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

They grew yeast from ear swab? Might be worth trying clotrimazole ear drops - you can bu them over the counter. With all the antibiotics you have been taken Id also start taking an acidophilus bifidus (i used to get the chewy ones from holland and barrett as had awful thrush breastfeeding).

Iv had a few sinus issues. Iv found saline nasal wash twice a day helps, humidifier in the bedroom, course a naproxen with metoclopramide (course this may not be possible BF). Ultimately the only thing that really helped was taking a triptan during an attack - I slept for 2 days but I only had to take the one (touch wood). Might be worth building a supply of expressed milk and trying triptans.

I'm wondering if it is Covid? Sounds like some of my symptoms - terrible dizziness and headaches - they still remain due to Long Covid. I realised something was really wrong when I got up and fell over due to dizziness. I've also had the increased level of snot and blood in it and blocked ears and they problems focusing my eyes.

Finally got fungal ear drops but she was very dismissive saying heavy yeast in the ears is fine. I take metoclopramide 3x a day to stop me being sick. Also taking 2x betahistine 3x a day to try and stop the dizziness. Would long covid show on a test? I've been sent for 7 tests by the Dr each time I have a temp. All negative. Not sure how to get an antibody test. Booked myself into the opticians again today as my eyes are so much worse...more floaters than vision. Having to squint to focus more times than not. Seems to be my right eye that's blurry.
Feel like I have another L ear infection but I don't want to speak to the Dr again as it seems to be really bother her that I ask for help. I'm sure she thinks it's all in my head. My husband can hear my ears though if I press them they're so squelchy. Sigh. I'm so fed up

@MamaBearThius I'm still no better either. My mri came back clear apart from my arthritis in the neck and a bulging disc in c7 vertebrae. Waiting for physio now. Had chest pains a few weeks ago, felt like someone was pressing down on my chest, could breath ok but felt heavy. Phoned the dr who told me to take gaviscon and see how it goes 🤷‍♀️ I started my period the next day and the pains vanished a couple of days later so I think something hormonal is going on but the drs don't want to know. Now I have started getting dizzy, funny vision and tingling on my face, feet, hands and legs. Phoned drs yesterday who gave me betahistine for vertigo. The drs just won't see anyone. I started nortriptyline in October and never had my bloods done since. You think you're getting somewhere and another symptom comes along and knocks you for six. I hope you feel better soon, i just don't feel like there's any light at the end of the tunnel atm.

Feel the same RE no light. Sorry you're going through similar it completely sucks. What's your next step?

I'm waiting to see physio. The neurologist has discharged me and says most of my symptoms are stress related. Just try and get the drs to listen. Been like this since October and it's starting to get me down.

Brain worms!

It was on House so I'm absolutely sure.

My DP phoned the surgery this afternoon for me and managed to get me a face to face appointment for bloods etc on Tuesday. I'm going to make a list, better make the most of it.

I've got neuro phoning me any minute now. Then ENT phoning Monday. Fingers crossed they're nicer than my GP.
Deffo brain worms, if Mr Laurie says so

Hope you get some joy, my neurologist was lovely. We did our consultation via video call, a lot easier to explain the pain. Brain worms certainly sound interesting

Did you have b12 and other vitamin levels checked? When mine was low I had sinus problems, tinnitus and dizziness amongst other symptoms.

I’m going to PM you

you've had a few good suggestions, how about another..

it could be intercranial hypertension?

there's a basic test you can do yourself, for this...

raise your arms, so they're outstretched at shoulder height. Then, keeping your arms straight, put your arms against your head, and keep them there for a few minutes. If you start feeling breathless, or dizzy, then it's probably intercranial hypertension.

if it is, read the wiki page... and try to lose some weight. Apparently, a gain of even 10% can trigger IH in females.

Ffs. Neuro wasn't much use. Said it's fibromyalgia...not at all. Doesn't fit.
He also wants me off betahistine and ibruprofen and to try amitriptyline. ENT call tomorrow, hoping they Investigate my ears/sinuses
Had loads of blood checks so far so guessing my bloods are okay
I'll try that test, when I've not got a baby in arms (maybe a few years time...) Thank you. One of the drs did query that a while back

Sorry to hear about all the troubles you're having OP. My DP has been suffering with dizziness (and a range of other symptoms) for a very long time so I can understand how debilitating it is. He has a neuro condition but figuring out what it was has been a long process (I'm still not really sure if his diagnosis is right as he's been given so many over the years and they've gradually been proved wrong)! It's worth saying his symptoms are different from your own, and so it certainly won't be the same condition.

Our experience from the time his condition originally started is at least a decade old now, but are you based anywhere near to London? If so, the national hospital for neurology is really excellent. They have a neuro-otology clinic which is excellent. My DH was referred there by the migraine clinic in London (it's a charity one, so you can pay a fee but only what you can afford) is excellent. I have no idea if they still exist, but they were really excellent and he would never have been referred if it weren't for them as his neurologist at the time was pretty disinterested and certain of his migraine diagnosis.

Just wanted to put those suggestions there in case they're of any use. I'm really sorry you're being pushed around. Waits for neurology are so long . Happy to share further information, or answer any questions, so feel free to message me.

I'm sorry to hear that @MamaBearThius, I'm laid in bed with a heat pad on my neck and ice pack on forehead. Was having a really good day then hit again, no dizziness but tingly legs, hands and face. I'm writing a list for my appointment on Tuesday cos god knows when I'll get another one. I've been on amitriptyline at the start, it can knock you out. I'm on nortriptyline now but being weaned off it rocks it's not helping. I don't know what else to suggest. Maybe phone 111 and explain everything, might get some useful advice 🤷‍♀️.

*because not rocks

Sounds a bit like how my BIL started.

en.m.wikipedia.org/wiki/Cogan_syndrome

So sorry you’ve been feeling so rubbish! Back in November 2019 I had similar experience to you. Also diagnosed with labyrinthitis. The vertigo and dizziness was horrific and I could barely do anything. Got referred to ENT/Neuro and they said sometimes bad cases of labyrinthitis can last a while which was not great considering its spectacularly debilitating. My symptoms didn’t start easing noticeably until November 2020. I’d read about b12 levels like previous posters mentioned here and insisted on mine being checked. I started b12 vaccinations at the end of November and have now been symptom free since December and have managed to stop popping stemitil like smarties! I don’t know if the b12 and the anaemia was a coincidence and whether the other stuff had just run the course but mine hadn’t been checked routinely so might be worth getting your levels done to be on the safe side!

Hope you feel better soon

I’m so sorry you’re suffering @MamaBearThius you’ve gone through so much.

Just one question, there’s no swelling of the bone behind either ear is there? Only asking as my right mastoid bone is larger than the other and I feel a fullness in this ear. I’ve no pain so I’ve not gone to the GP’s yet but it can be a sign of mastoiditis if infected, I think? I’m sure this would already have been checked though.

I suffered from labyrinthitis a few years ago, seemed to stem from a bad sinus infection, so you have my total sympathy. It was awful. Everytime I moved my head I experienced what I can only describe as a pounding feeling behind my eyes/head and a sense of my eyes trying to catch up, such an awful sensation.

Hope you get some answer and treatment that helps you soon

@MamaBearThius

Cut out salt? Completely? Okay. I put salt on everything. Is salt a dizzy maker? I know it can be a trigger for Meneires but audiology said it wasn't that

Please don’t cut out salt, you can die if you don’t have enough salt in yourself body. I’m not exaggerating.

Thank you all for the responses. So ENT phoned. He is organising a CT scan of my sinuses (my gut bet is a fungal infection, as they found fungus in my ear) a face to face appointment with him and then a referral to vestibular rehab for inner ear issues. Feeling listened to finally. I just hope they find the reason and fix me, I'm so fed up of just about managing

I’m glad you had a more positive consultation with ENT, OP. You’ve really been having a miserable time.

It may not be relevant just now but a pp mentioned a migraine clinic - I think she was talking about The National Migraine Centre which is indeed excellent. I had an appointment with them and the doctor I saw was fantastic, easily the most knowledgeable migraine specialist I’ve ever spoken to, and I’ve had migraines all my life. Thoroughly recommend them if anyone is interested (and yes, you have to pay but as stated, they are a charity and it’s according to what you can afford).

@Halsall yes that's the one! Glad they're still as good as they were when my DH saw them. They really were amazing. Would recommend to anyone in a heartbeat!

OP glad you had a good ENT appointment and really hope you get to the bottom of the problem soon.

I’ve had simular symptoms (dizziness, vomiting, weird feeling behind the eye, feeling absolutely awful ) and in the end it was due to a sinus infection. I was given a course of Doxycycline and have found doing steam inhalations with olbas oil really helpful. You could also try using a Neti pot to flush out your sinuses. It takes a bit of time to get used to pouring salty water down your nose but it does help. There are videos on YouTube of people demonstrating how to use them. Really hope you feel better soon. Xx