I woke up 7 days ago with a sore left ear and hearing loss in the same ear. When I got out of bed I felt a bit dizzy and disorientated. I went to the doc the following day who referred me to ENT. They don't think that it is to do with my ear which I don't understand as my ear was sore and I felt my hearing had detiorated (results from hearing test showed my hearing was equal on both sides.) they have referred me to neurology and to have an MRI scan. They don't seem to know what it is. When I say dizziness it isn't classic dizziness. I've had that before with low blood pressure. It's almost a drunk feeling. I am absolutely fine when I am sitting down or lying down. It is just when I get up. It isn't severe to the point that I fall over but I need to guide myself through corridors holding onto walls and things. Does anyone have this symptom? The pain in my ear stopped after 4 days and my hearing feels normal now.
Hi,my right ear hurt 6 weeks ago so doctor gave me antibiotics as I was severely dizzy,he thought it was a ear infection, after 4 days I was feeling a little better than it all came back and I was bed ridden a week as so lightheaded, I'm not great again now for last 4 days I have to hold on to walls etc,no one knows what's wrong with me,I have a MRI scan next Sunday but I'm so scared as I've had symptoms so long,hope your OK?lisa
yEs my dizziness is much the same, it is a more a swaying feeling, not spinning. And yes. Hold onto walls at times too, usually,when I am. Ore tired which is when it,s worse.
Sorry the screen froze, so will continue. When you see a specialist they usually ask all sorts of questions like do you feel things are moving,,or do,you feel,it,s you that,s moving. I am the latter and I suspect you re the same. aS far as your left ear is concerned,,of course that is the problem side, so any dr that tells you it isn,t doesn t know what they' Re talking about! mIne is my right ear and I know that the Neuro Otologists I have seen for extensive tests recognise that fact. I am sorry to say that my experience with ENT,s isn,t wonderful. they seem to only know about hearing and glue ear problems!! they do not train at all in the Vestibular area which is a lot,longer training than regular ENT stuff. If you think about it Ear Nose and Throat, is exactly that, no mention of Vestibular eh?
MRI,s regularly don,t show much, they do them Mainly to rule out tumours etc. also a straight Neurologist will be more interested in your Brain function, and again from experience of seeing one myself, wasn,t much help at all. tHere is a connection with our dizzy problems and the brain, but it
involves signals and all sorts from theVestibular System, and unless they are trained in the latter they will not know how to diagnose. so if I,we're you, go through the motions, have he MRI, see the Neurologist, you might strike,lucky who,knows! tHen you say to,your GP, I need to see a Neuro Otolgist that deals with the vestibular system!! hAve a Google meanwhile
for your area for one in your local hospitals, so,you can 'suggest' To your
GP where there is one! that,s what I did as most GP,s have no idea what
they are. Crazy you have to,do their job for them,but that's How it is these
days!
I feel the same Lisa, my ear looked ok inside so I didn't get antibiotics. I am worried too but if it was anything sinister I am sure the symptoms would be getting worse. I had a look online and there is a type of migraine called vestibular migraine or Otic migraine which seems to be my symptoms but docs are not committing to anything. It's making me so fed up as I have 2 kids and it's the holidays! 😔
Have you been to the docs? What are they thinking. Mine seem to be treating the symptoms instead of l finding the cause.
Hi Gillian. You are right. There was no mention of vestibular problems and I only found this out by googling. As for ENT I wasn't overly happy as they did even less tests than my GP. No tilt test or anything similar. They checked my hearing and then inside my ear, I made a couple of different facial expressions and then she said she would refer me to neurology.
I'm with Gillian ! Vestibular expert specialist is what you need - not all ENT doctors are specialist also neurologist ! We all found out the hard way !
Hi Donna, I've just had a look online and it definitely seems likely that it is s vestibular problem. I spoke to my GP who was a bit taken aback by my prognosis. Do they not realise the first thing we are going to do is Google. I am on my 2nd lot of anti-sickness type medication. First was Stemetil and now Cyclizine. I don't notice much of a difference. I am back on tues so hopefully he will listen to me. What was treatment for you and has it worked?
yEs I have been to,lots,of Drs, specialists etc. I am currently being seen by a hospital,in London that deals exclusively with all Neuro stuff, including he vestibular,side of things. Sadly I think all they know what to,do is deal,with the symptoms from my experience. uN,ess you have had an accident or brain injury, it,s all a bit of a guessing game. aS,the consumer,rant said to me when I went for my appraisal, the inner ear is so intricate, it isn,t always straight forward, and I do understand that. bUtmi also I derstmd why it is so frustrating. bUt the. Again, I have had Crohn's disease some my mid 20's and now 67, and again no one knows for,sure what causes that either, so they treat the symptoms! there is actually what they call Auto Immune vestibular disease, forget the proper term, I am now wondering if I,ve got that! and just now when looking up something else on vEDA website (A mine of info!) there is something called EVA. All to do with an enlarged lymph sac in the inner ear, and as I get a pain sometimes in that area at the back,of the head behind the ear sort of area I wonder if i have got that!! Ha ha. hAve a Look Iona.
👍👍
nO,I had my time wasted by a silly old duffer in ENT for nearly a year, then blow m down my GP sent me to an Audiologist who was in the same department as ENT, and HE wasted another year of my life banging on about MAV!!
I was hoping to just get a pill and that would be it. Oh dear. 😩
Hi there I have BPPV and Vestibular Mirgraines (silent migraines) the BPPV basically a rocks in your head floating inside the fluids of your inner ear giving a false perception that your still moving ( spinning , vertigo) I had it for 5 months and couldn't work or leave the house much as all the secondary side effects of anxiety , confusion , photophobia , vertigo, swaying ect ect - so shopping centres were out and basically you become home bound ! It's ok you will come out of it as we all learn to live with it as long as you get the right doctors !!!!! I had the Omniax Chair in Sydney as the standard Epley did not work after the third time and just made me worse ! So I headed close to 2000kms and they basically turned me 360 degrees upside down and side to side! It works and my dizziness has passed but I still have the silent migraines and that's my next step is to get the correct medication when needed to deal with then as they too deal with the vertigo! I can cope better now but it took a long road to get the correct doctors - grrrrrr why is this always the problem I see is the misdiagnose and we have to tell them what's going on let alone Google - I found a vestibular facebook site in aussie so where ever you are you should have one and they share and care ! Can't find one, ours is happy to take in overseas of course !
Hello Iona,
I have same symptoms, I was lucky my Dr new straight away what I had wrong. He prescribed Betahistine 16mg 3 time daily and Cinnarizine 1 at night. (slow release)
I no longer get the morning dizziness and spinning, but I'm not free of it all together. If I miss a dose, or get up too quickly, I know it.
Wish you well
Pauline (UK)
I've tried migraine pills and they didn't work for me ,I've had this almost 6 weeks and you don't get migraines that long so sadly I don't have a clue what I have,I would guess its some sort of ear infection but hopefully I get Answers after MRI but lots of people on this site had MRI scans and nothing showed up,I'm so depressed as I have two girls who I love to take out and I'm not well enough to even go to the park so my boyfriend takes them,I miss it so much ,lisa
Firstly has your doctor done the Hallpike manoeuvre to test if you have BPPV? Rocks in your head floating within the middle ear??? My doctor did it straight away and yep I started spinning and crying for it to stop - lasts about 20 seconds but it's scary - at least if he does that on both side you can rule out BPPV ! I was then referred to the physio that understood BPPV however the manoeuvre could not fix me (Epley ) but it was the rare case! She pushed the doctor to send me to a specialised area that deals with vertigo after the local neurologist(MRI) told me I just had anxiety - if it wasn't for her I would be still left in the dark ! Take control and demand a dr that specialises in Vertigo and Vestibular diseases ! GP Doctors are jack of all trades experts in non! They have a handbook that they can look at , should be able to look at that refers these kind of specialised near by! Sorry if I'm overloading information but information that might save you months of anxiety and stress! I also am aware of people that only had it for a few weeks and we don't see them too often on this site , just us poor beggars trying to deal with it stay strong and stay firm ! I want , I want!
Gillian, my vertigo is gone! It almost went once but came back. I am confident this time (touch wood!)
What I have learnt is that it goes when it is ready and all the interventions do not work!
It is 8 months since the very violent onset when I could not sit up or get up unaided.
I hope for others to get well too.
Hi Iona. I started with similar symptoms back in April. I was treated for an ear infection till July by both regular docs and an ENT. In July my ENT finally ordered a CT scan and found a cyst behind my eardrum. I had it removed and he been struggling with the rest ever since. You can follow my journey through the cholesteotoma link. My advice is that you don't stop pushing and questioning. If your gut tells you they don't know what they're doing, then they probably don't. Don't worry if you have to go through multiple doctors to get answers or even to get the same answer but different treatment. Everyone here is so supportive. Good luck.
Hear hear Donna!👏😃