I have been dizzy every day on and off for two years, it started apparently being Labyrinthisis (however you spell it) and seems to never of disappeared I have been to the doctors one a week for two years as nothing is helping and no one seems to be taking me serious.
I went to the ENT clinic and the doctor said he thinks it is migraine Vertigo and to keep a food diary which I have been for two months and cut out caffeine and chocolate . Which I did I felt better for 5 days and the dizziness has come back as usual with the blurry vision and nausea. I am a anxious person and go to counselling but I am finding it difficult to cope with the constant dizziness! I am scared and get very worked up and anxious when I get dizzy I am constantly crying and my partner is finding it hard to understand as it is ruining mine and his life as we can’t enjoy ourselves!
It is also really affecting my work, if any one can give any helpful advice I would really appreciate as I don’t know how much longer I can put up with this.
Hi Gingersnaps, sorry you are suffering with this horrid dizziness. I know just how you feel having felt the same way for nearly 4 years. It sounds like you may have MAV and not labyrinthitis. Where are you based, in the UK?? People here can advise you which consultants may be best for you to see to get a proper diagnosis depending on where you live?
Could you give a little more info on your daily symptoms and how it all started? If it is MAV then you will probably need a migraine preventative medication. You will find loads of info on this forum. Any questions just ask…xx
Drs aren’t always that helpful, sadly to say. Have you had any testing done to rule out other conditions? Are they certain it was labs to begin with? Has any permanent damage been done to either ear? If so VRT can help. However docs can’t always be sure what causes the dizziness and like you, mine never went away either.
I’m glad you got a few days relief from the dizziness but it does tend to come back due to other sometimes unknown triggers… Stress isa biggy. Are you on any medication? If your ENT suspects it to be migraine then they should refer you to a neuro-otologist (balance specialist) or there are some drs specialised in treating migraineurs.
The effects of constant dizziness to us and those around us is devestating… Even though it may not feel like it, you’re reaching out for information in the right places, this board is packed with info and advice from fellow sufferers, some who have even recovered and revisit! It took me well over 2years to get a MAV diagnosis so I wasn’t even on the recovery road until last year… Well less than 6months ago for me. And unfortunately I had to stop working and my illness had a huge affect on the relationship I was in, i think all of us here can relate to this. Anyway, you’re going in the right direction by following the restricted diet.
What does your dizziness feel like? Spinning, rocking, general disequilibrium? Do you have it for the majority if the day or just when you’re particularly anxious?
Are you living in the UK?
Nice to meet you, even under the circumstances we’re both in.
Thank you both for your reply!
I live in the UK in Suffolk, No I have only had a couple of tests at the hospital from the ENT Clinic and they never tested it was Labyrinthisis (if they can test that) they just said that was it by looking in my ears and my symptoms. Also the ENT clinic just sent me back to my doctor, I have another appointment on the 14th and would like the tests and to be taken seriously but my doctors said take paracetamol which every day seems to be too much?
I get it at different points during the day but never in the morning it’s usually about mid day I seem to get dizzy or in the evening, my vision goes blurry and its more of a general disequilruim and nausea. Also if I stand up I feel unsteady like I have just come of a ride( very scary when walking alone or at work).
It’s getting more difficult to go to work due to this as its affecting it very bad and I just want go home to bed but I can’t afford to so I try to struggle through which is also getting on top of me.
I am soo happy to hear other people have been through and got over the same as me, makes me a little more positive!
Lots of us have had a really bad time and then gotten the right dx and rx and been a whole lot more normal thanks to the new regimen that fits our particular need.