Hi all, just wondering if anyone on here is experiencing the same as me?
Just over a year ago I experienced my first episode of vertigo and nystagmus.
I was off work for almost a month feeling just awful. The vertigo has always been
There since then but manageable. Inearly July I ended up in hospital
Because I was really bad again. I have not been able to work since. My balance is terrible.
I am not so much dizzy as off balance and can't walk very far. I had a balance today and
Have been informed I have lost the balance is my left ear. No firm diagnosis
Given though. My problem is mainly my balance and coordination. I struggle
With the most menial of tasks every day. Anyone out ytjhere in the same boat? I have just
Applied for PIP as a friend recommended I should. No idea if I can get this help or not.though.
Would welcome any advice and interested to hear your experiences
Dear Dawn,
I'm so sorry to read that you're suffering with vertigo an loss of balance. Yes, those have been two headliner symptoms of my 14 months with Meniere's.
Vestibular retraining and balance therapy (with a physical therapist) really helped me with my balance issues, but it wasn't a "cure". It helped me to deal with episodes more effectively, and taught me strategies to help me be more stable on my feet. Inner ear injections with steroids were the thing that finally helped me the most. Not that I don't have an occasional stumbly episode, but it happens 99% less often than it used to.
I wish you the very best of luck! I'm sure that other members of the forum will be able to offer you their experiences as well. They're a very helpful bunch of people! :-)
Take good care,
J
Hi,
My balance has been way off for some time at least a couple of months it is to the extent now to where I cannot stand or walk on my own.
Mine started with bad dizziness and nausea, ringing and pressure in the left ear and sweating.
This added to my anxiety of course but I have since gotten the dizziness managed pretty well also the nausea. Ithe the dang balance and tinnitus that are driving me crazy oh and also headaches often.
But I have no diagnosis as of yet GP sent me to neurologist who ran some tests CT Scan, blood work, EEG still waiting to hear something.
Next Step GP is sending me to ENT because we both are thinking maybe this is Meniers Disease.
But it seems to take forever to get answers!!!
I call everyday because I want answers as to why I am feeling the way I feel and what can be done about it.
So I wish I could give you answers but unfortunately I'm in the same boat. 
My friend had vestibular nerve cut on bad side the other side learns to balance I've also heard of injections in the ear they rather do as it's less risky you can google both hope something helps
Hi TMJ, thank you for your response. Having probs typoing in these boxes so please excuse if all over the place.
Good that you have managed to reduce your symptoms but those injections sound unpleasant.
I have not been able to work four two months due to this and it's getting me down a bit now. Work is getting tetchy too. It's the waiting for appointments that is holding me back now. I take my meds but they only ease it a little.
I so empathise Sukey. I was sent to ENT first had MRI (clear) had balance test yesterday but goit to wait to go back to ENT to find out more and what's next. Have appt scheduled with Neurology but not till November. I can't work like this and can barely walk 100m without feeling exhausted. Use a walking stick or walker which helps prevent falls but it's all so exhausting. Are you able to go to work Sukey if so how do you manage it?
Hi, I know everyone is different , I was diagnosed about 15 months ago with MD. the first few months were horrendous and although I knew it wasn't terminal I didn't know how I could live with it. Part of it was panic when everything spun, I try to keep that down now & just sit / stand & focus on something in the distance. Steroid injections have helped a lot.& 16mg Betahistine x 3, 2 x Paracetemol & 10mg Amitripyline made the world of a difference.
I asked about a destructive injection & you lose the hearing and can get tinnitus...
Dawn,
No I've been unable to work since JULY 21st
this year, I do use a walker and I have a cane as well (walker much better for support of course).
I know it's never ending withe Drs I'm waiting for ENT appt and my next appt with Neurologist is October 13th for CT Scan and EEG results.
It's just all taking so long and I want answers.
At least my medicine ( meclezine & Valium)
Do help with the dizziness. But it doesn't help with my balance and the fullness and tinnitus.
I'm sorry I tend to just go on I get so frustrated.
So no work I actually had to do to medical resign from my position.
I have applied for disibility because I have Grand Mal seizures as well.
So no driving, barley walking without my walker. And Anxiety has risen sky high since all this has totally changed my life completely so therefore I'm on klonipin to help with that.
I pray for all of us !!!
Pleas tell me more about yourself since I have now almost told you my life history lol.
Talk soon,
Sue
No not the destructive one. Let me look up the research and get back to you it's the steroid into eardrum they do lower doses three times instead of one big one
Cutting the vestibular nerve keeps the hearing the way it is but eliminates the balance from that ear but the smaller injections do the same without the surgery or essentially the same let me see if I can find a link and forward to you
Hi Sukey421
I share your frustration. I too have resorted to a walking stick and more recently a wheeled tripod walker that my daughter spotted in a charity shop for me. It does help prevent my falling and means I can move around a little better but it is so exhausting trying to keep upright isn't it?
I am hoping to see an ENT consultant sooner, rather than later, to see what the results of my balance test show him.
I have now received notification from my work that if I am unable to return to work late September/October with adjustments they 'may' be able to make for me my job is at risk. I do not need that pressure put on my the way I am feeling at the moment. I live alone and now panicking about how I am going to deal with that if it happens.
I have applied for PIP (as avised by a friend who has vertigo), not sure if I will be awarded it or not but worth a try.
My problem started in July 2015, I just woke up one morning with uncontrollable eye movement, felt very sick and couldn't lift my head off the pillow for ages. When I did manage to get up I was all over the place and was like this for the whole weekend before I could get to see my GP who diagnosed BPPV. I recovered after a few weeks but was never myself again. I felt off balance most days and had episodes of gizziness. In July this year it returned with a vengeance and I am not now convinced it is BPPV, especially since now been told of loss of balance in left ear but 'hey' I could be wrong.
I have spent the last 9 weeks trying to walk a straight line, feeling totally confused in my head 'fuzzy' (may be medication) and generally fed up.I can cook myself a meal but have to usemy combi oven to do this as using the main oven is just to dangerous for me because of bending down.
I have a little dog (5 year old maltese) that I may have to rehome because I am unable to walk her regularly and certainly can't afford to pay anyone to do it for me.
In general I am struggling not to become depressed - very hard when so frustrated by not know what this problem actually is or if it can be cured.
So sorry you have GM's that can't be pleasant with everything else that is going on for you.
Keep in touch Sukey421
Dawn,
They diagnosed me in 2011 with BPPV after I spent 8 days in the hospital with major Virtigo everything was spinning so fast I couldn't open my eyes look at my phone or Arab I was vomiting it was awful miss 35 days of work.
Then when it subsided I still had slight spells for a year after had to keep medicine on hand.
But this is not BPPV this is totally different symptoms and all.
I feel so bad for you living alone and trying to do this by yourself God bless you!
And also have to have the thought of rehoming your dog that's soooo sad.
All because of this idiotic problem we're going through.
Do you have anyone that can sta y with you like a friend or family member temporary?
You need some help.
Ohhh my heart goes out to you!!!
Please stay in touch my friend!!!
Are you on FB at all let me know we can become friends or you can text me even but please stay in touch!!! Sue
That sounds harrowing - hope I don't need that done.
Yes - on FB Dawn May u will see white dog as profile pic.
My daughter calls or pops in most days but I generally manage in my little flat.
My problem is getting out - I can walk a little way then get tired very quickly and vicious circle begins. The more tired I become the moire off balance I get. So frustrating.
I have had four steroid injections over a six/seven week period and it made a great difference to me. I discussed the destructive one with my ENT consultant and he said he would be loath to give it as I have 20% of hearing in the affected ear and I would likely lose it. In theory my balance would be ok but I might have tinnitus permanently. Happy with the steroid injections and if I need more I can have them. Worth trying definitely.
Dawn ,
I think I found you!!
Are you a Steelers fan?!?!?!?
Nvm that may have been another one of you!
Good Lord there is 5 million of you on FB lol !!
Anywa I think I found the right one we'll see 😬
Have you tried a physiotherapist?
Seeing a Physio foir another issue and she has given me a couple of tips but as not actually referred foir balance problem can't help further. I am hoping to see ENT and Neurology again soon so hope to get more answers or referred for Physio. Trying to push myserlf more and more each day but so exhausting. Finding screen work a challenge noiw too. It seems to trigger spinning and nausea. Its the noir knowing what this is that's also driving me potty.