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Ongoing vertigo issues by a newbie


#121

Many thanks for all your help and to others who posted on here. I would never have thought to have visited London if it wasn’t for your suggestion to do so so many thanks again.

Nope no reason. They tested for Toxoplasmosis due to the scarring on my eye but that came back negative. She said that whatever damaged my hearing at 2 years old could have done the same to my balance organs and it was only as I got older this became noticeable and of course this hit me first time when I was 21 so that’s 30 years ago. I guess maybe either the whooping cough vaccination could have given a negative reaction or maybe even a cold or a virus could have done it but there isn’t a way to know for sure. It would be interesting to know if any other people on this site lost some of their hearing after early life vaccinations and have been diagnosed with similar later in life, that would be some poll !!!

Having said that I could count myself fortunate in some ways. A virus affected an old friend of mines heart several years ago and he passed away only a few years after that so if it is a virus or cold that was my cause maybe I should just be thankful it hot my balance organs rather that something more important. I guess medical science is full of “don’t know why’s” and that’s unfortunately why there isn’t a one cure fits all for this “vertigo”.

It’s a shame that is isn’t seen as a recognised disability though because it can affect people (as we see on here) just as badly as other conditions that are more common knowledge. As I probably have said before at my worst my claim for Employment and Support Allowance was thrown out even though I couldn’t walk in a straight line. It’s certainly an unknown and ignored condition.

I’m still not back into full time work as yet so maybe I should set up a charity of sorts but I wouldn’t know where to start!!


#122

It’s good to have some idea what might have caused these things. Does give some sort of ‘closure’ in a strange way. Saves keep wracking the already overaught grey matter.

Absolutely.

Years back I know I read on the internet MAV/VM was classed as a Disability but I’m not sure whether that was in UK or US. So could well be worth pursuing by anybody in need. Helen


#123

Hi @NewbieChris I have just been catching up with your story - quite a journey you have been on. I am a recent MAVer , or to be precise recent ‘Migraine Variant Balance Disorder’ person as diagnosed by the eminent Dr Surenthiran in June 2018.
Like you I was prescribed Pizotifen but I was also put on Dr S’s 6 C’s diet and my vertigo has gone but I have been left with the ringing tinnitus and ear pressure - sometimes head pressure too. I have no idea why my ears keep ringing but it seems to be linked with food, barometric pressure (maybe) travel and possibly stress.
I was off work for 6 months last summer and when I went back in September was required to have a OH assessment. On the OH report it included:
Inclusion under the Equality Act 2010
Although the symptoms may not have lasted a full 12 months yet, this is likely to be a long term condition which can affect her every day activities outside of work. For which reason, in my opinion it would be wisest to assume that her condition would be regarded as a disability under the Equality Act 2010.
I would say that your condition would, or should, be regarded as a disability and I agree with Helen that it would be worth pursuing further.

My sister-in-Law, who by coincidence also has balance issues as a result of a meningitis infection , which completely destroyed her labyrinth on one side, was classified as disabled and unable to work and was able to claim disability allowance. She did have to go through quite a few hoops at the time to get the allowance, but they were unable to argue that she was fit for work. Although her diagnosis was not the same as mine we have the same symptoms - hers were vastly improved by the PT, but she tends to walk with a stick for balance especially when she is outside of her own home.
Maybe speak to your GP or consultant about the disability diagnosis and see how you get on? Jan


#124

Interesting stuff JanB thank you for posting that,.

At my worst condition wise I had a two year battle with the DWP over Employment and Support Allowance finally losing the battle with them at a second tribunal. The Judges parting words were “We have ruled in favour of the DWP who state that you are fit to work but OFF the record you have my sympathies because no employer in their right mind will employ you!!” Not kidding either. Rather than trying to fight the condition all my time was spent fighting them and I still have a box file full of paperwork from my wonderful journey with them. Then the only benefit available to me was Job Seekers and you had to declare yourself fit to work for that so hobbling in on a stick spinning was interesting!! I was “very” lucky that my mother was extremely generous in financially helping me out or I would have been done for to be honest, don’t know what I would have done and the Government just wash their hands of you. I had a Health Assessment where the guy lied about what I had said and what medical assessments he performed and even though I asked for the conversation to be taped so had evidence they just ignored it. I could go on for hours but won’t bore you with it but I’m lucky I had that support from mum or it could have sent me over the edge.

Your post is interesting so not sure why I didn’t qualify for that. Unsympathetic or unqualified Assessor or decision maker, not having MAV as a diagnosis, having a condition that went up and down??? No idea. Not sure if Vestibular Hypofunction is on their list but I found that a variable condition didn’t do me any favours.

Now I am not too bad bar the motion intolerance between head and eyes so am fit to work but if I did start spinning again I wouldn’t be. Doesn’t get any easier though as I am still not in full time work because I get to the interview stage and that’s it. “Why did you not work for two or so years?” they ask. I reply about my condition. “Is that sorted now?” I reply “It’s better than it was but I will never be 100%” They ask “can it come back again?” I say “yes it’s very possible”. I receive three days later “thank you so much for attending but you haven’t been successful , we wish you well blah, blah, blah”.

Problem is what do you do,. lie? That goes down well if I have a major attack within three days of starting and then what do you do, pretend it’s something new?! It’s a real dilemma because it’s not even the sort of disability an employer can cater for. “So what can we do to help your condition?” “Er let me lie down for hours and have weeks off recovering!!!”

I’m not moaning (I hope) people are far worse off, I know someone who had a heart attack and brain tumour and was told he was fit for work so I guess it’s just a lucky dip who takes your case on whatever your condition.


#125

Hi Chris
Sorry for my delayed reply - I missed your response - not sure how!

This one is always tricky - I am a Careers Adviser at a creative university and we have lots of neuro-diverse students who have found it difficult to get part-time work, or any relevant experience, so of course they struggle when they are job hunting as a graduate. Our advice is not to lie on a CV or at interview as employers can sack you if they find out you have not been honest. Some employers welcome honesty but then don’t give you the job so it is a catch 22 situation. What sort of work are you looking for? Some employers are disability friendly - mainly Government bodies, ,local councils etc so it might be worth looking for vacancies with your local council. If you are still being supported by your mum - what a lovely lady - have you thought about doing some volunteering a) to see how you cope , and b) to have some recent experience to put on your CV. The website https://do-it.org/ is a good place to start as you can search for things in your area.
Apologies if I am teaching my grandmother to suck eggs as it were - things are tricky enough without some smart Alec telling you to be a volunteer! Jan


#126

Hi Jan. Oh I have applied for so many jobs with local authority and even applied three times to work for the DWP almost to make a point and never got through the online test stage! I do some sporadic work for a Young Peoples Disability Club and also a Youth Work Charity both paid and unpaid and had been trying to get into another Special Needs School but to no avail as yet. Found a perfect school last year where I thought I was doing extremely well but a personality clash by all accounts with the Assistant Head and I was out of the door. Not the only one I have since found out. It seems they want young cheap robots and a lot of long term experienced staff have lost their jobs,. Sadly education is not run by education people these days but Business Managers so it’s not what’s right for the students anymore it’s what’s right for the bank accounts!

I could do most things now as my condition is at the moment stable but it has reoccurred four times in 25 years so who knows when I will be out of action for another two years?! I drove a van for two years a few years back and was made redundant. Within 2 months my vertigo returned so I would have had to leave anyway.

I now have the added issue of my mum not being well so I am doing many things for her on the care side and have been for several months. So I am now 50, looking after my mum with a possible long term prognosis of vertigo attacks. Not a great look on a CV!!!


#127

Depending on your skill set, you could always try to apply for jobs on UpWork or Freelancer. They have lots of short term contract work on there, which helps the anxiety/depression with not knowing what dizzy spells the day will bring. It’s given me the confidence to get a local job again and I’ve maintained some steady work through some connections on there. It’s hard to get paid well through there, but better than no work at all I say.


#128

Hi Chris - sorry to have suggested things that you have already tried - that’s the trouble with careers advisers they think they know everything!
I have been fortunate that when I was off sick last year, because I had been working at the same place for 12 years, I was entitled to 6 months full pay.
I can’t believe that you were turned down for ESA - incredible.
What a shame that the Assistant Head at the school was not easy to get on with - some people can be very difficult when they are in a position of power.
I am sorry that you mum is unwell - it is tough when you are in a caring role with vertigo as it increases stress levels which doesn’t help.
CVs are a real nightmare - maybe try a skills based version instead of a chronological one - it makes it harder for employers to spot the gaps in employment that way. You could call the employment section 'relevant employment ’ and just list the jobs that are linked to what you are applying for. A heading “Other Employment” could be a summary of other roles you have had. Harder to make this work on an application form though and most education based roles require a form and CV these days. I shall say sorry in advance for unsolicited CV advice - as I said Careers Advisers are always poking their nose in where it isn’t needed!
Jan.


#129

Thanks Ander I may well take a look at that.

Jan no you have been great I always appreciate any advice. It’s just so difficult at the moment because whilst mum doesn’t quite need permanent care she needs quite a lot of help which is me!! Just been through a battle with Occupational Health because they won’t get involved unless mum agrees to it but of course “she is fine” she says and until you get a mental capacity statement you can’t do anything because as an adult even bad decisions are still considered decisions! So at the very least I need to be contactable. If I worked in a school I wouldn’t be and that’s the difficulty. We have various other help going over there but IMO it’s Residential Care she needs but she doesn’t want that and until she is further down the bad memory route we can’t force her. Cognitive impairment is like Vertigo in many ways, a forgotten condition where help isn’t really forthcoming because it’s not a physical disability.

I wish I had used mum’s Age UK advisor who got her Attendance Allowance to have completed my ESA form though, she was brilliant and knew 100% how these forms should be completed. I filled my own in a few years ago and I was struggling from the start if I am honest. It was a horrific experience though. Two years of jumping through hoops and still not getting anywhere. If mum hadn’t supported me I would have been out on the street and I still have concerns now because of my sporadic employment due to these yearly vertigo attacks I only have half the years NI Contributions for a pension but at the same time I can’t afford voluntary contributions. Damned if I do damned if I don’t.

It’s a crazy world.


#130

Probably something else you already know but just in case not if you are registered Carer for Mum you should be able to get credits to cover this gap like people who are in receipt of Unemployment Benefits and young Mums. Also there was financial help. You would need medical support to say your presence was meaning your Mum is kept out of a home. My brother did for our Mother. Worth looking into. I’m not sure whether its changed lately. Helen


#131

Thanks Helen,. I’m not quite carer for my mum as yet just “what would you call it” helper or servant would be more apt!! She has been diagnosed with Mild Cognitive Impairment which is clearly moving towards a form of dementia but Occupational Health won’t do anything until she has a dementia diagnosis and both the GP and the Memory Clinic think it’s pointless doing any more tests until October which will be a year since her previous tests. It’s frustrating because on good days she is not too bad but when she has a bad day I am very worried about her. We have a cleaner come in and have all her meds delivered, mobile hairdresser, mobile chiropodist and I do all her shopping, paperwork, and keep an eye on her finances but I am not allowed to “take full control” until a dementia diagnosis has been made and she has an official “does not have mental capacity” statement. This is the crux of the problem as I said before even if a person makes bad decisions they can still be considered as being able to make decisions so you can’t go third party on a bank account or place them in a home if they don’t want that. In a way it protects them if certain people where to “want” to take over I guess for their own gain, but it makes it difficult if you want to take over to just keep them safe and healthy. So I just have to keep an eye on her and I have realised how difficult that has been over the last few days as I have had a really bad cold/flu thing so haven’t risked seeing her as I don’t want to give her pneumonia. My sister has stepped in fortunately which is a surprise because as much as I love my sister she is pretty useless!!!

I have been since not working though on Universal Credit so not sure if the periods on that you get NI contributions?


#132

Well that’s exactly what my brother did for mine and he was deemed ‘carer’ and given Carers allowance.

I would have assumed so for any period of non working ‘inactivity” but ask. I may have got bit out of date and things changed since I was involved with Mum. Helen


#133

Well that’s interesting thanks Helen. I know Carers Allowance is caring for someone for 35 hours per week so not sure if I would qualify for that unless being “on call” is considered. Plus I suspect my Universal Credit Work Coach would suddenly wonder how I am doing 35 hours a week work search on top of 35 hours per week care. However it would be a weight off my shoulders “if” I managed to get careers allowance rather than UC. Will have to look into it so I’ll give the CAB a call. Thank you.


#134

Well my brother was entitled to claim Carers Allowance and he was living tith Mum (so there overnight mostly) but also working permanent early shift. But things may have since changed. Helen