Hydrops & MAV

I had my first attack of vertigo in July 2013 when I turned from my back onto my right side in bed. I saw the room move up and down quickly and then it subsided when I got on my back again. For about a month afterwards I experienced a brief rotational spin every night when I leaned back to go to bed. The spins stopped after I had the Epley Maneuver done for BPPV in August 2013, but ever since I have still been experiencing a floating kind of movement upon leaning back in bed. Ever since the first attack in July I have also had chronic floating kind of dizziness during the day. Sometimes this dizziness occurs along with a tension-type headache. The floating/dizzy feeling definitely seems to get worse with changes in the weather and hormonal fluctuations. I had all the standard tests for inner ear tests done, and the results were all normal except for the ECOG tests done in both December 2013 and April 2014 which suggested endolymphatic hydrops. I also had the ECOG test done in January 2014, but the test result then was normal. My doctor is calling what I have “Meniere’s Syndrome” since I seem to have hydrops but don’t have any hearing loss or tinnitus.

I have taken steroids for 2 weeks on two different occasions to try to bring down the inner ear pressure but haven’t noticed any difference. I am also being treated for migraine associated vertigo in case migraines are involved. I tried amitriptyline but couldn’t tolerate the side effects so switched to nortriptyline which has been easier to handle. I started on 10 mg per day for a month and then increased the dose to 20 mg. I have been on 20 mg for about 2 weeks but haven’t noticed any improvement yet. I’m also on a low sodium diet and have been given some daily vestibular exercises to try, including the Brandt-Daroff exercises since I feel the worst when I am lying down. The exercises just seem to make me feel worse, but the low sodium diet does seem to help.

I’m wondering if anyone has had a similar experience, and if so, I would be grateful for any information about their diagnosis and treatment. I have found this whole experience very frustrating since it’s been hard to reach a clear diagnosis and I’ve been dizzy for 10 months now. I am a PhD student and find it very difficult to get work done.

I’m also wondering what information anyone has about the relationship between migraine and hydrops? Can migraine cause hydrops, or vice versa? I’m assuming BPPV cannot cause hydrops, but maybe the BPPV somehow triggered a chronic migraine brain which triggered hydrops? I can’t reach any clear answer on this and would appreciate any information! Thanks!

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Studies have shown that there is quite a high percentage of MAV sufferers who also experience BPPV episodes. The ECOG tests are often not entirely reliable. Menieres is often a “first diagnosis” when a dizzy patient presents!

Your symptoms are highly suggestive of MAV and would suggest a neurologist/neurotologist would be the best doctor to see for diagnosis and ongoing treatment. Read the documents available on the forum esp. Dr Silver’s info.

VRT is not recommended until condition is stabilised by medication. My Vestibular Migraine was triggered by VRT so have first hand knowledge! Also would recommend stopping the Brandt-Daroff exercises - if your BPPV is controlled then the exercises are only going to make you feel worse - again from personal experience!

I have had Vestibular Migraine for over three years and two episodes of BPPV during that time - one only last week by turning over in bed (a typical cause). Fortunately quickly fixed by my physio! Inner ear pressure (right ear for me) also a typical MAV symptom.

Nortriptyiline is a good start to get things under control. Can’t help with the hydrops - others may have done that study.

Welcome to our forum

I have a similar condition

Nortryptoline has helped my migraine symptoms but im now left with the hydrops, the constand ear fullness is driving me crazy

If anyone knows how to treat the hydrops please let us know

Thanks for the responses. I was seeing a regular ENT doctor at first but have been seeing a neuro-otologist for the past few months. The ear fullness is annoying, but the constant dizziness is much more annoying for me since it interferes with my ability to work and causes me a lot of stress and anxiety. Hopefully I’ll notice a difference after being on Nortriptyline a bit longer. I might have to increase the dose a bit since I’m only on 20 mg.

From what I’ve read about MAV, it sounds very likely that’s what I have. However, the description of secondary hydrops on vestibular.org also sounds similar to my condition (continuous dizziness rather than spontaneous attacks, no significant hearing loss):

vestibular.org/secondary-endolym … ydrops-seh

But I guess maybe hydrops and MAV are both going on?

The strange thing is that I had no issues with migraines or dizziness before the BPPV started. It’s like the BPPV somehow triggered all this!

I think I’ll stop the exercises for now since they are just making me feel worse!

Thanks :slight_smile:

I have suffered MAV for the past four years. But I also suffered migraines for over twenty years. My doctor prescribed amitriptyline to control the migraines. Only a short while after starting on amitriptyline I had my first vertigo attack. Each attack lasts some three or four days when I have to remain absolutely still, not moving my head an inch otherwise the room spins away into blackness. It struck me that since I started having vertigo a tracks I have not had a true migraine as I used to. Makes me wonder if the amitriptyline caused the vertigo but stopped the classic migraine.

What you describe rcg33 is exactly how it started for me in 2011. Just woke up one morning with the room spinning as I turned over. I had a few more vertigo attacks over a few months and ended up being referred to an ENT specialist. He ordered the full selection of tests; MRI, the balance test with the air blowing in to your ear (can’t remember the name) and the one where the electrodes go in your ear and the machine makes a clicking noise.

The result was that the ENT diagnosed basilar migraine with hydrops which my GP then assumed was meniere’s. The strange thing was that according to the testing, it is my left ear which has (very slightly) diminished function, though it is my right ear where I experience the fullness and tinnitus.

The whole experience left me very disappointed with the whole medical process. The ENT had made his diagnosis and that was that. My GP (who is happy to write me a prescription for whatever I ask for) seems to have little understanding in the area and even less inclination to work with me to expand on it.

Fortunately I have not had a vertigo episode for quite some time (I quit the super-stressful job and cut some more food groups from my diet) and the symptoms I am left with on an ongoing basis are mostly manageable (though I am peaking at the moment which is why I am here on the forum).

Sorry rcg33, this is turning into a big whinge! I await with you and UPGRADER for any further insights re the hydrops…

I have started to come at this from a new angle, before this thing hit me, I was dealing with ibs, inflammation in my joints and insomnia , I was also diagnosed with pylori a few years back’,diet changes have eased my symptoms some what so I’ have started a new protocol on trying to fix the gut,

People that have had h pylori tend to have lower stomach acid, the acid required to break down foods properly before it hits the intestines

So I have now added probiotics and betaine hcl to my supplements, the first couple of days I took the betaine I had stiff joints, but as the days have gone on I have noticed an improvement in my ear fullness and cognition, I am going to continue with this and I will report back any developments

I can’t believe migraine has given me persistent tinnitus so I wonder if I developed hydrops that has increased my sensitivity so I now develop migraines since I had no history of migraine (I think i had one migraine before in my entire life)? I also get a strange fluid feeling like a leaking feeling … is that a feature of hydrops? I almost never feel fullness.

Careygibby, FYI I was diagnosed with Secondary Endolymphatic Hydrops by a couple of doctors.

I believe I still suffer from it, but the symptoms have reduced to over many years to just annoying tinnitus and very mild disturbance of my hearing with some sounds.

My brain has compensated for the hydrops I suspect and the persistent tinnitus/hearing issues are the only markers that I still have an issue.

I had all the symptoms reported by “MAV” sufferers, so I strongly believe there is some kind of relationship here.

I definitely don’t believe I have had “two conditions”: basically persistent and variable hydrops will cause you to decompensate and cause all the neurological fallout.

MAV/VM as a migraine condition remains a hypothesis (link requires trust level 2 for access). Hydrops has been imaged, though I have not personally had a high enough resolution MRI nor an ECOG to be absolutely sure in my case.

But using common sense, it does not make sense to me that persistent ongoing tinnitus, year after year after year is one long migraine!