Please help! FND - what has helped you?

[Sharon75]

We are at our wits ends trying to find answers/help for my mum's various FND symptoms. Some very odd - see below.

Her condition is so severe she can barely move or even eat and has chronic insomnia. It feels there's no help for her - she's under the care of an adult mental health team. Although I am sure they're doing their best, they are clueless and making her feel worse.

I'd love you to share anything that has helped you - with your FND in general or any of her symptoms below. Medication, therapy - anything.

Thank you for reading.

Sharon x

*Severe tinnitus (words repeating themselves, all kinds of noise, booming, ringing, screeching)

*Severe pressure in head on movement or lying down (so she sits still on sofa every minute of every day without moving)

*She describes a 'strong beat/rhythm 'controlling' her every bodily function - swallowing, breathing

*Difficulty breathing/swallowing

*Difficulty walking or moving at all

*Lack of cognitive function - unable to read or write

*Shaking/tremors

*Difficulty emptying bladder

*Insomnia

*Worsening depression/anxiety

[Crypto127]

Get out from the care of mental health or at least get under the care of a neuropsychiatrist. Try to get a referral to a physiotherapist to start tackling some of the symptoms re balance and walking regardless of whether the doctor sees the issue as mental health. And a urologist for the bladder retention. Don't try to tackle every symptom at the same time. Concentrate on the most disabling or if that is too much, concentrate on areas where gains can be made. Personally I'd stay away from psychological therapies and multiple prescription drugs. Good luck.

[Van604 in reply to Crypto127]

I could not agree more. My condition got worse under a (Freudian) psychiatrist because he was convinced I had "conversion disorder" and kept pushing me to do things my body didn't want to do. Haven't seen him for 3 years and I've improved a lot. I have similar symptoms and find that anything that calms the nervous system helps: massage therapy, quiet surroundings, being in nature, reading, steady breathing, staying away from loud/aggressive people! It's trial and error, and really listening to your body. Getting enough sleep is absolutely key for me so I sleep whatever time of day, and for as long as I need to.

[CreativeBird]

hey Sharon

So sorry this is your experience. I’ve had FND in flares since I was a child. This 3 year flare so much worse. Only just diagnosed early this year. So I have been forced to find self help. The main “first aid” is to somehow help settle your mums nervous system by:

Guided meditation/YouTube has plenty of free ones, over good headphones

Breathing and mindfulness. Search Plum Villiage and (mind spelling) Tich Nat Hahn

Emotional Freedom Technique EFT. The Tapping Solution

Somatic therapies like Cranial Sacral Therapy

If you can get her into a car and to a beach or dry river bed or even a sandpit, walking in deep beach sand. Resets my pro perception sensory load.

Then look at neuro physio and good psychologist. I’ve been working with Marianne Howard from Phoenix Psychology. She’s recognised for her work with war veterans.

FND is traumatic in its self so trauma recovery is paramount to bring her out of disassociation for the most part.

Blessings

K

[ginganinja]

hi Sharon, I am successfully being treated with medical cannabis oil and flower on a private prescription.

This treatment up/down regulates all the neurological signalling that is misfiring and helps with my swallowing/speech issues, seizures, mobility, muscle spasms, fatigue, cognitive processing and sensory overload.

It’s a private prescription so have to pay for consultation and prescription but no other options with NHS.

My clinic is sapphireclinics.com/

This medication along with the therapies mentioned in the replies should improve quality of life.

[tinygianthuman in reply to ginganinja]

CBD with THC (not over the counter CBD oil) is the only thing that seems to settle my tremors / nervous system too. A friend sent me some gummies in the post from Canada, but I also believe there’s somewhere in Glastonbury where you can get it if your doctors won’t play ball. I’m going there today so can let you know how I get on if that’s helpful?

[ginganinja in reply to tinygianthuman]

All the appointments with highly trained Neurologists and follow up appointments can be done by video call and the oils are tailored to your requirements with consistent blending of cultivars of plant.

[tinygianthuman in reply to ginganinja]

oh wow, that sounds wonderful. I’ll definitely go and see (my main concern is how expensive it might be?)

[ginganinja in reply to tinygianthuman]

30ml of oil is £160 and flower is approximately £6 per gram.

that’s cheaper than street supply and its consistent cultivars which is the most important part.

If you sign up for Sapphire Access Scheme to share your medical details for ongoing research it’s the most affordable.

[EJ3939]

hello Sharon75 along with all the other recommendations. as a sufferer myself whos life has been turn upside down and still not able get the care i need. Make sure your mother feel loved & that people around her are kind, understanding & reassuring. Make sure she feel secure, supported and safe. It a very difficult journey to navigate with little understanding from the outside community at large. I hope you find the right services for her, the suffering she endure can feel unbearable at times. Best wishes

[bookish]

Hi Sharon, what blood tests has your mum had done and have you got copies of the results? B vitamin testing is very poor generally and getting all the Bs working right could well improve those symptoms. They should at least have tested vit B12 and vit B9 (folate) but serum tests alone cannot rule out a deficiency. What you need are her full blood count (like RDW, MCH, MCV, haemoglobin etc), serum B12, serum folate, then I would hope they would have tested homocysteine, possibly MMA (methylmalonic acid). Also useful to know what her blood sugar control is like (HbA1c for starters) and her thyroid hormone levels.

Important to know that you can have a cellular vitamin deficiency at any level of serum and testing is not straightforward. Many doctors still mistakenly are trained to think it is. There is no definitive test and you have to look at the whole picture including signs and symptoms and family history (any B12 deficiency, Pernicious Anaemia, other autoimmune conditions?) B12 and folate metabolism are strongly genetic and even genetic testing cannot always find the reason for the inability to process correctly. (That is what I'm having done, hoping to find reason for long family history).

If your mum already takes a multivitamin or anything containing B12 or folate (usually in the form of folic acid) then that will make her blood tests harder to read.

Do not let anyone give your mum a folic acid supplement alone, it is really important to treat any B12 deficiency first, then add the folic (or better, folate) after a couple of weeks when you know the B12 has started the folate cycle working. (Lack of B12 means you can't break down folate so it builds up in an unusable form and the symptoms you get are those of folate deficiency. Adding synthetic folic will just increase the amount of unusable folate.)

Don't give up and don't be fobbed off! You may need to do some private testing if you really can't get anywhere, but look at results you already have first. Cheers

[Sharon75 in reply to bookish]

This is interesting bookish - when the symptoms started (almost 2 years ago) my absolute gut feeling was it was B12 deficiency. I suffer from B12 deficiency too with no obv caused (I have a really good balanced diet) and suffered bad neurological issues until it was treated (and like you say my blood results suggested 'normal').

We are trying to get her off Lorazepam dependency first but I def think its worthwhile getting private blood tests for this (to test for active B12). Thank you!

[bookish in reply to Sharon75]

Hi Sharon, sorry to hear you are dealing with this as well as your mum, and that does make it more likely. My Dad, his mother, her mother and two siblings, their mother, me and my cousin's daughter. Can't be coincidence! Diet is all very well but we have to be able to (a) absorb and (b) utilise at cellular level - and clearly some of us fall at one or more of those hurdles. Active B12 testing can find people that a serum B12 test may miss, (such as those who have had nitrous oxide, which inactivates a good chunk of your active B12) but still doesn't catch everyone, neither does homocysteine/MMA/anti gastric parietal cell antibodies/anti intrinsic factor antibodies. The whole lot can be 'normal' and you still have a deficiency.

It is interesting that you say 2 years ago - was this post covid or post vaccine/s as both (and other viruses or vaccines, not just covid) can affect one carbon metabolism - meaning you have a greater demand for B12, folate, B2, B6 etc but can't meet that demand. Circumstantially I am hearing rather a lot of people are now getting a diagnosis, possibly due to an underlying B12 deficiency which hadn't been diagnosed before, getting bad enough to push them over the edge. Stress alone depletes nutrients and can hit your B12 hard, particularly for those of us who do not process well so do not have those large stores in the liver that people bang on about, and cannot make them.

If you have a genetic hiccup, it may be more likely to show as raised homocysteine or raised MMA, and it is possible to test a full panel privately but not cheap and don't have the £ so not tried it. privatebloodtests.co.uk/col.... Medichecks offer a Pernicious Anaemia test. Superdrug online doctors used to offer a B12, folate and intrinsic factor test but site says currently unavailable.

Getting off the Lorazepam sounds like a good plan, especially if it has been a while. You'll see that it can deplete B6, B12, folate etc optimallivingdynamics.com/b....

Are you having to self-treat or did you find a doctor who would treat with in range bloods - injections or tablets? If you found someone, might be worth pointing out that B12 metabolism is 60% genetic and get your mum to see them. Once you are treating it is likely that the homocysteine and MMA will normalise, but they can take significant time to do so, so still may be worth testing.

Best wishes

[Paddoodlz]

Hi Sharon...so sorry your Mum is going through this...first off she should see a neuro psychiatrist., when I saw one it was a game changer. FND is NOT a psychological issue. For the swallowing issues she should see a speech pathologist as they hrlp with both speech and swallowing. For movement I saw a chiropractor that practices the activator method...he got me out if a wheelchair! It took a couple of years but I got a bit better after each visit. Also a physiotherapist...if you don't have access to one I know that fnd hope has chair yoga exercises virtually uou can access. The other thing that can help is see a naturopath. All of these things combined have helped me. It is ot an easy process...I am 8 years in with this. I hope you fid what works for your Mum.