The Vestibular Migraine Community

How does everyone with vertigo survive financially?


#61

Got you :slight_smile:


#62

@NewbieChris

Hopefully not too long.

Still horrible but some relief is better than none.[quote=“NewbieChris, post:57, topic:14097”]
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…
[/quote]

Indoors is like a safe place isn’t it. You can sit down whenever you want, you don’t have too go far for anything and you feel more relaxed. There is a balance somewhere between pushing yourself too hard and just giving up and staying on your sofa all day!!


#63

I know what you mean,. I have had a bit of a recovery and have played some golf this week again without doing any silly dances when swinging a club!! Interestingly my golf has actually improved which may be down to me taking my time and actually concentrating and trying to keep my head “still.”

Still have the intolerance and what I call “here we go moments” when the head goes tight and you have almost like an inner head spin, but fortunately touch wood they haven’t progressed to more than a second or two.

I have now been referred to a top guy (apparently) in London via the NHS so will see what that brings, but small steps in the right direction at least.


#64

Golf is harder than it looks!


#65

Yep it is especially when you play as badly as I do!!! :grin:

Have had a rather bizarre case of a terribly dry mouth the last week or so, especially when talking, on top of this a strange on/ off burning sensation in the back of my throat. Not a heartburn type of sensation, I have had that and am on long term Lansoprazole. Have looked up side effects from Amitriptyline because I upped it to 3 tablets a day rather than one a couple of weeks back and noted that a dry mouth can be a side effect from that but nothing about a burning throat.

Anyone else suffer side effects from Amitriptyline? It never rains but pours!!!


#66

I had that burning sensation too. I got off it, but when i was on it it didn’t go away. It was very weird!


#67

Interesting thanks. I have gone back to one a day and see if that helps.


#68

Just responding to the topic - I have stopped being able to use the computer which essentially destroyed my career. Trying to get another type of career jump-started, household manager. A huge demotion, and hard to get launched. But I’m trying. I could probably work at Trader Joe’s or as a cashier :frowning: Gone are my days of being a public speaker jet-setting around the world being paid to give 45 minute talks :frowning:


#69

@shazam Ahhh man, I’m so sorry to hear this. My dreams sound about as fizzled out as yours. However, I’m a firm believer we will make a full recovery. Just makes us a bit more empathetic and a lot more bad ass than our peers. To be honest- I was a big jerk before all this started, pretty selfish and self centered as people that thing they have it all figured out can be- just makes me look at the world differently now. In a good way, not taking things for granted and REALLY immersing myself in each and every moment.

I hope you all can find solace and joy soon, I fully believe you’ll be in full remission soon enough! Take care :tulip:


#70

I know the feeling of the last two messages. When this hit first time around I was a reasonable tennis player on my way to studying to be a coach,. Since the first vertigo hit I haven’t been able to toss a tennis ball in the air to serve so that was my coaching career gone, unless they change the rules to underarm!! Well I could toss the ball in the air, the problem was hitting it on the way down!!

Having said that as well as suffering vertigo I am a terrible hypochondriac and visited both the GP and dentist last week after noticing a raised ridge in my mouth. It was there last year and the GP wasn’t worried and after knocking it on a crisp I had started panicking again so rather stupidly checked with Dr Google!! Neither GP or Dentist were concerned but what that lesson has shown me is that I am now not so concerned about my vertigo!!! Other lesson, don’t google symptoms on the internet!!! :open_mouth:


#71

Don’t lose hope Chris. It may resolve. But it takes an awfully long time judging by posts on this very site.


#72

LOL been there done that! I used to google EVERYTHING, every odd symptom I had when doctors would shrug me off. Convinced I had a brain tumor or MS, because “it’d be such a clear explanation of what was going on”… haha silly me. MAV can just be so complex and put stress on your central nervous symptom giving these plethora of symptoms. I feel for ya on the vertigo


#73

Hi there. I’ve just found this forum, and this is my first reply. I work from home as a writer and photographer, specialising in food as I was a chef before my son was born. I count myself as very lucky although I worked hard to get here, and the freelencing community are very supportive. My clients have always been very understanding and I am renowned for missing deadlines…but hey.
Sometimes though it is more of curse than a blessing due to all the stress that goes with being (and staying) self employed. I find myself scouring the job boards and wondering if returning to a normal job would be better.

What I would say though is that the online world offers way more opportunities for carving out your own path of employment than the old traditional models.Take a look at people per hour, as a starting point to see what is out there. You may surpise yourself :slight_smile:


#74

Thanks guys, great support I appreciate it. I would love to be a photographer as I have been told some of the pictures I take on my phone of sunsets and the like are great but with no experience and just “good” pictures on a phone I doubt that would get me very far, especially as I am close to 50.

Fascinating conversation this week with an NHS representative at a Job Fayre I was instructed to attend by the Job Centre. Very nice she was and extremely sympathetic to my trials and tribulations with Vertigo and the DWP, and although she is going to keep me in the loop with any potential roles for me within their admin sector she mentioned something that I hadn’t really thought of before. She says basically the biggest difficulty I would have as someone with a fluctuating condition like Vertigo is this. Say you are sick Monday, attend work Tuesday, sick Wednesday, attend Thursday, sick Friday. Ok that’s an extreme example but she explained that this would not be considered one period of sick absence but three within a certain time period. Not sure what the legal period is but it’s not very long. Three sick periods within that time brings in a disciplinary warning through no fault of my own so therefore four or five periods of sickness due to my vertigo (even if they are one day each) could result in me being sacked for a lack of attendance,. She says that the added problem is that this goes on your CV and of course the next job you go for you need a reference, which is your last employer. Why does everyone seem to realise that a fluctuating condition is as disabling as a permanent one except the DWP, Job Centre and Tribunal Service!!!

Had some good news this week though although I guess “good” with a tinge of frustration. On top of everything else I have been under the doctor (so to speak) for three years regarding possible sleep apnea. As well as the vertigo I have insomnia and fatigue. I have had several tests and half came back with a mild apnea and half clear. After waiting months since my last check I have been told over the phone that I DO NOT have sleep apnea. So whilst absolutely delighted that I won’t have to try and sleep with a CPAP machine which is basically a small octopus on your face I now am still not sure what causes my insomnia and tiredness.

Maybe it’s everything that’s been going on since 2012 with constant vertigo, tinnitus and insomnia and constant worry and anxiety of work and finances. Maybe I’ll try a more psychological therapy and see if that helps my woes!! I just wish I could put my body in reset to maybe a few years back. Anyone got a spare De Lorean so I can take myself back to 1985?!?! :smile:


#75

Sleep issues are probably VM. I get variably bad sleep, especially now that I’m off meds. It’s because of CSF pressure on the ear is higher when you are reclining. There may be a medical solution to the lack of sleep to numb the sensations of vertigo and pressure.

I think the answer Chris to the job issue is go freelance too. Then you can work when you feel up to it. You may need to start simple and develop new skills. I’m looking at the same strategy.


#76

Are they allowed to do that you while you are sick? Look into it and you may be eligible if you had a disability plan


#77

I finally found a new career! It took a while to find something I wanted to do that didn’t involve elevators and computers - my main triggers. Oy, living in a city, that was a challenge! So I’m selling composting service, standing outside at cold farmers markets, shilling for compost. And I couldn’t be happier. It took a while, but I did it. And I hope to be back on the public speaking stage, getting paid for my talks. I’m not back at 100%, but at around 90%, I am functioning, and solvent - well, almost. Should be in the next few months.


#78

Awesome news, well done you, what a fighter!


#79

Brilliant stuff Shazam, so pleased for you.

Well I must thank you Turnitaround after I finally got to see a whole variety of experts at your suggestion of the Royal National London ENT Hospital today where I spent a good two and a half hours having a variety of tests and consultations, a very well oiled place indeed.

The Consultant says it’s not Menieres (good news) and doesn’t agree with the last consultants belief that it could be MAV. There is no definite diagnosis but she had a suspicion it could be something to do with Toxoplasmosis. Not sure if I mentioned it before but my optician a few years ago spotted this scar at the back of my eye which by all accounts was millimetres away from making me blind in that eye. I personally had no idea about Toxoplasmosis (I never have had cats) but he suggested that possibly I could have picked up the infection as a child which could be true considering I didn’t lose my hearing unto I was two.

So the consultant today said that there could be scarring within my ears as well. Obviously my first vertigo episodes were back when I was 21 and I am now 49 with vertigo attacks at 21, 38 and then two years ago this latest saga started so I asked that question as to why the long gaps and apparently Toxoplasmosis can lie dormant and then come to the fore. She isn’t 100% sure but is going to ask my GP for some blood tests to look for something else, although she didn’t tell me what!! She also thinks I may possibly have Secondary Hydrops although unsure as to how. Whilst my vertigo is a lot better it’s the motion intolerance I suffer with and the tests clearly showed that my eye movement is slightly behind my brain when moving my head so it’s that delay that gives the intolerance. The balance mechanism is fairly bad on both sides but fortunately not totally defunct so there is something to work with.

The bad news is that in my case drugs won’t help. The good news (I hope) is that the consultant thinks some vestibular rehabilitation may well improve things so I am being booked in to see a physiotherapist for a couple of sessions in London to start with and then hopefully they can transfer me to somewhere more local and I also will have a follow up with the consultant. Unfortunately the waiting list is around 6 months so all this is unfortunately still going to affect my search for work and sadly no pill is going to solve things overnight but I didn’t really think that anyway. Fortunately my hearing (or what’s left of it) seems stable so hopefully it won’t be progressive but I should be prepared for future attacks every few years like I have had up until now, but maybe the blood tests might show something up that can be treated with medication.

So no miracle cures but at least I can rule things out and now at least have a sympathetic consultant who seems determined to get to the bottom of it, so thanks again Turnitaround for pointing me in the right direction.


#80

Pleasure Chris. Go for it and things will improve I’m sure!