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

Thank you @SoddingWeddings I'm worried I'll make it worse

Hello.
I had a run of headaches and chronic pain for years. Im so sorry it is awful.
Here is what I would do.
First get the sinus and MRI investigated.
Go to a migraine specialist to rule out migraine. You can get lots of non classical migraine so rule that out.
Try a sinus ENT person if these above lead to nothing.
In my case I was diagnosed with migraine, asthma hence the sinus thing and cervicogenic headache. Just in the middle of chiro and that has been superb. Nearly painfree.
Dont look for just one thing. It could be a few.
Go for chiro while waiting for other appts if you can.

@longcovidsupportthread

Another one saying vestibular migraines, my husband suffers with these and menieres and they overlap a lot. He can be fine for several weeks and then it hits out of nowhere for several days.

When he was first being diagnosed he suffered a lot with d&v during attacks but the medication he is on seems to have helped that. Through trial and error cutting out salt, caffeine, alcohol, certain E numbers, onions and not doing too much night time driving have helped but not resolved it.

It would be helpful to get a referral to a neurologist if you can- we went through various GPs, A&E after a bad collapse that resulted in a head injury, ENT at two hospitals and a cardiologist before we saw the neurologist who was finally able to help.

I hope you get some answers soon.

Just read thread again. If you have discharge and ear pain then that would be the first thing to resolve.

Thank you all. So sorry to hear of others suffering with this. I'm going to ask for ear swabs tomorrow and try not to be fobbed off with yet another antiemetic

@wageslave I've been getting the pressure too and it sometimes felt like something pushing on the roof of my mouth. I was told to stop being so anxious, it's frightening when it happens. All this actually hit me like a freight train and I was driving, managed to get to my go surgery. I thought I was having a stroke.

@Mamabear, yes it is grim. I'm seeing another GP tomorrow, for a physical appointment, snow permitting. I'm not convinced about the migraine because that would mean an almost permanent migraine for 6 weeks, without any of my usual symptoms (bad headache but different to this and aura). I am wondering about long Covid, as 2 other people I know were hospitalised with similar symptoms over Christmas, but I've not had any Covid tests (not felt the need).

If I do go out I have to hold someone's hand or use a stick. The other oddity is that my ears are a bit waxier with lots of flakey skin. But no hearing issues

The bulging ear drum goes with sinus problems. Sinus infections are hard to shift from what I've read. You're supposed to have a longer than normal course of antibiotics and maybe more than one type together, but good luck trying to get that from your average GP. I hope you get to see a good ENT specialist.

I love the instruction to be less anxious! As if

Sinusitis ?

Hi this just really sounds like Long Covid to me. Did you have any illness before or when it all started? They say Covid isn’t ‘cold’ like but mine felt like a terrible head cold at first with what I thought was a sinus infection. This was over 6 weeks ago with awful headaches, aching and awful neck pain plus actual snot!! which everyone tries to tell you doesn’t come with Covid. Ask for an antibody test, if you show as positive then long Covid could well be the answer...you could have been describing exactly how I feel, it’s uncanny 🙁 keep us updated. Hugs xx

Also I’ve had blocked ears and ear pain the who time too.

For me, no illness whatsoever before the onset of these symptoms, not even a slight cold. I'm at the point now of having to take time off work as I'm struggling to function and feel exhausted, and doing simple things takes days and days rather than hours. Though some of that could be down to the grind of these symptoms.

Have you got a carbon monoxide detector?

It’s hard to describe how awful these issues are if someone has never experienced a loss of balance. I had labyrinthitis for over two months a while ago and can honestly say it was the worst thing I’ve ever experienced. The constant nausea and feeling of being on an extreme fairground ride even when lying still was terrifying. I got over it eventually without medication but I still have days when it resurfaces to a much lesser extent. I had a phone conversation with the doc who just said it was labyrinthitis. My hearing has been affected by it but they say it’s not Meniérès so I just don’t know. You have my absolute sympathy OP.

No illness before this for me either. Last time I was poorly was Jan/Feb time which was the worst chest infection of my life (I believe now it was covid)
Yep bought an extra detector which is next to my side of the bed as I'm the only one with symptoms

I am sorry you are going through this and I am glad you are getting some ideas here. I don't know if this is relevant but I was getting a lot of fatigue (and some dizziness) and fatigue especially after eating. My gp thinks it might be a thing called dumping syndrome where your food goes into your small intestine too quickly. However I too may need to get coeliac ruled out.

I thought dizziness was due to labrynthitis triggered by flu jab but I think dizziness also can be part of dumping syndrome too? . I didn't know there was such a thing! It will be tricky for me to get tested for coeliac as I have been gluten free for years but prior to giving up gluten i used to get weird sicky feelings that invariably coincided with mild numbness in my arms and also a funny feeling in my head and my eyes felt odd too - they all happened at the same time and they diagnosed non painful migraines. It all stopped when I gave up gluten.

I wonder if there is more than one thing going on with you? Sorry my tale is a bit jumbled but my doctor too is looking at a few things and some of my odd symptoms that I have now (and used to have) are similar to some of what you have. I think it is so hard to work out these things so you are doing the right thing asking for more tests etc.

Just to add I am wondering too if I have long covid and this could be part of it for you? This is not a medical take but my hunch for me is that covid has perhaps caused inflammation for me and maybe causing new food intolerances. I have cut out dairy and the fatigue is better. When I used to eat gluten by mistake after I gave it up I would get immediate extreme fatigue. I really hope you get some more answers for you. X

Things I would do is:

1. Get your ears swabbed, 5 lots of amoxicillin is absolutely ridiculous, two max should have established these aren't working, and you need to have a culture grown. This is because of Covid-19 restrictions and trying to get you to not come in- well tough, you need that properly swabbed, grown and the correct antibiotics prescribed (then you can work out what's left after that).

1. Meniere's disease is very hard to diagnose and I just read a really interesting paper that also said it overlaps a lot with vestibular migraine, apparently they look for hearing loss and if not say no MD but MD can show up hearing loss much later on, so I wouldn't say that is totally ruled out as a diagnosis as your symptoms are very MD like.

1. I have vestibular migraine and not the hearing pressure/loss, but pretty much everything else- in my case not so much headaches, but sickness, nausea, balance and co-ordination issues, can't speak properly, stroke like symptoms on a bad day. I also recognise the emotional mood changes when I have a migraine, I feel very odd and not like myself and upset during them which has worsened as I've got older. I am not responsive to tryptans myself, but many people find them to be life-savers, I use a preventive medication on a low dose that works for me plus relaxation/meditation app and the combination of drugs and relaxation of the nervous system seems to really work in breaking the cycle (as migraines really do cluster and you can end up with so many back to back).

I hope you get some answers, but I don't think anything is ruled out at this stage, but I wouldn't wait 18 months to see a neurologist, I would pay privately for the initial consultation and then go back into the NHS after that for further tests (once everything opens up more). You can't care for children when you have VM/MD or whatever you have, it makes you very ill and really impairs functioning.

Thanks Nessie. It's debilitating. I don't feel like me at all
My poor poor 4 year old. She's lost so much in this past year, and for 4 months now she's had to contend with a dizzy half arsed mother. I want to wake up cured and run around with her and be able to look down without wanting to vomit.

@Poppingnostopping thank you. Can you phone the drs for me and get them told!!

It really sounds like chronic sinusitis to me. I’d request another MRI / CT to look closer at the sinuses.

I had sinusitis without the blocked nose for a couple of months and it was awful. Dizzy, nauseous, blinding headaches, face pain, ear pain.

Thanks scared...what fixed it?

Avamys steroid spray in the end and patience. I still get flare ups now, but nothing like those couple of months. They were truly awful but nothing as bad as you’re describing

You have to be very assertive about it, but they shouldn't carry on prescribing generic antibiotics that many times! The bacteria might get resistant to it.