The Vestibular Migraine Community

How does everyone with vertigo survive financially?


#41

Thank you, you are so right. They had “some” sympathy with the vertigo but seemed to think that between vertigo attacks the motion intolerance I feel wasn’t bad enough from stopping me doing normal things. It’s astounding really.

I am on Job Seekers anyway because going back on ESA waiting for the tribunal was more hassle than it’s worth. I just can’t quite understand when they actually expect me to tell a potential employer about my Vertigo, I mean you can’t keep something like this a secret. If I kept quiet then was offered a job and fell down the stairs on my first day whose fault would it be, mine, the employers, the Job Centre and DWP~? Mine probably if I keep quiet. If I reveal it on an application form then chances are I wouldn’t get an interview anyway. If I reveal it at an interview probably the same outcome as IMO an employer isn’t going to take the risk.

As Sarah said above “Developing MAV when you are already in work and have an understanding employer is very different from having to find a job with the condition already affecting your everyday life.” I tried to put this to the Judge but all she said was employers have to make allowances these days. Not sure quite what planet the Judge comes from!!

Sadly the DWP and Tribunals Service are in each others pockets. They aren’t there to “help” people back into work, their job is purely to get people off benefits by any means possible.


#42

So sorry to hear this Chris. I’ve had similar attitudes from occupational health. Don’t lose hope. You know most recover from ‘MAV’ so you should bounce back from this.

I developed ‘MAV’ whilst still employed. They were understanding for a time then ditched me. It’s not terribly different. They had to pay me a severance though which was lucky for me and has bought me time. But it still felt dishonest, cynical and mean.

Give yourself time to heal.


#43

Thanks James. Thing is I’m really not sure it’s MAV or “Basilar Migraine” as my Consultant “suspected”. Going to push the GP next week for a second opinion and at least get a diagnosis if I can. It just keeps coming back though every few years then staying for a year or this time closer to two years with a mini 5 month break!!

It’s not so much the major vertigo attacks that are difficult it’s the sort of motion intolerance in between that’s harder to cope with where every movement of my head things just judder or move. If everything was “normal” between attacks it would be easier to cope with and this tinnitus is bugging the hell out of me as well…


#44

With your history of ear trouble it’s surely got to be ears?

Incredible we believe anything doctors tell us when they don’t even know the mechanism of a vertigo attack!!

I mean really whats the point of an ENT?


#45

I know what you mean, especially when you pay for a private consultation and after a grand in their pocket it’s a case of “oh well it might be this, try these pills!!”

My deafness occurred when I was 2 and was put down to possibly a whooping cough vaccination gone wrong but maybe it wasn’t that. I never had any balance issues or dizziness until I was in my 20’s however and all I know is that the hairs/nerves in the ears are damaged. However it’s not a progressive hearing loss although I may as I get older suffer a natural loss of hearing through age, but my hearing now is pretty much the same as it was when I was 2. So possibly this rules out Meniere’s because it by all accounts has a progressive hearing loss.

The Tinnitus started in 2010/2012 so I am into my 40’s by the time that hits. I go to a Tinnitus group and I am the only one there who suffers with the vertigo and most of them are not deaf either.

It’s a complete mystery.


#46

They simply lack the ability to see fistulas without operating and ENT need a way to non-destructively accurately image pressure in the ear.


#47

@NewbieChris I too am really sorry to hear of the outcome. I really feel for you because I have had to take quite a bit time off work and so far my employers have been very good. I did have some dizziness when I began this job, but it wasn’t all the time and I didn’t mention it in my interview or on my application form, because I wasn’t asked. All I was asked was the amount of sick days I had taken in my previous job or if I had a disability.

The ‘seasickness’ came and went, and I used to work through it though it was terribly difficult at times. Now I just can’t and if I feel bad I have to stop.

You said in one of your posts that you have times when you are clear (a five month break I think you said). Applying for a job when you are free of vertigo is not dishonest, after all, how could you possibly know if it is going to come back? :wink:

I also have another suggestion for you. If you have that constant motion intolerance trying Topiramate might help you. I have read about that helping with the constant off balance feeling.

Don’t give up.x


#48

Thanks Sarah and James.

Are you in the UK Sarah? sorry if you have already said, it’s just that I have read so much about Vertigo that it seems in the US for example I am sure I read that it’s considered a disability thus meaning the employment things is a bit easier although I may be totally wrong.

My problem is my last employment two years ago was as a van driver and prior to that a football coach and neither are particularly vertigo friendly!! In fact the 5/6 month break between January to July I was offered several driving jobs but I declined because ideally wanted to stay symptom free for at least a year before doing that again and of course I haven’t made that timescale. In fact I am not even sure if I need to let the DVLA know about my vertigo. I did when I was diagnosed with Mild Sleep Apnoea and they took my licence away and it was a nightmare to get back even though I later found out you only needed to notify them if you suffered daytime sleepiness which I didn’t. Obviously I am sensible and haven’t driven since this started again bar sitting on the drive with the engine running because with my last bout my car battery ran dry after a few months!!!

The last couple of days have been a bit better. Have only had one 5 second spin and the motion intolerance is a tad better. Not sure what else to call it really. Best way I can describe it, and sorry if I am repeating myself again, but if normal people look at say a clock on the wall and move their head in an up and down or sideways motion like they are using their head to say yes or no, then the clock on the wall stays still because your brain is trained that way. With me the clock would move when I move my head. Same when walking or in a car the world judders when you go over a bump or as you walk. It can be severe but generally it is just a feeling of something is not quite right and you are more cautious. If I could get that gone then things would be pretty good so I am seeing my GP again next week and will suggest to her this Topiramate so thank you,. I am going to get referred again anyway because I just want a diagnosis…


#49

Hi @NewbieChris Yes I am in the UK. In my own situation my symptoms developed very gradually, kind of like seasickness for a couple of weeks at a time about twice a year, then it got more and more frequent, and sometimes (not always) shorter in length. Near the beginning I did also get times when I wasn’t sure what was wrong but I just felt a bit 'off. I was working at a school for students with learning difficulties at the time, and towards the end I was finding it hard to cope. My next job (this one) is as a healthcare assistant, and it has been a rocky road at times, but I do like my job and have never considered myself as disabled. Just someone who gets dizzy sometimes.

I realise that everyone’s situation and symptoms are different (obviously that was the very short version of my own journey) and I am able to drive to work.

I hope you do get some relief from topiramate, or something similar. Maybe you need a career change, is there anything else you would like to do other than driving? I don’t see why you can’t be a football coach again if you can get some of this under control.

But like you say, a definite diagnosis and specialist help would be good first!!

When you are feeling dizzy (and don’t know how long it will last) it is hard to be positive isn’t it, but then you get a dizzy free day/week/month and everything feels different again. You will come out the other side:-)


#50

Well funnily enough the job interview I had to cancel a few weeks ago was a Teaching Assistant post,. When I was 17 (a long time ago) I did a YTS Course for two years working in schools with SEN kids and should have carried on with that, but you know how it is, college led me down a different path and that didn’t work out but hindsight is a wonderful thing. Then a few years ago I got back into it between jobs volunteering in a SEN school and worked my way up to being a supply assistant at funnily enough the school I worked in at 17. Unfortunately it closed down within a few months which was typical of my luck and bar the driving I had been trying to get back into that at various schools but I have missed out really to people with an NVQ. I was pondering doing an NVQ course when the vertigo hit so hopefully once this vertigo goes I will possibly try and get into a school somewhere. Absolutely loved working with kids with Downs Syndrome, they are such a gentle bunch and great kids to work with.

I saw the optician yesterday and my eyes are fine bar a slight prism issue which I will get new lenses for but that wouldn’t cause the vertigo. I see an audiologist on Tuesday to see whether he might have any suspicions so you never know and then seeing the GP Thursday so not just sitting back this time around I am going to try and get this diagnosis. A few days without major spinning but still having the motion intolerance but small positives I couldn’t do anything three weeks ago!!


#51

I did enjoy that job, I did it for 7 years. I started with the more able students but then worked mostly with the more sensory and physically disabled students aged 14 -19. There was a lot of hoisting and personal care involved, and most were not small, and I found all the changing for swimming very hard towards the end. But it is definitely a rewarding job. I eventually left because it was only 26 hours a week and when my daughter left education I lost all my tax credits so I needed something with full-time hours.

If your heart is in that kind of work then why not go for a career change :slight_smile: You could start by volunteering again, just to get up to date and refresh yourself with all the terminology and any changes and that would make you a better candidate for an interview. Being willing to undertake an NVQ might be enough, without actually having it to begin with?

Good for you. Lets hope you can get some answers and a treatment plan.


#52

Well just an update. The audiologist I saw was fantastic which was a major surprise.

Firstly he suggested that my hearing loss at two years old may have been attributed to Congenital Toxoplasmosis which is what has caused a scarring of my eye just behind the retina, which was quite interesting. Unfortunately Toxoplasmosis doesn’t reoccur and cause vertigo or that would have been the mystery solved!!

He suggested however to see an ENT Consultant but one who specifically specialises in balance disorders and advised me to get referred to the Royal National Throat, Nose and Ear Hospital at Kings Cross which my GP the following day did indeed refer me. I asked her about Topiramate but she suggested discussing that with the specialist when I see one. Got the impression it’s quite a powerful drug!

The audiologist said that long term dizziness can be cured in some people by cutting the nerve or something in the inner ear which in turn means you balance by use of your eyes only. He explained it all quite well saying that the brain gets confused if your eyes and ears are sending mixed signals. Not sure if I want anyone cutting anything in my ears though!!!

Small progress however.


#53

Rule out other causes including a fistula before considering cutting anything!!

I’ve even seen an up to date video that for UK medical practice even Gentamicin injections are being discouraged as it apparently guarantees chronic unsteadiness despite having a good reputation for controlling the vertigo.

I’ve made a surprising amount of progress recently, a route which would not have been possible had I had anything cut :slight_smile:


#54

Glad to hear you are doing a bit better. I’m not having as many episodes but still the motion intolerance is the thing that lingers. I actually played some golf this week which would have been impossible 3 weeks ago. It wasn’t particularly good golf I grant you but at least I didn’t fall over, although I did a funny dance on the tee a couple of times!!

I am hoping that tis may be similar to 2008 when I had a long 8/10 months of the vertigo then it cleared up a bit only to hit hard again for a short period of about a month. After that it settled. Hopefully this recent hard attack was possibly the end of this particular cycle, or I am hoping so at least.

I am finding that if I go out, or play that golf it actually helps to take a couple of ibuprofen and two paracetamol. No idea why!! What is confusing though is that other people are quite surprised that I am on Amitriptyline for vertigo because apparently it makes some people dizzy!>?

BTW Don’t worry and cutting of anything would definitely be a very very last resort!!!


#55

Weird, Amitriptyline is the gold standard for Vertigo and dizziness. It is also very good at decreasing nausea and reducing motion intolerance and allows you to look at screens again. It’s not everyone’s drug though. Your mileage may vary.

TOO MUCH Amitriptyline can make you dizzy but on lower doses it can diminish dizziness. Did wonders for me @20mg. Now I survive on 10mg.

Very glad to hear it!! :slight_smile:


#56

@NewbieChris At least things are moving along, progress however small is better than getting nowhere :slight_smile: I can understand your reluctance to have anyone cutting anything anywhere though!

Topiramate has potentially a lot of side effects and it depends how you react to it. I think it works well for people who can tolerate the SE’s.

Do you know how long you have to wait to see the Specialist at Kings Cross?


#57

HI Sarah, No not sure how long I will have to wait but knowing the NHS quite a while. Had a fortunate week where things have calmed down for me a bit leaving just the motion intolerance. It’s fine indoors and you feel 100% but it’s outside you notice it more. I’m going to really push for a diagnosis this time though at the new specialist “when” I get to see him…


#58

I went to London and the wait was 3 months so hang in there as it was so worth it. I saw Dr. Chan who spent 4 hours with me, well that included all the tests!


#59

Its very important to fight the temptation to stay in though. Keeping active (and social) will help you compensate over time and help you psychologically.


#60

Revolving : Thanks I thought that’s usually the timescale.

Turnitaround : Oh absolutely it does help, I just meant that when you stay in you suddenly think you are fine then when you go outside you realise that you aren’t quite there yet.

Was interested to see over the news recently that they were trying to promote awareness of migraine and class it as a disability because most employers don’t seem to have any sympathy. Nothing about MAV but I have said all along that people don’t sympathise because you can’t see it. I just tell people now, “spin around a minute then try to walk”. Unfortunately most just take my word for it!!!