Labyrinthitis – One Year On

Labyrinthitis Update – 12 months.

 

This time last year I was in the throes of the acute stage of Viral Labyrinthitis and I am writing this partly for completion of the series of blogs and partly to encourage those who are currently suffering that there is light at the end of the tunnel.  In my case that tunnel was longer than average but that’s one of the issues with this particular illness – it is usually different for everyone.  So this is where I’m at now.

The Good

I am 99.9% recovered!!

The vestibular rehabilitation exercises I was given by the physio really did work.

I saw a specialist who confirmed that I do not have Meniere’s disease.

I was given the all clear to drive and I am able to live life as normal: work, rest and play.  I’ve even managed to go on holiday.

The Bad

Decompensation days!  The damage the disease causes is permanent, your recovery is essentially your brain compensating for the damage.  Periodically I have a day when things aren’t quite 100% and when I go outside I notice that the world is moving as if I have no shock absorption.  This is the only way I can describe it as it is not feeling dizzy but it is feeling ‘not quite right’.  Thankfully this usually wears off after about 5 minutes so I can just go with it.  These days are also becoming less frequent over time.

Keep hold of the vestibular rehab exercises as you can keep doing those along the way if you feel you are not making progress and it  also helps shift any residual decompensation symptoms really quickly.

I can’t drink as much as I used to – I love red wine but I have had to rein it in.  Alcohol makes me dizzier faster these days which is not that surprising considering my ear is ‘buggered’ to use the venacular.

I still find some activities hard: hoovering makes me feel rather light headed.  I think the nature of the back and forth movement maybe effects me in this way, it is getting easier so I just keep forcing myself to do it.  However, I hate hoovering and I have to force myself to do it anyway!

The Ugly

Pain – I still get some ear pain but it is less severe and less often.  I asked the specialist why I got pain and why it is in both ears and the response was, ‘it just happens with some people and will go in time, we don’t really know why some people have it and some don’t’. So essentially I was just unlucky.

Fear – this is the worst thing I think for me now.  Every morning I wake up and open one eye tentatively to check if I am OK before I open both of my eyes to get up.  I am hoping this will also lessen in time but considering the severity and duration of my symptoms it is not that surprising.  I am also petrified of catching a cold since these are often said to  precede labyrinthitis; this is despite the fact that I have had probably thousands of colds in the last 50+ years and only had labyrinthitis once! It is worth noting here that just because you have had it once  it does not make you more likely to have it again.

My top tips:

Rest.  A lot.  In the early stages you have little choice but to lay down however once you are able to get up and around even doing small things will make you very tired. Your brain is using a lot of energy it never used to have to use to keep you balanced.  Being tired will also make your symptoms worse.

Don’t rely too much on pills.  The pills you will get in the initial stages of the disease are essential to get you through the first few days.  Take them.  However bear in mind that these are vestibular sedatives – they calm the inner ear – if you take them for too long they can and do delay recovery.

Do as much as possible once you are able to walk around unaided.  Potter around in the house.  If you can get someone to take you outside.  It is terrifying and you will probably only get about 100 yards, I know I did. But work on it, do a little more each day.  It will speed recovery.  However do this safely – don’t put yourself at risk of falls.  I went out accompanied for about a week, then I got a walking stick.  I was able to walk the dog with a stick on my own for short distances after about 2 weeks.

Insist on a physio referral early on and offer to take a cancellation, they often have waiting lists and the earlier you can start on the vestibular exercises the better.  I got started on mine at week 4, the usual wait is about 6-8 weeks where I live so cancellations are your best friend.

Get help – use your GP!  Also have a chat to your employer.  I went back to work after 5 weeks on short shifts. My work involves going up on steps and ladders so I also made sure I could be excused from doing anything like that.  Going back to work really sped up things for me but I did have the advantage that I can walk to work from home.

 

So that is the end….I hope for ever but who knows.  If you are currently suffering, be assured that you will get better it might just take a while.

smiley-thumbs-up-clipart-clipart

 

 

 

 

 

 

 

Labyrinthitis – Week 12

Tags

The reality is that I can no longer remember what ‘normal’ feels like. My days consists of assessing how much better or worse the perceptual madness is today, I no longer wake up hoping or expecting it to be gone…because it never is.

So here I am at week 12…..I’d say I am about 90-95% recovered depending on the day to day variations of the illness.

At this stage life can be lived pretty much as normal: – I can work, socialise, walk the dog, do things in the home.  I can even have a nice glass of red wine occasionally.   However this all requires a lot of effort and concentration.  I can’t just up and do any more, I have to consider the amount of effort and energy it will take and how exhausted I am going to feel by the end of the day.

 

I’ve done and I am still doing physio religiously daily and I have progressed a huge amount from the early days but it now feels ‘stuck’ which as you can imagine does not do a great deal for your self esteem or your mood.  I am back on antidepressants.   I’ve kept active and done everything to speed up the compensation in the brain.  Now I feel like I am marking time.

What I still can’t do:

Drive: My distance vision is still affected.  On a day to day basis this means whenever I go out of the house the buildings at the end of the street bob up and down or side to side.

Concentrate or walk around in busy or very visually stimulating areas for long periods of time.  This is exhausting in both cases, and is deeply unpleasant on top in the latter.  At work I have to sit down more between tasks just to reset my sense of equilibrium. Luckily I can do a lot of things sitting both in my paid and my self employed work.

 

The worst thing now is that everyone assumes you are better because  not only do you now look normal you are also doing normal things.  One day I hope I shall be 100% recovered but in the meantime I’m just doing the best I can.

 

 

 

 

Labyrinthitis Diary – End of Week 5

Tags

, , , , ,

I am now just starting Week 6 on the Labyrinthitis trail so I thought I would write a quick update.

Things are still continuing to improve – I’d say I am about 80% now. The world still bounces up and down when I walk around but it is becoming less severe. I can actually go outside, and do normal things like shop in a Supermarket without it being a huge problem. Supermarkets are actually the worst thing for me – especially when they have really patterned floors. There is so much stimulation visually that it is hard to remain focused and stop yourself from spinning out. But stopping for a moment and focussing on something helps with this. I still feel nauseous after a trip to the supermarket but it passes off almost as soon as I am outside.

Tomorrow will be my first day back at work. My manager and employer have been really great, and I am returning on short shifts for now, working up to my full hours hopefully as soon as possible.

I had my first Physio appointment

I was very stressed about this as I’d heard it was horrible – however it was not as bad as I had anticipated and thought I’d blog the experience for anyone else out there dreading it and frantically googling for information.

They take a full history of your current problem and any other existing medical conditions you have, medical history, how you have progressed so far, and how you are feeling at the present time.

The physical assessment involves tests to ascertain which ear is affected, how much your balance is suffering and what brings on symptoms. These are basic – standing on one leg, marching on the spot with your eyes shut, getting you to walk in a line moving your head side to side and up and down. This sort of thing. They may also perform the eppley manoevre. These tests will bring on symptoms so you should be prepared for that, but quite honestly, it won’t be anything worse that you have already had so try to avoid working yourself up

Once they have assessed you they will give you some Vestibular Rehabilitation Exercises to do at home.  This helps train the brain to ignore the abnormal signals from your damaged ear.

There are a lot of self help things you can do as well as the exercises and here are some I have found the most helpful for me:

Drink lots of fluids – water, herbal teas, etc. I do drink normal tea, but I avoided coffee as caffeine is not supposed to be helpful with this. I drink Raspberry and Echinacea tea which tastes great but also has the immune boosting echinacea to help fight the virus. Keeping well hydrated is good for the inner ear.

Avoid alcohol. This was hard for me because I do like a glass of red wine. But, apart from half a flute of champagne on my husband’s 50th birthday I have avoided booze completely. It is dehydrating which can effect the fluid balance within the inner ear, and also effects balance anyway (as proven once you have had a few glasses!) I also lost weight which is a big plus.

Treat Nausea I found that peppermint and nettle tea was soothing for nausea. Also it meant I could lay off the stemetil earlier rather than later which again is supposed to speed recovery.

Moving around – as much as you are able and is safe. This is hard because it is really tempting to just sit and be still and avoid the dizziness. However, the less you move about the longer recovery will take. Your brain needs to experience the problem and learn to ignore it. After a while I moved as if I wasn’t dizzy. This was very destabilising at first but it did seem to bring good results over the course of the day.

Doing normal tasks – doing normal things helps the brain to compensate more quickly for the damage to the inner ear.

Rest – don’t overdo things and get really tired. For the first couple of weeks I was sleeping an awful lot: about 10 hours a night plus an hour nap in the afternoon! As time went on I found it helped to just sit down between tasks and recover. Your brain is using a lot of energy just trying to make sense of the conflicting information so be kind to yourself and rest when you feel you need to. I will still lay down for 10 minutes just so I can feel normal for a while. Then felt more able to continue to tackle things. Prioritise what you do, you can’t do everything.

Get help – you may need to remind people that although you look normal you certainly don’t feel it. This is the case with many invisible illnesses so when people ask how you are, take the chance to say that you’re feeling better but the world is still moving around somewhat. Let people know that you may need to take a ‘time out’ periodically.

Keep moving forward and remain positive – the vast majority of people recover from this completely within 6-8 weeks. I am hoping I am one of these!

Labyrinthitis Diary – Days 25 – 29

Tags

, , , , ,

Wednesday Day 25

Migraine, nausea, and still dizzy!

Thursday Day 26

Residual migraine remains, I still feel nauseous. Walking is easier in the house but the whole world wobbles alarmingly when I stop! Outside I feel pretty much the same although I am able to walk a little faster before the nausea starts to kick in.

I managed to get a physio appointment for this Monday. Gobsmacked because when I first rang the earliest was 6 January. I am not sure if I am pleased about this or petrified. Apparently it will probably make me more dizzy for a time. However, I am so desperate to get over this I guess the earlier I start the rehab the better it’ll be.

Friday Day 27

I’ve been doing a lot of reading and most of it seems to suggest that the more you carry on doing your daily activities “as if you are not dizzy” the quicker compensation occurs within the brain for the damage caused to the inner ear. So today I’ve tried to put this into effect.

I have noticed that when I first go outside the disorientating feeling that the floor is moving is a lot more exaggerated but that the longer I am outside the easier it gets. For instance I can look at things now in the distance and they are stationary whereas before they moved around much more than things close by. Focusing a short distance ahead is helpful, and this has now extended from 4-6 ft in front to around 8-12 ft in front. I can also stop and look down the road and the road is static, although it moves again if I do. I still had to sit down for a while when I got in but I was a lot less nauseous today than I have been previously.

If anything I am a little worse today in that I still feel movement even when I am stationery and I have not had that for a while. Moving around is much the same and I have managed a few tasks in the house today, and then rested afterwards until I felt more back to what is now considered normal. I am determined to get over this.

One piece of good news is the fact that no having had any wine for almost a month means I have lost half a stone in weight. I guess every cloud has a silver lining!

Trying to start getting things up together for the xmas break – things like decorating trees just seems like a huge hassle right now, but I don’t want to totally miss christmas because of this stupid labyrinthitis. I am also trying to keep things as normal as possible for everyone else.

Saturday Day 28

Slightly more dizzy this morning if anything this morning but decided to ignore it and carry on as normal. Had relatives visit today – staying the weekend – and was a bit anxious as to whether or not I would be able to cope with this as finding a lot of extra stimuli often exacerbates the dizziness. Actually it was OK, and had an enjoyable evening. Mixing socially took my mind off the dizziness meaning that I really didn’t notice it at all until I got up to move around and then it seemed to be less. Not sure if that is distraction or if it is improving in general.

Sunday Day 29

Exactly 4 completed weeks since I came down with this horrendous illness. Today I feel lightheaded rather than dizzy although sharp movements still cause spins. I’ve carried on as before – moving around as if I am not dizzy and coping with any symptoms. The knock on effect of this is that people think I am a lot better than I actually am. Sods law I guess! I have my first physio appointment tomorrow and I am really worried it is going to make me worse again. Not sure what to do. I guess just go along and see what happens. I just want to feel normal again! As long as it is only feeling awful whilst doing the physio and not for days following I’m up for it!

Labyrinthitis Diary – Day 24 (Last Post For A While)

Tags

, , , ,

Last Blog for a while.

A SUMMARY OF WHERE I’M AT.

My original diagnosis was BPPV (Benign Paroxysmal Positional Vertigo) but because the vertigo is not actually influenced by position and because it has gone on so long this was changed to viral labyrinthitis. Then I had symptoms of a bacterial infection so I had antibiotics for that which seem to have worked in that I now have no ear pain or swelling.

This is day 24 (Tuesday) and today I woke up today feeling worse than I have done for a while – back to feeling perpetually drunk. Headache. Walking around is more difficult and I was unable to go out today. I just didn’t feel confident enough to do so. Maybe going to the shop yesterday is classed as ‘over doing it’ however I slept for 4 hours yesterday afternoon so it can’t be a case of not resting enough. Yet I am just so tired today.

It wouldn’t be so bad if I could focus on doing something for more than half an hour at a time. I have lots of things I could be getting on with but no ability to do so. The fact that you look normal and that although you feel like you are lurching around this is not always apparent to others just makes this worse. Always at the back of your mind thinking that people think you are exaggerating or malingering in some way. Maybe this is partly all the media hype about people faking being sick, or just anxiety. Who knows?

Because  I felt worse than I have been feeling I arranged for the Dr to call and he rang this afternoon – confirmed that yes, it is Labyrinthitis because if I’d had BPPV I’d be feeling normal by now. Been advised to rest, but also to do normal household tasks, and continue to walk around the house and take short walks in the local area to help my brain compensate for the damage to my inner ear.

I was due to go back to work tomorrow but this is now not happening and I have been signed off sick for 2 weeks with the proviso that if I do feel better after the first week I can ignore the sick note and go back to work. If is not ‘significantly better and still improving’ by then I have to go to see an ENT specialist. If it gets worse I have to phone again (that was comforting!) I shall also be booked in for some physio for vestibular retraining therapy (sounds lovely) but that won’t be until January.

I cannot begin to express how hacked off I am with this whole thing at this stage.

I shall not be blogging regularly any more as there really is nothing new to report, but will be back when there is!

Labyrinthitis Diary – Days 22 & 23

Sunday (Day 22)

comp_dizzyThe start of week 4…and I woke up this morning still dizzy but it seems to be more like it is later in the day ie, slightly better this morning. If it follows its normal course it should improve over the course of the day so it will be interesting to see how I am at bed time this evening. Normally I can do very little in the mornings at all, but today I have managed to cook breakfast for 3 people. Sounds like nothing to most but to me this represents a leap forward!

I had a bit of a spin out around midday accompanied by the usual nausea experienced when I move about too much – probably because I was trying to do far too much. It did pass fairly quickly once I sat down. Note to self: do not rush around at top speed and try to ignore this!

Another plus is that the swelling on the outside of my ear seems to have gone down a lot and I have no pain in my ear for the first time on waking. I can still hear a very slight tinnitus on occasions but nothing like it has been before.

Monday (Day 23)

Final day of antibiotics today. I still have slight ear pain occasionally but all the swelling has gone, and the tinnitus is either absent or minimal. I actually felt normal when I woke up ie, I could not tell if I still had the dizziness until I actually sat up. I do though….and whilst I would say it is closer to light-headedness now, the floor/room still moves like I am on a boat as I walk around.

I managed to drop a parcel off at a courier drop off – 15 minute walk took 1 hour but I did it!! Took my stick for physical support and the dog for moral support as I was feeling very anxious about going out today. I am proud but very tired now. The nausea always comes back too if I move around too much. Had a couple of friends and my husband who offered to do it for me, but I really feel I need to do these things myself as doing normal tasks is said to speed recovery because it helps the brain compensate for the damage to the inner ear. And also to be honest I don’t like to constantly rely on others. I am aware that I actually look normal to everyone else, and that the longer it goes on the more tedious requests for help will become. This simple task led to me sleeping for four hours!

Each time I do anything I just feel so very tired, and I know this is the energy that is constantly being expended by my brain trying to match up all the conflicting signals. The only option I have for this is rest, rest, and more rest. I have been sleeping in every day – I just cannot physically seem to prise myself off the bed – and yet I still end up nodding off on the sofa at around 4pm. I am hoping I am going to be fit to go to work in 2 days time. I have been told I can return and just do my short shifts for now. All I can do is see how it goes.

Labyrinthitis Diary – Days 19, 20 & 21

Tags

, , , , , ,

Thursday (Day 19)

Logo - DizzyBird logo with starsHave now totally given up hope of waking up and not being dizzy as everyday I am invariably as dizzy as the day before. Decided this is probably it now, not point posting further daily updates to my Facebook buddies as there is nothing new to say. It’s boring me so lord knows how other people feel. Poor husband. I am working on accepting that this is life for the foreseeable future and concentrating on ways to try and live with it and be as normal as possible. I started back on Prozac today because I feel so totally depressed.  I’m going to be a dizzy bird for a while yet.

Friday (Day 20)

It’s my husband’s 50th birthday today and because I’m off sick I have no money for a gift. This makes me feel like crap. His friend is visiting today and we are having a nice birthday meal which is great and I hope I’ll get to enjoy it because the nausea is a lot worse today.

I’ve managed to walk the dog on my own and I went a bit further today. I have also hoovered and mopped some floors (much needed) within a normal amount of time and although it did leave me feeling rather sick a cup of peppermint and nettle tea soon sorted that out.

I feel I am learning to cope a little better with things but I still feel extremely down and wondering if this will actually ever end.

I believe I now have what is called ‘residual dizziness’ which apparently ‘goes away in its own time’.

Saturday (Day 21)

Had a really nice evening yesterday, nice to socialise and feel a bit more like a normal human being. I did find it all rather mentally tiring though and had to take a brief time out during the meal.

Experiencing a strange change in the dizziness today: When I look across the room the room is still but I feel like I am slightly moving. Also when I move my head sometimes the objects in the room appear to have a 1 second catch up time. Very odd. I have had more nausea today and a headache. The world still feels much the same when I am walking although outside the movement of distant objects was less. It is hard to tell if overall things are getting better. It is such a long slow process. Many people I have spoken to have said they were practically back to normal by the end of week three. This is disheartening as I go into week 4.

Labyrinthitis Diary – Days 17 & 18

Tags

, , , , ,

Tuesday (Day 17)

7873466_f260Difficult night with a lot of burning and itching sensations inside ear. Lots of pain on side of head, along my jaw and even into my teeth! Awoke this morning to find the front of my ear next to my jaw (tragus area) swollen up. Feverish. Other ear also feeling sore. So I rang the Dr who has decided this might be bacterial after all and has given me a course of antibiotics. Typically I am allergic to the best one for this condition but at this point I’m grateful for anything. Now taking Amoxycillin 3 times a day.

No changes to the dizziness levels today either. I do have head and jaw pain. I am really hoping that these tablets finally knock this on the head.

In good news – the ringing in my ear finally stopped. I had to listen really hard to double check but it does seem to have gone away. Not sure if it’s temporary but it’s nice for as long as it lasts. It makes me feel a little more positive that I will eventually recover.

Wednesday (Day 18)

Back down in the doldrums today although I slept really well for the first time since all of this started, actually got up at a reasonable hour this morning and did not need a power nap to get through the day. The dizziness actually seems a little worse today which is a real downer and I did wake up with a lot of ear pain though it seemed to go off once I got up and walked around so perhaps the being horizontal in bed had delayed any drainage overnight. Outer ear remains swollen. I’ve also discovered that inner ear infections are painless, yet despite complaining of pain since the get-go I’ve repeatedly been told this is inner ear and a virus because of the dizziness aspect. Maybe I have a concomitant new infection, who knows?

On Day 2 of Amoxycillin.

The negativity is starting to really creep in no matter how positive I try to be.

I’ve reached the 18th day of an illness that I am constantly being told “should be better within 3 weeks” and I feel like recovery has just stopped and am starting to doubt that I will ever get better at this point. I am very down and tearful. I am amazed at how isolated and lonely I feel. I don’t live alone but obviously people have to get on with their own stuff so it feels like I never see or speak to anyone. I am only interacting with other adults via social media which is less than ideal. And a large part of me actually thinks other people are better off staying away from me as I am so boring (can’t really do anything so nothing to talk about) and miserable.

Still, tomorrow…as they say…is another day.

Labyrinthitis Diary – Days 15 & 16

Tags

, ,

Sunday (Day 15)

I was a lot less dizzy when I woke first thing, and it seems to be a lot better as long as I am stationary. That said, movement seems to be a lot more dizziness inducing today. I have managed to do some tidying up around the house but very little else. Having to stop more often today to regain my equilibrium because if I allow the spins to go on for too long I feel quite sick. I find this worrying regarding my return to work, but I do have to keep reminding myself that I am not due back until the 9th and hopefully improvement will be greater by then.

I seem to have completely got over the brain fog, but still very tired. My mouth ulcers have all but gone too, apart from a monstrous one about the size of a 5p piece which has taken residence on the inside of my top lip. Probably the most inconvenient location as it renders everything, even drinking, painful. I used to have a fantastic cream for ulcers called adcortyl which got withdrawn so I was happy to find kenacort gel online which is the same thing and that has made a vast difference for me.

I am going out for another drive tomorrow (as a passenger obviously!) to see how I cope with being in the car. I am hoping this at least will have improved enough to expand my horizons a little.

Monday (Day 16)

No real change today. I slept slightly better and got up late but I still feel really tired. Tried a trip out in the car again this morning – I managed about half a mile more this time but then we had to return as I felt so sick. Thankfully this passed after about 30 minutes of arriving home, and a cup of peppermint and nettle tea was nice and settling.

I am supposed to be performing at a wedding on Saturday – a huge affair, organised by the company of a friend. I have to be able to travel for an hour. The irony of it is that by Saturday I may be able to, but I can’t guarantee it. So, I either let her down now with a chance to find someone else, or wait and potentially let her down at the last minute.

headinhandsI feel bad about the whole situation – letting people down, how this impinges on others at work and at home. And of course, on the outside I look perfectly normal. My walking has improved within the house to the point where anyone watching wouldn’t even think that the world was, for me, wavy and wobbly. Sitting here, I feel fine. I want to do things. I want to go back to work and get on with life. Then I move and try to do anything and it simply is not happening.

It is endlessly frustrating. I hate this. So far I’ve spent a good few hours in tears today. Just want it to end.

Labyrinthitis Diary – Day 14

Tags

, , , ,

Day 14 (Saturday)

I had a massive rant last night – feeling so angry about the whole situation. Poor husband empathised. Then I shut up and we watched a movie…no point moaning I guess, as it does not change anything it just shares the misery around.

Still having a lot of sleep problems due to the anxiety brought on by fear of waking up with the world in a mad spin. I think I got into bed by about 2am and I managed the grand total of about 4 hours sleep. The stupid thing about this is that sleep is such a healing and restorative process so my stupid brain is actually hampering me. Grrr.

Anyway, that said, the world seems to be a little less wobbly today. It was noticeable when I awoke and although the world still feels like I am on a boat, the seas may be a little less choppy than they were and my vision seems more crisp. This has given me a bit more hope today.

motionsicknessThis hope was dashed later….husband took me out in the car, felt every movement even the suspension. Had to come home, having travelled less than a mile from home. This was very disheartening to say the least.

That said, after a good cry I pulled myself up by my bootstraps, grabbed my walking stick, and went along with my husband when he took the dog out. This was a lot easier today. I do have to stop briefly every so often just to regain more equilibrium but I did manage to go at least another 300 yards today and it made me feel less tired. Getting outside is good too because it stops me feeling so stir crazy. I cannot hold my husbands hand because I end up trying to compensate for my balance and accommodate his movements. I walk a nice respectful 3 steps behind so I have room for me, my wobbles, and my stick 😀

After this I had a power nap for just over an hour, had to catch up on that lost sleep!

I’ve had a few weird symptoms in my ear: it itches periodically not in the ear canal but it feels deep inside. It also feels like it is leaking, I can feel fluid moving and it feels like it is going into the ear canal but there is nothing there. The high pitched tinnitus has reduced to a hissing noise today, but I still have that feeling of fullness and dull pain. I can also hear my neck move which is very disconcerting. It sounds like I have grit in my neck! My ear has stopped cracking loudly though which is nice. My thoughts seem clearer today too.

A friend of mine had this a few years ago and she has been very reassuring about my recovery, but the thing everyone agrees on is that you have to be patient as it takes time. I have never been patient. This is going to be very hard. But I have to remind myself that I am completely free of any medication, and how much better I am since Day 1, and keep plodding onwards.