Great board and great place to find out you're not alone...
Having looked through posts Iíve found a lot of records with symptoms I have had for six weeks but now with all of themÖ thatís why Iíve decided to post here to see if anyone can shed some lightÖ
It all started six weeks agoÖ all of a sudden I had a mild headache at the back of my head and few hours later I started feeling dizzy, not violently but just dizzy and nauseous. Initially I thought it would go away but it didnít so in a couple of days I went to see a GP. GP said I had tension headache and gave me paramax. 4 days later Ė constant tinnitus (high pitch) in left ear appeared - another visit to GP. GP said I had a viral infection of the inner ear but it would go away and I was prescribed betahystine. I started getting panic attacks, became anxious, agitated and claustrophobic. At that point my condition started worrying me: a) never had any issues with health before (didnít visit a GP for 10 years) b) it prevented me from working and thus earning livelihood for a family.
My other symptoms were: crackling sound in left ear, sometimes I had sense of fullness in that ear as well, tightness and tingling on the left side of my face and burning sensation of the face.
A couple of days later I completely freaked out and called London Bridge Hospital to see if I could see a neurologist. Few days later I had an appointment where I was briefly checked, told that it seemed to be OK but sent ďjust in caseĒ to have an MRI of brain and audio meatus done. Nothing was found, I was told that the problem was probably labyrinthitis compounded with nervous exhaustion and it would go away. I calmed down a bit. At the same time my GP decided to refer me to an ENT consultant who also told me that there wasnít anything to worry about but still sent me to do hearing tests, tympanometry and calorics tests. The guy who did tests told me that results were OK (some difference between left & right sides but nothing abnormal) and that ENT would explain me everything (I see him next Tuesday).
Meanwhile tingling in my face became lighter but I now feel some very mild tingling (kind of needles) in my left arm and leg but all main other symptoms (light-headedness and tinnitus) are the same.
Iím getting worried again as I donít know whatís going on and what kind of problem I have.
I have a lot of the same symptoms you mentioned like the burning, tightness and tingling on the side of the face that also extends down the side of my neck. For me it's on the right side. I'm light headed and have tinnitus as well with pressure in the ear.
Been to many Drs. and was finally diagnosed with TMJ. I got a splint to wear at night and have been doing neck streches and trying to eliminate stress as much as possible.
Hope this helps and you find relief real soon.
Jill, thank you. I saw a neurologist yesterday and he said he thought it was a viral infection in my inner ear that made some damage and I was going through a compensation period which would take some time.
I know my ENT thinks differently but I'll see him in a week time.
Mine also started with dizziness, no spinning vertigo for me. Sounds like your problems could all be related to an inner ear virus.You have had all the tests done and nothing has shown which is normal for inner ear because it is very hard for this to be properly diagnosed as MRI cannot show anything and you can get normal results from caloric tests even though there is a problem.
The actual virus that affects the inner ear does not stay in your body for long, it is the compensation that takes time, some a lot slower than others.
Your anxiety is also a part of this illness as the inner ear controls your anxiety levels. With me, as I started to feel better, the anxiety faded away. That was Sept 05 and I have not had a problem with anxiety since then, though I still do have balance problems. The tingling in your face could be a symptom of your anxiety and I used to get a tingling feeling near my lips and in my arms every time I had an anxiety attack.
Try not to worry too much, try and stay calm and be positive. Your tests are all normal, so that is good.
You are very lucky in that you have only had this for 6 weeks and already have had so many tests conducted. How did you manage that in this country? It took me 4 months to see a consultant at the ENT, and even longer to get the VRT exercises, by which time I was much better anyway!.
I'm actually much calmer now than I was a couple of weeks ago but I still have some lows (but I have highs as well).
The reason why I managed to get appointments/scans done so quickly was that I went private (I have an insurance that covers 80%).
I've been living in the UK for six years (I'm originally from Russia) but I still haven't figured out how the health system works here (probably because I hadn't really used it until this balance problem happened).
So as soon as I realised that I couldn't expect too much help from a GP (I don't even have a single person to go to, we have a medical centre so every time you see a different person) I decided to take control in my hands. I called several hospitals in London (where I work), explained the situation and asked if they could help me. Not all hospitals could make an appointment without a referral letter, but luckily London Bridge Hospital was OK with this. So I made an appointment and had a consultation and scan done (despite being horrified by its cost) within 3 days. Only 3 weeks later my GP referred me to an ENT consultant but again I asked to refer me to a private one as there was about 10 weeks waiting time on NHS. Then the ENT consultant referred me to have hearing and balance tests done (I did them privately as well).
The problem I have now is to how to coordinate consultants so they could exchange information and tests results. At the moment I do everything myself but I think there should be someone (GP?) who should take care of it.
Another thing Iím slightly worried is that a while ago I booked a holiday so Iíll have to fly in the beginning of January. I have no idea how Iím going to feel in a couple of months time. Is flying on a plane going to affect the problem? I donít know, but I donít want to cancel my trip.
Yes, the NHS in this country is in a bad way at the moment. Up in the north east where I live the waiting list is 14 weeks to get to the ENT. There are waiting lists for every illness.
Have all your tests, private and NHS been done at the same place, because if they have your notes will have all been kept together, in one file, as the file is just passed from department to department.
If they have been done in different places, maybe you could ask that any results be forwarded to your G.P. at the medical centre. I have lots of G.P.s at my medical centre but you are usually assigned one doctor when you enrol with the practice even though you do not necessarily see him/her.
Hospitals usually send results to GPs automatically, so maybe it has already been done.
As for flying, I was told by my consultant that I should never ever go on a boat,and that flying was a bit 'iffy'. In other words some people with this inner ear damage are fine with it and others are not. I know of lots of people on this board saying they have been ok.
14 weeks? Thatís really bad. Canít even imagine waiting for 14 weeks without knowing whatís going on.
Yes, it wouldíve been nice to have everything done in one place but at that time I just wanted to be seen by a consultant. My neurologist is quite good and he sends reports after every visit to my GP and copies them to me.
Iíve decided to go on holidays so Iíll have to fly in the beginning of January. Canít say Iím looking forward to it but I hope Iíll be better by then.
Another thing that slightly worries me is the strange feeling I have in left arm (particularly little finger) and leg (the same side where my tinnitus, ear crackling and ear fullness are) : sometimes it is a bit of tingling, sometimes it feels as if it goes numb (but I still can feel it), sometimes I feel as if my blood start to boil there and when I walk my left leg feels as if it is a bit woolly and I walk on something soft. Canít make a connection between an inner ear and an arm.
I also have to say that every day I feel slightly different - only tinnitus and dizziness stay, all other symptoms come and go and I havenít been able to find any logic in it so far.
Hi Alex, I don't think there is any logic at all to inner ear problems, one day I can get unexplained symptoms like you mention, the next day they are gone? A mystery, by the time I've made an appointment at the GP's to check them out they are no longer there and I feel a bit silly trying to explain something that I had but has now gone!! (does that make sense).
I had fears last year (December) about fyling and the Consultant I saw reasured me that I would survive the flight. . lol, I felt so ill at the time I nearly didn't go anyway, but I took nytol before I boarded and slept most of the 12 hours, arrived to the most beautiful sunny weather only a little "off" and came home from the trip feeling 98%, the best I'd felt for 3 months. I'm approaching that time again, a flight in 6 weeks 2 days (not that i'm counting) and I'm not too worried about it.
Think positive, don't let it stop you from taking that flight or doing anything else you want for that matter. I find mind over matter and positive thinking keeps me sort of sane and helps to cope with these horrible symptoms!
Hope you feel good soon and have a wonderful trip.
Jayne, thank you! It sounds really reassuring. I've already made my mind up and decided to go. It would be a pity, especially for kids, to miss some sunshine in the middle of winter.
Yes, I know what you're saying about symptoms. Last Tuesday I told a doctor that my fullness in the ear had gone, which he duly reflected in his report, only for the fullness to reappear on Wednesday.
Iíve also tried to think positively but had a minor setback today as I started to read the MS related board (had a bit of a free time) and now regret it as I subconsciously draw some parallels.
As Jerome K. Jerome put it ďÖIt is a most extraordinary thing, but I never read a patent medicine advertisement without being impelled to the conclusion that I am suffering from the particular disease therein dealt with in its most virulent formÖĒ.
Just trying to be cheerful.
Hi Alex, strange how we always look for the worse thing we could be suffering with, we have all been there, have you had blood tests done? I think I've probably convinced myself I have 90% of all the conditions going in the world at some stage or other, but the docs and consultants keep saying nope it's your ears, ET, Vestibular etc. So I can only go along with what they say and do my best to cope with it!
The holiday will do you good and time away to forget everything will be a perfect short term remedy (hopefully it will last and become a full term one) I do find that stress brings on loads of symptoms, and the more we think we have wrong with us the more stressed we get and the more symptoms, just one big circle of confusion causing more stress.
I'm heading for the most stressful time of my year, the busiest at work, Christmas, and a holiday all in December. . .aaarrggghh. It will all be worth it though when I'm lying in the sun with my cocktail and soppy novel whilst everyone else is chasing round the shops last minute.
You are doing the right thing in going, family time is quality time and you will have a great break!
I went to see an ENT surgeon this morning. My test results came back (I had hearing test, calorics, tympanometry, pendulum) and all of them were OK. He told me he honestly didnít know what the problem was and he hoped everything eventually would go away. He also said that the neurologistís dx (viral infection of the inner ear) was pure speculation. Canít say this visit was reassuring. I may be going back to the neurologist sooner than I was going to. I donít know if there are other tests available to nail down where the problem is.
Don't worry so many of us have had the same tests and the same results, so frustrating for you, but rest assured that it is probably your ears, so unbelievable are the symptoms, I was told 12 months ago when I was at my worst that they can all be caused by a bad case of labrynthitis, which can recur, so try to stay positive, anxiety is another BIG symptom which if you are not careful will become the main one!!
Keep thinking positive and keep busy.
P.S. Just realised you're in MK, know it well, my parents live not far from you Woburn way, always get lost there though all those islands look the same to me!
Jayne, yes I know, I was told about anxiety as well, but sometimes it is difficult to keep it at bay. Iíll try to keep thinking about positive things (still plenty of them) but I canít control it all the time. Iím trying to keep myself busy (or at least I used to do it) but, again, from time to tome my concentration drifts and I start thinking about the situation.
We go to Woburn quite often. We like the Abbey, we regular go to the Safari park and our daughters sponsor a tiger there, and every September and October we go to pick mushrooms near the golf course.
I know how you feel, I have awful backache this morning and all seems to be getting on top of me again, some days I cry all day then the next I'm fine. The positive thinking and the anxiety are enemies in my head at the moment, oh well, 6 weeks today and I'll be boarding that plane to paradise. . . ROLL ON!!
I love the abbey this time of year with the leaves all different colours, may take a trip down there soon just to check it out. You have probably bumped into my Dad on the golf course, Mom reckons he spends more time there than at home, they are in Aspley Guise.. . . very nice!
Jayne, I'm going to board a plane in 7.5 weeks but I'm still not looking forward to it. I'd like to get a bit better and have a bit less anxiety. I think I've driven my wife mad with all that has been going on but she is great and she's been really supportive.