I’ve been having symptoms for 2 years. ENT have now discharged me after balance tests were apparently normal - said there’s nothing wrong with my ears.
My symptoms are:
Intermittent random dizzy spells (lasting a few seconds)
Moments feeling as though everything is about to spin
Ear fullness - can last several hours or all day (varying degrees)
Ear pressure - can last several hours or all day (varying degrees)
When fullness and pressure particularly bad - discomfort around sinus area
Random ear pain and discomfort
Sometimes sharp stabbing pains
Low level noise - best described as what you get when putting a seashell to your ear. Other times a quiet whirring.
General unsteadiness at times
Woozy
Ear pressure particularly bad if wake up on the side of my bad ear
Feel “off” and slight initial dizziness sleeping on bad side
Moving head from bad side to normal or another position, feel iffy
Hair washing exacerbates symptoms (hairdressers etc or even in the shower)
Water in ear after hair washing causes ear fullness
Sudden "jolts" of dizziness
Occasional nausea
Sometimes ear seems muffled as though cotton wool in it.
Laptop and scrolling on my phone can increase my wooziness.
Sometimes get discomfort around cheek/sinus area and the small area between top of nose and eyebrow.
Certain foods such as pizza and sweet drinks make me feel woozy
I’ve been told that some inner ear conditions don’t show on the balance tests until more advanced / have severe vertigo/ dizziness.
I've been advised this could be early onset Menieres but others are adamant its Vestibular Migraine.
Just looking for advice please. Anyone else have these symptoms and diagnosed?
Thanks
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LXM827
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I have had some, not all, of your symptoms. I believe that these kinds of ear problems are sometimes difficult to diagnose but has anyone suggested you try the Eply procedure? If you look this up you will see what the procedure is and what it may be able to cure.
The procedure is best done by a health professional - nurse, doctor, physio.
Mine was attributed to neck injury without further investigations - 15 years ago. The service I was referred to a year ago did not belief in diagnosing Menieres. Is it worth asking GP for a second opinion?
GP should refer for appropriate input - managing anxiety can help with the insomnia around tinnitus. The living with tinnitus & hyperacusis book recommended by audiology is not bad as well as irritating at the same time. Working from home during lockdown has led to a marked improvement in my balance issues - I feel like I am on a boat when tired.
Phone consults I have had since lockdown with GP have been with locums. So could be worth following up. It has been brilliant to be able to cook again - so I appreciate what a pain balance issues are.
Wow, reading your post actually made me tearful (and I rarely cry!) - You describe exactly what I've been experiencing for the last eight months -literally every last detail is the same!
It's such a disconcerting feeling not knowing when the dizziness will occur and feeling on the edge of it is really frightening at times.
Have you got a history of other types of migraine?
Thank you for your post, it really helps to hear someone else has the same experience (although I'm sorry you're suffering too 🥰)
Aww I’m sorry it made you cry and that you too are going through this too.
As you say, the unknown of when the dizziness may hit is really disconcerting.
But no, I don’t have any history of migraines or any kind etc.
I hope you get some answers soon. Have you got a provisional diagnosis or any testing yet? Trouble is, everything has been slowed down with Covid - in fact my local hospital isn’t seeing patients in person yet and waiting lists are really long....!! 😩
Sorry you’re going through the same! Pleased you have a diagnosis now. Are you under neurology now?
Do you have other symptoms too?
Actually had my first major dizzy episode on Saturday night - woke up unable to stand, sit up or walk due to the dizziness. All I could do was lie flat. Lasted 6hrs.
Yes, I have many symptoms, perhaps 2 went away since I took my first B12 injection about 3 days ago but I had improvements in the past. It just that, in the last year, I had more off days then good days. Doctors can't find what'ts wrong, had head MRI and several blood tests. But recently, a neurologist said I have been suffering from migraine, which likely caused stress and anxiety, not the other way round as I was told many times prior to seen him. So again, I went searching for answers and arrived at the B12 deficiency once more. The symptoms are nearly identical to what is described by many on this site. Please note that I don't have a diagnosis, I just want to feel good again so trying to learn about potential immediate solutions that I can get to by myself, and quickly!
Symptoms are: (no particular order, there are so many)
Dizziness, head pressure, eye movement dizziness, pain behind eyes and forehead (like a tight band is wrapped around head), ear fullness, tinnitus, tight neck (sometimes sore), personality changes, anxiety, pain when touching parts of the face (around eyebrows), tingling face, head throbbing with no pain (I feel my heart beating inside my head, pulsating to the point it feels like I am moving in sync with my heart, balance issues, clumsiness, mind fog, memory issues, trouble speaking (like it's hard to move my tongue), scary mind blank episodes, chewing fatigue (if this term exists), swollen tongue, darkened lips, sensitivity to (some) carbs, muscle pain, food sensitivities (gluten, dairy, processed foods), fatigue, hair loss, abdominal pain (top left side, sharp, this always concerned me), cold hands and feet, numb left hand... these come and go but the head issue is constant.
I always had a normal level of B12 (even active B12 as shown in bloods back on 2018) but since 2016, MCV was on the high side or just above the high threshold. My iron level was significantly above the normal threshold with no suplementation back in 2019 (not sure whether this is related to B12, just dont understand the issue enough). Interestinly, my MCV came back more within normal range for the first time since 2016. It is now 100.3 (I believe it is within NHS range?)
A while back, I also did a hair (tissue mineral) analysis, it came back with a very low sodium/pottassium rate, my potassium levels are normal in bloods but hair analysis shows it is way too high. The report said it could be linked to a low/poor adrenal performance. To be fair, some of my symptoms seem related and recently (aug 2020), creatinine came back above the normal range. Lab said I should retake test when I got my results printed, although I was told my blood tests were 'all normal' by a nurse and a doctor in my practice.
I don't know what is wrong and to be fair, nor did about 6 doctors I have seen since 2016. But if I can take B12 and feel good again, I am taking that chance! I know it could delay diagnosis but when I call my GP, I am number 22 in the queue! Things were tough before but with coronavirus, NHS doctors just dont have the time to listen. GP didnt listen before, she won't listen now. It is tough as I literally have not been able to work since January 2020 as the computer screen makes me dizzy. Even my phone makes me dizzy. I was told it was stress related and was given medication. They didnt work, including migraine tablets etc... The only thing that makes it better temporarily is clonazepam, which I do not want to take long term, it is not a solution, it is a 'problem mask' if that makes sense.
Since March 2020, I took on meditation, daily exercising, cleaned my diet, stopped drinking, and yet, more and more bad days have come my way. I am trying everything I can in my control. I even stopped eating foods with additives to rule out allergies or intolerances. Didn't work. Fasting helped but only if I mixed with high protein meals.
On Saturday 19th September 2020, I had my first B12 injection. The day before was one of the worst days I ever had. I have not had a really bad day since Saturday (early days thogh). Before the b12 infection, I had about 4 bad days a week (bed bound or just dragging myself out of bed to exercise or walk). Exercising, fasting, high protein/low carb meals, stress avoidance, all seem to help but even though I have been disciplined, things got worse, not better.
Sorry for the long message, it is really the first time I post.. . I will start on daily b12 injections today, reduce carb intake, continue exercise and meditation and other hacks (bath and neck massages seem to help). I am also starting a diary so that I can track progress. I have also collated all my blood results since 2016, will then take another test every month or so (Medichecks has been helpful, they were the first to highlight high MVC results to me in 2018).
I feel hopeful and thankful for the work Martyn Hooper has done, it has been really interesting to learn about the issue but also the fact that he created this amazing network of all you lovely people, helping and supporting others who, like myself, have been let down by health professionals who seem to have forgotten what medicine is all about (speaking from my own experience, I can understand , and sincerally hope, that it is may not be everyone else's experience).
Hi there,I can't believe what I'm reading, it's like I've written it! I get most of these symptoms, the only problem is I have a perforated ear drum which I was born with, I also have sinus problems, my symptoms can last months, ( so far been the best part of a year, this time!). I have just recently been diagnosed with Vestibular migraines, I never even knew they existed, I have tried the Eply manoeuvre , but to no avail, just made me sick! They have now said, basically I've just to live with it. So on top of everything else I now have this to deal with and it makes me feel quite rubbish😔
My doc hasn’t even suggested anything, all she said was I am taking amitriptyline and paracetamol anyway, they just make me feel like I am making things up, they’ve treated me for years with cluster headaches, when I told her I had them she told me it wasn’t and I must have mis heard. Just makes you fearful of going to the. Doctor, I tend to phone my oncologist nurse from 8 years ago, she gives me more info. I hope you get sorted soon ,x
I'm phoning tomorrow, trouble is I'm putting on weight which is causing problems in itself 😔Stay safe x
The magazine from the meniers society this month had a long article on vestibular migraine and the difference to meniers disease. Perhaps worth contacting to see if you can get a copy.
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Does anyone else have like a MID tone/ frequency T sound ( buzzing, or solid sound)
