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Diagnosis troubles

#1

I am so happy I found this forum

For the past 4 years or so I have had numerous issues with my ears which starts with my right ear feeling full when seeing my Doctors (UK) they advised either my ears had wax in them and needed to be clean out or on a couple of occasions no wax showing (arual fullness)and to use olive oil drops! didn’t help, when this happens my tinnitus goes through the roof, Reduced hearing in that ear and increased sound sensitivity, Dizzy spells which at first would last a couple of mintues however recently this has been longer,nausea for days, Periods when I feel I am rocking back and forth, Weather conditions/shades of grey causing bad headaches aways on right side behind my eye I then get exhausted and need to sleep the majority of these symptoms I have had individually or at same time for 15 years or so noted on my records,
Then last autumn I had my worst attack, was overseas, ears blocked up barely any hearing ( this happens every year when I travel), felt like half my head was not there, tinnitus through the roof ,slightly dizzy, Brain fog so bad (strange when I mention brain fog they don’t know what I am talking about!) nausea and exhausted for months after. This was dreadful. When I got home I thought enough is enough this been going on for years so i went private knowing how long the nhs can take. In the hope of getting answers.

My ENT doctor thinks it may be due to compacted ear wax (I dont last year I had my ears cleaned out 7 times twice so far this year) I have passed the vestibular function tests (came back fine) noted again hearing loss in right ear although noted as compacted hearing loss. I am losing my mind as although I understand the impact of compacted wax this has been going on for years now and keeps coming back! always starts with my ear feeling full (same ear). Its so dishearten Its got to the point now I feel I am going mad i know that this is not all in my head. I feel now i know the difference between blocked ears and the feeling of fullness.

As my vestibular/ct tests came back fine I have now been referred to a neurologist. The ENT states I do not have Menieres he could not see any symptoms associated with Menieres! and thinks maybe migraines are causing this. On a side note he did state I was the type of person that was too aware of their symptoms! didn’t know what to say other this has been going on for years with no answer.

Sorry to rant I feel just like I did in 2010 they cant see nothing wrong with you so get on with it off you pop. I thought given that all my symptoms keep recurring that going private would help. Can anyone relate to this

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#2

I spent 6 years of having dizziness, head pressure and ear fullness being misdiagnosed as eustachian tube dysfunction and congestion. I would have constant, debilitating symptoms for about 6 months at a time, every year, often in winter. I have now been diagnosed with vestibular migraines.

Does your ear pressure only affect one ear or both? Do you have any head pressure or headache? Any light sensitivity or noiae sensitivity? Any nausea or vomiting? Any mood changes auch as anxiety, depression, irritability? Any stomach symptoms? Any visual symptoms?

Those things might help differentiate between migraine or another cause. Have you had an mri scan of your brain, or inner ears? There are lots of things that share similar symptoms, including Meniere’s, perilymph fistulas, eustachian tube dysfunction and migraine and unfortunately the tests don’t clearly indicate a diagnosis, it’s usually down to ruling things out.

Can you associate anything with your symptoms startting, such as a period of stress? Allergies? Bad sleep? Particularly foods?

The nhs isn’t very good at dealing with dizziness
Have you had an audiogram done? It’s a metal rod inserted in your ear that tests for ear pressure and rules out eustachian tube dysfunction. Have you had your hearing tested?

I would suggest asking your gp to refer you to an audiologist to get hearing tests and an audiogram if you haven’t already. After that, suggest migraine to them. I had to suggest it to my gp who then referred me to a neuro-otologist. He knew immediately it waa vestibular migraine. Neuro-otologists who run vestibular clinics often know many vestibular problems and even if it’s not migraine, they can spot what’s wrong better than an ENT. Your descriptions of headaches on one side behind your eye suggest a migraine possibility but it’s important to get a brain scan.

#3

Hi Miss Migraine

Pressure typically in right ear. Headaches, Light sensitivity,Noise sensitivity,Nausea, Mood changes, small dizzies and big dizzies,On anti depressant for 5 years or so for anxiety/depression. Stomach cramps. Ramdon diaherria when i need to go straight away. When I get bad head aches I get black and whites pixels/pulsing when as open and closed.
Random feelings of something really bad going to happen this typically happens in August/September aniety goes through the roof. I have had 2 course of counselling

Brains scans Mri/CT scans both fine (2010 + 2018). 2 hearing tests in past 6 months both noted right ear. Audiograms came back ok. VEMP tests all fine

Stress does increase everything for sure, weather changes low pressure caused really bad headaches been given rizatripten which if I catch that early another helps but not allows,
Cant think of any food triggers

The last year really i have had bad headaches always on right side, scalp tender to touch when this happens, also very wired tingle at back on head feel like water droping right to left. As I say most of these I have complained about for years and year. Private ENT now referred me onto a neurologist

#4

Hi, and welcome. Sorry to hear of your suffering.

Best move you could make in your circumstances. Try to get to see either a migraine specialist neurologist or better still a neuro-otologist if one can be found. Although there are no definite conclusive tests for MAV/VM they are the most likely to be able to give you a diagnosis and advise you of your best treatment course. You should find friendly support and practical management advice on here and people who can relate to your history. Many people are initially misdiagnosed and given the run around in the NHS. Helen

#5

Good luck with the neurologist, that’s definitely the best step as your symptoms do sound very much like migraine could be a possibility although we can’t say for sure. You mentioned being on anti depressants… Some of them can trigger migraines so you might want to ask your neurologist or gp about that.

Hopefully the neurologist will help and you’ll finally get a diagnosis that’s right for you.

#6

Welcome to the board Craig!

Migraine is a fashionable hypothesis. There’s no definitive proof it is actually all migraine, it’s just very popular medical dogma. Simplifying this condition and calling it ‘migraine’ actually makes me cross. It’s so obvious to me that MAV somehow involves the ear. Both opinions are controversial.

It could also be some kind of ear trouble, if not Menieres. If you have no low frequency hearing loss it’s unlikely to be Menieres. If it is more continuous and not episodic its unlikely to be Menieres. But it’s a complex ole system around there and if there is some instability there it may well cause neurological fallout.

The fact you mention hearing loss is significant. I have mild HF hearing loss in my bad ear and my latest diagnosis is Secondary Hydrops (though I have been diagnosed with MAV and ‘migraine’ previously). For Secondary Hydrops you need to have some kind of driver, usually. Mine was the trauma of pointing a shower into my ear, believe it or not. There are other possible suspected causes, like over-straining, baro-trauma from plane flights. The Hydrops is the pressure that builds up as the condition is healing. The symptoms are identical to VM except that hearing loss is obvious. It makes sense that if the hydrops calms down, hearing would return to normal - it’s just pressure, right?

I’ve had that said to me. Very annoying and dismissive. They can proverbially bog off!

The only thing you can presently do is pursue all routes with your doctors to rule out other conditions, especially the dangerous ones, and then dedicate yourself to exploring the entire MAV protocol to see what works for you.

It’s a very frustrating condition and vestibular science has a loooong way to go before it can give people proper answers.

But take heart, it can and does improve and you can and probably will get better.

#7

Woke up this morning right ear blocked! head pounding. If this is just compacted ear wax as ENT suggests then why after 6 days since my ears were cleaned out would they be blocked now? so my choices are let them clean out again which could cause lasting hearing problems due to repeated cleaning or I can leave them as is which will just compact more and more leading to hearing damage. Really starting to get me down this keeps happening and happening.

#8

Unlikely the blockage sensation is ear wax so soon after they were cleared out. Ear wax takes months to build up. Discuss this with you ENT, he can examine your ears.

#9

Just spoke with the Doctor asked If I think its ear wax build up to come in and he will clean again. Raised concern about repeated cleaning will just make my hearing worse to this he confirmed repeated cleaning will not cause any damage and to keep an eye on as may be snot etc at the back end that’s blocking it up. Stated again this keeps coming back and back and back. Reply keep an eye on it. How does anyone get help these days

#10

Craig, how is the doctor cleaning your ears?

#11

Forget the name the ear suction one, not the syringing

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#12

Much better approach

#13

As @turnitaround so rightly says that cannot be ear wax not six days after cleaning. It takes months to build up again. From my experience I’d say it’s MAV reacting to the suction sensation during cleaning. I regularly get delayed reactions to stimulation and they usually start first thing in morning. MAV makes all senses hypersensitive and ears are right in there at the heart of things. Helen

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