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

I also did sinus massage and steaming x

Ménière’s disease was also my first thought.

Don't cut out salt, lack of salt and potassium causes dizziness.
My brother had similar problems years ago though not as bad as you are. It was his sinues, they were too narrow and were constantly congested and the fluid was then being pushed out his ears (not 100% sure of ins and outs). He had an op to sort them out.
His ENT consultant asked him to keep a food diary and afterwards told him to stop eating nuts as they cause congestion.

My daughter has episodes like this and it’s triggered when she drinks alcohol it affects her ears I don’t know why but the only way she can get rid of it is by doing Treating BPPV: The Epley Manuever
Basically vertigo . It’s worth a try if it works
www.boystownhospital.org/knowledge-center/treating-bppv-the-epley-manuever Xxx

Dizziness can go on for months. Try doing the epley manoeuvre and Brandt Daroff yourself, helped me with mine. My side affected is the right side, I get nistigmous in my eyes sometimes. It's awful op, I feel for you

Definitely get your ear goop cultured.
However have you tried cranial osteopathy? They might be able to loosen up around your ears to let them drain properly.

You mentioned you are bf. Are you in uncomfortable positions while bf? Shoulders bunched up could be stopping the ears and neck from letting the sinuses drain.

Haven't RTFT but I'm a coeliac, and I really wouldn't take any drs advice to cut out gluten before an endoscopy. You'll have to eat it again for 6 weeks beforehand, and the arse-ache of that can be that if you feel better after cutting it out initially you'll a) be in agony going back to it, or B) you won't go back to it because it's eased the symptoms/your GP won't refer you for the endescopy as you feel better, you'll just get diagnosed as gluten intolerant and miss an important diagnosis. I've been through this myself and honestly, it was a nightmare.

@Flibbitygibbit

Dizziness can go on for months. Try doing the epley manoeuvre and Brandt Daroff yourself, helped me with mine. My side affected is the right side, I get nistigmous in my eyes sometimes. It's awful op, I feel for you

Cawthorne-Cooksey exercises too.

Do cut out salt, ie do not add it, any ENT bod with an interest in balance disorders will tell you that.

Have you been prescribed betahistine (often called betaserc) for the dizziness?

I also have IH and high pressure doesn't necessarily show up on scans. Only way they know for sure is a lumbar puncture.

I also had labyrinthitis for about 4 months in 2019 after a bout of pneumonia and I had just put it down to post viral horror and IH on top of each other so didn't go to the dr until I was literally crawling up the stairs, took a really high dose antihistamine and it helped enough that I could ride it out (which was about another 8 weeks).

@daisyjgrey What’s IH? Have all your symptoms subsided now?

Did they test b12 levels? I feel like I say this all the time but the symptoms are so varied and not tested as standard

@Pritiisprettyawful

Intracranial hypertension. Yes the labyrinthitis has gone, it came back for a couple of weeks last year but a lot more mildly, I took the antihistamines I had from last time and was pretty much fine.

Could it be severe ear infection, or reoccurent ear infections? I have also heard labyrinthitis can cause similar issues, and is very debilitating. Was a CSF leak ruled out?

OP sorry to hear you are suffering. This sounds awful. I hope you get answers, and relief soon.

I have b12 deficiency, needing injections. It does cause severe brain frogged, bouts of dizziness, lack of co-ordination etc. But honestly I think your dizziness sounds more severe, and the ear/nasal symptoms are not typical for b12 deficiency. It may be very worth getting as many vitamin levels as poss tested though to rule that out. The ear thing just sounds like it is really originating there to me though.

Menieres was my first thought too, and I'd keep on that if things don't improve because menieres doesn't always show hearing loss early on.

MamaBearThius

Also, how do they swab the inner ear?

They didn’t, (not sure they can?) she swabbed the ear as normal then when they got the results back said because it had been so resistant to treatment it was clearly deep seated and likely to be in the inner ear too. I’ve been trying to remember what the treatment was called but can’t, only that they were blue /green capsules with unpleasant side effects. Took three courses to work. Been ok for about 5 months now so 🤞

I've got an appointment at 4pm face to face (face to ear?) I've requested swabs but she seemed confused. I told her my new internet friend told me to ask...I am not good on the phone we'll see. She mentioned clarythimycin to try as it's okay with breastfeeding...I'll push for the swabs though so we find out what's growing in there. Thank you again all for replies, I'll update

I'll ask her to look at my last lot of bloods for b12 etc

Had my ear swabbed, right one this time looked red so prescribed antibiotics. Also prescribed betahistine but I'm worried it's not safe with breastfeeding. Already feeling guilty with the amount of antibiotics the poor baby has had to share with me. Fingers crossed the swab finds something and all my woes can be over

Op there is a pharmacist that can advise on what is compatible with breastfeeding.

Here you go
www.breastfeedingnetwork.org.uk/detailed-information/drugs-in-breastmilk/

Could be hormone related, also some underlying allergy triggering after pregnancy. Like other I would suggest you check on B12, rest of the Bs, potassium and all the minerals and vitamin D.
One idea - Cut all milk, butter and cream, a bit of cheese should be fine. Switch to oat milk and keep your calcium intake high especially if you are still breastfeeding. It is suspicious this is happening a few months after you gave birth. I feel for you, you must be so tired. I went through massive changes after my last pregnancy, hormonal changes, affecting how I digest food too, I found out milk made me sleepy and drowsy and within a week from cutting it I was back to normal. Worth trying in my view.
Other allergies - switch to hypoallergenic pillows and duvets if you haven't yet

Good luck and let us know when you figure it out....

I had something like this that went on for 9 months. It was hell and turned out to be a horrible sinus infection, which amoxicillin didn't treat. After a course of a different class of antibiotic it cleared up. It's worth giving a neti pot a try, eye drops and for about a week regular ibuprofen to take down inflammation around the infection. The pressure in my head got so bad my ear drum burst one night with loads of horrid bloody stuff coming out. The rest of my symptoms didn't go away after that but it was a pressure relief for a day or two. Might be worth going back to see if your GP thinks a different type of antibiotic might work. Mine started year before last late autumn when we stsrted putting the heating on and having the log burner on a bit, I think lots of dry air can be problematic for what are supposed to be moist (sorry!) membranes in your nose and sinuses. I hope you get well soon 💐

Something very similar happened to me I had a sinus infection that triggered labyrinthitis that triggered visual vertigo that triggered migraine associated vertigo, I now have chronic migraine, its all gone on for about 8 years and was very confusing. I still have ongoing sinus issues but the main issue is the migraine which took a long time to figure out as I had never had a migraine previously. I now have more classic migraine and hemiplegic migraine alongside the vertigo.

If you do get an ear swab done, ask them to check for fungus as well as bacteria.