Week 1 – Attack of the Labyrinthitus
On Fri Feb 13th 2015, exactly 3 months ago, I was busy finishing off things at work and eagerly looking forward to spending Valentines weekend with my boyfriend. I was feeling a bit tired and run down and so we had decided to try and arrange a last minute spa getaway as a relaxing and romantic treat. I was looking forward to finishing work, packing my bags and driving away for the weekend. My left ear had been feeling a bit funny since the day before and I was slightly concerned about swimming with it but wasn’t paying much attention to it.
I left the office to meet a friend for lunch and BOOM!! – suddenly something was seriously wrong with me. The cafe was spinning and rocking and I felt like I was going to fall over and throw up. I felt like I’d been given some super-dodgy class-A’s. I made my swift apologies, grabbed my things from the office and tried to get myself home as fast as I could. The walk home was a whole new experience as the ground seemed to be shifting and everything was looking strangely surreal. I didn’t have a clue what was happening to me.
I got myself home, climbed straight into bed and lay motionless because the slightest movement made me unbelievably sick and dizzy. I slept a bit and then got straight onto Dr Google to find out what was happening to me. It didn’t take long to suss out that this was classic Labyrinthitus.
Labyrinthitus, is a catch-all name used to describe what happens when there is damage or inflammation to the inner ear. The damage can be caused by a virus (most commonly), bacteria (more rarely), chemicals/medication or be part of wider systemic issues in the body. The inner ear contain the vestibular (balance) and audio (hearing) nerves and so any issues here can produce acute symptoms of vertigo, nausea/vomiting, visual changes, hearing changes and tinnitus. If there are no effects to the hearing then its generally referred to as Vestibular Neuritis instead.
For the next 4-5 days, any time I needed to move I was overwhelmed by such extreme vertigo and nausea that I would literally end up holding onto the floor, crying hysterically and begging for it to stop. I can only describe it as being spun so much, all the time, that all your insides want to come up and out. My boyfriend had come over straight away to look after me and we spent our Valentines weekend adjusting to my new inability to move or function. He fed me, held me and shared the trauma of having to carry me to the loo and listen to me cry in my dizzy-nausea-agony. It was a horrid experience but I don’t know what I would have done without him.
A few days later my GP visited and confirmed I had Labyrinthitus. He told me to rest and that it would pass in a week. He prescribed me Stemitil to reduce the dizziness and he left me to recover, still laying horizontal and not moving my head unless absolutely essential.
I chose not to take the Stemitil because I’m cautious about taking medication, but also because I’d seen from the research that it can hinder the brains ability to re-calibrate after vestibular nerve damage.
Any damage or impact to the vestibular nerve on one side, causes it to fire neurons at a different rate to the other side. Since the brain then gets uneven signals from each side of the head, it interprets the body to be in a spinning motion, and the rest of the body responds. Now in many cases (especially for those whose vertigo has lasted longer than a few weeks), this nerve damage is permanent. But eventually what happens is that the brain learns to re-adjust and ‘compensate’ for the faulty signals, and the person will regain a sense of balance again.
Stemetil works by suppressing the vestibular system which is all very well in the acute stages but not ideal if you want to recover from your dizziness. Whilst GP’s and even some Ear Nose and Throat specialists (ENT’s) will tell you to keep taking the tablets, the evidence is that they can hinder compensation and so should only be taken in the acute stages 1-2 weeks. Any well informed specialist should know this. Anyway, I chose to brave it (suffer) and go o’natural, not taking them at all to ensure that nothing got in the way of my recovery.
If you are going through Labyrinthitus now, I feel for you. Its a terrible thing to experience. All I can tell you is that the worst of it WILL pass in a few days and many people get back to normal in as fast as one week. Stay as still as you can, rest and make sure you have someone you feel close to, to help you. People will assume an ear infection is an ear-ache so do explain the difference so they understand and can support you appropriately. Take the anti-dizzy pills your GP gives you, but not for longer than 1-2 weeks.
OR..There is another option and this is what I would do if I knew then what I know now. That is – call an ambulance or get yourself to A&E. The chances are you feel much too sick to do this. The journey and the wait may be agony. And there is a chance they just send you home and you will hate me for telling you to do this. But there is also a very good chance that if you go to A&E now, in your state, you will get the tests done that may otherwise take months.
If I hadn’t spent so long waiting for tests I may have got the help I needed to save my hearing and to get VRT quicker.
June 1, 2015 @ 12:25 am
I literally woke up one day after a virus and couldn’t walk. The dizziness was there and never left. Seven months of fighting it and I have seen everyone you can think of. I cannot believe it. I’m so happy though that you are on the right track to getting better and managing it! Sorry for all of these notifications xx
June 1, 2015 @ 9:36 pm
I’m so sorry to read what you have been going through and I feel your pain. Darling please hold strong and have faith that this will pass. Somehow, we will find our equilibrium again. You are young and there is so much round the corner for you that you don’t know about yet. I’m struggling with the same worries, and the sour difference between the life I expected to be living and the one I am in. Carry on writing, sharing, mustering up the energy to get just till the end of this day…one step at a time and eventually we will discover we got somewhere nice…I’m following your blog too and will be thinking of you x you are a great writer by the way!
p.s. If you have vestibular/dizzy issues, have you tried VRT? Have you looked up information on Vegas Nerve damage? feel free to message me
June 1, 2015 @ 10:03 pm
I have searched everywhere for someone who understands and you, and another lady, were the only I could find. I am sure there are many sufferers out there!
I have no idea what VRT is. I’ll have to research it. does it have anything to do with balance testing? If so, I had 80% of them done… I am in the process of gettig a referral for an ent but my doctor doesn’t believe me…
I have to look this up! I will send you a message! Do you have an email I can contact you on or other? I can send mine first if you’d like xxx
June 1, 2015 @ 11:55 pm
VRT stands for Vestibular Rehabilitation Training. These are exercises that a physiotherapist can give you to help your brain learn to rebalance again. I don’t know where you are in the world but if you cant get it quickly through your healthcare provider I would suggest paying for it as it shouldn’t be high cost. I gave up waiting for the NHS and am going to have my first session tomorrow. I wish I had just done this months ago. The word on the street is that its only when people start doing these exercises daily that they see improvements. My email should be on the sidebar its email@example.com
June 2, 2015 @ 12:24 am
I’m in Australia. I am seeing a physio but she never mentioned such thing. She isnmt much help to me. My neuro’s never mentioned anything like that either. I have seen an osteo too. The specialists in that field are hard to find down here. I’m seeingan ent in late june and I’m hoping he can recommend one to me… I hope the appointment goes well for you!
Thank you xxx
June 3, 2015 @ 11:33 pm
Hey Cassandra – thinking of you. Really think you should ask your physio, or phone another one and ask about VRT. Any physiotherapist should know about it. Fingers crossed for you
June 4, 2015 @ 12:11 am
June 21, 2015 @ 8:28 pm
I have had vertigo for 4 years. I can’t believe how well you describe how I feel…all the time! I spent 2 days in hospital when it started, then had numerous tests and was told I have lost ‘all balance function’ in my left ear. I also have tinnitis, extreme sensitivity to light and sound, and nausea. My husband is very sympathetic, but no one can understand what living like this is like unless you’ve been there.
June 21, 2015 @ 8:58 pm
I know Linda. Nobody gets it. Thats why its good we can support each other. I hope my blog is a support to you. I also recommend the Labyrinthitus Support (and simmilar) Facebook groups. How long has it been since it hit you Linda? x
June 21, 2015 @ 11:54 pm
Candice as you stated there are lots of other people who are suffering with vestibular issue’s and many great groups on facebook, websites that have good information. I can relate as I have had dizzy issues for at least 4 year s now. Stay strong and day by day. If anyone needs more info feel free to contact me and I will pass along what I know or at least say I get it what your dealing with.
June 21, 2015 @ 8:40 pm
have been suffering for 6 years now, I was initially diagnosed with an ear infection, then 3 weeks in my GP said labrynthitis. I have been prescribed Betahistine and bucasteem and I am currently seeing specialist number 3 who is sending me for balance tests in 2 weeks. He also upped my Betahistine dose x3 which made me worse so the Gp has reduced it now to 8mg 3x a day. All they seem to want to do is prescribe me a tablet that is an antidepressent but isnt used for that reason, i have refused to accept them and i get the feel the specialist just wants to shrug me off because of this. He did mention VRT but the secretary is now saying hes not refering mr for this now.
June 21, 2015 @ 8:55 pm
Tina, 6 years?!? I would really recommend trying to see a neuro-otologist as they are specialists in the field. It feel so unacceptable that anyone has to suffer so long without support. I’m sorry you’ve been through this. If you are in the UK you can look for a neurotologist and then ask your GP to refer you. I don’t know the system in other countries. VRT is essential for you to get your brain to recalibrate and I would suggest finding a physiotherapist to do this with you or demanding it harder from your doctor. Dont give up. Can you find a different doctor? If I had waited for my doctor to send me, nothing would have happened yet. Also the tablets prevent recompensation and shouldn’t not be taken beyond the first acute stage. It seems not all doctors know this but the specialists tell you to stop taking them.
June 21, 2015 @ 9:09 pm
I have to say that was a somewhat same experience for me, except my symptoms went undiagnosed for months. I get all my care from VA hospital so every time I checked into hospital the physicians just kept assigning me meclizine for my vertigo. Long story short my nerve damage is permanent. Bilateral. So do your best take help when it’s offered, or ask for it. Don’t let pride hold you back. Good luck. MD
June 21, 2015 @ 10:03 pm
Mike, apparently all nerve damage is permanent. I have been told I have Total Vestibular Failure on both sides….but she also said that my brain can still relearn balance and I will drive and do normal things again…(all fingers and toes are crossed as I say it). This is in my Week 13 blog. Hope you are getting VRT and it is helping.
June 22, 2015 @ 11:07 am
I am thank you. Have my balance exercises I do,mainly it’s when I close my eyes, my home is lit up with night lights. That first week after finding out was hardest
You fall into depression and wonder how you can go on and live a productivity life. Thankfully I had family to give me support, I’m a bachelor .so I didn’t have a significant other to lean upon. My dizziness isn’t so harsh now I still get nauseous and anxiety attacks but learning to deal with it.
June 21, 2015 @ 9:36 pm
I’ve been a sufferer for over 15 years now and have been shuffled from doctor to doctor, consultant to consultant and finally diagnosed with BPPV. My problem is that episodes range from very short frequent periods to then having nothing for a number of years. I could go on and on about tests, treatments, scans, Epley manoeuvres. The isolation it brings leaves me tired, sad and depressed. Nobody truly understands if they are not a sufferer, and the frustration of cancelled social engagements can’t test the strongest friendship. If people can’t see it, they don’t understand it
June 21, 2015 @ 10:00 pm
Andrea, Its important to have some contact with people who do understand and can support you. It really does help to talk to people online, maybe even meet or speak on the phone. I met and am speaking to a few ladies who contacted me through this blog and its a great support to share experiences and egg each other on. I dont know as much about BPPV but I hope the diagnosis is helping you to find a suitable treatment.
June 22, 2015 @ 11:10 am
Hang in there. If you’d like my support or friendship I’m on Facebook. Look me up. Mike Duresky
June 22, 2015 @ 1:10 am
This is exactly what I had in March-May this year. It took a lot of internet searching and TONS of various hearing, balance, CT scans and physio tests to try and get on top of it. Going though it was terrifying. I woke up and literally couldn’t balance enough to walk, extreme vomiting and unsteady like the room was violently spinning and my eyes couldn’t hold on anything. This went on for weeks. It’s not as rare as you would expect and is a pretty scary ordeal. I am out of the other side now but the visual stuff lasted so long that’s why they did CT’s on the temporal and brain. Funnily enough I was at a pole dancing class the night before mine struck me, I wondered if that was part of it but ent specialist says probably not. Great article. It’s hard to find information I think. Most of my GP visits involved them googling stuff and printing it out 😉 Thanks for sharing