FND Help! Please

[PurplePotter1]

Hi, This is my first post as I'm not sure where else to turn.

Why wife was diagnosed last year with FND, her symptoms started when she was being treated in hospital for pneumonia and sepsis.

She started had non epileptic seizures. Sometimes she has a warning but a lot of the time they are sudden and random.

She has had cbt and emdr therapy but has finished those now. We had been getting back to normal, she wasn't feeling stress or worried and was happy, looking forward to plans we had made and then randomly has one which brings us back down to earth.

She has now had 3 in 2 weeks and this last one she has banged her head, the one before she came don the stairs.

We don't know who to talk to, as no professional knows what it is. We don't know what we can do to manage this or prevent them happening.

I would be so grateful for any advice on how people cope with these or whT they do to improve things. I'm constantly worries and she is getting physically hurt.

Thank you.

[Brian1977]

What other symptoms does she have my wife had a few turns where it was like she was having a stroke couldn't control her legs or anything it wasn't nice to watch but she has other symptoms now too she was diagnosed with fnd last year then pots this year

[PurplePotter1 in reply to Brian1977]

She does haven't really have any other symptoms, when she comes round she can't move for a while and has trouble speaking, normally she sleeps for a while after and is just tired. She says she can her me talking to her but can't respond.

[Brian1977 in reply to PurplePotter1]

It's awful when you don't know what's going on and draw a blank with medical staff we had a nightmare before diagnosis first neurologist said it was just migraines but we went to see a private one and he diagnosed her with fnd. I hope you get to the bottom of things 🤞🤞🤞

[PurplePotter1 in reply to Brian1977]

I have been looking into seeing a specialist, she is just worried about being poked and proded, she had so much last year she can't handle much more. Thank you for replying. I hope you and your wife are doing well 💜

[MelMcGrath2020]

Male sure you get a good Neurologist who specialises in movement disorders. When I have a turn, it looks as though I’ve had a stroke. My last hospital stay was almost 7 weeks in rehab learning to walk, talk and use my left arm and hand again. That’s when I was finally diagnosed with FND. We figured out that my symptoms started when I was only 12 years old. I am now 51, diagnosed 4 years ago.

I wish you and your Wife the best. Xx

[kev60]

Hi and welcome , FND is a disorder that you have to learn to manage yourself, find / get referred to Neurology. I have dissociative seizures according to neurology (I look as if spaced out) where I can see and hear everything but just cannot move . Used to happen maybe once a week but now 1-2 times a month. My wife is my carer and I have to have her with me for safety. I hope you find the answers you need. Kevin

[PurplePotter1 in reply to kev60]

Thank you for your reply, is there anything specific you have been doing that they are now less frequent?

[kev60 in reply to PurplePotter1]

Hi, not to sure why they happen less now. I think because I had to learn to walk again which is only 65% of normal ( I walk like drunk and steer right, so roads are an issue and my wife has stopped me going into the road). I feel it maybe the fact I had to retrain my brain ( to walk, talk and think), walking has improved as has talking but still having problems with memory and thinking. So as I was retrained my other problems became lessened . my neuro-physio told me that when I could not walk I was using my brain to actually think about walking and used 75% brain power to walk instead of it being automatic, this meant that i had less brain power to use on other things like talking and thinking. I have had to learn what I can and cannot do and my life has changed a lot as I can no longer work and I have found I am restricted in what I can do physically and mentally . I hope this helps. now I have written this it makes more sense to me . Kevin

[FND-wife]

My husband was diagnosed w FND in 2019. It began with dissociative seizures, and then evolves to a range of symptoms that would cycle in and out. His current symptoms include intense dizziness (PPPD), loud ringing in his ears, neck stiffness & pain, chest pain, non-epileptic seizures, poor memory, depth perceptions issues that make even 1-2 stairs challenging, and difficulty swallowing. Eating seems to trigger some of these symptoms. He also has headaches, anxiety and depression that are thankfully largely ‘medically managed’.

Because my husband has fallen while alone, we now have a caregiver who is with him while I am at work.

So, how to manage? A few things seem to help for us:

1) An excellent medical care team that is either knowledgeable about FND or open to learn - this includes neurologists, a psychiatrist, and a therapist - and open communication as symptoms evolve.

2) CBT (cognitive behavioral therapy) - not a cure but a management tool.

3) A strong family & friends support system.

4) Embrace solutions that help - for us, medications for mood management and headache management, acupuncture, and a motorized wheelchair that helps my husband to be much more independent.

5) Close attention to non-FND conditions (for my husband, this includes a heart condition and diabetes).

Wishing the best for you and your wife!

[PurplePotter1 in reply to FND-wife]

Thank you for your advice, I'm trying to find professionals that know about fnd! The GPs don't seem to know anything and the last neurologist we say at the hospital asked me what fnd was so it hasn't been a great start! X

[Shimmyaway]

In the past the keto diet was used for patients with epileptic seizures (now replaced with medication). I know FND seizures are not epileptic, but you have nothing to lose in trying it out , as we know solutions to fnd symptoms are thin on the ground.. not to mention the medical attention.I have every sympathy for your situation... best wishes.

[Louiselovesyellow]

I would say you need an urgent referral back to neurology, if you can get one. Clearly the things they’ve asked you to do are not working. Has she tried any anti epileptic medication? Perhaps suggest that to the GP and see if they are receptive to it. I really hope you manage to get somewhere. I paid privately to see a neurologist and then a neuropsychiatrist as it was during Covid time and waiting lists were insane. If you have the money, it’s a good way to move things forward. Good luck xxx

[Shimmyaway in reply to Louiselovesyellow]

I did not find neuropsychiatry to be of any use .. I was never 'seen' but was offered ( via the phone!) 6 sessions of useless FTF talk therapy with a less than committed occupational therapist. What did your neuropsychiatrist offer ..and was it helpful?

[Hidden]

Your wife is experiencing a reoccurance of non epileptic seizures. This same thing happened to my family member. We thought they were improving only to go through the same symptoms again and more. There was no apparent stress but looking back there was life decisions on the horizon that were looming causing pressure. Subsequently a referral was made by the GP to a specialist unit; Rosa Burden Centre Bristol awaiting inpatient treatment of 3 weeks. I myself had counselling as the stress was overwhelming.

[Razzle165]

Your wife needs to see a seizure specialist who is aware of FND issues. She can try taking Amitriptyline, it's supposed to help suppress the nervous system. It seems to help me.

[PurplePotter1]

Thank you to everyone who has replied to my post, its been a rough days. She has had cbt in the past and more recently she had emdr with a very good therapist. I'm finding it hard to take my eyes off her as I don't want her to keep getting injured especially as she ended up in a&e yesterday. If anyone knows the name of a specialist in the UK who I could speak to that would be appreciated. She is going to the doctor today to ask to be referred back to neurology as we have moved house and our local hospital has changed, in the hope they may be able to provide a plan. The last neurologist left us to our own devices. It's a shame that the help and advice isn't readily available and if you want more you have to pay for it.

Life just isn't fair for those going through this, i wish you all the best on you and your families journeys. I wouldnt wish this in anyone. X

[PurplePotter1 in reply to PurplePotter1]

Also to add, she was given anti epileptic meds but they didn't help, they changed her personality so she was taken off them. X

[Hidden in reply to PurplePotter1]

My family member saw Prof Mark Edwards in London. It cost hundreds of pounds and although he was thorough, he wasnt able to give out any more help and suggestions as anyone else.

[PurplePotter1 in reply to Hidden]

I thought that might be the case with some others I have been looking at, mostly suggesting CBT. Thank you for letting me know x