hello all, my daughter has been diagnosed with Fnd seziours in Uk.
Little information given other than it’s not a medical emergency so don’t call for ambulance. I am looking for helps to prevent and what to do during. So I can write a plan of action for school, friends etc
They don’t happen when I am around so don’t know much and her memory is always poor after, with gaps in time.
Also has anyone been treated with B12 injections and did this help? I have read a lot about B12 diffidence and wonder if B12 injections can help
thank you in advance for your help.
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Lowbattry03
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My daughter began having non epileptic Seizures and other FND symptoms during covid. She accessed cognitive behaviour therapy which was helpful but she did her own research online in groups with others suffering. She decided to stop eating foods with processed sugar and had an immediate dramatic reduction in Seizures and severity.We think it's because processed sugar is an inflammation causing food and it was triggering higher inflammation in her brain.
When she has relapsed and eaten a high sugar processed food she has had a Seizure afterwards so its pretty conclusive .
She now has very infrequent Seizures and they are not severe anymore, she is finishing a diploma and going to Uni this year hopefully .
Vagus nerve stimulation also seems to be effective in reducing brain inflammation caused by fight or flight stress response, it's been trialed for FND seizures and been shown to be effective. Google it for research and ways to do stimulation or VNS devices available. Hope the sugar tip helps
Sorry to hear about your daughter I get B12 injections and it hasn't helped me but you could still see the GP to check if your daughter needs B12 injections.Take care.
Thanks for reaching out on behalf of your daughter. I am not impressed that you were not given more information to share with her school etc. If you were not given a treatment plan I would contact your MP and ask them to look into it since this keeps happening and puts too much of a burden on patients/parents.
I would certainly ask your GP to do some vitamin and mineral blood tests to see if your daughter has any deficiencies and a hormone panel might help too. One of my contacts has a relative with non-epileptic seizures and he is doing well via an exercise program which has reduced the frequency and severity of his seizures. Would you like me to ask her who his specialist is? It sounds like he has a really good medical team who know their stuff
My pleasure. I've heard back from her but it is her cousin's son who has the seizures so she will contact her cousin to find out who his consultant is and then get back to me.
Here's what my contact just sent via one of her family members. We need to respect patient confidentiality so I've taken out the name of the young man concerned. I also don't know what ARI stands for but figure you'll be able to find out via your GP.
'Rebecca, delighted to try to help. Sadly, we didn't think the clinical support was that great. [Name redacted] did get an immediate diagnosis from ARI Neurology through A&E but no follow up. Our GP has been supportive but didn't have prior FND experience. However Lesley Kay at Spear Physiotherapy was excellent and [name redacted] also rated his session with Lindsey Beedie at the Beedie Clinic (both seen privately).
Murray Smith is the lead consultant liaison psychiatrist at ARI. Although [name redacted] didn't see him, he would still be the clinician to try to see if they are going down that route.'
My contact (Rebecca) is one of the founders of The Rare Revolution Magazine so if you or your daughter ever want to write about your experiences, they may be able to help with publication. I hold her in high regard I hope this information helps you and your family xx
If you go to the FND action website, they have a handout for their 'Inform the Dr' campaign; |You could download it and send it to the school ..maybe with some personalised addenda?
Sorry to hear about your lack of support. It’s all too familiar with FND sadly.
I get FND seizures and one of the triggers is sugar. Sugar is a stimulant that rapidly increases blood sugar but then wears off quickly and subsequently drops the blood sugar rapidly which causes the body to go into a stress response. Adrenaline is then produced by the body to try and stabilise blood sugar, which causes a seizure.
Thank you for explaining it to me like this, makes so much sense- did think food and blood sugar had something to do with it because she gets so hungry after seizure.
Do you also avoid sugar, as in the form of carbohydrates?
Dr Chris Palmer (USA) claims to treat many 'mental' disorders (which he reclassifies as metabolic disorders) with the ketogenic diet ..that includes his own previous disorder too. He has written a book called Brain Energy ..haven't read it mind and as yet not tried the diet .. but then I don't have seizures.
Hello there. I can't help with if B12 makes any difference, but I have FND and take daily B12 supplements in the form of gummies. (Due to being vegan.) The are delicious and taste like a sweet so it's always the first think I do in the morning. I regularly have bloods taken and get them to monitor my b12, which is high so I know they are working. Maybe that could be an option for your daughter?
It must be awful for your daughter, I can't imagine what it would be like as a teenager. I would suggest you explain to her close friends aswell as medical and teachers about what fnd is. ...... often described as a software rather than hardware problem.... brain getting the wires mixed up and sending wrong signals to the wrong parts of your body. It can be stress triggered too, and she is obviously around g.c.s.e. age which can make things harder. I would try and keep a diary of what is happening wen, and how she feels day to day so that she can learn to foresee when she is building up to another fnd flare up. For me, I can feel my eyes feel different and tiredness and weakness can also mean I am needing to be extra careful and rest rest test to try and hold the attack off.
It helps that I have a rest everyday after my 2 hr cleaning job before I do anything else. Either sleep or laying down with eyes closed for an hour if not. Maybe a rest after school as its a long day for her and her body with fnd?
Try and make sure she has people she can open up to. My husband paid for councillors with experience of fnd but that's upwards of £50 per time, and I found them patronising and they just kept asking "how does that make me feel" at everything which i couldn't get on with. I have close friends i am able to talk to whenever I need though, and I think anyone is fine, along as your daughter is comfortable doing so, as it's easy for thi gs to consume you and your brain turn thouse worries into the physical (fnd flareup). My parents shut ne down when I tried to talk to them about what was upsetting me and wanted nothing to do with it and that still eats away at me now.
I wish I could advise and help you more. Please carry on doing all the research you can as there is such little available on FND. It sounds like you are a very loving support for your daughter.
My last advice would be to make sure everyone treats her as she is when not in flareups, as it can be easy to treat people with fnd as the permanently disabled person even when well.
I would advise to look into a disability card (sunflower lanyard) for if you ever need to make accomodations and keep onto of things, it depends how much it affects her life, but when it is very bad she may be entitled to pip. The sunflower lanyard if kept in her bag at all times would also detail her condition and symptoms and your telephone emergence contacts etc for if she was ever in a situation where it happened and she was on her own for whatever reason.
I wish your daughter a speedy recovery and hope it is something she will not have to live with for too long.
One other thing, if she regulates herself by addressing any signs beforehand (ie suddenly getting hot, use a cooling towel/ice roller) she may be able to stop a seizure coming on but it takes time to find out what works best. Likewise, if she feels her heart racing a bit faster than normal, a sign she may be getting anxious (quite often its all at a subconscious deeper level), get her to stop what she is doing and go somewhere calm and comforting, a cosy corner, a weighted blanket, some scented candles etc).
Worse case scenario, get to a safe space/lower herself to the floor, accept it, let it wave over her.
Hi over the years I have learnt a lot and seen how this external focus (with added sensory input) can work. Shimmyaway just shared an article and I have been diving into the references and found this:
However, I want to bring reference to what it says about seizures:
Using Mind-Body Strategies to Manage NES, Pain Exacerbations, and Panic Attacks
In their daily psychology sessions, children learn regulation strategies for managing NES, pain, panic attacks, and other somatic symptoms (34, 35). When these symptoms emerge, the physical therapist will ask the child to implement his or her preferred strategy. Once the child has become settled, the session is resumed. For example, children with NES will lower themselves to the ground and implement a regulation strategy—as per their safety plans—when they notice their warning signals.
In high-risk cases, the child may need to wear a helmet while moving from place to place, until the child is able to demonstrate an improved capacity to recognize an approaching NES
Sometimes, she does not know her triggers, and they come on randomly. Sometimes she goes unconscious and losses time and has poor memory of events, other times she just collapses and is fully aware between seizures other times he just collapses is not able to walk for a period of time with no seizures, she presents in many different ways.
And she recovers in different ways too, somethings her body comes back before her mind/memory other times it the other way round and she feels trapped in her body.
It’s horrible and scary to watch, she is so brave.
Not good, my son experienced the "drop attacks" clearly overwhelmed (subconsciously) by the thought of going to school and psychology will be my next suggestion after his mocks (don't want to overload CNS).
Sound like you will have to deploy different strategies for dealing with each type of seizure.
This type: "other times it the other way round and she feels trapped in her body" sounds like a dissociative seizure, does she experience an aura around her, have a glazed look it her eyes. Sometimes its the people around her that can notice little signs before this happens (but not always).
Is she at school now? My son has managed one day this year, first day back and picked up a virus and a whole array of symptoms followed to the present one today.
oh dear, hope he feels better. Yes she is doing her GCSE’s and is fighting for normality- and yes her friends can tell sometimes because she looks spaced out and sometimes she sways before she collapses, they have also described her a appearing drunk, she gets giggily and can’t walk properly - sometimes not all the time. And no she just feels unwell or nothing at all. She has never been good at discribing how she feels. So this is quite hard for her. Hope your son gets better soon.
Thanks, you too. I think its very brave to be in school, despite falls, my sons falls were at home but they usefully followed with injury, so helped back into bed and attended to injuries (initially it was panic and A&E visits).
I downloaded and screenshot this from Re-Active free resource, another example, you could pick and choose elements from each plan that would help her.
I think the most important takeaway is try to regulate before and regulate after. You say she is swaying, would a weighted neck wrap given to her (by her friends) help ground her or a tangy sweet (just a couple of examples of sensory tools).
Also adding an element of fun in external focus techniques could help, laughter is a great medicine.
Lowbattry03, greetings. When I read your post, it brought tears to my eyes. I cannot even imagine what your daughter is going through at such a young age experiencing this.
I began presenting with the FND seizures March 2024. I was thankful they started while I was actually at an appointment with my GP, and my neurologist at the time was on the other wing. Out the gate, I had three of them back-to-back. It was concerning with my hitting the floor the way I did from a sitting position while still recovering from hip surgery due to a fall I had experienced because my legs gave way.
For your daughter, make sure she is able to distinguish those days where she is just simply not feeling well at all. I have noticed for me, any time I really do not feel so great (and it's an overall feeling of just not being up to par at all - even a bit shaky), it is evidence that events may be on the way.
Because my then neurologist (who was my 3rd) did not feel able to manage what was going on with me, but QUICKLY RECOGNIZED the condition, she referred me on to my current neurologist that specializes in movement disorders. She was so super sweet by telling me it was NOT my imagination about what was going on - I have stuff all over the place. She even confirmed the FND at that time, which made me feel better after 20 yrs of craziness going on.
What has helped me with the bulk of my symptoms has been the physical therapy. The key is getting to the RIGHT group for the specialized therapy that is needed...I drive 1.5 - 2 hours in one direction. It gave me a great deal of my confidence back, it truly does something to you when people see your body convulsing out of control. My events are never just one, the maximum so far has been 7 in a row.
For me, an immediate trigger for events include anesthesia of any type. General is the absolute worst, so any outpatient procedure becomes an automatic inpatient affair. When visiting the dentist, the gum numbing can actually trigger the beginnings of an episode.
For the B-12 recommendations, I take methyl-B12 with folate every single day. I have for years because of other weird neuro things that take place in my hands. The biggest thing is most do not realize there are different types of B12...methyl is the best version for me because it is all natural (methylcobalamin). The standard B12 most are given is the cyanocobalamin - which is synthetic and has a derivative of cyanide.
Overall, find her a therapy solution center that specializes in brain and neurological disorders. They will spend the entire visit with her and will not bounce from one person to the next during the visit.
Did you know that FNDHope have posted a request for participants in a survey that is looking at seizures in young people with FND, with a view to getting some idea of what parents would like? It is at ais.swmed.edu/redcap/survey...
I appreciate that you already have a heavy burden taking on being your daughter's best friend and now therapist too .. filling in the gaping holes in the NHS. Glad you are feeling more 'topped up' from the help on here.
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