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

Just having another think about this and after both babies my ears did weird things. Was leaking lots of fluid / pain / inflammation and some of the same symptoms as you (although i do have b12 issues treated with injections - also discovered during 2nd pregnancy).
I had ear drops (sofradex) both times which were safe to use breastfeeding and it was the only thing that worked as standard antibiotics didn't touch it - I had private health care so my GP referred me to ENT specialist when antibiotics didn't work

Thank you all for the replies. Eugh clarythimycin is unpleasant!

So, all! I had a funny reaction to one of the tablets, either clarythimycin or the betahistine which landed me in urgent care (I'm fine =)) the lovely Dr who saw me looked at my history and suggested I enquire about Eustachian Tube Dysfunction...it fits perfectly!! Like, exactly. So I've ordered a Eustachi machine to try (I can't afford it but I will literally try ANYTHING at this point). My gluten test came back negative/positive...I'm allowed gluten! I've got a video appointment on the 18th Feb with ENT and hopefully they'll check my Eustachian tubes and fix them!

Ménière's disease? It’s a type of vertigo. A character on Call the Midwife had it! A lot of symptoms are as you describe. Take a look and see what you think.
www.menieres.org.uk/information-and-support/symptoms-and-conditions/menieres-disease

Thank you for replying. Audiology said it couldn't be Meneires as I have zero deafness. My ears are sometimes muffled, but no actual hearing loss according to their testing

This is Meniere's. People do not always have deafness with it. It is a balance disorder but there are many others:
www.nhs.uk/conditions/menieres-disease/

Have you given up adding salt to your diet?

I had sinusitis after my second, must have picked it up in hospital. It caused similar symptoms, full head feeling, pain and dizziness. I wonder why they haven't varied your antibiotics instead of same course over and again. Hope you get well soon x

I would suggest menieres, v similar to my grandad who has it

Sinusitis causing eustachian tube dysfunction fits, in my head. Will update when I've spoken to ENT. Id never even heard of ETD. The clarythimycin seems to be helping, fingers crossed. But I think they're causing a swimmy dizzy feeling... so hopefully when I stop them it'll all be done with

Yes do keep us updated OP x

Of course I will, I get so frustrated when I get invested in a thread and then the OP never comes back 😃

I have similar and have been diagnosed with pppd. Basically incorrect signals being fired by the brain. Joey Remeni is an Australian lady who specialises in it, and has released a book called rock steady which really helped me. You can retrain your brain using neuroplasticity to focus on pleasant sensations and block out the unpleasant like the dizziness, nausea, ear pressure, etc.

Have a look and see if you think that might be what is happening.

Great that you're getting somewhere.

Have you tried (in the meantime) sudafed? And sleeping on one or no pillows?

I suffer from vestibular migraine. Diagnosed initials labyrinthitis. MRI etc. Lovely neurologist said I was suffering from every kind of migraine going (I even have arm migraines!) and he said the very best thing you can do is sleep on as few pillows as possible. I know it looks like you have something different, but the neck pain you mentioned is interesting because the neurologist said all of my issues stem from the cervical spine. There's nothing wrong with my spine apart from the fact I don't look after it apparently. (as an aside, I was also given a course of topirimate which sorted me out completely.)

Try the sudafed to cut out the congestion and the pillow because, well, what have you got to lose?

Hoping it all gets sorted for you swiftly.

Thanks both
Interesting, the ENT Dr said he suspected Migraine associated vertigo. I believe I have a few different things which is why my dizziness changes. Good news, my Eustachi arrived today...I've had a go and feel instantly less spacey dizzy! Woo!
I've also boil washed my pillows, duvet and hoovered my mattress when I realised I felt worse in the morning (the fact I've been able to be so active today is such a bonus) I think th clarythimycin are working. 2 more left and hopefully when I stop taking them I'll stop getting this new dizzy. Thank you all for your messages and replies 😊 I will keep updating. And just to answer the sudafed...I can't take it while breastfeeding but I am using a steroid nasal spray x

I'll try the pillow top too

I had similar and was diagnosed with vestibular migraine. Sometimes I get the balance problems and other stuff without any headache - they tell me it is still the same thing and it can happen without headache. One bizarre thing that happens to me during an episode is that I feel ravenously hungry. I also get pain down one side of my face and that nostril runs.

I have tried the various migraine treatments, but no help. I treat it by taking a sleeping tablet and sleeping it off - I wake up and all is well.

It is worse when I am stressed so it really is worth addressing that if this applies to you.

@Mischance that's so weird, I get the ravenous feeling too! Never connected it.

If it is vestibular migraine, the course of topirimate fixed me. It was tough, I won't lie. The side effects were tough, but eventually went. And once I had been migraine free for x amount of time, then I slowly came off it. Now I only get an occasional migraine and if they ramp up, I can go back on the topirimate to get them back under control again.

@MamaBearThius your ear machine, it isn’t an ear popper gadget by any chance is it? If so, my husband has this and it has worked wonders with regular use. He was constantly getting ear infections which caused glue ear and ETD. That gadget has been a miracle worker for him, I hope it does for you too.

Yes @Hortuslover it arrived today and I'm in love. Eustachi it's called you put it in one nostril and close the other and swallow! Beautiful little device! I've played with my children tonight, actually physically played instead of laid watching

Aha! So. Last appointment it was found that my right ear was red, usually the left. So when I asked about swabbing that's the one she swabbed. That has come back as heavy yeast growth...ick. They're giving me a swab to do my left one in the morning as that's when it's ickiest. Hopefully an answer, or at least another step towards an answer

So Dr has decided another course of co amoxiclav is the best course of action...nothing anti fungal

How are you feeling OP?

Pretty rubbish. Better than I was but still dizzy. Had a chiropractor appointment on Monday and she tried acupuncture on my sinuses this time aswell as an Epley. Think I feel better from it. ENT this month hopefully they'll see me after the video call. Thanks for asking

Saga continues. Waiting for ENT video call on the 22nd. Dr has basically told me to stop bothering them =( pissed her off asking for swabs I think. They came back normal. Pretty low

So you have a heavy yeast infection that they aren't treating? What was their reasoning behind that??

I'd be ordering tablets for thrush, I've taken them while breast feeding.