How does everyone with vertigo survive financially?

Sorry for starting a new post but this interests me, especially the UK based people.

My story is here and unfortunately after an improvement of my vertigo earlier in the year I have had a few wobbly moments in recent weeks which culminated into a major attack yesterday and I am now feeling pretty much like I did at the start of this awful vertigo journey. So literally back to square one.

When this all started two years ago I was put on Employment and Support Allowance due to being unfit for work and my GP and consultants were very helpful, but the delightful Dept Work and Pensions decided last summer that after a one hour assessment and the fact I could make myself a sandwich I was declared fit for work, despite having a vertigo attack at the assessment!!

So I ended up on Job Seekers Allowance although obviously I couldn’t do my usual job which is as a driver. Between September 16 and the present I have applied for over 350 jobs and have received a grand total of two interviews which I suspect has something to do with having to list your medical conditions on applications and now with the vertigo back I am suddenly going to have to consider trying to apply for ESA again although if this doesn’t clear up my only option long term may be to either sell or let my house and move back home just so I have some income.

So I was just wondering how others with vertigo cope financially whether it’s through having an understanding employer or through some sort of sickness benefit?

As if we didn’t have enough to worry about, right?

Yeah, I was considered “fit enough for redundancy” (no, i’m not joking! the private sector can be brutal), so presently surviving on severance. At my present trajectory I’m hopeful of recovering enough to go back to work, but you never know with this condition. I’m fairly philosophical about losing my career, whilst the money was pretty good, the stress was awful. I’m giving myself another year. The lack of stress really helps.

On the bright side my lifestyle is a lot cheaper these days - giving up alcohol helps the pocket A LOT and I don’t go out anything like as much as I used to.

I haven’t looked into disability allowance, but perhaps disability is something someone could argue, gulp?

turnitaround, Are you in the uk?

I am indeed, East London

I should point out the employer in question was understanding for a while (a good while actually), but there was a lot of pressure on the London office to scale down and they made me walk the plank early on. I’m not sure I’ll ever be able to forgive the manager who’s call it was, but it’s actually a good outcome not having to deal with that stress.

Oh the stress!! To much to go into but I was battling the Department of Work and Pensions for over a year due to the fact that they over ruled my GP and Consultants and decided I was fit for work despite their own Disabled Persons Back to Work Scheme telling me I was unemployable!! So I had to go onto Job Seekers where you have to declare yourself fit despite not being!! You then just have to apply for anything willy nilly just to keep up with the Job Centres targets even when you know you won’t get the job or even worse they will sack you after a week anyway!!

As I said above my vertigo improved earlier this year but I still couldn’t find work and when I started suffering unsteadiness a couple of weeks ago I thought uhuh, here we go. Now the last 48 hours has been permanent on/off attacks and the irony is I had an interview this Thursday. The problem is it’s 25 miles away and driving is out of the question so I’ll have to cancel and hope that the Job Centre don’t check up on interviews!

The only way I can re apply for ESA is if the condition has worsened which considering the headaches I am getting this time around I guess that counts but I have only been able to survive with family loans for the last year and a half and I can’t continue that so I guess my only option is to either sell or let my house and move in with my elderly mum which isn’t ideal at 49 years old!!!

Vertigo isn’t considered and illness that’s the problem,.

If only I could find some work that I could do at home using my PC I’d probably be able to do that even through one eye, but nothing like that exists bar those scam get rich quick schemes!!

That sucks Chris, it really does … I hope it improves very soon for you (and it will, Chris!)

Have you ever been investigated for a fistula? Some can have them from birth. As you may know I have been diagnosed with one (after minor ear trauma) and it causes all the unsteadiness and vertigo attacks in my case. I’m positive fistulas are more common that some doctors assume as Secondary Hydrops (that occurs when you have a fistula) is uncannily similar to MAV.

How do they diagnose a fistula?

I had an MRI and a series of vestibular tests at around Christmas 2015 and the MRI was clear but the tests showed various vestibular inaccuracies which are difficult to explain. I have been deaf since I was 2 but not sure if that is an issue although I suspect not as I had vertigo for the first time at 21 then about 2007 ten on and off since 2012. What I have noticed since this most recent bout is that my Tinnitus is a lot louder and two weeks ago I was getting a low droning tinnitus that I have worked out tends to precede an attack and my left ear also cracks if I turn my head. The really strange thing is that if I look one way everything spins but if I look the other way all is still and then the sides swap.

The diagnosis was not confirmed but my consultant was veering towards Basilar Migraine and I tried Amitriptyline and Pizitofen with no relief but then woke up one morning a few months ago and all was fine. Of course sadly it comes back as quick as it goes.

It’s a difficult distinction without explorative surgery. I had obvious trauma and sporadic sensations of fluid in ear in morning. This all fits. There is a test being developed in Japan. But what we need is something that isnt invasive. MRI wouldn’t show it. Conservative wait and see approach for me. It is getting slowly better but who knows. I think migraine will prove to be a reaction to sensory issues.

Interesting. Assume no medications work for you?

Oh sure! Amitriptyline! Works very well considering. It works to dampen the sensory amplitude thereby reducing the confusion to the brain, reducing nystagmus (thereby eliminating nausea), reducing the sensation of dizziness and blocking a migraine from emerging by reducing the sensory stress.

But hey, off topic

NewbieChris I suggest you talk this over with your consultant if you can because vestibular migraine is now a recognised condition and in the neurologists book of diseases which it wasn’t until this year. I learned this from my neurologist. That may make a difference to the Dept of work and pensions etc. It should anyway but I think you will need your consultant to confirm it all for you. It is new ground but my neurologist was very excited as it had taken ten years to get VM registered. Good luck.

Revolving thanks so much that is some hopeful news. I have had so many battles with the DWP and was declared fit for work late last year despite the Judge at the Tribunal saying off the record that she knew no one would employ me!! I have an Upper Tribunal hearing in two weeks time because they made an error of law at the first one where the GP sitting on the Tribunal wasn’t registered with the GMC but this is for may last claim back in late 2015. From what I can tell to claim again I will need to show the condition has worsened or claim for a new condition so maybe I’ll have to claim under vestibular migraine rather than vertigo. I’m having really weird symptoms this time though where is I look to the left everything is spinning but if I look to the right everything is still. Look in the middle and it’s half and half. Totally debilitating and I can’t even leave the house.

My worry is that ironically I have an interview tomorrow but it’s 25 miles away. It’s obviously logical to apologise and not attend but I am note sure if my Job Centre will check to see if I went or not and if they do and I get sanctioned I really will be done for financially.

On a side note Chris I really don’t see how that could be explained purely neurologically, I would suggest you need to look at ear trouble - turning your neck increases ear pressure, which if swollen might begin to leak - the amount of additional pressure on each ear may depend on which way you turn your neck. When my condition was particularly bad I noticed an increase in tinnitus on turning my neck. I have a swollen inner ear. You seem to have had a long history of ear trouble and that may be relevant. Talk to a good ENT. Don’t purely rely on the hypotheses of neurologists (there’s no doubt that they know how to make us feel better by giving us nerve-numbing drugs, but they DON’T know the root cause and so how can they know how best to deal with it? Although conservative management may be optimal granted, so perhaps its just on patient history/response)

PS I can reproduce it … my tinnitus gets slightly worse when turning ‘away’ from my bad ear.

Thanks Turnitaround.

I had all sorts of Vemp Tests last time with air being blown in ears etc and they did say the vestibular system was out on one side but I had no nystagmus, which I assume is eye movement,. It’s interesting what you say though because my tinnitus has definitely got worse since the vertigo has come back and quite often if I turn my neck I can hear a crackling in my left ear, almost like it’s full of wax or something.

NewbieChris you do need to tell the Department that you will not be attending because the company will let them know. It is better that it comes from you. If you site your illness as VM it will be up to the tribunal to find out what that is but it will do you no harm to get a letter from the neurologist and the definition from the neurologist’s book of diagnoses. That should not be difficult as your neurologist or his/her secretary can get it for you I am sure.

Thanks Revolving although I got the interview myself so there has been no contact between the company and the JC. My concern is if the JC actually contact companies themselves.

I get a cracking sometimes when I move my jaw. I believe it is the dried ear leak breaking up in the Eustachian tube, no doubt a mixture of blood and perilymphatic fluid.

I don’t know the answer to that one but it would be a bit random if they contacted them out of the blue!

Well I cancelled it as I just couldn’t get there. So annoying that there do not seem to be any jobs out there for people who are housebound or more understanding employers. Mind you, if you have to give a job with two applicants who are you going to give it to? Person A who is fit and well or Person B who can’t even guarantee that they will be there due to vertigo?!

If anyone works from home I would love to know what it is you do?

You are potentially into the realm of artisans there. Designers, artists, indie games progranmers etc. Time to build a hobby into a new revenue stream? I live in a development full of people who work from home.