Labyrinthitis - "brain shifts"??

I was diagnosed with Labyrinthitis about 8-9 weeks ago. It was suspected that I had a prior sinus infection but aside from some minor sinus symptoms my main concern was dizziness - namely a swaying/falling sensation - as if I were on a boat. This submissive dizziness has pretty much stayed with me throughout the 9 weeks, but with many other symptoms coming and going and perhaps 1-2 days of complete relief at points, before the dizziness has returned.

Symptoms that I’ve experience are dizziness, both on standing up and sitting down (although only really occurs when standing still now), extreme tiredness/weakness, fatigue, lightheadedness, brain fog, heavy/muzzy/swirly head, headache, not to mention a shed load of anxiety!  Thankfully, I didn’t seem to experience the spinning vertigo and nausea/vomiting that a lot of others have reported. Neither have I had any hearing loss, Tinnitus, or the fullness that people refer to.

I've found that my symptoms frequently swap and change, but the dizziness has been constant, varying in intensity. 

I've not taken any medication throughout this timeframe on the advice it would take longer for me to recover.  However, I have just purchased ‘4head’ for the headaches!

Just recently, I paid for an ENT consultation and was given VRT exercises to do to retrain my brain and fix the mismatched signals it is receiving from my ear, which I am assured should eventually erase the dizziness. Can't say I am noticing much of an improvement yet however, I did only start them on Monday!  This may be responsible for the new onset of nausea/queasiness I have had for the past 3-4 days as I pretty much avoided this for 9 weeks.

I am really at my wits end with this now.  I am grateful I haven’t suffered as badly as some people may have but I really am desperate to feel better now. This illness has shot my anxiety through the roof (which is another battle in itself) and its very hard to not withdraw from everyday activities, including work!

I am wondering if anybody else has experienced such variety and intensity of their symptoms like me? Whether anybody from this forum has yet recovered?

Looking forward to hearing from you.

Two years down the line for me. My experience is similar to Jackies, not suffering too much from spinning, more of a falling sensation. Still I get symptoms, mainly around this time of year I have come to realise, and now wonder whether it's triggered by pollen allergy for me. I don't really get hay fever but my ears have been twingeing, feeling full and I'm having some mild dizziness. Sometimes even watching a screen scroll can trigger it!!

Us ladies can apparently also have hormone linked episodes, something to do with the balance of hormones in the ear fluid changing. I also get worse when tired and stressed but guess that's down to the brain not wanting to play the compensation game as efficiently as usual.

My "brain shifts" happen mostly when I'm tired. It's very similar to that feeling you get when you're just dropping off to sleep but suddenly come to again. I also definitely get periods of positional vertigo (BPPV) when I need to do the Epley. That's not supposed to be the case with labyrinthitis, but I believe lab causes the onset of BPPV. Sometimes wonder if I have a mild case of Menieres. I have tinnitus and migraines, but have been tested and have no hearing loss...try telling that to my OH who is fed up of repeating himself!! 

My understanding is that lab stays with you for life, it's permanent damage to the nerve for which the brain usually learns to compensate eventually. I firmly believe that it's at times when your brain is in overload with stress, other illness, tiredness etc that symptoms start reappearing. A bit of a vicious circle really :0( 

I am sorry you haven't found permanant relief from your initial symptoms. Thanks for taking the time to update us though. You don't know how many times I've read this particular forum over the past 9 weeks! 

I had wondered about a seasonal illness as this time last year (thanks to Twitter reminding me of an old status) I was unwell with a nasty cold & flu. I also remember complaining then that it had been a lot worse than previous years. I've also never knowingly suffered with hayfever. 

I can relate wholely to your point regarding the falling sensation and the "brain shifts". You are absolutely spot on... it does feel similar to dozing off or that falling dream you can sometimes experience before jolting back to reality, but with less intensity.  

It's interesting that I've found I am very episodic with my symptoms lately. Its like they come & go in waves. I've had a lot of pain over and behind my eyes, like a tension-type headache. I had thought it could be caused by eye strain so, I bought '4head' this morning and I am shocked how much it has already lifted that heavy-headed/muzzy feeling. I feel more awake!  It's also reduced that falling/swaying sensation to more of an "every now and then" degree. 

I am not sure if you ever consulted an ENT, but I paid for a private appointment at London's Harley Street Clinic 2 weeks ago. I fired him with lots of questions as my worry was that this may never go away, or I'd inherit other disorders. He advised me that there was no increased risk of people who experience Labyrinthitis to contract other disorders such as Meniere's and BPPV. You'd just be very unlucky if you did! 

He did conclude that recovery from the intial attack can take between 3-12 months. About a third of patients suffered a repeat attack within 2 years and another third within 5 years (both typically through illness or stress as you mentioned) and this could be corrected by performing VRT as/when. That said, only "about 5%" of all he's patients experienced chronic or life long problems with their overall balance and the body can function perfectly well with only 1 balance organ of either ear.

I am obviously not medically trained, nor have I suffered for as long as you, but I'm not sure if that provides any reassurance.

As I've had a lot of anxiety with the condition, I am now contemplating taking a low dose of SSRI's (anti-depressants) as there is some evidence that this aids a quicker recovery. 

I do hope you find some solace in the near future in any case and thanks again for taking the time to respond.  

Ashley

As mentioned in my previous post, I recently had an appointment at the Harley Street Clinic with an ENT (Jonathan Harcourt) who is renound in his field.

I too am back and forth from the docs all saying I have eustachian disorde....

I seem to feel spaced out all the time and very panicky,I can at times feel like im goin to faint :-(

I have been referred to ENT and they seem to think its eustachian and chronic rhinositus.

was put on 6 week anti biotic and steroid drops,seemed to ease a little now im off all that im suffering big style....

im convinced theres summit more wrong and tell myself its a tumour :-(............

the last couple nights I have had a funny feeling thro my head it doesn't hurt it just seems to b a fuzz from 1 side ti the next but its enough to scare me.......

y cant I just believe its what the docs say im giin iut of mind and just want to feel "normal" 

My GP has no suggestions as to what it might be,other than saying it may be due to stress.I don't drink or smoke,have normal blood pressure ( a bit on the low side ),a little overweight,very active.I think that lots of vigorous exercise helps to keep it at bay.Insomnia seems to aggravate it or cause it.