No delt we have all asked the same question, what have I done wrong to be like this , everyday I feel like I'm going to hit the ground with my dizziness, up to march of this year I had a lovely job in a care home but now that's going to have to go because of my health, the care home can't make my job safe , now I'm waiting to see occupational health but I know the out come of that anyway. I feel useless to my family specially my wife because I can't do the things I could before my illness.
My sleep apnea is bad and waiting for my results from the hospital I could sleep and sleep its not very nice .
But why me I've done nothing wrong to anyone I just want my life back .
Written by
Littlecook
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I hear you, Littlecook. Some vestibular/neurovestibular conditions have a genetic factor but there hasn't been much research into this, unfortunately, so 'why me?' is a good research question, for sure. Motion sensation symptoms (dizziness or rocking, bobbing, swaying and gravitational pull) are very common symptoms but it is often women who get these symptoms so they are understudied and the research there is into these symptoms is underfunded. They are known to be isolating symptoms and can have a negative impact on our quality of life, including our careers and family life. VeDA (the vestibular disorders association in America) might be a good source of information and support for you and I like the Life on the Level group in the UK too. Family members can find our symptoms hard to understand and may be unsure about how best to support us so advocates usually advise family members to watch some of the content from VeDA etc to get a better understanding of unmet needs.
I'm sorry to hear about your work. I'm also sorry that the consultant I asked for a recommendation for you for someone to diagnose the cause of your symptoms didn't reply to that part of my email. However there are good 'dizzy docs' out there so please ask your GP to find someone for you since you may respond well to treatment, once the cause has been found. Sometimes people do have to change the type of work we do as a result of the symptoms and that often turns out to be a good thing to do. Occupational health may be able to help with social prescribing which can be hugely beneficial. Keeping my fingers firmly crossed for you that your GP can help you find someone get to the bottom of your symptoms.
Thank you for taking the time ro reply to my message, I've asked the care home if anyone can help me with counselling also thay are asking about occupational health. I seem to have more bad days than good I was trying to sort out my tomato plants yesterday and almost went head first into them don't think would of done them any good or me lol .
I also received a call from pip yesterday who's arranging a video call because of my dizziness the gentleman who called was very pleasant and helpful lucky he knows about FND so waiting for the call he did say he was hoping it would be soon for me , and wished me good luck .
Same with me, I’ve never been vaccinated and mine is proposed to be caused by a motorcycle accident followed by an untreated TBI and overall trauma to my system
hi there littlecook I’m sorry you are going through this illness its hard there are so many aspects to it your work life ,family life the daily struggle when they just no answers, I lost my job through illness and my mobility can relate so much with family in time I just expect the changes which is hard I’ve not give up I just don’t have good days ,it’s just how it is , it just so hard but in time i except bit more and it has helped me ,I’m sure there are people who totally disagree with me that is ok everyone different, like the other message about the dizzy symptoms with a gp who knows more and can help I don’t get them symptoms so I don’t know, take care all the best
it was something that one of your replies said about vaccines I didn’t have vaccine, i hear what your post was saying can relate to the family and work, I’m 45 I had to deal with a lot mental health issues i couldn’t leave the house for 4 years and had to work so hard daily timing my self in seconds to stay on each pavement of back garden ,I. Have not had a drink in 7 years , but this illness this fnd that no one heard of hardly the doctors have no answers your just left with a diagnosis and that it , I get annoyed when I read people are doing marathons , going travelling there so active and I can’t even lay in bed have lived on floor with pillow because of the pain , everyone’s different when people say don’t give up hope you can do this ect , they have no idea what I am going through i hope you get to see the right person for your dizziness sorry to go on look after yourself
I have been on this FND journey with my son for a couple of years now and it can be tough all the waiting, not knowing but I have learned a lot along the way.
Currently fine but school holidays but I do think my re-actions haven't been the best but hindsight is a wonderful thing. So although he never acknowledged being stressed/anxious (perhaps low interoception) his body has responded that way, so once he realises that, then together we can adapt techniques to help.
Have you tried using a weighted vest to help ground you.
Maybe, a loved one could place a chair by your tomato plants so you could tend to them sitting down.
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FND diagnosis - What now?
crying seizures? Neurological pain all over?
Increased Symptoms with Stress
