Hi I was just wondering if any of you have taken a significant amount off work and whether it made enough difference to your symptoms to be able to return again feeling better and continue in a better state.
I have been told that my workload and work related stress is such a massive trigger for me that I won’t get better until I take at least 3 months off, to coincide with me reaching the max dose of gabapentin. Dr Surenthiran said that the meds on their own won’t work unless I convalesce in the same way as if I had a visible physical injury that needed resting. In fact, he said that for many people getting a balance disorder is the subconscious’s way of telling them to slow down. I spoke to my boss about drastically scaling down my (teaching) job further but she really didn’t get it, so in the end I said I want 3 months off.
Now I’m worried if I’ve done the right thing. I’m really not sure how much it will help me and scared that I might have to go back to work afterwards either no better or better for a few days and then back to square one. I usually feel better at work and have been known to advocate working on these forums, but I know I have been overdoing it. I’m scared of being stuck at home, concentrating further on my symptoms and not having that part of my life.
I’ve been ill for 3 years now, tried lots of meds, VRT, diet and nothing has made any difference so it has to be worth a try, right? Or what?
Advice from anyone who has tried this much appreciated.
Not sure if I can help much but I am generally of the camp that I’m better when I am at work - or at least I didn’t find sitting round the house all day very helpful - and that was even when I had quite a few weeks off over the summer when the weather was good and the beach is only a short walk from my house. Mind you at that time I was barely able to walk to the end of the street without getting too dizzy and also needed help with shopping etc, so it may depend at what level the MAV is at. When I was feeling a bit better and managed to get away for a last minute holiday at the end of August I found it very helpful, but I deteriorated after about 3 weeks back at work.
Having said that my job isn’t too stressful (definitely not the cause of my MAV, although computer screens/lighting etc can be annoying now I’ve got it) so maybe reducing your workload would be better?
I guess it also depends on what you can do with your time off and what your home situation and responsibilities are. I find I need to keep myself busy to keep my mind off MAV and just “resting” isn’t helpful like it would be with the flu etc. Now if you could get to go away somewhere nice with lots of relaxing activities for 3 months then I’m sure that would do some good
Sounds like you’re stuck between a rock and a hard place. Sorry to hear that.
I took 4 months off work in the very beginning. I felt I improved so I went back to work.
However I also strongly feel sitting in the house doing nothing will totally 100% make you WORSE. So it’s important that if you’re going to take the time off, you use it wisely. Use it to lessen your stress and relax. Make time for yourself. Don’t see it as time now to get loads of stuff done you’ve not been able to for other people or to re organise the house for instance.
I borrowed a dog. And I took him on long walks. Good VRT and fresh air.
I got into the regular sleep/meals pattern. Took the time to make good food etc.
I know that another girl who dips into this forum from time to time has tkaen some time off work recently and she’s relaxing, taking time to go to the gym and she is feeling better.
As long as you use the time in the right way I think it will be beneficial. However, I suppose you also need to be mindful of not just taking away the stress and then handing it back to yourself the second you go back- or you could find yourself in, not necessarily the same position, but less well as you could have been you know?
Is there a way to reduce responsibility at work? Or work load?
It is great that Dr S has suggested this as he will write this down and your GP and employers will see that you are not being weak or should see it in a negative way. Your specialist is suggesting this course of action.
Over the course of this MAV journey, I saw a counsellor. She told me not to view these types of life decisions as set backs but to see them as much needed steps to take to get well. I was worried that taking a different job, lower paid etc, was a step backwards, and made me a lesser person, esp compared to all my friends who are high flying in the media careers etc. She made me realise these steps weren’t in my ‘life plan’ but sometimes you get thrown a curve-ball. It’s not a sign of failure to take a de-tour. It’s just a sensible re-route.
I can speak from experience here, unfortunately I’ve been off work with MAV for 7 months. This is mainly due to computer screens being a massive trigger for me. Ill be hit with a 2 day migraine within minutes of use.
At first I found that I was just sitting around watching tele and trying to relax but all I did was focus on the illness. I strongly believe that positive thinking can have a direct impact on your symptoms, in fact this is described in the anxiety and phobia workbook which my CBT therapist has recommended.
Like the others mention you need to be pro active now that you are off work. For instance I bought an exercise bike which I use for 30 mins first thing in the morning, it’s the best way to combat tension and stress. I also do my VRT therapy, muscle relaxation therapy and yoga. In have had some small break throughs since getting into this routine.
In short in answer to your question, being off work is a good thing providing you can use the time wisely.
Thanks for your replies and kind words. It is good to hear of your experiences.
I have stopped doubting my decision now but mainly because I have had some major struggles at work this week and can feel my body screaming at me that it can’t go on much longer. It seems there is no way to do less as long as I am turning up each day. I have only been back 2 weeks after a relaxing Xmas break and already I’m white as a sheet with dark circles under my eyes, my dizziness is through the roof, I can’t seem to think of words or they come out garbled, my balance is so bad I’m struggling to stand and my feet are killing me from the ridiculous strain I seem to be putting on them wobbling around all day, not to mention the earache, neck ache, flashing lights etc, you name it. Enough! Let the resting begin.
I will do what you have all suggested and plan my time wisely. Thanks for all the suggestions. These are some ideas I have which might be good for my body and soul: VRT exercises, wii fit excercises and foam mat balancing, walks, gardening, playing games with my kids, sketching and painting, the occasional DVD, limit iPad to an hour a day, NO laptop, limited reading, try the CBT workbook, cooking more healthy food from scratch, giving up my weekend wine habit. I would also like a cat but need to keep working on my hubby for that one!
Thanks MissMoss, you seem to be a bit of a mind reader. I was of course thinking about cleaning and reorganising the house and getting my teeth into a redecorating project but have since slapped my wrist. Must not substitute one work habit for another.
So roll on 1st March for the new lazy chilled out me. Bring it on.
I agree with missmoss83 - staying at home doing nothing will make you worse. It will give you the opportunity to mull over the following:
*Why am I dizzy?
*Will it get worse?
*Will I get better?
*How long will I be like this?
*How will I look after my kids?
*What have I done to deserve this?
*Etc.
All of these will probably make you more anxious, which will perpetuate the dizzies. From my relatively short experience of this illness, if you can forget about your symptoms and just get on with life (to a regular, stress-free extent) then you will improve.
I enjoy working full-time as it gives me a focus and a reason not to think about my illness. It gives me an enormous sense of pride to know that I am still doing a useful job and not letting this illness define me or my life. It helps being a contractor too - no work, no pay!
nicola what other meds have u tried? good for you for knowing when enough is enough- all you can do is the best you can with this problem and not blame yourself for all of it.
Sails- I have earlier posts which say exactly what you’re saying, that I love my job, it helps my self esteem and independence, gives me something else to focus on etc and how I will fight to keep going full time. But I’ve changed since then. I’ m certainly not jacking it in, I just need a break. In the early days I would have been rubbish at home, worrying myself sick about every new symptom, but I’ve grown and learned over this 3 year journey and know when I need to start listening to my body. People used to say I was really brave being a primary school teacher with all this going on but sometimes it’s braver to admit that you’re not coping. I hope that you never get to that stage. Thanks for trying to help.
Sarah- we’ve talked loads of times. I’ve tried propranolol, amitriptyline, nortriptyline, pizotifen and gabapentin. I feel for you with your terrible balance problems. It has only really been the last six months that my balance has deterioted which has made doing my job much harder. I’m fine with walking, it’s standing still that’s the problem.
i’ve missed so much time from work from my vertigo that i was lucky to have never been fired. along with my back problems i haven’t worked since 2008. i collect long term disability from my employer & am currently going for social security disability. cant be a reliable worker with this stuff ! good luck to ya if you’re able to make it to work every day. i wish i could.
This is an interesting thread. I’ve had my vestibular disorder for 6 months now (this time). It’s not nearly as bad as it was at first and I have managed to go to work (desk job) throughout, only taking days or partial days off now and then. However, being at work under fluorescent lights, sitting at a desk, and talking to people, as well as driving to/from work, makes me feel much worse. I do notice that on days off, like extra-long weekends, I feel better. I don’t focus on my illness as much when it’s not as bothersome. I know that sitting around isn’t good because we need our brain to compensate. I probably don’t get outside as much as I should on days off (in winter, it’s cold and I live on a very busy street w/ no sidewalk). But the lack of all the triggers mentioned above, really helps.
My worst symptoms these days is when I talk/listen to a person I feel very sick and crazy in my head…it’s very hard to describe as most vestibular symptoms are. I’ll feel ok one moment then if someone comes to my office and talks my head goes crazy. Also driving and going over bumps I feel every bump in my brain stem, back of head and neck, and when I stop the car and get out I often feel nauseous and disgusting, very unsteady and ‘off’ for a few minutes.
So when I stay home (I live alone) I avoid both of those triggers which cause the worst symptoms. Then I can almost think I’m a “normal” person but then as soon as I go out to a store or back to work, it all comes back again. It’s very discouraging but I’ve come to expect it.
I’m interested that Dr S said taking a lot of time off (3 months, e.g.) is a good idea to try to ‘cure’ the problem. I have enough sick time where I could probably do that if I really had to. But I’m mostly functional (very few people even know I am sick) so I’d feel like a fake if I did it. Also, would it really work, I wonder? Or after those months off, we go back to work and all the bad symptoms re-appear like magic??? (like bad magic!!) :?
This is definitely giving me something to think about and I hope more people will answer this thread w/ their thoughts and/or experience on this. I haven’t taken a full week off work in years, but if there really is merit to this theory of Dr S’s that time off work is a good thing (as long as we keep busy), I very well may take …if not months, certainly a few weeks off in the upcoming months. I have never considered it, but I am strongly considering it now. I want my life back.
Hi all, thought I’d share my experience of working with MAV.
Firstly I totally believe that working in a supportive and fulfilling job can make people a lot better.
Whilst I had 6 weeks off work at the beginning (pre diagnosis when I was confined to laying flat in bed) eventually I forced myself out of bed, went through the hellish feelings and made myself go back to work. Despite being very difficult, horrendous even, I believe I would not have got any better worrying at home.
I worked shifts when I was first diagnosed with MAV and was in a stressful, public facing job (despite actually enjoying the job itself!). Dr S told me I had to stop working shifts if I was to get better and completely reduce my stress. So I told my boss and he referred me to the Occupational Health department who agreed to me not doing shifts anymore. I also had some time off sick again (I don’t think it helped me but that’s not to say it wouldn’t help others) but sadly I found the minute I returned to work so did the stress. This on top of unsupportive colleagues (angered by my time off) made me worse again. In the end I changed my job and am 100% happier, unfortunately that was the only way for me to start to improve.
If I were to provide you with any advice I would say that it is so important to make sure you have some supportive plans in place for when you return to work because you don’t want to go straight back to square one particularly if you love your job and don’t want to leave. Maybe you might have an Occupational Health department or supportive HR department that could be able to make ‘reasonable adjustments’ for you?
Bit of a controversial comment maybe but whilst at home I also find I have to try and limit the time I spend on internet MAV forums/Facebook groups because whilst they can be of great help and relief too much thinking about MAV and worrying about this symptom and that symptom and “she’s got this” and “he’s got that” can also make things worse!!
I’m into my 10th month off work and since being diagnosed have used the time doing everything Dr S said I need to do to get better. And after 4 months I’m starting to improve. I was told it will be slow and I would get worse before I get better. I was also told we have to allow time for the brain to heal and re-learn all the things that have been disrupted. It will take 9-18months, with the majority of people getting 70% better in 9 months. So there’s no quick fix.
In my short experience of this disorder one thing I have come to realise is that it is a very individual disorder with regards to the severity and variety of symptoms. The treatments seem to be tailored to suit too. So you don’t know what will work for you until you try and try and try again.
I have had to accept that at the age of 49 my life has been put on hold and having never suffered from headaches or migraine, I now have this rare condition for the rest of my life. So my life will not go back to how it was before. It will just be different from what I imagine.
I loved my job, it wasn’t stressful but was physically demanding and I had to be fit to do it. So I will not be able to do that anymore and have been offered something with lighter duties when I’m well enough to go back. I’m fine with that because my health is more important to me now.
I have really struggled with work since this started in 2010. I have been on 4 medical leaves from work which I hate. So tired of fighting them. The job I have is just really bad for someone with this condition. Have really felt like I’m between a rock and a hard place for a very long time. I went back to school last year and I am taking pre-requisites to hopefully get into graduate school. I really want to get into another field where I’m not exposed to the constant triggers I have no escape from in my current job. I felt like school was my only option, because all of my training and past jobs have been for the career choice I can no longer do.
Hi and thanks for your experiences. I just wanted to clarify: Dr S didn’t advise time off work for everyone with MAV, it was only in regard to my situation of working 60 hours a week with no work life balance. If I was in a less demanding job it might not have been an issue. If only I could find one that would still pay the mortgage.
I was off for 5 months total. When I went on medical leave, I had no choice but to go - if I didn’t, I probably would have wound up in the hospital. I don’t regret it for a second.
