FND paralysing me frequently- struggling jobseeker

[vika15]

I live alone and I'm in a terrible state.

Does anyone have self-help ideas?

I keep having attacks. A few times I went to hospital, other times I didn't.

aw gets locked Sometimes closed, sometimes open Can't speak when this happens

Lips get jammed can't speak

Neck gets locked, can't move at all

Arm gets locked, unable to move

Legs get locked, unable to move

Blurred vision and dizziness each time

Tongue thrusting makes me feel choked.

It can sometimes be harder to breathe because the tongue feels like it is blocking the airway by feeling longer/ popping out of the mouth.

The mouth locking happens the most. Blurred vision and dizziness always happen. The other ones happen sometimes.

My arms and legs shake for hours at a time after an attack.

Triggered at night time the most but can happen at other times too. It can stay like that from 2 to 12 hours or so.

[Jofisher]

If you live in the U.K. you need to get an urgent assessment from social services and explain you live on your own and your at risk due to these attacks. I would also speak to your doctor and tell them how vulnerable your feeling and how at risk you are. Are you getting benefits ? If not you need to apply for them if you need help and your 50 or over contact age U.K. or contact to the C.A.B. For help with doing this. There maybe other help out there for you as well it’s just I don’t know your situation well enough sorry but start there first.

[sodepressed in reply to Jofisher]

I don't rececive benefits. I thought I wouldn't be eligible. Also, I haven't been given any paperwork to confirm my diagnosis, was only told by the doctor, so not sure if I will be allowed benefits.

[sodepressed in reply to Jofisher]

I am 32 and live in London. I've been feeling incredibly distressed since these symptoms started but it seems like the NHS cannot do much to help me?

[Jofisher in reply to sodepressed]

Have you been to see Professor Mark Edwards at St George’s in Tooting if not ask for a referral to see him as they have an inpatient service that can help it’s just seeing the right people. Good luck Professor Edwards is absolutely lovely you will really like him and he’s extremely knowledgeable and more importantly Non judgemental and don’t take no for an answer your entitled to see the best people for this condition. All the best on your journey and your Among friends here that understand.

[sodepressed in reply to Jofisher]

I asked for a referral but my GP instead referred me to a general neuro clinic which does not deal with FND! She refuses to do any more and told me there's no treatment for FND.

[Brokendeer]

Hi this I would say was not typical for FND, particularly as you say it happens mostly at night and lasts up to 12 hrs.

I am assuming you have had Spinal Consults to check your muscular skeletal system is aligned properly and no nerves are being pressured by say damaged vertebras or discs?

There are conditions that cause paralysis type symptoms and are mainly due to biochemical imbalances in the body. An Endocrinologist would be the person to see for most of these.

Have your blood tested for Thyroid Levels, Cortisol, Adrenaline and Antibodies, Lyme's Disease, Wheat Allergies (preferably during an attack or immediately after when levels are likely to remain high) - this should confirm if any major imbalances are present. The Cortisol test can be done in Hospital for monitoring of symptoms according to my friend with POTS (Positional Orthostatic Tachycardia Syndrome).

As for during the attacks:

you must try and breath as regularly and normally as possible and avoid over exertion and panic.

Distract your mind from the terrifying symptoms by focusing on;

5 things in the space you are in

5 colours or objects

5 smells

5 sounds.

This should help reduce any Adrenaline `Flight, Freeze, Fight' overloads.

If possible, de-escalating an attack with a sip of water, this will convince your body it is not in crisis.

I personally find not staying in one position or undertaking a task too long, singing, going through song lyrics in my head during blood tests or scans all helps.

Before seeing any further Neurologists or Specialist Consultants:

Make a timeline list over a month; of when the attacks occur & for how long, how frequent, what you were doing or eating before the attack and try and pin down what triggers them. And if something you do actually improves or shortens the attacks.

If you are on medications:

Check these for muscle weakness side effects or if diuretics get your electrolytes monitored for salt depletion. It is a fact that something as common as Statins can cause these very symptoms in some people.

Good luck,

Look for the calm in the Storm!

[sodepressed in reply to Brokendeer]

My doctor said it is FND so I'm not sure what to do. They haven't been able to help much in the NHS so I'm not sure what to do. Other things like thyroid and hormones were fine in the blood tests, but other tests that you mentioned were not done. I will start making a diary to record everything. I have had brain and neck scans to check for other issues.

[Brokendeer in reply to sodepressed]

Hi I do not live in London, but did manage to get my GP to gain NHS Primary Trust funding for me to go for Neuro Multi-Disciplinary Inpatient Rehab in London ,which is the only thing I was offered to help my FND and manage my daily symptoms.

This involved therapies of Cognitive Behavioural Therapy (CBT), Neuro Physio, Occupational Therapy and there was a Psychiatrist available if needed. But honestly, I only gained insight into FND by being with the other diverse symptom FND patients in that Rehab group at the time, learned more of what they believe are FND brain issues and learned to pace myself better.

I genuinely think you could get most of these therapies at Outpatient Clinics- being in London itself. Whether it would help you is another matter?

I found this informal book the best help for me:

Living with Physical Disability and Amputation Paperback – 1 Sept. 2009

by Keren Fisher

Do not let the title put you off, it covers pretty much all the Rehab topics I did and more helpful goal setting and Mindfulness techniques in my opinion.

The other official formal book recommended at the Rehab was this one:

Overcoming Functional Neurological Symptoms: A Five Areas Approach: 5 Paperback – 26 Aug. 2011

by Chris Williams

Note: I never had the typical symptoms of FND as described on this website neurosymptoms.org/en_GB/

Yet still ended up with a diagnosis of Motor FND. However, none of my fellow patients had any paralysis symptoms; numbness, weak muscles, rigid muscles/dystonia like episodes, spasms, tremor or non-epileptic seizures seemed to be dominant.

Look for the calm in the Storm!

[sodepressed in reply to Brokendeer]

I have paralysis everytime and it's terrifying. I also have seizures but the paralysis is the worst. Thank you for the recommendations. My GP didn't even refer me to a specialist clinic, only a general neuro clinic, and told me that they have already done the best that they could do for me, so it's all about self-help for me now.