Should I be worried?!

Ears, nose and throat
1

Hi! I apologise in advance for the length of this!!

I'm 23 years old and have been suffering with horrible and constant dizziness for around 8 weeks now!

 It started off being minor, and I went to the doctor complaining of really uncomfortable stomach aches and bloating, which after a few days was followed with slight dizziness. They said the stomach complaints were probably viral and it would all go! Working with young children none of it came as any surprise. A lot of people say it starts off with a cold ect so to me stomach ache seems odd to develop into this!?

I was then told after 2 weeks of dizziness back at the doctor that I has labrynthitis. I was given stematil (sorry for spelling) which did absolutely nothing and I tried to get on with life. 

My symptoms were (and still are) now constant dizziness, a very heavy and uncomfortable head, sore neck, really bad focus on my eyes (I'm short sighted anyway, but I feel like Its much worse now!), occasional nausea and most of all, I feel absolutely exhausted. It has made me struggle at work just to get through the day, even after SO much sleep. I have always been relatively healthy, eating well and being a good runner. But since my dizziness, I know I couldn't face a run! 

3 weeks later I was back at the Dr, who said maybe I don't have labrynthitis and gave me different tablets (betahistine) as I was about to go on holiday and needed to try something different! For a few days on holiday my symptoms for the first time ever seemed to go (I don't believe this was due to tablets as I was not good at remembering to take them!) however towards the end of the holiday they were back again sad

 The Dr said if there was still no luck, to come back. 

Next appointment is booked for Monday, and I'm  going to push for a referral to an ENT clinic.

I'm just slightly worried because I feel like I don't have the panic attacks and other symptoms that people seem to be commonly experiencing and also none of the tablets have done anything..! I think more than anything I am looking for some reassurance that my symptoms are normal!  sad

2

Forgot to say I did have a blood test when I was given the stematil - which all came back clear.

3

Hi Hun! 

Your symptoms are completely normal! I've had this for nearly 18 weeks and at your stage I was exactly the same. Constantly dizzy/woozy, eyes and ears sensitive and extremely sore. It will get better. None of the meds worked for me either, I'm on betahistine but don't think that's doing much either! 

I'm better than I was but having a really bad day today and very dizzy. My advice would be keep well hydrated, eat regularly avoid caffeine and alcohol and get plenty of rest. There's a fab group on Facebook called labyrinthitis support (there are two go for the one with the most members) I've found it to be invaluable knowing I wasn't alone. 

Don't panic you aren't the only one feeling this way xx

4

That's just what I needed to hear! Thank you smile 

Have you had any of the scans or been to ENT?

I saw people saying about MRI scans which is very scary! I was just praying it would go away before I had to think about any of that..

My ears haven't been sore at all either which seems weird to me, but my head just feels like it weighs a ton and my eyes are constantly heavy. 

5

First off don't be scared. I have been spaced out for 3 yrs, yeah 3 yrs and I'm still alive, lol. Get your blood test checked and have them test your Vitamin D and B12. When they are low it can really mess you up. Also consider TMJ as a problem, which is a issue with your jaw. If you grind your teeth at night or clinch them then that could be your problem. It could also be an inner ear issue as well but check the simple things first. I have TMJ and I have been going to get acupuncture and I think it might be helping. I am also going to a psychologist who does bio feedback and hypnotism which has been interesting as well. Hope you feel better.

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Hi Amanda1991,

Firstly, you're symptoms sound perfectly "normal" and also very unpleasant.

Firstly, everyone with Labyrinthitis is different. It is quite normal to experience panic attacks as it directly affects the nervous system but perhaps you just handle it well. 

In terms of the stomach problem, I too experienced a lot of gastro symptoms 2 weeks prior to my diagnosis. Initially, I wouldn't have paired the two together but looking back, I can see now it could have well been part of the same strain of viral infection that predominantly lead to Labs. But, hey, some people say that had absolutely no symptoms prior to Labs, instead just woke up 1 day dizzy. It's a funny illness!

Just treat your stomach issues like any other stomach upset - eat well, stay hydrated and take over the counter medicines or herbal supplements, whatever you feel helps.

In terms of the Labyrthinitis, I am afraid it will go with time. If it makes you feel better, see your ENT who will at least be able to confirm your diagnosis and advise you of the best possible treatment.

I am at the 3 month mark and mostly feel ok, but  I still regularly feel EXHAUSTED. That usually goes hand-in-hand with that heavy headed feeling or some form of tension in the head. Aside from occasional blips of lightheadedness, I feel relatively ok. I'm most definitely still healing, though.

Strangely, I can't take to alcohol like I used to. One sip and I'm feeling it - no exaggeration. I don't seem to be able to allow myself to get too hungry without feeling very lightheaded and weak either. I do feel Labyrinthitis has left its mark, that's for sure!

Positively, though, I have started yoga. I find that relaxing (but I'm a very anxious person anyway) and it helps with my overall balance. 

Best advice I can give you based on my experience: 

1. Try to lay off the medication. You've said it hasn't helped. It also prolongs recovery as your brain needs to retrain the mismatched signals from your affected ear. Medicines hinder it's ability to do that.

2. Stay active. It's so tempting to crawl up in bed, or stay within the comfort of your own home, but even a short walk can help you to recover quickly. 

3. VRT (Vestibular Rehabilitation Therapy) - a set of exercises specifically targetted to train your brain to ignore mismatched signals from your ear causing any imbalance. Again, this advocates the argument re exercising. Keeping active helps!

4. Patience. Probably the hardest. You wind up sitting there 100% believing "I am going to be like this forever" but you won't. It's a bloody miserable illness but your body is an amazing machine and it will recover. You do just have to wait it out.

As you seem to be coping well with it, particularly in terms of the panic (or lack of!), just persevere. Also be prepared that you MAY be predisposed to ear problems and the dizziness now that you've had Labyrinthitis although this isn't always the case, so don't be alarmed. Also take comfort that you only NEED 1 ear, your body just functions better with two. It's the reason we double up on most organs!

I hope this provided you with some comfort. Hang in there. You aren't alone!

Ashley x

7

I've been referred to ENT but delightfully I love in Wales and won't be seen until at least January! I've paid to see a private neuro physio and am doing VRT exercises to try to help. 

The recovery from this doesn't seem to be at all linear, I think I'm getting there, then feel awful again. It's so frustrating. It's comforting to know there are others who know how you feel tho! The fatigue for me is really bad, I've had to defer a year of university and give up my job for now. I'm also a single mum to 4 children so it's hard going at times. 

No one can say how long it will take to get better, but you will get better and the bad days get less and less xxx

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I'm at 7 weeks and I've tried and did not get on with Stemetil (made me feel even dizzier) I'm now on Cinnarizine which don't make me feel off my head....did your GP test your eyes with a pen or a light and have you follow it to look for Nystagmus...apparently that points to Labyrinthitis. I had to push at 5weeks for an ENT referral but won't get seen till September. My GP is convinced it'll have gone and I won't need the appointment but so many people seem to have had it for much longer and if scares me to think this could go on for a while. I too am supposed to go on holiday, long haul flight...did you fly? How were your ears after?

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Amanda you do need to get an ENT appt if this persists so they can do some investigations. I'm in my 50's and been dizzy with balance problems past 10 months nows. I went to bed one night fine and woke up with this the following morning.  That was last september. I am actually feeling better past 2 weeks, and over past 10 months have fluctuated between severe dizziness and balance problems at one point to now feeling they are easing off and quite mild in comparison to a few weeks ago, but i do know now how unpredictable this condition can be so hoping i can sustain the improvement.

I also tried stemetil and betahistamine with no effect. I was then referred to ENT for an MRI and further tests on my hearing etc., Monday this week i also had a balance test done with electrodes to measure my eye movements.

Likewise my vision is affected and becomes blurred with difficulty focusing my eyes and the consultant recommended i start the MAV diet (Migraine associated vertigo). I don't get any headaches but i think he thought this vision problem was similar to a migraine and i was also on occasions  getting a thumping/pounding dull ache feeling in my ears.

I have also been diagnosed with BPPV  in my left ear which was the start of all this when i rolled over in bed the night and everything started spinning inside my head. I woke one morning and fell on the floor due to dizziness and took an hour or more to find my balance. I had 4 weeks off work when my balance problems were too severe for me to drive safely.

I now realise that when i'm  tired, stressed or anxious about anything then it makes it worse. I don't think stress is the cause but for myself it can make the symptoms worse so i try to do things more slowly than i use to.

I hope you feel better soon but i also met another person today who also told me they are suffering from vertigo past 3 months following gastroenteritis, so maybe you have both had a virus that triggered the problem.

For myself there is no trigger that i can relate the start of this problem.

I know that like most people with it we are clutching at straws trying to find a cause.  I thought mine might have been physiotherapy to my back that i had a week prior to the onset as i have problems with my neck, stiffness, and lower back.  Now the dizziness is easing off and my balance improving i am thinking that maybe it has been the change in my diet, giving up smoking and more recently becoming vegetarian that has helped most in feeling better just lately.

I liken this condition to a computer and feel something has gone wonky on my hard drive and i need to be reset. I am hoping that by making some lifestyle change i can help reset whatever it is that broke and if not at least adapt as best i can.  I now do things more slowly and pace myself so that i don't overdo it.

Wishing you a speedy recovery.

Best wishes

Anne.

10

Hi Amanda, from what you’ve said it suggests you could have a vestibular issue so yes I would really push for a referral to ENT.

Typically if you have ringing in the ears, then you have Labyrinthitis and if you don’t then they call it Vestibular Neuronitis. Ironically in your post you say your doctor perhaps doesn’t think you have Labyrinthitis and yet he’s prescribed you with Betahistamine, which what is dished out to people with vestibular problems. I am surprised he diagnosed you at all, that’s the job of the ENT, so get yourself referred.

At ENT they’ll run some tests, give you a formal diagnosis and probably send you to a physiotherapist for VRT exercises to your brain to ignore the faulty signals that is making you dizzy.

Your shortsighted, just like me, and the reason you are now having increased difficulty with your eyes is because you’ve increased their workload to help you keep balanced.

Tiredness, exhaustion, fatigue is all path for the course I’m afraid (despite a good nights sleep).

You mentioned you felt better when you were on holiday!! Stress and anxiety can definitely aggravate symptoms. - Are you a worrier? Do people irritate you? Is your job stressful? These things don’t help.

Anyhow you’ve got youth on your side, Labyrinthitis (or Vestibular Neurontis) won’t kill you. You're just going to feel vile for a while until you fully compensate. They say recovery time on average is about 6 months. (But could be much longer I’m afraid)

11

Hiya Darren How you doing?ive not been on this thread for a bit  have wondered how you were going and few others.Did you go visit your brother? Gill and I keep in contact via EMail,I'm looking into Thyroid as didn't know you get tinnitus / balance with that.Now'ts changed in my corner  still the same.never wants to give up,and go back to normal.

    You still managing to work,how did your old glasses work out,still wearing them ,and how's the driving ? Lot more coming out with this balance / giddy since I was last on site new names added.  Let's know how things are with you know.Mar 

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My gp did do the tests on my eyes and said I wasn't showing the common signs and was able to follow her finger well etc. this was what made her think I didn't have labrynthitis at all!

I only travelled to turkey from gatwick and it was fine. Although to be honest my ears have given me no ache or pain throughout this whole thing, unlike most other people! So this is probably why I was able to fly without a problem.

13

I completely know what you mean about the alcohol! At 23 my friends are often going out, and one small drink can make my vision horrendous and make me feel like I've had a bottle. I know it's not good but on occasions I've "drank through it" and after a few glasses of wine you stop feeling quite so dizzy and feel more happily tipsy! I feel like stopping drinking all together would just be letting it win, although I do only drink on occasions, maybe twice a month. 

Thank you for what you said about the tablets, I have since stopped taking them! 

Yesterday was a good day, managing to work from 8.30am until late without feeling too bad, however I did then sleep for around 11 hours!

14

My gp has said to not let it stop me going on holiday.....I too haven't had any pain or seemingly any other ear type symptoms....usually get pain from pressure upon landing so perhaps I'll be ok aswell....

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Yes it definitely feels like I can't remember not having it and I can't see a time where I'm going to be able to go for a run and not feel completely awful after!

What you said makes sense about it being a vestibular issue - something I need to research as I know nothing about it. Labrynthitis never quite added up as I really have had no problems with my ears. They haven't hurt or been very sensitive and I manged to fly e

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Sorry I managed to send that before I was ready! 

I flew without any problems to the ears etc. 

the GP also did tests where I followed her pen and she looked at how my eyes were reacting, saying that I did this without any problems so she didn't think it could be labrynthitis! 

Who knows - hopefully soon I will have some answers! 

17

Call me sceptical but your GP has been briefed not to send every Tom, Dick & Harry to a specialist in the same way your doctor's receptionist are briefed to vet the reason for your doctors appointment. It call costs Money and the ENT is at the top of the pay scale !! If you are still feeling dizzy after 8 weeks then insist you are refered to ENT. Unless you tell me otherwise, your GP is not a specialist in Vestibular disorders. Of course you can follow her finger, there is nothing wrong with your eyes is there? (apart from being shortsighted)..lol

My guess is that you'll be diagnosed with Vestibular Neuronitis becuase you don't get the usual aches and pains or ringing assosiated with Labrynthitis and you exhibit the same symtoms as me.

I wouldn't expect flying to affect you because you are in a pressurised cabin travelling at 550mph at 36,000 feet. When you look out of the window towards the ground, everything seems to move at a snails pace. If you were travelling at this speed at ground level, then I think you'd know it !! :-)

 

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Hello Marlene

I am fine, pretty much the same, but fine haha, Yes I did see my brother and his family in Malta and we had a lovely time and I totally relaxed. To be honest I started to feel better in myself. For one week I left my old life at home and I reckon that if I stayed there for a few months that could be the medication I need,

Yeah I am still wearing my old glasses, they seem to calm/ soothe my eyes. Driving is OK, if I just potter around. My wife will do the motorway driving these days which suits me.

Theres just 2 things I'd like to fix and it's these.

1) Standing a queues, without swaying

2) Being able to walk around a supermarket or PC World or B&Q without feeling peculier.

That's me.....How are you Marlene?

19

"I've "drank through it" and after a few glasses of wine you stop feeling quite so dizzy and feel more happily tipsy!"

That is such an interesting statement and one I totally agree with and also applies to me which leads me to question if I am so unrelaxed, on edge and stressed, is it these things that exasbertate the dizziness?

 

20

Really glad your holiday gave you some respite from it,yea that B.....y standing is the pits to put up with,where at one time I used a shops basket I always use a small trolley,so were still both the same,I'm in and out of my local supermarket,stick to same one know where every thing is,pits if they change anything in the isles,that really throws me,damn annoying hey,to us that is.My ears are high hissing today ,my balance off the wall,same happens when they go low. When hissing centred feel lot better,then I can ignore ear noise,to some degree.Right Royal Pain all round.

    Glad the specks still helping,stick to them gives you calming ,so got to be good .

 You may have hit on your Malta trip doing you good,weather much better out there .wondered how if any that flight may have affected you,so that turned out fine glad of that for you .nice to see family,bet had some well into the night chats.Just what the dr ordered . I've not been to dr since back in Feb,but will go ask now for my thyroid to again be looked at for a 2 nd time.

  What's the answer? I've not a clue.Good job your Mrs drives long distance,you then can at least sit and close your eyes ,do you still get that passing of cars going ?im like you ,only still small short travel in car,but I'm okay car wise,just the anxiety creeps up with the fullness in ears .

 Lovely to chat  you take good care