Two Years On - What Treatment?

[LilyMarshell]

Hey all,

So, I officially got a diagnosis for PNES - FND back in March 2023, after what we realised is 19 years of misdiagnosed, mistreated, and ignored symptoms.

I'm coming up to a year with an official diagnosis, and I'm realising that this is it. This is just my life now.

I'm consciously having up to 35 seizures a day; around 10 of them are what I call majors [Tonic-Clonic and Atonic Seizures], and the rest are minors [Absenses and Partials]. I say consciously because I can't keep track of some absences - I usually only notice them if I'm watching something and there's a time skip or if I'm talking to someone. And, of course, this also doesn't include the ones I have in my sleep [when I do sleep].

My pain levels are an average of 7/10, but I'm not allowed painkillers because the UK doesn't treat chronic pain with painkillers anymore [because they're not a solution, therefore not allowed - which is BS, but that's politics stepping into medicine for ya].

My fatigue is almost always an 8/10 nowadays, but I have insomnia, so my body is tired but my mind is wide awake, and I can't do anything about it [I was given a Melatonin prescription back in March 2023 by my Neuro but my GP is refusing to action it and the Neuro discharged me so I can't go back to him...]

My Neuro sent me to psychology because "it's a purely psychological condition" which is rubbish to say the least.

Psychology themselves said it isn't purely psychological...

They offered me one-to-one counselling for 10 sessions, which is all they could offer since their other offer was anti-depressants [which make my seizures worse].

I told them I don't need the counselling because while I was waiting to see them, I found a counsellor to work with, and since I can't have two - I refuse to give up the one that's reduced my night terrors for someone who might just treat me like sh*t [a common experience of mine as a queer disabled person in the UK...]

They then suggested a FND lecture - three sessions - that was supposed to be helpful. But I can confirm it wasn't. It told me exactly what I already knew and went on to put all the blame for the condition onto the individual, as well as suggesting we shouldn't be asking for medical assistance anymore because our condition isn't medical...

That was session 1, as you can imagine - I did not go back.

I'm lucky that my partners are able to support me enough in order for me to get my private therapy because it's expensive [even though I found one of the cheapest in the area], but if I hadn't - would this be it?

Do they just drop us off like this? Is 10 sessions of CBT, anti-depressants, and 3 lectures really all that's offered?

I'm in chronic pain, fatigued, but can't sleep, and their solution is to get me to talk about it.

The main kicker for me is that I'm apparently "refusing treatment" by saying I no longer need the lectures... Even though they have all my psych notes from my therapist...

How can a lecture be classed as a treatment when it's literally a group of people being told "not to get too stressed" while being shouted at? Only for the lecturer to also refuse to answer any questions about the condition - which I find kind of hilarious because they seemed clueless as to what we deal with.

I need pain relief, sleep support, and mobility aids - I'm in a wheelchair when I leave the house, but I'm not using one that is designed specifically for me because I've had to buy it out of pocket since my doctors think it's perfectly safe for me to try walking in 7/10 pain and fall constantly.

I just... I feel like we get the diagnosis, and then they just drop us off in the deep end and expect us to swim?

Is this it?

I apologise for the rant.

It's a nightmare trying to explain this to people who don't experience it, and sadly, I still live with my parents [also disabled but in different ways], who refuse to acknowledge that I am disabled... When people ask if we're a disabled household, my parents respond, "Well, myself and my partner are disabled. My daughter is also a bit iffy." Surprisingly, my parents invalidating my disability really doesn't help my disability [sarcasm].

My partners are trying to help me move out because we know I'll be better off without them, but it's difficult with the current economic climate... I can barely afford to live now, let alone if I moved out.

Anyways, that's enough - far too much, honestly. If you've read this far, I'm so sorry.

[210272]

Hi LilyMarshal,

First of all, please never feel the need to apologise to people here when you need to vent and/or get your voice heard. Since you are in the UK I would contact Dawn at FND Hope UK since she has helped to created a pathway for people with FND in the UK and may be able to advise you regarding how to access good services whilst avoiding the suboptimal services.

If you or one of your partners has enough spoons I would also consider leaving feedback on Prof Stone's self help site and/or contacting the FND Society so they get a better understanding of the day to day issues you are experiencing and start making the necessary changes (including to the lectures) so that no one else has to go through what you've been through and are still going through. If you want a response from them I would specifically request that it comes from someone in your demographic IE queer and disabled. I still don't know if FN(C)D and/or PNES is considered rare, but if it is I can also highly recommend The Rare Revolution Youth Magazine as a vehicle for raising awareness, telling your story and highlighting the clear gaps in your care.

I would also highly recommend googling the work of Dr Catherine Carlson about FNES/PNES (I posted one of her papers in this Hub fairly recently) and she is usually quick to respond to email correspondence.

[Louiselovesyellow]

I’m so sorry to hear all of what you’ve been through. It does all sound familiar to my own findings but thankfully not all the time. Some people believe me. For 1 - my GP does prescribe pain relief for my chronic pain - I’m on diclofenac 75 MR twice a day, Butec 15 patch which I change once a week and Tapentadol 50 which is a slow release opioid with a pain relieving element. I took so many painkillers and diazepam tablets for the pain one day that I could have killed muself! Since then they’ve been helpful with meds.

My parents are doctors and think if I just try, I’ll get better 🙄😔. Old fashioned views. There’s a campaign on FND Hope website near the bottom of the page called ‘lnform the doctor’ but it might help your parents and doctors understand that they are incorrect saying it’s psychological. That’s frustrating. I feel for you, I really do.

I hope you can get somewhere with the up to date information on FND in educating those around you. Take care and good luck. Louise xx

[Dexter27]

Hi LilyMarshal,

Firstly, what a warrior you are and don’t apologise for the rant! Your situation sounds horrendous and I feel deeply for you. I’m a fellow FND sufferer but although it turned my life upside down 3 1/2 years ago, I have luckily not had any pain with it.

Secondly, it sounds like you have come into contact with a lot of people that don’t know what their talking about and these negative opinions are neither helpful or comforting. I also wish your parents could acknowledge that you do have a disability as again it sounds like you need more understanding to help you through this difficult time.

Unfortunately, my experience is that there is nowhere near enough help out there for FND and far to many Drs who know next to nothing about it. I personally decided awhile back to accept that and to find out as much as I could and keep trying different ways to combat it myself.

May I respectfully ask, is there anything you have found that helps you in anyway ?

I only ask as I do have a few suggestions but I don’t want to sound patronising in anyway and to be honest, it’s the first time I’ve ever replied to anyone on any kind of forum LOL!

I was far too angry 2 years ago to even read what others were saying, I was told it would help me to know that there are others going through similar experiences but for me at the time, it just didn’t.

I feel slowly but surely, I’m beating FND. After not being able to walk unaided for the length of my front room, there are now some days I can walk to my local shop (about half a mile) I still have fits but they don’t last anywhere near as long as they did and when they do happen, I just accept them and don’t fight them in anyway (again before I would get so angry and would often get up off the floor just through sheer anger only to collapse in a heap seconds later). I’m telling you this because I believe you can get to a better place and in answer to your question….. is this my life now, my opinion is no, you can get to a better place.

I’m glad you have your partners, it sounds like they do give you support, it’s so important to have positive people around you. You only need positive people around you.

If you want to post again, I’m more than happy to reply again, maybe I can help, if only a little.

Keep going ,

Kindest Regards

Dexter27

[Lady4]

Rant away, we are hear to listen and not judge, everyone is entitled to the same standard of care which is pretty poor nowadays sadly.

Sorry to hear you having such a hard time, I am guessing they did an EEG to rule out epilepsy and I can imagine how exhausting that amount of sezures can be.

Have you got it in writing what the Neurologist prescribed, if so I would go above your Dr.

Its hard when loved ones dismiss your disability/struggles which seems kind of strange as they surely must have witnessed more than one.

I googled PNES and noticed that there is no real helpful suggestions and it seems if you are so fatigued that they should expect you to sit through lectures.

I know with FND drop attacks, you can sometimes sense them coming on and maybe try and distract yourself but with one after another, thats sounds a difficult task.

Have you tried any relaxation techniques to sleep, playing nature sounds music or any meditation. Think the most important thing is to be kind to yourself, it sounds like your partners are a good support network.

Take Care x