Message for I Robertson - Inner Ear Disorders Message Board

littleone1972 · 10-05-2003, 11:33 AM

Hi Ilia
reading back on some of the postings I just wondered if you ever did go to the neurotologist in Glasgow or the one in London.
I have my testing on Tuesday, been up all night with vertigo and every time I close my eyes it feels like my eyes are constantly moving. Off the medication (although I didn't notice any improvement ) and dreading getting through another two nights. No position seems to help the dizzies! Anything that anyone else has found which helps??

Praying for a correct diagnosis on Tuesday so I can get this out of my head and stop feeling so unwell constantly...

This board has been my lifeline and you guys are GREAT!

willsmom · 10-05-2003, 05:56 PM

Hey littleone - you poor thing I can really sympahise its so hard to cope with. For sure it will subside mine did you will not be this dizzy all the time I promise.

I did not go to the guy in Glasgow cause he sopke to me on the phone and said it would be a wasted trip as its the after effects of Lab's!!Also spoke to Linda in London and she said that its very likely inner ear after Lab's - ahhhhhhhhhhhh - but going to go any how. She is planning to do the tests over a 4 day stretch - but I am so scared of flying in case it makes it all worse...........not sure how it could get much worse but any how.

I have been to the vrt in Aberdeen (is that were u are) in fact I am going on Wednesday - is it Simon u r seeing?? He is very very reassuring. I had a posturgraphy test (that is not how its spelt) but any how - that is meant to be an excellent test for establishing a vestibular problem.

My advice when You feel this bad is to stay as still as possible and avoid as far as possible head movements. Likely Simon will prescribe meds or recommend them as he told me to re-start them but I have not cause of feeding the baby. But I plan to wean him and start the stugeron again. Have you tried that? it was the most eefective thing that I have found.

Please let me know how you get on. Good Luck.

littleone1972 · 10-06-2003, 12:53 PM

Hey thanks for the post! Yes I'm going to see Simon tomorrow (Tuesday) so I'm hoping I'll get some light shed on this. I had another turn at work this morning, I could feel it coming on so went and got my friend who took me home. I lay on the floor for an hour (someone told me this worked well so I gave it a go and it did pass. I think my friend got a scare cos he said oh right now I can see why we haven't seen you in weeks

My partner lives in the US so I was due to make a flight at the end of this month, I really need and want to go but this thing really affects how you life your life. The thought of a 20 hour journey scares me right now so I think I'll hold fire until we see what I am dealing with. Thanks for the advice and words of encouragement. Yes I was on stugeron 3 X 75mg a day, it really helped at first but it doesn't seem to be having too big an impact right now (well before I stopped taking it Sunday) I'm kind of dreading tomorrow but I know i have to do this to get some kind of result... fingers crossed keep you posted.

willsmom · 10-06-2003, 03:54 PM

Hey littleone - this whole vestibular deal is so annoying - I know - I am sooooo interested in what simon says - he really is excellent - he wrote me a sheet out with his diagnsosis which is great to read and re-read in your moments of thinking its never going to end.

What are all your symptoms and how long have you been this way? I have the most horrid imbalance 24/7 do you?

I would deffinately query the long haul flight to be honest it caused extreme vertigo afterwards - just a thought. But the annoying thing well not annoying odd is that they try to say flying should not make it worse.

But I have to disagree through personnel experience - for sure you are going to have get right back on meds to reduce the impact. I got struck by vertigo while in America and had to fly home - gee I felt grotty afterwards I will not lie to you. Emsy sorta had a similar experince after a long haul flight after havin Lab's - not as much the vertigo but a bouncing feelin even when still. I guess it very much depends how well u cope with the symptoms.

Please let me know how u go -oh I go to see him Wednesday so we can share notes. Good Luck!! Thinkin of you!!

[This message has been edited by willsmom (edited 10-06-2003).]

littleone1972 · 10-07-2003, 07:00 AM

Well just back from seeing Simon, he is really nice and had all my tests done. I was very nervous but it all went ok. Turns out I passed all tests bar one the water one and it is looking like the balance in my right ear has gone which is causing me loads of problems. Because the mechanism is so close to my eyes any visual stimulation will make me very dizzy and bring on attacks! Glad to find out whats wrong but it looks like months of rehabilitation and I have to stay off the meds to try and get better! So dizzy dizzy sick times ahead. Doesn't help that I work with computers and am surrounded every day by differnt moving objects! He thinks the ear infection I had which went undiagnosed by the doctor caused this, so I am not happy at all with the doctors for effectively putting me through all this misery.So I guess will keep battling through and hopefully there will be light at the end of the tunnel. Let me know how you get on.