To ask you to diagnose me?

[MamaBearThius]

So I've been dizzy/unbalanced/fucking miserable since October. It started very suddenly, I felt like I'd just got out of a washing machine and had to lay down quickly (after violent d&v)
Drs said it was labrythitis/bppv and it would go away.
It didn't. I went back to drs, they found some left sided weakness so sent me to hospital where I had MRI and CT scans and was seen by a stroke consultant. No stroke.
It hasn't gone away since October. It's eased and it's changed but it always gets worse again...in a weird cycle. Always accompanied by d&v. My ears hurt. I feel like there's too much pressure/stuff inside my head...behind my ears and behind my eyes. I can't focus my eyes. When I try, they do that weird auto focus thing a phone camera does. Blur/clear/blur/clear.
I have to blow my nose more than I've ever had to. It's always got blood in the snot, streaks of it. I get headaches, I've never had headaches. Everything hurts my eyes and my ears. I've had...5 courses of amoxicillin since this started. On the rare occasion I get seen by anyone they find my ear drum bulging and amber liquid behind it. I've had the Epley...gives relief for a day or so. I'm on antihistamines and a steroid nasal spray. Takes the edge off but I'm still unbalanced. I feel like putting a needle into my ears to drain them. I was referred to ENT...they did a hearing test and a balance test...said I was fine so referred me to neurology. I believe it's undraining sinuses maybe...but my nose never feels blocked. I'm so very low. I'm breastfeeding my 7 month old and I'm failing my poor 4 year old as I'm so tired and so dizzy.
Thanks for reading, there's stuff I've forgotten to add - like brain fog! I've also had a test for coeliac and I've cut gluten out (started yesterday after the blood test) no results yet of course.
They tested my thyroid and said it was fine. Iron fine. I take vitamins anyway.
What's wrong with me? I feel like everytime I speak to my Dr I have to present her with different ideas to try - I'm running out. I've requested ENT to see me again but covid makes everything difficult.
I'm so so low

What about TMD of the jaw? I get dizzy when mine flares up, and intense headaches on the side of my head above the ears. Google it to see if you have any of the symptoms.

@YouCannotPossiblyBeHungry

Vestibular Migraines? Can cause a lot of those symptoms and can last for a long time.

This is what I was going to suggest as well. I think it can take a long time to diagnose them, as generally no one seems to think of them until everything else has been ruled out. That may only be the experience of the person I know / my limited reading on it though.

@MamaBearThius mine is the left too and the base of the skull. I have been in an ambulance 4 times cos they thought it was a stroke. Had blood tests which are "normal" have seen the gp more than 10 times. They'll be amused when I phone in the morning because I'm at breaking point and can't cope anymore. Don't know how I'm going to manage for the mri because the hospital is 70 miles away, can't hold my head up for long otherwise dizziness sets in, had to buy a neck brace. They've given me meds for neuralgia but don't know if it's actually neuralgia 🤷‍♀️

Thank you all. Long covid really...I'll check it out. We believe we had it in Feb but haven't had an antibody test.
It feels physical with my ears if that helps...they often feel wet and I quite often feel a bizarre itchy trickle deep inside my ears if I'm laid on my side

I also get cold sensations in my body, especially round my period. Questioned peri menopause and they said I was far too young for that. I'm 38, but I sometimes feel rather fobbed off.

Not a perfect match, but I had idiopathic intracranial hypertension and some of the symptoms you have sound a lot like what I experienced. A number of the other diagnoses which are being discussed were also mooted for me.

If hormone related that could tie in as this all started when baby gave up her night time breastfeeding and slept through...which apparently triggers something hormonal? (She's sinced changed her mind on this whole sleeping through the night business...it was a wonderful fortnight)

I had some of your symptoms on and off for a year and I had an inner ear infection. Took 3, 10 day courses of a very unpleasant antibiotic to clear up, kept returning. Amoxicillin wouldn’t work, it would need to be more specific.
Has anyone swabbed your ears?

Surely the cranial pressure would have shown up on the scans?

Dairy can affect mucus production. Lota my sinus issues cleared up after I cut out dairy. I still get migraines though. Chatting to gp she was saying loads of people seem to be suffering with migraines or headaches when they have had covid

No one has swabbed my ears no! Shall I ask the gp? Thank you, thank all of you for your replies. Genuinely touched

@DenisetheMenace did your ears feel wet and pressure in them?

Yes, a sticky discharge, sometimes stained with blood, crusty in the mornings. Sorry, you asked!

There were 3 different bugs having a party in there, felt really debilitated and took a lot of getting rid of.

F

Don't be sorry, I have no gore filter. I'll ask for them to swab my ears. That sounds nasty! I also have a temp most of the time in the left ear, other ear is cool. Would make sense. Also, the amoxicillin might have been taking the edge off which could explain the cycle situation. Thank you, I'm going to phone tomorrow

Yes, had the local temperature too.

Hope they sort you out 😊

A friend is going through this, dx as vestibular migraine though she had to get a private consultation with a neurologist to get the diagnosis promptly and an effective treatment plan.

Sorry you're going through it

Thank you all. @DenisetheMenace if this works out...wow do I owe you!

Also, how do they swab the inner ear?

I've got something similar, been having dizzy spells, nausea, brain fog, wobbly and unfocused eyes (nystagmus), immense pressure in my head feels like my sinuses will pop but no mucus, unable to drive or go out on my own due to fear of falling and general disorientation. I've had this since early December. 3 different GPs on phone consultations all give a different view BPPV, labyrinthitis and back to BPPV, and contradict each other. I'm finding it very difficult to work. For me the intense pressure in my head coincides with the dizziness. But no ear pain. Chronically miserable though. I am prone to migraine but been told it's unrelated
for everyone affected

In the interim, are you doing the Epley manoeuvre at home by yourself as well? You said it had been done to you with short term effects.

I had a mild bout of vertigo, and was told to do it at home. They advised having a bowl nearby incase it made me vomit, so maybe better if you have your DH to helping to begin with?

I was given the links to two videos by the Nurse at the GP surgery.

And

@wageslave hugs for you. It's absolutely soul destroying isn't it

I also get vestibular migraines, but tend not to be able to control the vomiting when they happen. Lots of people have them present in different ways - I usually have a gap between the onset of vertigo etc and the head pain starting.

@wageslave Again, not saying for sure, but v similar symptoms and hundreds more the same with long covid