Suspected labyrinthitis

Hello - in another section (on this forum) I posted my story about SCDS which is a balance disorder - superior semicircular canal dehiscence syndrome. I wrote a piece for the Guardian. If you put 'scds uk' into google it should bring up the article. Just be aware of that condition an MANY ENT doctors still don't know about it. Good luck - Philippa 

I don't think this is your issue but I will put it out there. I would also check your blood. Look at your Magnesium, iron, B12, and Vitamin D level. You can also look up SCM muscle, which is a mucle in your neck that can mess you up. It does not sound like your problem but I thought I would post anyway. Hope you feel better.

Based on my own experience. This type of stuff amps up the of level of stress and anxiety making it difficult to separate what is anxiety induced (especially true if you were already an anxious type person) vs. core symptoms.   I'm slowly coming to the conclusion of saying to myself. Back off let this sit in the background, resume life as normally as possible. Answers will come in time. At least that way we can give ourselves a little bit of power and control. Plus I think it is good first step in taking care of ourselves. Easier said than done I know. Wish I had better answers for you.

Hi. Many thanks for your replies. I'm not a anxious person, although these symptons are testing me somewhat! I was just wondering if anyone had experienced more dizziness after balance test ( rotation chair) and after the injection. I was extremely dizzy for about a minute or so after injection. But as I explained, since Saturday, very nauseas and feel like I'm in marshmallow land, for want of a better explanation. Although I think you're right in saying, its hard to tell which is anxiety and which is illness, at this stage, as the symptons are very similar. I've never been an anxious person, only in confined spaces. So maybe the closure of the balance chamber and the thought of the brain scan is setting something off in my head? I just dont know. I have the MRI brain scan on this coming Wednesday. I would like to know if anyone has tried the steroid ear injections? I personally dont think my hearing will come back on my right side, which I presume an earing aid will replace the lost hearing. Sorry to ramble, but I'm still in shock really. Two months ago I was normal & within hours it all changed. I'm just trying to find as much info as possible, to try and help myself in anyway. Many thanks again to all who replied. Much appreciated.

Hi - mine started 2 1/2 years ago in exactly the same way while I was on holiday in tenerife.  I did have bad sinuses and a splitting headache and vertigo.  I had had vertigo before but had betahistine and it always went within a few days.  I had been crying over a death in the family and was therefore stressed.  I had taken sinutab to help with the splitting headaches and sinuses but had to call doc when the vertigo started.  He looked into my ears and I ended up with injection to stop me being sick or antibiotics for sinusitis. I dont know as he was spanish.  It came and went over the next few days but I noticed it the most in the dining room with the lighting and the airport. After that it never went.  I went to see GP and he was awful.  I went to see many ENT and they had no idea.  Had test for BPPV which was negative.  Went to neuro surgeon as I have a prolapsed disc in my neck and it was all negative.  Had scan and that was the same.  It took a year to get diagnosis from neurologist.  He said I had silent migraine.  By this time I couldnt nod and my eyes were jumping about.  Always had the marshmallw thing from the beginning.  Before the diagnosis I had two panic attacks as I was terrified I had MS.  So was pleased when it was silent migraine.  Had loads of different tablets nothing worked.  Finally went to migraine clinic in harley street and had botox.  This stopped the jumpy eyes andthe nodding problem.  Still dizzy that never changes.  Ive had to just try and carry on with life and accept it as much as I can.  Im still bad with certain lighting and sounds.  I keep a diary and have a second neurologist who deals with headaches.  If you look at all the posts on here and other dizzy websites, we are all the same with it.  Everyone is very scared and their life has come to a standstill socially.  Im on anti depressants which have helped but nothing else touches it.  Its very apparent we are not going to die from it but its very debilitating.  When Im sick of it I just lie down and it stops.  But as soon as I move about its back.  Read some of the other posts on the other dizziness websites.  Were all here for each other x

HI, my name is Jane, I'm not going to bore you with my symptoms as you have so much on your mind at present but just wanted to assure you

That an MRI scan is nothing to worry about it takes about 20 mins and

It's just intermittent loud noises, take a music CD with you which you will be able to listen to during scan.

Good luck, try to keep smiling xx

Hi Paula. Strangely enough I had been through a stressful short period before going on holiday & kept feeling as if I was getting a cold, but didnt ie sore throat, runny nose extreme tiredness, but I just put it down to stress. So when we got Lanzarote, the only odd thing I experienced, was 4 days before the vertigo/ deafness started, I had a really bad runny nose & felt the extreme tiredness, but still no cold, so still put it down to being a bit strestressed. I dont have sinus probs, I had my tonsils out 10 years ago. Thanks for taking the time to reply how you have coped for 2 & a half years, I dont know. I've had 2 months & I feel like I'm going mad!! Hope you feel better some day soon x

Hi - as Jane says the MRI scan is nothing in fact its very relaxing.  I enjoyed it, bit of peace and quiet.  Im not dizzy when I lie down.  Just go down whatever path they wish to take you and hopefully they will rule out things as you go along.  It will all help.  The less stress you have the better you will feel.  You can really work yourself up into a frenzy but it will make you worse.  Try and relax and look after yourself whatever that takes.  Most importantly dont be fobbed off with its anxiety, it is not but anxiety is a symptom of it.  I had a row with my GP about that.  GPs and ENTs seem to know nothing but you have to get past them to get to next stage.  Try to get to neurologist.  Even then I think they are guessing.  A give away for mine is the problem with the lighting.  Driving home in the day light helps a lot. Keep hunting for answers and who knows, we might just find one eventually.

'I know exactly how you feel. I had sudden hearing loss in one ear, vertigo, nausea etc back in December and didn't receive the steroid treatment until a week after the hearing loss. ENT consultant said that probability of saving hearing would have been 90% if done within 24 hours, but lessened to about 20% after a week (my doctor refused to refer me). Unfortunately, nearly 3 months later I still have profound hearing loss, tinnitus, hyperacusis and vertigo. 

The best advice I was given was to be proactive, so after a couple of weeks of not venturing anywhere I started going out with someone (husband, daughter friend) for short waslk, building up gradually. The brain has to retrain if the damage to the inner ear is permanent and the only way for it to retrain is by getting it working. I hated it to begin with as I was so unbalance I had to cling on, and changes in the terrain were a real challenge. But I did start to make progress. I then also downloaded some VRT exercises. http://www.umc.edu/uploadedFiles/UMCedu/Content/Education/Schools/Medicine/Clinical_Science/Otolaryngology__Communicative_Sciences/Handouts/VestibularExercise.pdf

I used these every day religiously, and although to begin with they made the symptoms of dizzyness and nausea worse I was advised by others to persevere. It was worth it. I still do them when I can, and am now much more stable (I was only able to crawl around the floor at my worst, and couldn't move at all without being sick). I'm now back at work, and even managing to drive (in daylight only as darkness poses a challenge to my balance).

Went for a hearing aid yesterday but was no good as my hearing los sis around -80 dB, but yours is probably less than this, so hopefully they can help you.

I also had an MRI (which was clear), but be warned it is a little noisy, and I found it made my tinnitus worse for a couple of days after. I wish I'd taken my own earplugs as the ones they gave me weren't much use.

Take heart, life may be different but you will start gradually to adapt.