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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To ask you to diagnose me?

159 replies

MamaBearThius · 14/01/2021 19:52

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

OP posts:
Lucy830 · 14/01/2021 20:05

This is probably going to sound very silly given in sounds like you’re having a really tough time, but I had very similar symptoms and they found two different things going on with me.

Firstly I had pressure behind by eyes and in one ear, was getting awful headaches, I had an MRI and all that showed up was a slightly leaking left sinus (hence just one ear). I was referred to ent and they confirmed it was my sinus. Nothing was done just Basel spray and told to take painkillers.

Secondly, I had the exact same thing with my eyes feeling like a camera lens focusing, I felt dizzy, my eyesight was blurry at times and it made me feel sick at times, I was told to go to an optician. The optician said I had chronic dry eyes and that my vision was fine. He explained that when your eyes are dry, you try and focus (the camera lens feeling), but it is counter productive because your eyes just get even dryer. I was given eye drops and wipes and completely thought I was being fobbed off. After a couple of weeks however, all my eye symptoms and dizziness disappeared. It felt so severe I just couldn’t believe it was down to dry eyes.

I still get bad headaches every now and again but apparently that’s the leaking sinus. My ear sometimes feels like it has pressure in too but I am able to ignore it more now I know it isn’t anything sinister.

Sorry you’re having a rubbish time, I can’t say whether it’s the same thing as mine but your symptoms sounded very similar so I thought I’d leave a message.

sbhydrogen · 14/01/2021 20:07

Sounds a bit like vertigo

Original poster
MamaBearThius · 14/01/2021 20:08

Thank you so much for replying. Sorry you've had similar. Leaking sinus sounds right, I'll ask my Dr if they looked at my sinus on the MRI. Everyone was just concerned about the non existent stroke.
Interesting about the eyes! I've been to the optician and went to opthomology too and no one mentioned dry eyes...how did they test that?

OP posts:
Ohandanotherthing · 14/01/2021 20:12

labyrinthitis? A friend had this and it knocked her for six at the time.

Original poster
MamaBearThius · 14/01/2021 20:16

4 months though? And it weirdly changes in this weird little cycle. I start to finally feel better, I'm barely dizzy and then BAM I wake up worse than ever always with a bad tummy. There seems to be a secret trigger than I don't know about. Hence clutching at the gluten straw. Or another allergen

OP posts:
BCBG · 14/01/2021 20:23

@MamaBearThius sorry to hear you are feeling rubbish. Firstly PLEASE do not go gluten free a after your blood test as if it shows positive you will still be referred for an endoscopy - gold standard diagnosis and still the rule in adults. If you go gf now you risk affecting the results. Secondly, could this be migraine? Stomach migraines can badly affect head and gut at the same time and your symptoms sound very similar to a friend of mine who has very severe migraine.

Original poster
MamaBearThius · 14/01/2021 20:27

See I wondered this too but my GP said go gluten free for 2 weeks following the blood test so we could see if it was an intolerance rather than full coeliac.
One of the specialists mentioned migraines... migraine associated vertigo and said to try one of the triptans. My GP refused as I'm breastfeeding, she said she needed neurology to prescribe it. They have an 18 month wait currently

OP posts:
LizFlowers · 14/01/2021 20:28

Cut out salt if you haven't already.

Original poster
MamaBearThius · 14/01/2021 20:30

Also, when the dizzy cycle starts again, I'm so so tearful. Like sobbing at adverts tearful. I don't think it's just low mood...it feels connected. Thank you for the replies, it's lovely to be acknowledged. I'm sure my husbandisband is sick to death of me "but why"ing/ but what if"ing all the time.
I definitely feel it's gut and ear related.

OP posts:
Original poster
MamaBearThius · 14/01/2021 20:30

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

OP posts:
Lucy830 · 14/01/2021 20:32

I actually have no idea how they diagnose dry eyes. My optician did say he suffered with it and used the same drops so whether he was just passing on his own advice I’m not sure, but it worked which was very nice.

Original poster
MamaBearThius · 14/01/2021 20:33

What are the drops? Can I buy them? Will literally try anything

OP posts:
YouCannotPossiblyBeHungry · 14/01/2021 20:34

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

blissfulllife · 14/01/2021 20:35

Vertiginous migraine. Mine started after a bout of bppv

blissfulllife · 14/01/2021 20:36

Sorry meant vestibular migraine...foggy headed today x

Original poster
MamaBearThius · 14/01/2021 20:36

Thank you both. Any miracle fixes? How did you get diagnosed?

OP posts:
Bluearsedfly36 · 14/01/2021 20:42

I'm having similar stuff going on since October but with neck pain, had a clear head ct, asked for a neck X-ray and found out I have arthritis in the neck. Had a video consult with neurology in December and he thinks it's cervical vertigo and cervicogenic headaches but I'm getting an mri next week. My gps keep throwing pills at me and guessing and been told I need to control my anxiety and lie down and let the world go by. I have 4 kids fgs. I can't even drive because I get dizzy. Hope you get some answers soon. I'm so fed up and trying to homeschool is a task when you feel well, it's even worse when you don't.

MrDinklesOhSnap · 14/01/2021 20:42

Has anyone mentioned Ménière’s disease? It was the first thing that came to mind. You really really need to see your GP. X

MissSmiley · 14/01/2021 20:44

Just be aware if you've just had an antibody test for coeliac it might come back false negative, the only real way to be sure is with a genetic test and a duodenal biopsy. Untreated coeliac can cause some horrible symptoms, mine was diagnosed after my last child when I developed sarcoidosis, another horrible autoimmune condition. I really hope you get some answers soon x

Bluearsedfly36 · 14/01/2021 20:44

Wheat bags are my best friend atm, put them wherever the pain is.

Original poster
MamaBearThius · 14/01/2021 20:46

My neck hurts! On the left, which is my worst ear too. I tried chiropractor treatment but it got too expensive. Maybe I should ask for an x-ray. So sorry you're going through similar. That sounds stressful, yes just have a lay down amongst all of that Hmm
I'm not safe to drive either which sucks.
They've ruled out Meneires as my audiology is fine. I've seen my GP twice, nurse practitioner 5/6 times and I phone for a phone back most weeks to ask my gp for help but she seems to want my ideas on what it could be and then she refers/tests/tries from there

OP posts:
Pritiisprettyawful · 14/01/2021 20:47

@MamaBearThius Don’t want to worry you and it likely isn’t, but I and many others have had similar symptoms and is long covid, the dizziness, stomach and eye troubles etc etc really resonate with me. Do you know if you may have had it? If you check out the long covid support thread here, it may help,
I was really quite ill back in May (likely had covid March and not severe) I had a whole range of symptoms and no idea what was happening-I ended up having a head ct scan, blood tests, x rays, allsorts, I felt like I was going crazy

LifeBeginsNow · 14/01/2021 20:47

I can't diagnose anything sorry but just wanted to say, if you're trying the drops (comfort drops from boots) also invest in a microwaveable eye mask. It comes with instructions on how to rub your eyes safely after so that you stimulate the tear ducts.

DizzyWhizz · 14/01/2021 20:49

Another vote for Vestibular Migraines / Migraine Associated Vertigo... It took me a long time to get diagnosed but definitely causes disequilibrium, head & ear pressure, brain fog etc. Can be triggered by hormones, weather, diet, sleep...
You ideally need to see a neuro-tologist - I had to travel to see one but it was well worth it. Sadly can’t recommend as that unit has now closed down. He prescribed Nortriptyline which helps me. Good luck x

blissfulllife · 14/01/2021 20:50

I was diagnosed by neurologist after 6 months of constant dizziness and a couple of hospital stats, mri, balance tests. I'm 2 years in now and I'm 95% better day to day but still get a couple of bad days a month. Pretty sure it's linked to the fact I'm going through the menopause. I chose not to go down the medication route. I follow a migraine diet, stay hydrated, avoid bright lights. After a while you will begin to find your triggers. I'm currently very dizzy unbalanced and lots of ear pressure because I've eaten rubbish at Christmas.

You do get used to it x