I have been extremely fed up recently. Not least of all because of the visual disturbance with this thing. When I was watching some college friends performing the other day they seemed to have a glow around them like people on a Ready-Brek advert! Also when in the room where I have my singing lesson – sometimes it’s like I can hardly see my teacher or the keyboard because the light feels so bright. I asked her whether she felt the light was bright and she said it wasn’t particularly comfortable but she could see alright.

Meh. I keep worrying that I won’t ever be able to get out and do anything apart from go up the road to work or 10 minutes away to college. Even they can be a big struggle. I feel as thought I am coping all the time. Not just living freely and happily. I felt like I was going mad a couple of weekends ago. It’s so awful to feel disconnected from the “real world”. Not seeing or feeling things how they should be seen and felt.
There’s the disorientation to deal with, the feeling very tired like being in a dream the resulting anxiety and feeling low and depersonilisation sometimes (perhaps due to the disorientation and over-tiredness?). I am so worried that I won’t be able to do what I want in life.

My dizziness has improved – the attacks are less frequent and less severe when they do occur. Also quicker “balance recovery” time. But the feeling down has gotten worse. Maybe I am just fed up of this particular instance of balance problems lasting over a year! I can’t understand why the dizziness has improved but I feel worse than ever emotionally. I guess the fact that my mother has got depression again doesn’t help – very worried about her :confused:
Also I don’t get to sleep very early. I really must try and alter my body-clock so I fall asleep before midnight. Being tired will NOT help I suppose! I have just started seeing a counsellor at college. Hope this helps!

I want to feel like a real person that can do anything and go anywhere they want without feeling odd or worrying about it

Feedback and support GRATEFULLY received!

Katkin x x x

Hang in there Katkin. It can be very discouraging. It is hard to cope with life in general when you are dealing with a handicap such as this. I have recently returned to college myself and have had to withdraw from all my classes but one because I just can't perform as well with this thing. I have to drive 45 min. to get to class on top of that and it has been extremely difficult and disheartening at times just to keep going. Sometimes your body just needs a break so please try and get adequate rest and take care of yourself. If you can take it one moment at a time it helps too. You are accomplishing much just struggling against this thing. Hope you are feeling better soon (and your mom too!) Regards, ASLme

I sympathise Katkin as I too am only young (I think you are younger - I'm just 25). I was almost 23 when I got this though.

I too worry that I wont be able to do what I want in life and I know only too well about what you mean about not living "freely". I have to think about doing everything, my life is on hold inc my career and everything. I am back with the parents after living away for 5 years - it isn't easy. I also know what you mean about the depression etc - mine has got worse with time and I've also have other stuff to deal with - with your mum being ill, this is only going to make your depression/anxiety worse.

You have a lot to cope with so do not be down on yourself. You have a right to feel this way. You are doing really well. I think you have had labs before havent you and keep getting it back? Going to see the neurotologist I mention could help so that you have professional support. I know this is what I need. I hope also you have a few good friends who help you through this. I have about 3 who have been rocks to be throughout all this - the others are still friends but they havent been there for me enough. But my 3 are enough to tell everything to - they make up for my 20 or so other good - but not so helpful friends.

Counselling is a good idea as is CBT - look up this - if you see LL you will also get to have CBT.

Kp smiling - we are all here for you and understand exactly what you are going through. Vestibular disorders are utterly horrendous to have - everyone with one deserves a medal - including you.

Have faith this will go. You are young and you have plenty more of life ahead of you. This is simply a glitch, where you will learn lessons and come out the other side, a wiser person.

Hugs xxx

Katkin

I could have just written some of that myself. I am so sorrrrrry, you have to deal with this it truly is hard, can't even beleive that it exists as part of our earthly experience. Have you tried an SSRI? I am seriously considering it. Just put a post up about it and Scottsman gave a good encouraging reply.
)
Remember to smile and remember that moment. Moment by moment and eventually it will get better!!!! That's what ppeople keep telling me and as low as I go and feel like I'll bever be normal again I need the hope.

Your dizziness is getting better and will improve!!!
Everyday in everyway I feel better and better. Mantra :0)
Jade :angel:

Hi Katkin.

I just wanted to ask what your diagnosis is. It's just when you say
'
they seemed to have a glow around them like people on a Ready-Brek advert!'

and also mention a problem with lights being too bright - these symptoms are very typical of a migraine aura. Also, it seems fron having a quick look at past posts that your attacks can be episodic, you feel better sometimes and much worse others, you are worse around your period and you feel pressure in your head - these things could also tie in with a migraine diagnosis. I know someone else who had the glow around people thing and she was diagnosed with migraine associated vertigo - has anyone suggested this to you. Did you ever get a referral to the neurotology department in London?

Although people do get visual symptoms with lab/VN, it's sometimes important to be specific as to what type of visual symptoms. Visual auraus (the glow) isn't typical of lab/VN, but you will find a lot of MAV and straightforward migraine sufferers who get this. Sometimes it's the little things which give the clues as to which condition you might have. If it is MAV, then a daily migraine preventative could really help you,

best,

hbep

Hello thank you very much for your lovely supportive replies.

ASLme: thank you for your advice. I will try and take it one moment at a time. I hope that you feel a lot better soon. Poor thing that you had to drop out of some classes, but like you said - sometimes you really just have to look after yourself and your health is the most important thing. I think you are brilliant to be able to drive 45 minutes to college - well done! I gave up driving on my own last year. I can drive with someone with me but obviously this can't be the case all the time so my car is at my Dad's at the moment.

CL: thanks for your encouraging words. It really helps when someone says "you have a right to feel this way". I will investigate the possibility of the neurotologist you mention - I am having a bit of trouble travelling at the moment tho, so this is what scares me about that. I think it takes about a couple of hours to get to London from here. I know it would be worth it in the end though. It's just that even the last few visits to the hospital that I go to for the ENT (and had been for Physio) is about an hour away and the last few times I went I felt really bad like I was in a dream and some of the time like I was remembering going there - rather then actually being there. It really, really upset me. The initial bit of the journey was very panicky too. It's odd though because I had been going regularly for physio and had been ok.

Hmm friends - well I have some nice close ones that seem to understand quite well.
I still think they must think I'm making a big fuss over nothing though. I try and get people to read some of this board as often as I can to try and make them understand a bit. I also have some other friends that I don't even bother to try and explain it to properly. My friends at work - well I try and tell them so they know when I can't go in it is for a really good reason. I still don't think they fully understand though because although I look very pale and tired a lot of the time I look fairly "normal". I don't want to push the issue because I don't want to sound like a hypocondriach.

I don't blame you for being back with your parents! If my Mum lived in a stable environment/closer to my college and work and was well I would love to stay with her for a bit. Or if my Dad's place was bigger and nearer college/work I would like to stay with him & his gf for a bit. As it is I live on my own. I do appreciate my own space but it can be really horrible when I am feeling lonely or down or the worst - disorientated. *shudders*.
I'm not quite sure what CBT is - sorry to be thick!
Aaw yes we all deserve a medal and a big hug :)!

Thank you for saying it's just a glitch I really hope it is! Thank you!

hbep: Well for ages the Dr's didn't really know what was wrong. Diagnoses ranged from Meniere's (though tthey decided this was unlikely as I am young and have no hearing loss), to possible Labyrinthitus. To a "possible problem with spatial awareness" and no explanation after that frightening sentence. To "perhaps more likely a brain to ear thing rather than an ear to brain thing" and no explanation after this even more frightening sentence - this was after the light following tests and I had been too scared to have water pumped into my ears as I knew I wouldn't be able to "control" the spinning by sitting up. Different Drs/ENTS have been saying different things.
The last couple of times however they have said it sounds like BBPV. Althought one of them had dismissed this before. A Dr did the Epley Manoevre on me and I felt something shift inside my ear and I think I did feel better afterwards. I don't think it lasted very long though. I have tried to do the manoevre at home and don't know if it did much.
No Doctor has ever mentioned that it might be migraine-related. Thank you for suggesting this. I would really like to find ways to make this better. I have always had a thing where things look "misty" when there are reflective surfaces about. It was a relief when I read on here that other balance-disorder people feel the same.

The thing that stops me thinking it's migraine-associated is the ear-fullness and burning I used to feel. I have symptoms that match loads of the possibilities eek! I don't think I used to get the visual disturbance with lights so badly until lately.
It's almost like I had Labs then BBPV and now MAV. Oh man!

Yes I think that I do feel worse and more "off -balance" around period time. PMT doesn't help the feeling down side of things!

Episodic attacks? Well.. For a few years I had it where I would wake up and the room would be spinning nastily about every 6 months and it would take me a few days/week or so to almost recover. I think the 1st attack was particularly unpleasant (awfully hot, panicky,unable to walk down hall or sit on toilet properly etc. v scary). Then I got it every 4 months.

Then, last year I was at a wedding and got my period and thought I was just feeling poorly becasue of that but suddenly in the meal (lots of visual stimulation I suppose - tables and tables of people) the table seemed to start to move away from me and I felt very odd, kind of pressureyand fizzy in my head. I thought I was just being stupid and anxious or something so I tried really hard to feel normal. My Mum was looking over at me saying "you're alright" obviously thinking I was just being "panicky".
I had to go outside with someone and calm down a bit. Then I came back in but the same thing happened again. It was really scary. So I spent a large portion of the wedding sitting still with an ice pack on my head. It was the hottest day of the year as well which I don't think helped! (I wanted to go home but couldn't leave as it wsa my step-sister's wedding). I didn't understand why my head had such a weird pressure in it and why it felt so odd - I didn't even relate it to those room spinning spells I'd had. Then when I went to the Dr's I mentioned the room spinning episodes as well and he suggested it was BBPV and prescribed Betahistine. (I had only ever mentioned them in passing b4 to my gp and she had said "Oh you probably had an ear infection or something that's gone now). That was the 1st I had known that it could be something to do with my inner-ear/balance system!

Sorry I am kind of deviating from the point - what I am trying to say is that after those spinning episodes every 6 then every 4 months I had this weird feeling at the wedding and now - for over a year I have had spinning attacks on and off and haven't recovered from it. I feel tired and muggy-headed almost all the time. I am a lot better (spinning-wise) since I came off the betahistine which I think made it worse. But it's almost like I had one thing and it developed into something else or got worse and then lasted over a year!

It's very confusing! This board is a real life-line. I would worry that I was cracking up if I didn't have the wonderful people on here to reassure me that they feel the same and it's "normal" for people with balance problems to feel like this. The thing that's really bothering me at the moment is the disorientation/depersonolisation/feeling wrong atmospheres.
I hope this improves soon! I am sick of feeling so down when I am naturally a very bouncy, silly, fun person.

Thank you so much for your help and advice, I am very grateful!
I better stop waffling now hehe!
Katkin x x x

Hi Katkin, sorry that you are feeling so down and it must be confusing when even your doctors have no real idea just what is wrong. I havent read al the other posts (short of time) bu have you had the full range of tests as these can distinguish between if its brain or ear that giving the problem. Then I guess once you have establsihed that you would be better able to know what to try to get better! I am quite young (30 years) and I got labs when I was 26, and like you wondered if my life was ever going to get back to normal. I wonder if some anti/dep would help take some of those low mood feelings away for you and help you cope a little better? Its a totally personal decision so I understand if you are not keen. I know that case studies have shown an improvement in people who take them. So it may be worth a shot. In the meantime, you are in my thoughts and I really hope that today is a better day for you! You are not alone. Ilia

Hi Katkin.

You said 'The thing that stops me thinking it's migraine-associated is the ear-fullness and burning I used to feel.' This definitely doesn't rule out MAV - if you have migraine associated vertigo then it affects the ears. Ear fullness and other ear symptoms are common. The fact that you keep having spinning attacks isn't very indicative of lav/VN. Generally this plateaus in to general dizziness and vertiginous sensations - the fact that you have this but also recurrent attacks of spinning vertigo would probably imply something else. I probably have MAV (these diagnosies are nearly always a probably) and you can almost time the worsening of symptoms to pre and during menstruation. I am much better now although still experiencing symptoms on and off - I have just started migraine medication. Funnily enough - although your description of feeling disconnected can, of course, be a symptom of anxiety, people with migraine can get this also. It's true this could be BBPV - and indeed it isn't unusual for people to experience more than one thing - BPPV can be set off by migraine.

The best bit of advice I can give you if these symptoms continue- you're in the UK, aren't you? is to get a referral to the National Hosp of Neurology and Neurosurgery in London. Ask for a referral to Rosalyn Davies. Obviously this could be inner ear, there is no way of knowing for sure, but if it is migraine related they will be in a position to give you the correct drugs and hopefully set you on the road to recovery.

best,

hbep

Katkin - CBT = Cognitive Behaviour Therapy.

I too know how horrible it is to be down when you are normally cheerful and happy. I feel like Ive lost myself to this.

You are not alone at all.

xxx