Functional Neurological Disorder - FND Hope
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Can FND be life threatening?

Hi everyone!

My wife Kim has had Spams in her throat on 2 occasions.

2 years ago, and this morning.

What happened this morning was that we was both in our local housing office having a meeting, explaining to them how Kim needs a 1 bedroomed Bungalow due to noise issues in our present flat with neighbours.

We have, after 3 years of fighting, managed to get Kim eligible for a 2 bedroomed adapted Bungalow.

However, the waiting could be years and Kim can't put up with all this noise we are experiencing and we want out ASAP.

She is 39 and our local housing have age restrictions on Bungalows.

50 for 1 bedroomed and 55 for two bedroomed ones.

They have lowered the age on the 2 bedroomed ones on the basis that it has wide door access, but as I've mentioned, the wait could be years.

I'm trying my hardest to convince them that a one bedroomed Bungalow can fit Kim's wheelchair through, as our own flat doors already does, whenever her symptoms make her go in it.

They will not move, and are offering her a 2 bedroomed, lower ground apartment, that has just been built.

My constant argument is that noise above aggrevates her symptoms.

Sorry to digress, but what happened in the office this morning was this:

during our discussions, somebody dragged something nearby the office and the scraping noise made Kim's leg spasm and as a result, this made her neck lock, which then made her throat spasm, causing difficulty breathing.

I calmed her down and got her spasms under control, but it scared me big time, despite my calm exterior.

My heart went out to her, but the people at the meeting, including her rehousing medical officer, still wouldn't move on my argument that noise aggrevates her condition, despite seeing the evidence in front of them.

They keep saying a one bedroomed Bungalow is too small and wouldn't eliminate noise issues.

That's a cop out to me and red-tape and putting her in a lower ground apartment will make her on edge.

Do you think FND can be life threatening, especially when it affects the throat?

This has happened twice and I'm wandering how you cope with it and how your spouses help you when it occurs.

Also, moving into a lower ground apartment will make us lose our housing application altogether and Kim's highest medical award, which took us so long to get her.

Do we stay where we are, with Kim's symptoms going worse and wait years for an adapted Bungalow, or take a gamble with this apartment and risk Kim's symptoms still being made worse by noise above?

My head is swarming and any help would be appreciated greatly or any advice from people in a similar situation.

Many thanks.

Loving wishes always

Tony and Kim Xx

6 Replies
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Hi Tony,

Am sorry to hear what is you and Kim have been going through. I do not know about throat spasms, having is never experienced them myself.

I am a sufferer of FND myself for 6 years now. To be truly honest though I think it has been harder on my wife and our two sons then on me.

I to go into spasms when am startled by loud or unexpected noises. Is no fun for sure. I also am in a wheelchair. Fortunately for me we own our own home so we do not is have connected walls or ceilings with anyone.

The best thing for us as a family has been to try to stay as active as possible, and for myself to stay happy as possible. I work really hard at not is to be to grouchy at my family.

Again as far the throat spasms go I don’t know, but I did want you to get know you are not alone in this struggle.

Sincerely Casey Merritt

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I don't think neck spasms would be life threatening, no, although it is going to be very scary and feel like it is something horrible happening (just like panic attacks can feel like you are having a heart attack and NEAD seizures feel like an epileptic fit and are just as terrifying). Underneath though, all the body's systems are functioning as they should, which is why the neurologists can test for and find these 'positive signs' to tell them we don't have structural neurological issues.

Has your wife been referred to a neuropsychologist ever for support in dealing with her symptoms? Unlike neurologists they can help to come up with strategies to cope with and lessen the impact of the things that trigger FND attacks and given that you seem to have a clear trigger pattern that might be a useful way forward.

It may also be quicker than waiting for council bungalow. They won't be kidding when they say years. I worked in Council housing for 20 years befor eI got ill (heading up 3 different Housing departments in my time) and waiting lists just got longer and longer. Demand for adapted accommodation always far, far outstripped supply, and of course it isn't as simple as how long you have been waiting - every time another household is made homeless whose situation is deemed more 'in need' than yours then they will get given higher priority, even if you have been on the list for ages.

So you might be better off taking the apartment and seeking treatment targeted at the noise trigger. At least knowing what that is and what it does you would have something specific to work with - many with FND have no idea why their symptoms flare so in that respect you have a headstart! Best of luck with it all.

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I had similar again only 3 nights ago. I have NEAD as well as FND, but when I have attacks my neck, throat and tongue does go into spasm. It's a horrible feeling and the fact my tongue twists and turns and begins to block my airway scares the hell out of me. If I remember rightly aren't you guys Manchester based? If so, ask your GP or neurologist to refer you to Salford Royal. I'm due to start a 4 week treatment course aimed specifically at NEAD, then after that I'll go back to the neuro psychologist for a 12 month block of treatment aimed at helping deal with the condition, my anxiety and depression before going back to a psychiatrist for EMDR treatment for my PTSD. Hope that helps some.

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Hi Tony and Kim,

I am sorry to hear you are still struggling with these issues.

The ground floor flat might not be as bad as you think. If it is a newly built block, the sound proofing between flats might be sufficient and it may be worth asking them for extra information before you tell them no. I would advise asking to view the flat in the evening when tenants will be in the flat upstairs so you can gauge noise levels. Also enquire with them about having extra sound proofing installed on the ceiling. You may loose a little ceiling height, but it could make a big difference to noise levels and make the flat suitable for Kim. All the work could be paid for with a disabled facilities grant so you won't be out of pocket and you could get everything in place before you move in.

I know it's not a perfect solution, but it may well be better than waiting years for a better property to become available.

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Hi Anne,

Thank you for your reply.

The apartments are brand new so no one has moved in yet.

They have mentioned soundproofing but I still maintain that they can still soundproof a one bedroom Bungalow if they wish.

Kim feels very apprehensive about people above because that scenario has kicked off her symptoms before.

If, and I know if is a big word, it caused problems once she moved in, her medical priority, which is the highest and took me 3 years of fighting to get, will be lost and we have to reapply all over again.

People are saying fight on, and my heart says the same.

We will look at them Anne and they have mentioned soundproofing, if they get the funding, but I still feel that they are trying to corner us into making a quick move.

I can complain, via 3 stages to go through and then it's the Ombudsman level.

Having seen Kim's reaction to noise yesterday should make them realise that a 1 bedroomed Bungalow will be sufficient instead of a two.

Best of wishes Anne

T&K xx

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I truly feel for you. Neighbour noises are enough to drive most people to the brink of madness. And a word of caution: i spent over 6 thousand pounds insulating the ceilings in two rooms and was promised a ' significant reduction' in sound coming from avove. Bollocs. Money down the proverbial. Yes, If there is a thick carpet plus underlay on the floor above you, the footfall noise is indeed dulled and possibly slightly reduced. But screams etc are hardly muffled. Children jumping (and they will jump) seem to shake the whole construction. And then new neighbours moved in....they stripped the floors and the noise is sharper than ever. I dont have to tell you what it does to one's nerves.... Even without the fnd. The flat is late victorian so the ceilings are high enough for about 15 inch insulation material. It was done by an acclaimed professional firm. But, as someone already pointed out, these very new buildings do tend to have better sound proofing so the downstairs flat maybe ok for Kim? I must say I have lived in flats and houses in several European countries but nowhere was sound proofing as inadequate as it is here (Scotland).

Best wishes, hang in there.

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