My Dizzy Unbalanced Nightmare.... Any Ideas???

Ears, nose and throat
1

Out of the blue nearly a year ago I was talking to a colleague at work and suddenly felt like I was going to fall over and had to grab part of the door frame to continue the conversation. It was a frightening experience and one that stayed with me on and off for quite a few months. I visited the doctors and they diagnosed With Vestbular Neuritis.I was given Stemitil to help with the dizziness and sent on my way. I continued every day with the same dizziness and found it almost impossible to hold a conversation with people as I felt I was unbalanced and was going to fall over. 

As son as I looked at a person and was talking to them directly it was a major issue. I had to be sitting down and even then it took all of my concerntration to stop myself from falling. Just sitting on a chair I felt like I was unbalanced and was constantly having to fight against it. It was becoming tiring just trying to get through the day. I went back to the doctors and they then said I had BPPV because of the way my eyes reacted to the doctor moving his finger. More medication for the more difficult moments but yet again it made no difference to how I felt. The dizziness and unbalanced feeling was now also now making inroads into my private life and going to Supermarkets was a complete nightmare and still are one year on. I havent stopped going to them but it really hasn't got any easier the feeling of falling or dizziness in the aisles is just awful. I can't go to a local museumn without the dizziness feeling taking over and ruining the day for myself and my wife. 

It seems now where ever I go there are issues,Hospitals,Supermarkets,Museums,Piers,shoppi ng centres,crematoriums,cinemas.etc etc etc I have the same feeling that Iam unbalanced,dizzy and feel like Iam going to fall. I have also now started to get some sort of myclonic jerks whilst sitting and awake but mostly these are when Iam tired. I also cannot watch some TV programmes because I feel like Iam experiencing everything I see.

I visited the doctor again Thursday and explained again my symptons and she decided I need to see a neurologist. She wasn't happy that I failed the romberg test by swaying to the right and she said I was struggling a little with walking straight with one foot in front of the other. I also was seeing double when she was moving her finger and Trying to focus.

Iam really hoping that the neurologist will be able to come up with some sort of diagnosis,the whole dizzy unbalanced feeling Iam getting is currently causing absolute havoc within in my life and the fatigue you get from just trying to get yourself through the day is only something that those who have had dizziness would fully understand.

2

hang in there for the Neurolgist, although you would be better seeing a Neuro,Otologist s they deal specifically with the Vestibular system.  Neurologists, from  my own experience, seem more interested in looking for stuff in he brain, but,they will,probably want an MRI, so,go,with the flow for now and if you don't get  a satisfactory answer from them ask to see the. N.otologist

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Many thanks Gillian for taking the time to comment and thank you for your informatio

4

Hi, just wanted you to know I know EXACTLY what your feeling.

I had a servere case of Relapsing polychondritis four years ago, it was not my first,my first time my ear blew up so much it was dark purple! the second time I woke up one morning to my nose looking like somthing from Lion King!

The time four years ago i woke up in the night to use the toilet and my head was spinning so much I couldnt find the bedroom door, I was really scared, i thought i was going to have a brain bleed.

Got the doctor out and he said i had a middle ear infection,WRONG!! two weeks later i couldnt walk without falling over,I could not make sence of what people were saying to me,and my speech was all jumbled up, but the worse thing was I couldnt hear anything in my right ear apart from a really loud high pitch ringing, scared was not the word for how I was feeling sad       10 days later I was diagnosed with RP.

The doctor i seen took me off ALL antisickness meds, and explained that I would need to re-teach the brain how to balance, the vestibular nerves had been severed by the RP & that was why I was now deaf in one ear.

It took a good year before i could get away with walking without looking like i was drunk, but I did it, You really do have to re-learn everything, Im like you ,i still find shop's and crowds hard to be in, and ive had to learn to lipread a bit,because if there is any noise i cant tune in to speech.

But im now four years on, i drive, and live pretty much the same as before, my children love it as they can get away with more by saying " I did tell you mum, you just didnt hear me".!

Im under a fantastic docter at GUY'S,  proffessor D'Cruz, he's an auto immune doctor, so if you can try to get sent to him, he found out i have four autoimmune dieseases, and really has helped.

I hope this give you a bit of hope,just knowing someone really does know how you feel might make a diffrence.

GOOD LUCK smile

 

5

Thank you Colette for your insight and advice,it is helpful,to know Iam not the only one struggling with all of this. Hopefully there will be some,light at the end of the tunnel. So off to work and hopefully a dizzy free shift. 

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totally agree, mine came out of the blue when i rolled over in bed one night nearly 2 years ago. I was initially diagnosed with BPPV, which recurred on occasions but has affected my overall balance.  I cannot walk in a straight line.  It affects every aspect of your life.  It is exhausting.

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Hi Adrian

I can relate to a lot of what you say.  About 20 years ago, I had my first spell of vertigo. This came on after an inner ear infection and, although it caused severe vomiting for a couple of days I recovered from the dizziness fairly quickly. 

Over the years I had similar attacks that lasted a few weeks.  Then, five years ago, I got out of bed one day and tried to switch the light on and found that I kept missing the switch.  I became alarmed and got back into bed.  I felt like the bed was spinning me around but, at that time, I didn't know how bad vertigo could get.  I was convinced that I was dying!  The symptoms just got worse each day until I collapsed and ended up being admitted to hospital.  

I had to give up work and couldn't go out on my own for three months.  Like with you, supermarket shopping was impossible.  I was told by my consultant that I could not drive and it was two years before I was able to.

I was referred to a neurologist but, although they found some unexplained scaring on the brain, they said it was not related to my vertigo or migraine.

It might seem to you that you will never get better but you can improve with the correct diagnosis and treatment/medication.  I was referred to a physio and given exercises to correct my balance.  Five years on, although I'm not cured I am back driving and have a good quality of life with the help of medication and chiropractic treatment.

By the way did you have any type of infection or cold before this attack?

All the best.

8

Thanks Anne yet again Iam not alone in dealing with this awful condition. It puts such a strain on relationships as well as my wife struggles to understand why I sometimes am not helping out in house as much as I used to either. It is just a general feeling of fatigue .

9

Thanks Veemae for,your story as well. It is good to see some positive results and outcomes as it can be quite easy to become very negative with it all. I had a better day today had a few moments where I could feel myself becoming unbalanced but it seemed a lot better. It is almost like it comes over in waves and stays for a number of weeks sometimes and then tailors off.  No I haven't had any type of infection at all before the latest batch of dizziness. 

10

I understand how difficult it must be for partners to remember we have a problem that can't be seen and sometimes have to remind my husband that i have vertigo  and that although i may look normal inside i'm all over the place inside and that it is always there everyday to a greater or lesser degree.

Just turning around to close the garden gate when i leave home in the morning for work leaves me in a spin. Must find another way to close the garden gate 

11

Anne it is a difficult time for everyone involved,may I suggest some string maybe for the gate I use it occasionally for pesky rose bushes when walking up friends garden paths :-)

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Good idea, thanks.   I  have noticed that in the morning when i leave for work i go out the front door then turn to to lock it, i then turn round to go out the front gate then turn to close it, by the time i get to my car i am already in a spin from these 2 turns alone becasue they are in quick succession.  Nearly got knocked down by  a cyclist one morning that i hadn't noticed coming along the cycle path outside my house because i was already feeling wonky and not really looking up but still looking down at my feet after closing the front gate and almost stepped out in front of the cyclist.  Good job people can avoid me cos' i tend to freeze until i feel more balanced.

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:-) I think I spend a lot of time looking down at the floor or just slow down and pause as well. I have just stopped at times in a supermarket just staring at carrots seems to help for a while before I attempt another walk towards the till always down the dog food Isle as it is less crowded. Anne Iam so surprised that you have so many symptons like myself I could almost write a book on it all as Iam sure you could as well. The museumn in Tring last Friday was the best one for me,walked in looked at about five displays of stuffed birds and then it just hit me I was going to fall and became unbalanced. I then made a move to another exhibtion and was ok until all of the school children came in and had to move again. Me and my wife went to the next floor and I then just couldn't move and froze on the spot. We made a swift exit after ten minutes I felt so embarrassed. Anne maybe you could get some dizzy armbands to help :-) 

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A quick update after my visit to the neurologist today. He thinks my condition may be caused by a,low grade migraine and has put me on 10mg of Amitriptyline before I go to bed at night. He has ordered a two part scan of the brain and vestibular system but he expects these to be normal. He spent a great deal of time noting my symptons but zeroed in on the occasional headache pain I get. My MRI is scheduled for this Saturday and results to follow. 

15

Good luck with the amitriptyline Adrian and I hope your MRI goes well.  I'm back on amitriptyline along with almotriptan.  It hasn't stopped my migraines but it helps me to sleep a bit better.  As every patient is different it may do the trick for you!

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Veemae appreciate your comments thank you. I didn't realise I was Suffering from migraine to be fair but Iam hoping the neurologist knows his stuff. At this point iam  willing to try anything. 

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Well had MRI today of brain and ears. Was not looking forward to it and the improvement  I have noted since being on Amitriptyline seemed to disappear today. The MRI was loud it was almost unbearable but got thorough it with gritted teeth. Came home rested up for a while and I have now got the worst vertigo and sickness feeling ever. Seems like I have gone back right to the start of it all again. Iam hoping these are just symptons of the MRI scan and will wear off very soon. 

18

Adrian,i had another MRI recently, and yes I do think it 'upsets' something in us as didn,t feel good afterwards for a few days either.  but I think that some of the movement stuff is so they can see how our brain reacts when that happens, so,hopefully it will show up,something.  also,some MRI,s are to rule things out, but my,last one I felt was more,looking at different things as they said  oh we are now doing the second view etc etc, as they went along.  I always take things easy if I can for those days afterwards, sleep a lot etc and nt too much aggravating movements that I know makes things worse. when I feel nausea I find anything with Campbor , or 

eucalyptus type smells really help me.  also flat coca  cola!!

19

Adrain, just read your comment on dizzy armbands, made me smile.  I don't know what age you are, I'm 58 this year.  I think another problem for me is the floor, if it's patterned or there's a glare coming off it from over head lighting then my balance problems seem to increase.  I seem to spend more time looking downwards than upwards, so i am making an effort to remember not to keep looking at m feet, but look further afield than just in front of me or at my feet.  I find when i'm driving i'm not so bothered but when i stand back on my feet, after turning to get out of the car the combination of both brings it all back on again. Little by little i am joining up the dots as to what helps and what doesn't.  I don't thin overhead bright lights help, patterned shiny tiles, supermarkets, looking upwards whist also raising my arms to an overhead cupboard, turning my head towards the right, going down stairs,  moving my eyes upwards and to the right, etc., etc., etc.,  basically any movement whatsoever  There's a part of me that has to laugh but that's probably just my warped sense of humour, for which i'm thankful as that gets me through it.

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sorry Adrain, meant Adrian, of course.