Undiagnosed balance disorder

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.

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

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

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.

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 😬

Never did receive your friend request.

How are you? Any news re tests/results?

I have ENT on Monday so fingers crossed I get some answers.

Nearly burnt my flat down twice last week -seems my concentration levels are way off. Had to reorganise myself completely to avoid danger. Thought I was having difficulty concentrating on reading and TV but cooking - oops!

My walking is no better and I am now waking up to vertigo during the night for some reason? Can't find anyone else who has this happen. Jotting it all down for ENT so hopefully it will help therm with diagnosis.

Keep in touch x

Hi Dawn,

I might have sent the friend request to the wrong person as there were several with the same name and a whit e dog on profile.

But hers my FB name is

Susan Bernardi Aument

So I should be easier to find if you want to friend me I look forward to it !!

I had a VNG test yesterday, I'll get results from ENT on that this Wednesday.

Stay in touch also please keep me posted also on FB I can hook you up with an awesome site in there also for the same problems.

Thanks Bluesmann

I asked about a destructive injection & you lose the hearing and can get tinnitus...

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

That sounds harrowing - hope I don't need that done.

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.