Dizziness with FND.

[LEEJUNFAN]

Hi everyone!

My wife Kim was in A&E yesterday because she has been feeling dizzy the past few days and she has had episodes of this previously, but on this occasion, whilst at my Mother's, she got up and just went down.

They checked her heart, did blood tests and checked her BP, and all was fine.

They did say that her symptoms are most probably FND related and also that the stress of living in our flat with idiotic neighbours contributes also.

We are on the list to move into a 2 bedroomed adapted Bungalow, of which we've finally won the fight for following 3 years of letter writing to some important people.

The waiting is the hardest because we cannot wait to move and I've sent another email yesterday to our Councillor asking her to ask the housing if they can move us quicker.

She's sent an email so we have to wait, and she's been incredibly helpful in our fight, as she knows Kim personally.

Sorry to digress there, but how many of you suffer from dizziness and do you have any advice.

I make sure she's well hydrated and eating greens but her Iron is ok.

The dizziness is horrible.

She had an eye test done last week, which took longer than usual, 2 hours in total, and I'm wandering if the lights and flashing could have brought this dizziness on.

Many thanks for all your help.

By the way, I asked the A&E Doctor about FND, and he did say that more people are being referred to Wythenshawe Hospital with this, so it seems that this condition is definitely on the increase.

Loving wishes to you all and thank you.

Tony & Kim xx

[Newsteps]

Dizzy spells and being off balance like bot having sealegs are a massive part of it im affraid. I've found when it happens i need to ground myself. That may be me either just touching the side wherr i stand or if in a shop, the shelving just til balance etc comes back/ passes. Neuro physio explained it as the brain gets unsettled and unsure of it's surroundings and needs to ground itself if that makes sense to u both x

[DNE92]

Hi I’ve whole body seizures but can also suffer from being dizzy. I take cyclizine . I got it ages ago from my previous excellent GP because I suffer really badly with travel sickness - planes, trains and automobiles! If I get up on a plane to go to the loo I go down the cabin like I’m p***ed out of my face.

Hubble keeps wanting to take me on a cruise- he swears that his friends say it is like being on land. But even when we drive our car onto the ferry over to my home in Northern Ireland as soon as we put a wheel on the loading ramp I feel dreadful.

Cheers

Lou

[roguebeagle]

I suffer from blackouts a little more severe form of the dizzy factor in that I fall without warning. My doctors haven't said FND yet. I was diagnosed with FND for severe memory loss a year ago. Doctors are ruling out all other possibilities, neurology, pulmonary, and now I am seeing a cardiologist. Sigh. Long process when you are constantly getting injured.

As for suggestions. Slow down. Especially when rising and sitting, even walking. Don't take sharp head movements, turn quickly to look at someone for example. And, the hardest one, keep stress to a minimum. Even if it means going to sit in the park or coffee shop away from what stresses her.

I wish you both the best of luck. We often struggle with the worst but know that strength is what gets us through. She's a strong lady and it will get better. Dont give up the fight!!

[DMA1664]

Hi guys,

Firstly, I saw a great neurologist named Dr Murphy at Wythenshawe hospital. The report he has written is very in depth and shows that he actually listened. He has referred me to see a neuropsychologist named Dr Antonia Kirkby at Salford Royal as she is very keen on treating those with FND and PTSD as in my case. It may well be worth asking for the referral. It is a long wait at 9 months, but it's worth a try.

I too suffer from periods of dizziness. It's awful and feels like being being spun around until you're near sick. I'm not sure whether it's my eyes as well as they feel as though they tremor slightly and the eyeball itself is actually sore to touch. If/when it's bad all I do is either sit or lie down and try to control breathing or listen to some meditation. It works sometimes but not all.

Take care of yourselves.

Dave

[cgarff]

Hey Tony, I agree, Kim has had enough. Dizziness is no fun that is for sure. I think since this all started for me, oh my gosh it just hit me.. it has now been 9 years ago.. yikes, I don't remember having any dizzy problems until this last year. Besides a time where medication caused the dizziness, just on its own, I think I have had around 5 times give or take where just out of the blue the room starts to spin, and I need to hold on to what ever is around me. One of the times being this last week. I think the worst timing for one was last March when I was on a trip heading to Ohio to go to a conference on FND, and I was waiting in the airport in line to get a rental car (Alone!) and the room started to spin. All I could do was stand there and pray that the line didn't move, and hold on to my suit case for dear life. Fortunately it went away pretty quickly and I was able to move up with the rest of the line, get the care and drive safely to the hotel.

I feel horrible she is having those now. Your not alone Kim! ( Ooops, I just remembered I need to send you pics too!)

Cheryl

[cgarff in reply to cgarff]

OH, OH, OH, I just remembered, my little brother is a doctor, and he had told my daughter when she stands up and gets dizzy to do the following. Hopefully this will help everyone out.

First, move your bum to the edge of the seat you are in. Then take your legs if you can and move them up and down like you are marching. This gets the blood circulating in your body again. If I remember right, if you have been sitting a long time, the blood doesn't circulate correctly after a while, and when you stand up automatically, it messes things up. So if you can sit there, take your time, march your legs and get up slowly, don't rush, it should help to keep more of the dizziness away.

Hope that helps

Cheryl

[Blue80 in reply to cgarff]

You're still allowed to drive?

[cgarff in reply to Blue80]

Fortunately for now yes. I dont know what I would do if I couldn't,

[Blue80]

I try and stand for a little to focus my eyes and then try and sit as quick as i can. I suffer with blackouts and have done since 09 but only diagnosed with FND a year half ago.. and begining of this year being helped with all my new symptoms that have arisen along the year's slowly, that my neurologist has just blown me off with they are non epileptic aswell as being epileptic, but I suffer with low blood pressure that is not as concerning as high to them though. With you by her side help her stay strong because her world will fall apart unless shecan deal with it herself. Everyone different.