Does FND Hope provide anything like this? We see them on the walls of waiting rooms for every other condition?
I have just had the most devastating experience of this condition so far. If I didn’t need counselling before I will now.
I am hormonal and this is a huge trigger for me. Yesterday my seizures went From staring to thrashing. It was the worst experience of my life. When people hear I have Crohns they say oh that’s such an awful condition. Yes it is but FND and NEAD has now topped it. This yesterday was worse than anything I have ever experienced with my health and completely out of my control.
Sometimes when I try to walk and I’m tired my leg jolts up and down like a tremor stamping the floor out of my control. Like extreme shivering. I was lying on the sofa and it started in my arm and soon it was through my body my jaw and neck and head also out of my control. My teeth were smashing together. I know what’s going on in my seizures although my memory can be wiped as time goes on.. I just can’t communicate. I tried to use a frozen ice pack to do the grounding thing but it made it even worse. (As is what happens if I suddenly walk on cold floor in bare feet) I tried counting backwards from 100 in my head all these things make it even worse. The harder I try to stop it the worse it gets - I know this is typical of FND.
Each time it settled if I tried to move sit up or use a limb it would start shaking again and set the rest of my body off in short episodes.
I know A and E is not the right place to be. I know it is a case of resting and I think is my bodies extreme response to fatigue.
But in circumstances out of my control and because I only usually stare and become disorientated this had never ever happened to me before the poor people around me were understandably absolutely terrified and concerned about a head and neck injury and my safety- an ambulance was called and because there had been a change in my symptoms - I was taken to a and e. It is normal for me to lose my speech after my normal seizures and so I could not communicate.
The ambulance crew (who didn’t know me) were outstanding as was the Dr in A and E saying I need a full neuro review.
The crew even took the time to read up on FND - but when I got to hospital I was poorly treated by the assessing nurse on arrival, then shut in a room on my own by another nurse with no support around me to help prevent me hurting myself (my hand was even violently slapping my own face and my foot was cut from hitting against the bars of the trolley - luckily Even though I was aware I must be really hurting myself at the time I had no pain at all and I promise I couldn’t stop it) - a senior nurse (and a former colleague and I once considered a friend!) aggressively cursed me pulled up the sides of the trolley and said “Well if you throw yourself on the floor then you will be getting yourself back up won’t you.” Shut me in the room closed the door and walked out. Im mortified. These are my ex colleagues who I thought would know me better than that.
I know others of you who experienced seizures have experience so much worse treatment and poor judgement than this and because I have read the book compiled of those experiences I tried to remain strong knowing I am far from alone.
Part of me never wants to leave the house again now or be brave enough to talk about FND again - but the fighter in me knows things happen for a reason and I am determined to change this. This can’t go on. It just can’t. If that’s how they treat one of their own (although I have had good experiences too with my vacant episodes) what chance do the rest of you stand. Even if they considered this to be ‘put on’ or purely a mental health crisis ... that patient still deserves compassion and made safe. Fair enough put me in a room in my own that’s great but put some blankets and padding around me to make me safe first No one would do that to themselves.
Im determined to focus on the many people who tried their best and were understanding but I’m determined to turn this into a positive I’m determined to make changes and if there were an information poster that could be put up in a staff room, neuro waiting room, doctors waiting rooms maybe it would be another thing to get some more understanding out there? ... does this exist FND hope?
I won’t give up. I will make a rainbow out of the rain. We are all in this together xx
Thank you for listening I feel better now I’ve got that off my chest.
Hi. Been there myself many a times in A&E - the degrading treatment is shocking. FND Hope UK does have posters. I think another reply gave you the contact details. However, that involves you having to get your local hospital to put them up, but you sound up for a fight. I've just won my complaint against my GP Practice for how they treated me when I had a seizure. Took me a year to get it but there's no way I'm going to be treated like that. Stay strong. Cheers Lou
I am so sorry you have had similar experiences Lou - Luckily I have many very understanding pro-active colleagues who have been really grateful for the information and learning about FND - I am confident I can get this to happen 👍 with flyers at ambulance stations and GP surgeries too.
I am horrified at how you were treated - but then I have seen how shoddily my husband was treated when he had an epileptic seizure - he started screaming 'I don't want to die' (fear of impending death is one of his symptoms). Oddly having him do so opposite the Sister's desk resulted in him getting an apology once he was back to being aware and in control.
I just looked on Wikipedia to see what instant info was available on NEAD - it redirects to Psychogenic non-epileptic seizures (PNES), which is bad enough. Then after reading through I found this: 'PNES may also be referred to as "non-epileptic attack disorder" or "functional seizures," though those terms do not clearly indicate a psychological origin and therefore include other (non psychological) causes of epilepsy mimics.'
If this is the type of information available to medics unfamiliar with NEAD it could be the underlying cause of this type of treatment. They thought it was your fault - archaic concept that it is. (I am concerned how your ex-friend would treat someone who turned up with their drink spiked - would she treat them as a victim or as though it was their fault?)
I hope you complained, with photos of the injuries your seizure caused while in their care. We need to find an expert neurologist with the time to redress the Wiki page (anyone can edit the pages but we'd need an expert to give the correct references etc to stop the page reverting to it's current entry).
My husband has suggested you try to volunteer with the patient forum for 'public envolvement' this links patients with the CQC (UK only). You get to speak to Governors and Matrons. The Hospital my husband got involved with appreciated a patient rather than a political group getting involved. With the bonus that having a Matron address you politely by name does wonders on how you are treated as an inpatient.
I am so sorry to hear of your husbands experiences also and I agree with your concerns over my treatment and how are others treated.
I have raised a complaint and I will be doing everything in my power to use education to put a stop to these appalling mis-judgments.
I am so glad you highlighted what I have been thinking about the information online about NEAD. As with other symptoms of FND triggers for the seizures seem to vary too from person to person.
Mine are so obvious being fatigue, heat and my period every time! When you put disoccociative seizure I think it’s the nhs site under disoccociative seizures the way that it describes it ‘someone may disoccociate as a way to avoid dealing with something’
So to a random person it could imply it can be controlled if they really want too mind over matter etc when in fact myself and my partner had a lovely morning I had managed to take the most steps in my garden I have in a long time with my walking frame went out for lunch got home and because I was tired heat hormones (a perfect storm I guess) and prob pushed myself a bit too much - my leg started tremoring and then my arm and that was that in seconds my first full body shaking seizures. One after another on and off for 5 hours.
It is very misleading info online for everyone experiencing these seizures whatever their triggers or conditions physical or mental health which cause them to experience this horrible symptom.
The volunteer public involvement forum sounds like a great suggestion thank you very much I will look into this. Thank you for taking the time to provide me with this info.
Have you been evaluated for fibro? Those triggers mimick my fibro flares. I discovered that my own non-epileptic seizures were the result of my fibro. I guess being in pain all the time can stress the brain out and cause this.Prior to this, I also had an FND diagnosis.
I started treatment with low dose naltrexone (LDN) and my symptoms drastically improved. It was expensive because I had to see a naturalpath, and my insurance doesn't cover it. But it gave me my life back
Hi thank you so much for thinking of me and taking the time to post this - I am so glad you have found a treatment that works for you that is brilliant ;0) ... I haven’t ever been investigated for Fibromyalgia but I don’t get any pain whatsoever and as far as I’m aware that’s a main symptom? I also can sleep for hours without a problem! The hardest part about the fatigue thing is although I feel tired it doesn’t sound anything like the tiredness those with M.E or chronic fatigue have where you physically cannot get out of bed and the fatigue is disabling ... it’s more of a fatigue that if my body wasn’t doing its own thing I’d just ignore it and try to carry on. So mentally I feel like I could do things most of the time but physically my body just doesn’t function properly and then every time I do then try to do something the tiniest bit more - like With the physio and practicing my walking ... it’s like my body protests a few hours later my symptoms get worse again. It’s so frustrating but at least I have found one consistent solution - is just lying down and resting. It’s just sooooo boring though and really frustrating!Thanks so much ;0)
It was prescribed for the fibro. But by taking it, my migraines, untreatable IBS, and FND all improved. I did some research and LDN apparently can help FND as well.
Wow I am so so happy for you I understand what it’s like to find something that works for you from living with crohns for so long and when you find it you hang on to it like gold dust ;0) well done! Xx
I’m so furious on your behalf I cannot believe how you were treated. And as you say, by ex-colleagues! So how bad would it be for a stranger to them? It just shows how little has changed with how people with mental health conditions (or what are erroneously believed to be so as in this case) are treated, especially by professionals. I have unpleasant memories of that in my past. I’m sure if I told people now they wouldn’t believe me. But that was several decades ago now and I guess I hoped things had changed. But I guess not even Prince Harry can effect that great a change that soon. Please report these people. Please. (The issue here being, the amount of energy needed to do so!)
I hope you are feeling better now. I’m so sorry for what you experienced. As if what you were going through wasn’t bad enough.
Bless you - I completely agree thank you. I’m so sorry for your unpleasant memories and bad experiences too.
I feel like I’ve been put through a washing machine and I can still hear the noise of my teeth smashing together in my head and the noise I was making like someone was shaking the life out of me. How someone could even ‘put that on’ I have no idea.
This behaviour has to and will stop and I will make sure of it. I’ve never been more determined. There has to be a reason why I had to experience that and give up my career I loved so much. I was always taught to be my patient’s advocate especially when in such a vulnerable situation.
Now I’m going to bottle up all that experience good and bad and use it to make some serious changes.
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Specialist in FND
FND : NOT a Functional Etiology - another step in the right direction
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Stay Positive, Keep moving, and don't give up, there is life in being diagnosed with FND.
