the physio.

And this is where she has suggested I may have a vestibular migraine problem, or even early/mild Meniere’s. I would much appreciate any advice from you folk who already have travelled the same confusing road of ‘misdiagnoisis’ or conflicting/similar symptoms as I am.

I should also add that I experienced another vertigo or spinning sensation for several hrs earlier tonight [again partially resolved with Stemetil], but this time I was at rest, sitting in a chair at home, & no triggers of any sort I can think of *. Are there any guides I can read here which may collate or compare the differences and/or similarities between MAV & Meniere’s? Any Australian resources people may know of?

Thankyou in advance,

Kevin.***


#410

Hello everybody!
I will start with background pmh, then tell my vertiginous migraine story.

I am a 32 year old female with past history of menstrual migraine with visual aura onset age 12. I have significant family history of migraines (grandmother, mother, and both of my brothers). I have no personal history of motion or travel sickness, however my mother and both of my brothers get motion sickness easily. As a child before menses I felt ill with headache and would vomit after eating chocolate, hotdogs, sausage, or pepperoni pizza. As an older adult I realize all of these items trigger migraine in me, so it is quite possible that my migraines started early on.

As a younger adult (age 20) I was diagnosed with interstitial cystitis or painful bladder syndrome. They tried medication including a bladder diet, prelief before meals, elmiron, elavil, and bladder instillations. Nothing helped and I remain with urinary urgency and frequency. At age 25 I developed horrible stomach pains and diarrhea bouts that would land me in the ER for rehydration and was diagnosed with irritable bowel syndrome. They treated me with immodium, lomotil, hyoscyamine, and questran powder. This resolved on it’s own after about a year and has not been a problem since. At age 29, I developed painful joints bilaterally with rash and fatigue, with ANA blood work titer 1:640. At this point I am diagnosed with undifferentiated mixed connective tissue disease. I tried many medications (lyrica, doxepin, advil, ultram, cymbalta, neurontin, plaquenil and elavil) without relief. What I do know is that I used to run and hike and be extremely active and the joint pain and fatigue brought my exercise and activity to a halt. I remain with bilateral symmetric joint pain in my legs.

In August of 2013 I attended an international emergency medicine conference. This involved flying to Barcelona, and a week long cruise. On the third day of the trip I developed dizziness in a perfume shop in Eze. It was 102 degrees, about 3pm french time, and the dizziness lasted 15 minutes. I chalked it up to dehydration, being on a boat and now a mountain top, and smelling hundreds of lovely perfumes. The next day in Florence the dizziness hit in a gelato shop and lasted 15 minutes. Again I chalked it up to heat, fatigue, and crowds of people. The next morning in the shower on the cruise ship the dizziness recurred and was constant, like being pulled to the right. Nausea and vomiting ensued. The rest of the trip was quite awful for me, as was the flight home, and car ride from the airport. I took meclizine and benadryl without effect. I started vomiting for 2 days upon return home and remained dizzy and imbalanced.

At first, the doctor thought it was fatigue from international travel and motion sickness, and I took zofran and meclizine with no relief for a week and a half. I remained constantly feeling like I was being pushed to the right, which in turn made me nauseated. I went back to my doctor, who noted nasal congestion and right facial pain on exam and diagnosed me with sinusitis. I was put on 14 days augmentin, decongestant, and flonase. In 2 weeks I remained dizzy and my right face had a “just got punched” feeling. I also developed right ear pressure with intermittent sharp pains. Back to the doctor who said sinus infections are hard to treat and was started on additional antibiotics and a steroid course. No relief. On to another doctor who diagnosed me with “spinny”, then middle ear infection, then chronic sinusitis, then allergic rhinitis, then bppv, then sent me to a dentist “to evaluate for dental abscess”. After the dentist replaced a crown, found no source of infection and no tmj to explain the dizziness and facial pain I switched my pmd to UCLA as it was now November and I was constantly dizzy. I was starting to get scared.

My doctor at UCLA did a hearing test, found decreased hearing low pitched frequency on the right side. He referred me to ENT and neurotology, who did ENG, VEP, and about a thousand different tests for balance, vertigo, etc. At this point, I felt imbalanced pulling to the right, right facial pain like I was just punched, and right ear crawling and clogged like it was plugged or something was in it. I also developed difficulty focusing my right eye. This bought me a full optho workup, CT of my sinuses, and MRI with IAC views, all normal. I was referred to rheumatology and neurology. Rheumatology said labs looked good but CRP elevated, neurology thought not MS but might be migraine, recommended repeat follow up with ENT/ neuro-otology. Neuro-otology thought autoimmune and not migraine and wished me the best of luck but was unable to help stating “a migraine wouldn’t last that long”. ENT saw me again the end of April and said “resolved eustachian tube dysfunction” as my ear was now popping and hearing returned to normal, although the dizziness persisted.

At the end of April I developed a bronchitis and the dizzinesss instantly was gone. I had a wheeze, high fever, and cough and felt like a million bucks. I went to the doctor who prescribed antibiotics and steriods and said I was the dumbest person ever for waiting 3 days to see him. I told him about the 8 months of dizziness, facial pain, and ear problems and he said get back to neurology because I shouldn’t be dizzy like that, and that infection should not make me feel well. I politely thanked him with ZERO intention of going back to another doctor. I had about 3.5 weeks of normal life. I was back to the gym, out with my friends, and loving every second of being 32. I even planned a trip to Mexico. Little did I know…

May 25 I awoke with dizziness and vomiting out of the blue. This dizziness had with it a sensation that my right visual field was missing. I was unable to walk stairs, drive, or stand in the shower. I couldn’t see people to the right of me or locate items on my right side. I went back to the doctor who sent me back to ENT and neuro stating “it is your ear or your brain”. In the meantime awaiting my appointment I had to go to the ER, and was given phenergan and ativan to stop the vomiting. They recommended admission to the hospital but I came home and had my mother stay with me. The meds made me bedbound, but slowed the vomiting. ENT that week said possibly Meniere’s or endolymphatic hydrops and started me on diamox and elavil while awaiting repeat MRI with IAC (normal again). ENT then referred me to neurology and back to rheumatology as “the problem isn’t your ear”. Rheumatology said I was healthy but should see neurology because the dizziness was disabling and not being caused from an autoimmune condition. Neurology saw me and wanted MRI brain and spine to r/0 MS (also normal). I was diagnosed with virtegenous migraine with persistent aura and started on Namenda while awaiting a migraine clinic appointment. I had to take an unpaid medical leave from work due to dizziness, n/v, and visual deficit. At this point I felt something was really wrong with me and had a hard time believing this was migraine as I had no headache, and no migraine of mine ever lasted MONTHS. Was I ever in for a sad surprise.

In July I was seen by a neurologist specializing in migraine who started me on verapamil. My vision started to evolve as I regained the right lateral field but started seeing flashes of light and snow like tv feed in both eyes. My facial pain dissipated and was replaced with the sensation that my teeth were crawling. I know it sounds crazy but I would have ripped out my teeth if I could have. The migraine clinic doctor seemed pleased with this at my appointment in August and agreed to continue verapamil. She wanted me to continue to taper up and increase my activity and exercise. She also told me the migraine was unlikely to stop on it’s own as I had met the threshold and had a continuously irritated brain, so preventive measures were the best for me. I tried walking in the park and 2 attempts at stationary bike with immediate onset photophobia, frontal headache, and bright flashing lights. This was the first true headache I have had related to this and the maxalt did nothing to quell it. This had the dizzy back as bad as the worst, and I went back to ER after 3 days of unresolved headache for dizziness, nausea, vomiting, frontal headache and bright flashing lights in my vision then dark spots. They gave me decadron, iv magnesium, and phenergan. This rapidly resolved the dizzy and headache, but the bright flashes remained. The neurologist then added lamictal to the verapamil, which made me hoppy and paranoid. She also added Zomig to the maxalt, although this does nothing for my head pain, dizziness, or vision issues.

I went back to my pmd to discuss my headache as it is unbearable paired with the visual lights, dizziness, and nausea and I had to do something while awaiting my next migraine clinic appointment. I have had insomnia for many nights as the dizziness and flashing lights awaken me. Yes, they flash even with my eyes closed, and apparently are coming from my irritated brain and not my eyes at all. WEIRD. My PMD believes me to be anxious, depressed, and wants me to seek psychiatric care “for the mind body connection”. I know I am not crazy, and being dizzy without seeing right for months on end would make anybody anxious. Also, 32 year old people should be able to stand in the shower and walk in the park without being so dizzy they vomit and have to lie down. They also should be able to drive. I will make an appointment with psych hoping they can help me cope with the stressors of chronic illness (worried about future, prognosis, medications, employment, insurance company not getting medical records, disability paperwork, etc) As you all know, these things are nearly impossible for an ill person to handle. I am saddened there is a stigma on mental illness, and that crying at a doctor’s appointment after a year of ongoing dizziness is viewed as inappropriate. I have been bedridden many weeks now, and a good day involves taking a shower, bringing in the mail, and sitting on the couch. I have basically lost the life I worked very hard to build from this disease.

I have now just started depakote ER 500 mg daily and will increase to 1000mg daily this week. I am up to 240 mg verapamil. I am taking phenergan for the nausea. I supplement with coq1o 400 mg daily, b2 400 mg daily, magnesium glycinate 400 mg daily, b6 b12 folic acid lozenge, omega 3 epa and dha 2126 mg, and ginger 250 mg twice daily (for nausea). I remain constantly dizzy in varying degrees and the bright flashing lights and photophobia are constant since my ill fated walk in the park. I remain out of work on medical leave while anxiously awaiting the dizziness to stop. The doctors keep telling me they have never seen anything like this, so to read the stories here has literally brought tears to my eyes. I am not alone, and this is not as uncommon as the doctors would have me believe. So far the only triggers I can identify are heat (100+ degrees and shower) and physical exertion. Thank you for reading my story. It feels great to get it off of my chest in a non-judgemental environment. I am sorry there are so many with MAV, but take great comfort knowing that I am not alone :smiley:

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)


#411

Hi Kelley,

Although much of your story sounds like MAV, I can’t help but wonder if an auto-immune condition could be at play here, too. What jumped out at me was 1) your hx of interstitial cystitis; 2) response to steroids; and 3) symptom resolution with high fever.

So sorry you are feeling so poorly…


#412

I agree with the concern for a rheumatology diagnosis-

I have been off and on with 4 different rheumatologists since 2011. As of my most recent lab work (I think June) all of my autoantibodies were negative, complements normal, crp normal, ana equivocal. The best they came up with was the undifferentiated mixed connective tissue disease. All I know is I hiked many miles, played 2 rounds of softball, went to sleep, and woke up with bilateral rash on my legs and leg pain like no other that has not waxed or waned or moved since 2011. That was followed by fatigue like when I had mono and a facial rash that had the doctors concerned for about a week but then they lost interest. Dr. Baloh (UCLA neuro-otology) believes my issue is autoimmune and not migraine variant, however my UCLA rheumatologist Dr Grossman does not. A few other neurologists also think it is classic migraine variant. What a mess. I can tell you my current neurologist at the migraine clinic thinks it is strange to have migraine symptoms lasting that long spontaneously resolve with illness, only to recur with increased severity. SIGH. I think Monday I may call to get a second rheumatology opinion. Nobody seems to want me, and as usual my labs can’t seem to commit. I have been told by many doctors now that I am lucky, yet somehow this does not feel like luck. I feel very unwell most days, with the joint pain and now the dizziness and ear/eye things. I guess I want to be fixed, and if that can’t happen I want an answer. Thank you for your opinion, it seconds what I feel inside that something isn’t right :smiley:


#413

Hello, my name is Tracey and thought I would share my story. Back in 2004 I was riding in a car as passenger in front seat. It was dark and raining and the windshield wipers were going. I gasped out loud scaring the driver and my mom who was in the back seat. I thought we were hydroplaining I had the sense that the car was spinning around I closed my eyes. I was assured that we were not hydroplaining nor was the car spinning. I opened my eyes and my world was spinning around me.

I felt like I was going to be sick and told the driver so. he pulled over and got a towel out of the trunk to give me. still with eyes closed I did get sick violently. when it was safe he pulled over into a parking lot and there I am out side the car in the pouring rain vomiting as my world continued to spin around me. At the time I didn’t know what was wrong with me all I knew was I was dizzy and very sick, and sweating profusely.

I got to my moms house and the driver and my mom had to help me into her house. I could not walk straight and it looked like I was drunk. The people sitting on the porch saw me get out and I said, no im not drunk. I spent the night at my moms house where I striped down to just my underwear since I was sweating so bad, I was soo hot. I continue to vomit as my world continued to spin around me. My poor mom is worried and asked if she should call an ambulance for me? I said no as she continued to take a ice cold wash cloth and just keep wiping me down I was so hot. I finally after 3 hours stopped vomiting (dry heaves by this time) and passed out.

The next morning I made a appointment to see my doctor and he said it sounds like you had a vertigo attack and refered me to a nuroligist, she did a v.n.g. a coloric test and said I had meniers. I continued to work and about a month later at work had another attack, taken out via ambulance this time and again at hospital diagnosed with vertigo. Started on mezaline.

I continue to work through the next ten yrs and the meniers would raise its ugly head and I would have a vertigo attack now and then. fast forward to march 2014, I work in the nursing field and never divulged that I had meniers when hired 3 yrs prior. The vertigo attack came back with avengence I was having attacks 2 times a wk at this point. my attendance was in jeperdy and I had two FULL BLOWN ATTACKS AT WORK IN ONE WEEK. I went back to my doctor after having 2 attacks at work in one week, they saw me at my worst thank god I worked with doctors and nurses who had to stop what they were doing to take care of me. not a pretty site!!!

My family doctor said to me, Tracey I don’t think you are going to be able to work anymore and I would advise you to file for S.S.D. I don’t want you driving anymore either! I said I would like to get a second opinion since I am only 54yrs old. He sent me to a university hospital J.F.K. there is a center their that deals with meiners and I did go. This specialist did a bunch of tests. vng test, rotary chair test, coloric test. it went on and on his diagnoses was meniers/m.a.v. and said your vestibular nerve is only functioning at 5% and I forgot to mention that I am profoundly hearing impaired (hate the word deaf) He said with all the testing I have done and the latest hearing test done from my audioligst faxed to him he sat me down and said , Tracey you have 4 listings here in my hands that is covered under the blue book for S.S.D.
and would advice you to apply. I had meniers, vestibular nerve damage, M.A.V., and profound hearing loss. I started crying and said I have worked with my hearing loss its the vertigo that is the problem he said again you are a prime candidate for ssd. So on 8/8/14 I applied. On 9/11/14 I had to resign from my job with note in hand explaining my disability. it was a said day when I had to walk away form my job.

I just was awarded S.S.D. on 12/1/14. They back dated my onset date as 3/21/14 when my doctor put me out of work to have futher testing which I just described. I was shocked that I was approved on the first try. most people are denied the first time they apply for S.S.D.( social sercurity disability) I cried when I got the letter stating that I am awarded S.S.D. I was so hoping to go back to work, but that isn’t a option for me. I am sad that my life I once had has come to a screeching halt and now am learning to live the life I am now dealing with. I never ever thought I would say I miss going to work!!!
thank you for reading my story,
Tracey


#414

Hi Everyone,
I’m a newbie here, but have been reading your site like crazy.

I am a 46y/o female living in California. I have had “normal” migraines with aura starting in my early 20’s. Things like fluorescent lighting and fireworks would trigger them. At the time, they were very infrequent, so medications such as Midrin were given, and that usually helped things. I also had dizziness issues starting at age 17 after a nasty bout of Mononucleosis. I would be walking and suddenly the room would spin for only a few seconds. It was very traumatic for me- I was afraid to drive. Dr. said I had BPPV, and gave me Antivert, which just knocked me out. These episodes were not associated with any headaches or other migraine symptoms that I recognized. About that time, I was also told I had Mitral Valve Prolapse, which freaked me out even more. I had heart palpitations, and was given Xanax to control the anxiety surrounding them. I then went through a period in my early 20s of fatigue, disequilibrium, and sporadic vertigo, especially in large areas like stores, with fluorescent lighting. Riding elevators would leave me “bouncing” up and down for weeks. Boats are out of the question for me, and always have been. I was told this was all anxiety, and given more Xanax. It did seem to help. I was then started on various SSRIs after having problems with disequilibrium while out in large areas again a few years later. They started me on them at full dose, which was horrible, and I would have to stop them. I almost became housebound, afraid of dizzy spells. Finally, one dr. started me on extremely low dose Prozac with Klonopin (the Xanax had too short of a half life, and was making things worse). This helped stabilize me, but my occasional issues with dizziness prompted me to continue with the Klonopin. I have been on 0.25 -0.5 mg of Klonopin for ~12 yrs. I did great for many years, although I could never take birth control-that would immediately trigger migraine with aura. I did have migraines maybe once every year or two for three days. But then at 40, I started up with atypical migraines. I had the blurriness in one eye for 6hrs, no headache- tested for various serious issues, but told MIGRAINE. I also had bouts of extended visual zig zag aura lasting hours with no headache that drove me nuts. Usually there was a trigger, like fasting for a test. I still managed to get by pretty well since these odd attacks were so infrequent.

That leads me up to my current issues. Two years ago, I started having a high pitched tinnitus in my left ear. It started out very subtle, and I didn’t pay it much attention. Soon thereafter, I started having “attacks” of sinus congestion, eye tearing on the left side as well. And achy pain around the eye, as well as muscle tension. The only thing that helped was nasal decongestant spray and ibuprofen. I went to my allergist (I have bad allergies to grass/trees), thinking I had allergies on one side only. She said it sounded Vasomotor, and that at my age with hormone issues, that can happen. Things like spicy or processed foods, exhaust fumes, smoke, and stuffy restaurants would set it off. She was concerned tho, about the tinnitus in one ear only, so sent me to ENT. ENT did audiological testing and it was perfectly normal. He also did the fiberoptic camera up my nose and said all was well, live with it. I was relieved, and managed to go on with things with the help of the spray/advil. But in the last few months, things have gotten worse. I get “attacks” of the left sided facial pain, congestion, and floaty, swimmy feeling in my head. At these times, the tinnitus ramps up to a louder high pitch. I have been told that others notice that I walk like I’m dizzy. I just kind stay near the walls and walk. I hate, hate, hate this feeling and want it gone! Sometimes the facial pressure will turn into pain around my eye/sinus area, but most of the time it just stays “pressure”. In August, one attack actually went on to vertigo which scares me more than anything. I was at home fortunately, but almost went to Emergency. I took a 0.5mg Klonopin and went to bed. I was better the next day, but off-kilter for a week. Since then, I have had more attacks, but no frank vertigo, until last Wednesday, when I had to grab onto a shelf in the store to steady myself. The true vertigo lasts only a few seconds, and I close my eyes to make it stop. But I’ve been somewhat off balance since then, like walking on a boat. I also have extreme neck muscle tightness, and tightness in the temple muscles during these symptoms.

My allergist, who is pretty smart, believes I have vestibular migraine and TMJ. She referred me to neuro, who I saw one week ago. She mentioned cluster type headaches- which seem to fit the congestion, eye watering, tinnitus, but I do not have the severe pain, and cannot identify a cluster time pattern. I know that migraines can present with cluster type symptoms. She gave me Relpax (a triptan) to try during a congestion spell. I tried it this week. It helped the face pressure, neck tightness, but not the tinnitus. It made me very tired, so I fell asleep for a few hours, so I don’t know if it helped the dizziness or not, as I don’t have dizziness issues when lying down or asleep.

Problem is, I’ve been feeling this way since Monday- oh and severe brain fog too. When I am having these symptoms, it is hard for me to have an intelligent conversation, and I am a scientist and need to do that! I am also afraid I will drop something important at work, or damage equipment. I have been home since the vertigo on Wed, and need to go back Mon. I have a hellacious 40 minute commute that is freaking me out, because now I am afraid of driving since the vertigo episode on Wednesday. But I cannot lose my job, so I will have to Klonopin up and hope for the best.

I really think I have had MAV all these years, from what I have read. Yes, I’m sure I have anxiety too, but the anxiety never comes until I have a dizzy spells first. And the benzos can work on MAV, so I think I was somewhat misdiagnosed all those years. I have a message in to the neuro after recent events, but not heard back yet. I also have an appt with TMJ specialist in January. I have a scheduled appt with neuro on the 23, and made a follow up appt with the ENT on the 22. Hopefully one of them can help me. I do not have a formal MAV diagnosis, but it’s looking that way.

I don’t think I have Meniere’s because there is no hearing loss whatsoever, even during my attacks. If anything, my hearing is even more acute and sensitive in that ear. I can’t stand lots of noise- it bothers me. Of all of my symptoms, the tinnitus when it gets loud, and dizziness bother me the most. I could deal with the pain/congestion stuff, but this is awful. I just want my life back! I saw my hormone dr. today who said my progesterone was rock bottom, and estrogen very high. THe ratio is not good, she says. I am to start on bioidentical progesterone cream to see if that helps matters. I hope so!

The only things that really help now are Klonopin and Advil. Surprisingly, some white wine in the evening helps me as well, although once in awhile, just a sip of wine makes that left sinus/nasal clog shut. I am not advocating drinking wine since everything I read about MAV and vertigo say to avoid alcohol. But for some reason, it helps. I do avoid red wine right now, as I think it may be a trigger. Vinegar, cinnamon, and hot pepper are very bad for me as well. Chocolate is hit and miss.

Thanks for having this board… it is very helpful.


#415

Hi everyone. New to this site and need your help.

Over 4 months ago I had issues that at the time I didn’t see as connected and they only lasted in short bursts. I’ve never suffered from migraines, maybe the occasional headache but who doesn’t? I remember getting into the car once and I could hardly open my eyes it was so bright. This eventually went away after about half an hour. I then was staying in a hotel while working and had a very strong cold pressed dripped coffee which after about half an hour of having it made me very ill and dizzy, not spinning just off balance so I put it down to just too much caffeine in my system, the next day the feeling went away. I then got a terrible flu that lasted for about 6 weeks, the cough was awful and persistent.

I do a lot of flying and after the flu which was a lot better I noticed on landing only that my head became extremely pressurised, I couldn’t hear and it eventually went away again. When I came home I had the same experience on landing and then for the next 2-3 weeks when I was out on my morning walk I would get unbalanced bursts, mostly when I went up or down a curb.

On the 9th September 2014, in which was a normal morning I went for a walk, had breakfast and a coffee. 2 hrs later while watching TV with my wife I had an intense feeling of unbalance, much worse then I had ever felt and thought I was having a stroke. My wife called the ambulance and they treated me as a heart patient. They found nothing wrong with my heart and discharged me later that day with BPPV. I felt awful. Long story short, since then I’ve had MRI, cat scan, hearts checks, blood tests, urine test, balance and hearing tests. Have seen GPs, ENT, and 2 neurologists. I’ve been diagnosed with LABS, VN and finally now MAV. The only test that came back with something was the caloric air test show a 31% paresis in my right ear, hearing was fine. Here is a list of my symptoms:

Unbalanced, like been drunk
Spinning vertigo on rare occassions, usually while I’m asleep.
Severe panic attacks and anxiety (I’m convinced they’ve missed something, how can balance make me feel like this?)
Muscle twitches
Pressure in head, on the temple
Sinus pressures
Lightheaded, feeling like I could collapse at any moment
Nausea, not vomiting
Looking down or up makes me feel like the blood has drained from my head
Heart rapid beating when balance gets bad

I’m taking verapamil 180mg SR for the last 2 weeks, no effect yet. I’ve changed my diet to the mav diet also. This is a huge mental battle everyday and it tricks me into thinking there is something more at play, when I get bad with balance I panic badly with it. It has just brought my life to a crashing halt. Do you all feel this way also? Any tips and advice would be greatly appreciated :slight_smile:


#416

Well, reading your story is as if reading my own, if that’s any consolation. I can relate to so many symptoms you have – almost all of them actually, except the real spinning vertigo which you do get on rare occasions, it seems? My vertigo is atypical: a feeling of disequilbrium and imbalance. Like you, I worry that something more sinister is at play. My long-standing anxiety and panic disorders are not helping with this. One symptom I have that you don’t mention is visual disturbances, like seeing geometric patterns, etc. (without a headache) when I wake up at night. My neurologist says it’s a migraine variant.

B/c I also have a tendency towards tachycardia, my cardiologist and neurologist agreed on Inderal (Propranolol) 80 mg, something that might work for both conditions. I can’t take more than 80 mg b/c my blood pressure is low anyway. For quite awhile, I did not feel any improvement; however, it’s been months now, and I do have less of the split-second faint feelings I used to have. However, the improvement is slight at best and much of what you describe I struggle with still. At least once a day, I feel as if I might pass out, this weird weak, almost short of breath feeling that leaves me energiless and worried, of course. That can last an hour or more when it happens. My cardiologist has even implanted a loop recorder to really give my heart rhythms during any of these concerning episodes a check. So, again, like you, I’ve had all the tests done: the heart monitors, MRI’s, ENG’s, blood work, etc., etc. I feel at my worst when in larger supermarkets or department stores.

One thing that does help a bit is Ativan .5 mg twice daily, sometimes 3 times if I’m really struggling. Of course, I’d rather not be on a benzo, but my psychiatrist is adamant that, at such a low dose, it’s not hurting me at all, and that, moreover, I should be more concerned with quality of life right now.

Unlike you, I’m not sticking strictly to a migraine diet. There are some things I’ve identified as being triggers (like strong cheese – feta and the like) so I do avoid them.

Not sure if this has been any help to you, but even if it’s a case of misery loves company, that’s something.

Angela


#417

Hi everyone,

I’ve been suffering from what I have self diagnosed as MAV for a little over a year now. It all started when I came out of seeing a movie, went to sit at a restaurant to eat, and suddenly I started to fall off the chair. Luckily my girlfriend caught me in time and it was all okay. I initially put that incident down to a once off and went home to bed to sleep it off. Woke the next morning and as soon as I got up I knew that my balance was off. I forced myself to sit through work, which was like hell on earth.

From that point on I went through an initial process of having terrible head pressure, visual disturbances, constant ear pressure and just generally feeling I’ll.

I tend to feel better when I’m sitting, lying, driving or running. It seems most of my issues appear when I’m casually walking, almost to the point where sometimes the off balance feeling is so intense I have to stop and prop myself up on an object just to give my brain a rest. That isn’t to say that I feel 100% when I’m sitting or driving though, just that I don’t feel AS bad. Lately though I’ve also had nausea accompany my main symptoms

The main symptoms I have now, a year later, are pressure in my ears, post nasal drip, head fog, blurred vision, nausea, tinnitus, and I find my symptoms are particularly aggravated by shopping centres and bright lights. I also find occasionally that I’ll get a lump feeling in my throat, a racing heart or dull headaches.

When this first started happening I went to an ENT and he sent me off for an MRI. It came back clear and was diagnosed with Eustachian Tube Dysfunction, handed some Nasonex and shown on my way. The Nasonex did nothing and so I started to explore other possibilities, feeling that it was more than just ETD. From that point I went on gluten free diets, food elimination diets, MAV diets. I’ve been to headache specialists with no luck at all. So far eliminating caffeine and alcohol has helped me a lot, but the symptoms are still there, just not as aggressive. I’ve also noticed that I go through waves of intensity with my symptoms, like I’ll be able to put up with it for a week and then for two days the symptoms are so aggressive that I need to basically spend an entire day laying in bed sleeping. Rinse and repeat.

I still go to work and try my best to lead a normal life, but I constantly feel like crap. I’ve just gotten so used to feeling crappy that it’s become normal now, even though it can be debilitating at times.

I basically came to my self diagnosis of MAV after having this for so long and observing and mapping my own symptoms. It just never felt like it was purely restricted to my ears, or just balance in general, because the symptoms are just so all encompassing. When this is at it’s worst, my brain just feels like it’s buzzing and on overdrive mode. I tend to feel alone with this a lot of the time, because it is so hard to make anyone understand how I actually feel. I look normal on the outside, but inside it’s like a war is going on in my body and I’m trying to be a peacekeeper.

I’m hoping to visit a top neurologist within the next couple of weeks to have this thing officially diagnosed and treated. I just refuse to give up really until I feel normal again.

I also have a baby due in the next week and a half, and the thought of taking care of a newborn whilst also feeling terrible is completely terrifying to me. It scares me to think that I’m not going to be capable of enjoying this time or even being capable of being a decent father :frowning:

These forums are so incredibly reassuring though. I really appreciate seeing everyone give their own stories and advice, it makes me realise that I’m not going through this alone. Thanks.


#418

11 years ago, when I was pregnant for the first time, I started having episodes of extreme dizziness, nausea, and vomiting such that I had to lie in bed for hours at a time. I went to the emergency room for the first couple of episodes where they gave me IV and Valium. I learned that Valium would help lessen the episodes, so I started taking that whenever I started feeling like I am getting an attack (everything spins, and feeling nausea). The ENT that I saw diagnosed me as having BPPV. Four years ago I read about about Dr. Hain and went to see him. He diagnosed me as likely having vestibular migraines, possibly Meniere’s Disease. He later ruled out Meniere’s because I did not have low frequency hearing loss, though I did have a hearing deficit at high frequencies in my left ear (I forgot to mention that I suffered from headaches as a child but the family doctor used to dismiss those as stress, but I don’t currently suffer from headaches).

I got the dizziness mostly under control (no severe episodes) through a combination of avoiding migraine triggers like soft cheeses, wine, etc., and vestibular physical therapy (a life-saver), plus the very rare valium.

The good news is that I have not had a major episode (with vomiting) for 2 years (though I am still dizzy). The bad news, as described below, is that instead I’ve had several episodes of sudden hearing loss.

The first episode was 6 months ago. I woke up one morning feeling dizzy and suddenly felt that my ears were clogged/blocked and I heard “white noise.” A few days later I felt like I had earplugs in my ears and my hearing got substantially worse. I went to an ENT who checked for fluid and there was no obvious cause of other hearing loss. A hearing test revealed that my right ear, which in the past had mild high frequency hearing loss, now had moderate loss in both the low and high frequencies. My left ear had gotten a little worse since I had a hearing test a year earlier. I was diagnosed as having “sudden hearing loss” and the doctor prescribed 60 mg Prednisone once a day for 7 days. After finishing taking Prednisone a hearing test showed that my hearing went back to its previous state. However, I developed a humming sound in my left ear.

Three months later I had another episode of sudden hearing loss. It was in the same ear, the right ear. I took 40 mg of Prednisone and the hearing went back to its previous state. This time the humming sound in the left ear has gotten much worse.

A month later I noticed further deterioration in my hearing and a hearing test confirmed that my hearing dropped in both ears (the last 2 episodes the hearing loss was in the right ear only) in the low tones. I took more Prednisone, rapidly tapering off because of side effects, and a hearing test showed that my hearing in both ears went back to its previous state. Since then I have had days that my hearing has fluctuated.

My ENT sent me to a rheumatologist to explore the possibility of an autoimmune disease. The rheumatologist sent me for blood tests to check for lupus, lime disease and many other autoimmune (and other) diseases. And all that came back is that I have very low vitamin D. The rheumatologist thinks, based on my responsiveness to steroids and his past clinical experience with patients with similar histories, that I have a non-specific autoimmune disease and wants me to take CellCept long-term lest I lose my hearing. He has had several other women with similar histories who have benefited from CellCept. I decided against taking it because of what seems like bad side effects and the possibility of developing infections.

I read about sudden hearing loss and it seems that while sudden hearing loss is relatively common, it’s uncommon to have recurrent sudden hearing loss. The ENT thinks that there is a high likelihood that it will happen again. The ENT is less sure that CellCept is the right answer, he suggested other drugs as possibilities and didn’t seem to object to the possibility that we just see if the hearing loss keeps recurring, as it does respond to steroids, though he pointed out that my hearing may not fully recover if it happens again.

I went to see a Neurolgist for a second opinion and he said that it sounds like Meniere’s because of the fluctuation and the low-tone hearing loss. My ENT noted that it could be an unusual case of Meniere’s, but Meniere’s could also be auto-immune mediated, so even Meniere’s wouldn’t preclude a diagnosis of auto-immune disorder.

I then went to see a Neurotologist who suggested that it is Vestibular migraine and recommended that I hold off on taking steroids, continue following the migraine diet, go back to vestibular therapy and take migraine supplements (magnesium, etc.)

So far I have gotten the diagnosis of auto-immune hearing loss, meniere’s, and migraine. I decided to follow the migraine diagnosis for now, since it is the lesser of the evils and seems to make sense given my history.

One more thing. I had a car accident 2 years before my first vertigo episode, and I had a stiff neck for several months afterwards, and I now have arthritis in the neck. I read somewhere that neck injury can cause vestibular and hearing problems; I wasn’t aware of any hearing loss until I had the dizziness episode two years after my accident. I don’t know if there is a relationship there.

If anyone else experienced similar symptoms, what was your diagnosis? What was the suggested treatment?

Thank you.


#419

I am currently in limbo with my situation as I don’t know what I have.

I have always had migraines as young as 11. I would come home from school and my mother would tie a towel around my head and I would wait in the dark for the pain to subside.

In my teens I discovered Advil which was a real lifesaver. It always did the trick and I never thought anything else was going on. During my mid-teens I always developed panic and anxiety disorder which I decided not to treat with medication. As a result, I went through periods of intense stress, both mental and physical, which seemed like a constant struggle.

I could deal with all of this because I was younger, I guess. The migraines never stopped except during my first pregnancy.

But prior to that, I would say that I developed a quite odd occurrence of vertigo. Six years ago I was going through a lot of stress trying to finish university and working full time. In the days before the actual attack, I felt myself swaying when I would watch tv. No migraines though.

This ramped up my anxiety and the next night I woke up feeling as if I was moving. It actually seemed like a pendulum was swinging back and forth inside of me. Anyways, it wasn’t BPPV because I had tests done and my doctor chalked it up to be anxiety and borderline nervous breakdown. I had periods of crying.

Anyways, that went on for 2 weeks when I calmed down, moved back in my with my mom, and relaxed. After that, I felt normal again and starting dating my husband. About two years later I started to feel off balance and a sense of dizziness when lying down. Not true vertigo just a weird shifting when looking at the ceiling. It was weird.

I did still get migraines but they were more hormonal (before my period), or when I didn’t eat in time or drink enough. Even being extremely tired would trigger them.

Anyways, that sensation also went away. Until recently. So now we are 6 years out from that time and I woke up one night and my head was spinning. I have been under extreme stress again. Self-employed, two kids and only 10 months postpartum.

The sensation went away after I went back to bed but I would notice that I would get positional vertigo while talking on the phone or looking down at my phone. I didn’t put two and two together, thinking I was having anxiety attacks.

But I would actually spin, something that has never happened before. And as soon as I would sense the spinning sensation coming, I would change head positions and it would go away.

But in between attacks, I would still feel off balance, leaning to one side, unsteady on my feet and for lack of a better term, floaty.

I finally got checked and it was BPPV. But now I still get migraines and even after the night when I awoke with my head spinning I got a migraine that lasted 3 days after that - again, something that hasn’t happened before.

It’s so confusing because BPPV can mimick migraines and vice versa. But based on BPPV definition, I had the classic symptoms.

Or did I? I also have extreme motion sensitivity, aura (can’t see out of my eye when migraine is coming), can’t go in grocery stores, etc.

Any advice would be greatly appreciated. I still have a residual dizziness from the BPPV … it’s awful and I am wondering if its migraine now.


#420

HI Kimmy, How are you doing now? I was recently diagnosed with vestibular disorder and had a caloric test done which revealed weakness in my inner ear nerve. I had a poor diet and worked a lot before this all happend. I guess it contributed to my issues. I take a lot of vitamins, magnesium, melatonin, and low dose valium only as needed to help. Have you tried VRT? Have you been trying different medications to help alleviate the vertigo symptoms?