Hello I’m Dr Aisha Tariq, a Clinical Psychologist who specialises in treatment for FND. I hope I can provide some advice or suggestions for people who might be struggling to get support once they’ve been diagnosed with FND. If you have any questions that I might be able to answer, please message me 😊
Psychology: Hello I’m Dr Aisha Tariq, a Clinical... - FND Action
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Hello i was diagnosed with fnd back in febuary 2020 i have had physio that has helped my standing and walking and ive been referred to a neuro physio but havent seen any yet, and ive been left at a loss as I cant find a neuro psychiatrist . I want to go back to work but as its a job that includes admin and driving, although doctor has said i can drive if i feel ok to, im not convinced as i still have vacant moments and and have fallen due to my body paralysing. Ive had an mri recently and that was clear of tumours of any thing bad.
I just want to feel normal again and get back to work, do you have any recommendation that could help me?
Hello. There are a few things that might affect your day-to-day life at the moment. Were you prescribed any medication? Were you given any guidance on how to manage the problems associated with the FND symptoms? By that I mean anything that might be making the symptoms worse. For some people this could be stress, pushing their body too much or issues from the past that they haven’t addressed, or any number of problems. It’s difficult to know what path is best for you without knowing you, but I would definitely suggest going back to your GP and pushing for a referral for your specific needs. Have you had a look at neurosymptoms.co.uk?
Hello
Why is it I’m always so tired....
My joints ache, I’m having many NES and I’ve been told that I just have to get on with it as the wait for group therapy is a 12 month list if not even longer now because of COVID-19....!!
I’ve tried using a work book but I’m getting confused and anxious.....
Help please
Hello Parrot74. From a psychological understanding, we know when NES happen our body is trying to tell us something. It can be difficult for us to work that out without a bit of help from someone who has a different perspective. The confusion and anxiety you are experiencing is very normal and I’m sorry you’ve been left to it. Have you been in touch with other people who have a similar diagnosis as you? It can be helpful sharing experiences of what helps and doesn’t with people who have been where you are now. NES is a very isolating condition but it’s important for you to know you are not alone.
Thank you.....
What about the fatigue
I sleep so much and am seizing when I go off to sleep...!!
You need a ‘reset’ button and for someone to help you figured out why your body is so exhausted. We often recommend keeping a diary for a couple of weeks of what you are doing during the week and this often helps us spot patterns with when the fatigue and NES increase. It might not be during a time of stress or anxiety, but the symptoms might happen after these periods. There are biological explanations for this that are important to understand if you are to make changes to move on. You need to speak to someone who can get to know you and your triggers and what is keeping it going, as well as what happened for them to develop over time. I sincerely hope you get the help you need.
Thank you so very much
Hello. Could you please give a link to the study that explains the biological explanations? Thanks
Hi Parrot74, I have been dealing with FND since Dec of 2008, I had many times in the past when my doctors would just move me aside, and say you just have NES with your FND. They happened more often when i was going to sleep or during the night, than during the day, but i would have them at any time, any where from 1 all the way up to 43 times a day. I finally complained so much when they couldn't find anything on a normal EEG that they finally did a 3 day vEEG or video EEG. That is when my neuro finally came back to me and believed that there was something more going on. I was diagnosed with NES AND Epeptic seizures. We had to play around with many different medications to get things right to calm things down to a manageable level. I am functioning so much better now than I was just 2 years ago. Don't stop trying, if you can get in to a therapist of any kind it helps. However find the right one for you, don't settle. They can help you to find better ways to deal with stress, anxiety etc that could be causing these problems. Just remember to not give up!
Hi
I’ve been diagnosed with FND and NEAD since last October.
I’ve been having multiple seizures and also blackouts recently every day and increasing paralysis and dissociation of body parts. I also experience chronic migraines, pain and fatigue.
I’m struggling to cope with my education and have already taken time off but that increases my anxiety.
I’ve been diagnosed with multiple MH conditions for 5/6 years and it’s thought my trauma and anxiety has caused these seizures.
Despite medication and some treatment I’m struggling to manage my condition and it’s massively impacting my daily life causing my mood to plummet.
Is there anything you recommend I should be doing ?
Thank you
Hello Bee_x
It sounds like you have seen someone who has completed an assessment and said that the trauma and anxiety is the cause of your functional symptoms? If so, did they recommend treatment for this? Were you referred anywhere? As a psychologist I would say the way to overcome or at least manage your symptoms would be with treatment from neuropsychology. Do you have access to this?
Hi
Yes I’m currently having EMDR for trauma and have been receiving therapy for my other mental health issues for several years also. However even tho I’m working on my PTSD I am having seizures randomly which don’t seem to be related to anything. For example if I’m tired sometimes or have a migraine that increases my likelihood of having a seizure or other symptoms yet that has little to do with my trauma. Other times I’ll just be going about my daily life and have a seizure or suddenly lose feeling in parts of my body. I do think it’s important to continue with my therapy because it is helpful to talk about my past history however I don’t seem to be getting anywhere with my seizures despite therapy and medication. I’m really struggling to manage them. I’m due to start a neurology group for people with seizures and other functional symptoms but that’s been delayed because of COVID but I have many important future decisions and personal things going on and I really want to be well and in control for this.
That’s great you are getting help for the mental health and I hope this will lead to long-term healing and improvements in your life. In the short term, looking at ways to manage the day-to-day symptoms might be useful. It sounds like the neurology group will help with that. If you message me with your location I can try to find out what is available just now? There might not be much out there but it’s worth a try!
Bee_x, has your neuro played around with your medications? I know with my seizures and migraines etc I had to do alot of trial and error on both of our parts to find the right medications, and levels as well. Some make you too sleepy, some cause the migraines, some can cause hurtful tendencies towards yourself. I went through so many. I f in nilly found some where I dknt get the migrains any more, and have really lowered my seizure attacks greatly. Don't be afraid to speak up if they are not working. Best of luck
Thank you
I have actually suggested changing my migraine treatment as i finally realised that was causing a lot of side effects. Hopefully by next week I will be on a different one.
I’ve started another new medication too (ahah so many sometimes it’s confusing!)
Hopefully as I change them and get them to adjust doses it should help.
Thank you so much for ur suggestions and advice 
I have recently been diagnosed with FND and would like telehealth appointments with someone who can provide strategies to retrain my brain.
I really wish doctors would stop assuming that this disorder is due to stress or past mental trauma. I had a stroke like episode when I was reading and on my bed relaxing. The hospital did many tests and found nothing so they said it must have been a traumatic event or I’m stressed. The right side of my face drooped I slurred my speech and was dizzy blurry vision and had trouble walking and because they don’t know what it is they say it’s stress. Years ago the doctors thought multiple sclerosis was stress related before the improvement of medical scans showed different. So we haven’t advanced enough to see what’s really going on in the brains of FND patients. We need more research and more innovative and sensitive medical scans. I’ve been to a psychiatrist and they did not see any mental distress and said I didn’t need to go back. I also did cognitive behavioral therapy which helped me to deal with my symptoms, but after 2 years I still suffer daily symptoms.
I understand where you are coming from. It can be incredibly invalidating to be told your symptoms are “stress related” and the implication being that if you learned to relax a bit your symptoms will go away! It also feels very blaming, as if you have some sort of control over your condition. The truth is, there is a very complex relationship between the brain and the body. We know psychological factors play a huge role in many conditions including stroke, dementia, gut problems and cardiac conditions, to name a few. There is scientific evidence that proves neuroplasticity exists and that our brains are shaped by our experiences. The problem in FND, as you rightly point out, is that very little is known about it and it’s causes. The one thing we know for sure is that it is similar to many other conditions and that changing how we relate to the symptoms can improve our quality of life. It might not take them away, but figuring out how we can live life and be who we want to be, whilst making room for FND, can help us make changes. This change in itself can be enough to reduce the intensity/frequency of symptoms. There are many studies on this now and evidence is emerging that it works.
Hello. Could you please give links to these studies? Thanks
Hi Van604. Of course I can post the links here for you. What studies specifically are you looking for? There are literally hundreds on various aspects of FND.
It's the studies you refer to here:
"This change in itself can be enough to reduce the intensity/frequency of symptoms. There are many studies on this now and evidence is emerging that it works."
Here are a few studies that show the role of psychological factors in FND. When you are looking these up, it will be very obvious that no one is saying there are only psychological factors that play a role in FND. What these studies are showing us is that taking account of how we interact with the condition has a direct impact on the symptoms. I’ve included a this first article as it gives a helpful overview of the physical changes in the brain associated with FND.
Cortical thickness alterations linked to somatoform and psychological dissociation in functional neurological disorders. Perez, 2018.
Emotion regulation and functional neurological symptoms: Does emotion processing convert into sensorimotor activity? Johanna Fiess, Brigitte Rockstroh, Roger Schmidt, Astrid Steffen, 2015.
Changes in emotion processing following brief augmented Psychodynamic interpersonal therapy for functional neurological symptoms. Isobel Anne Williams, Stephanie Howlett, Liat Levita, Markus Reuber, 2018.
Disrupted avoidance learning in functional neurological disorder: implications for harm avoidance theories. Laurel S Morris, Benjaman To, Kwangyeol Baek, Yee-Chien Chang-Webb, Simon Mitchell, Daniela Strelchuk, Yevheniia Mikheenko, Wendy Phillips, Michael Zandi, Allison Jenaway, Cathy Walsh, Valerie Voon, 2017
Differences in relatives' and patients' illness perceptions in functional neurological symptom disorders compared with neurological diseases, 2015. Whitehead et al.
The impact of conveying the diagnosis when using a biopsychosocial approach: A qualitative study among adolescents and young adults with NES (non-epileptic seizures).
Just like I mentioned above, FND is not the only physical condition that is known to improve with psychological input. In diabetes care, for example, psychologists often work with people to help manage adjustment to their diagnosis and thinking about how they may be able to move forward in life, despite the ways in which their condition may affect life. Here are some studies in a range of conditions and the role psychology plays.
Cognitive and behavioural correlates of different domains of psychological adjustment in early-stage multiple sclerosis. Dennison et al, 2010
Psychosocial Factors and Adjustment to Chronic Pain in Persons With Physical Disabilities: A Systematic Review. Jensen et al, 2015
The effects of cognitive behavioral and mindfulness-based therapies on psychological distress in patients with multiple sclerosis, Parkinson's disease and Huntington's disease: Two meta-analyses. Ires et al, 2019.
I hope this information is useful to you.
I think you need to be careful about making generalisations. FND is an umbrella term, which describes the symptoms, not the cause. It is not at all true to say that everyone who has these symptoms has a psychological cause or any ongoing psychological issues. My own illness was caused by my body overreacting to a virus. My neurologist is very clear that my symptoms have a physical cause. Like AJstar, I have had CBT to help me adjust to my new life, but that wasn't because the cause was psychological, it was because this illness annihilated my life to the point that it was unrecognizable. At no point in my nearly 10 years of illness never have any of the gps, neurologists, psychologists, urologists, ophthalmologists, physiotherapists, occupational therapists, pain specialists or anyone else every tried to claim that my symptoms are anything other than physical...because that's what they are. It's lovely that you want to help people, but it doesn't help them to try and pigeonhole them. Every FND sufferer is an individual, with their own symptoms and story. There is no one solution to this illness.
Hello and thank you for your insight. You are right I think no one should be making generalisations about the causes for FND. I would suggest that anyone who does this may need to look into the research. In my post above, I was saying that there is a complex connection between physical conditions and how we understand these conditions. Sometimes if there is a change in how we understand the medical condition, we can manage it better. Just like you had CBT for adjustment to the condition, I said above that it can help when we relate to our symptoms in a different way. I’m sorry you thought that I was trying to pigeonhole.
This is very interesting. I was initially diagnosed with dystonia by a neurologist, then with Parkinson's disease/dopa-responsive dystonia by a movement disorders specialist. Then I collapsed, while away from home, and a neurology resident said it was FND. I ended up seeing a neuropsychiatrist, who insisted it's all psychogenic, although after two years he still couldn't come up with a satisfactory cause. I also saw a psychologist, who didn't believe it's psychogenic. I actually feel worse, psychologically, now. I was coping pretty well before, but now feel like I've been gaslighted. I've become phobic, depressed and anxious. And my symptoms are as bad as ever, sometimes worse.
It sounds like you are stuck in a chicken/egg scenario. It is obviously extremely normal to have an emotional response to an illness like FND. I have come across many people over the years who have been judged by doctors based on these resultant issues, rather than the actual underlying illness. This then becomes a cycle; the more the illness is misdiagnosed and mistreated, the larger the emotional toll on the patient, which naturally increases their anxiety/depression/natural emotional response to an awful situation etc, which encourages further misdiagnosis and mistreatment...and on...and on. The way you feel is normal given your situation. CBT may help you adjust and become more resilient (which can have a significant impact on your quality of life), but if you are one of us that was made ill by a physical cause, there is a limit to how much good it can do you physically. I am lucky that I found someone who understands the complexities of my case. As exhausting as it is, all you can do is keep asking to see different professionals until you find one that gets you and supports you. Hang in there. You are not alone. Good luck 🍀
Thanks for the empathy. My problem is not that I'm having a problem with the diagnosis - it's the way I'm being treated by hospitals etc. I was actually pleased when my diagnosis was changed from Parkinson's to FND because they told me it was easy to fix. Of course, I realize that was ridiculous now. But now that I have conversion disorder on my chart, doctors, nurses and paramedics treat me appallingly. I'm so fed up with it that I'm moving to a different country (on the advice of my psychologist!) to try to start again. I'm also writing a book about it (I'm a professional writer) because we really need to correct some misconceptions out there. I'm hoping I have better luck in the UK.
That sounds appalling! There is so much inhumanity out there 😥
The book is a great idea. I hope I get to read it (although I can't read anymore because of my vision loss, so I'll have to get the audiobook 🙂). I wish you the best of luck in UK 🤞🍀
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