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Catherine 21st April 2019
In early 2014, after coming back to work after three months' sick leave for burnout syndrome caused by extreme stress and harassment at the work place, I started having blackouts. They were short (lasting 1-2 minutes on average) and sometimes only noticeable to those who knew me well. To others, they could seem like I was simply lost in thought. At first, my GP assumed they were caused by stress and put me on an anti-depressant drug (Cipralex). I did not notice much improvement on it so it was discontinued after a few months. When I continued to have blackouts after a year, I was referred to a neurologist who ordered lots of tests - EEG, sleep-EEG, CAT scan, and MRI. All came back normal. But, when the blackouts continued, and came more and more often, to the point of affecting my ability to do my work, the neurologist put me on Keppra on a trial basis. The dose was slowly raised over the next few months. I tolerated it well, but noticed no improvement whatsoever. The neurologist then referred me to a colleague specialising in epilepsy. My new doctor repeated all the tests and also added a PET scan which also came back normal. It was then decided to put me on Lamictal which has proven effective in many cases of "epilepsy of unknown origin" (according to my new doctor). However, now things started to go really wrong. Lamictal turned out to have horrible side effects once I reached the maintenance dose. At one point, I started hallucinating, wandering around not knowing who or where I was. The neurologist claimed he had never heard of such side effects and doubted they were caused by Lamictal. However, he decided to switch me to Vimpat (Lacosamid) which, according to him, is a "more gentle" form of anti-epileptic drug. Not only did the blackouts continue, but also intensified, both in frequency and seriousness. I started hallucinating more and more often, would often ask others where I was and what I was doing there. It was finally decided I would be hospitalised for further exams. I spent a week in hospital and during that time I had daily EEGs, new MRIs, as well as cognitive tests carried out by psychologists. They all came back normal. But, in the end, it was decided I should be switched to a fourth anti-epileptic drug - Trileptal. It was around this time my symptoms changed. I had just been put on temporary invalidity and hated it. I had already been on sick leave for over a year and wanted desperately to go back to work (the situation at work having changed with the departure of my former boss). The decision to put me on invalidity was really disappointing to me, along with the frustration of not improving despite all the doctors, exams, and drugs. I also knew that if my symptoms did not improve during the year on invalidity (which is really like being on probation), I risked being put on permanent invalidity in my 40s. At this point, I had lost faith in doctors who finally had declared that I suffered from "therapy-resistant epilepsy of unknown origin". I was told surgery is sometimes an option in these cases but, since they could not find anything wrong with me, they would have nothing to operate on. In recent months, while on Trileptal, I have started having a completely new type of seizures (the blackouts seem to have stopped for good). Three times in recent months, I have had violent cramps, each seizure lasting 20-40 minutes. One time, it happened in my sleep and I fell out of bed onto the floor. My family panicked and called an ambulance. I was rushed to hospital where a CT was performed but it turned out normal. So I was told to get in touch with my neurologist for further treatment. He suggested raising the Trileptal. I chose not to, because the side effects have always occurred after raising the daily dosage above the starting dose. And I felt fine for the next few months. Only to have a new seizure, this time while having lunch with friends in a café. All of a sudden, the person sitting opposite me told me afterwards, my facial expression froze, I got this strange look in my eyes and then started shaking from head to toe. The friend sitting next to me put her arm around me to keep me on my chair. It took about 40 minutes before I "regained consciousness" and realised where I was. I have never had any recollection of what happens during these attacks, and I never feel anything before they happen (this is true both for the blackouts and the violent spasms). I then felt I had to take drastic measures myself because all doctors would do would be prescribing new tests and drugs. I had read that, after two normal EEGs and two anti-epileptic drugs proving ineffective, PNES should be suspected. I had read about psychogenic non-epileptic seizures and decided to find a therapist specialized in trauma counseling. I was lucky to find one nearby and started treatment. The therapist concluded I suffered from PTSD (after scoring extremely high on the tests/diagnostic tools) and recommended eye movement therapy (EMDR) which has proven highly effective in the treatment of PTSD. She also said my seizures sounded like dissociative cramps. I have started EMDR therapy, and it seems to be working...! I have managed to wean off the latest anti-epileptic drug without any ill effects whatsoever. So far, I remain symptom-free, for the first time in five years, without drugs. It's a very liberating feeling...I can only hope this will last, and that the doctors will agree to reconsider their diagnosis. It is very frustrating displaying all of those symptoms without doctors being able to correctly diagnose and treat them. I have been told I am a "difficult case", but no doctor has seemed willing to think outside the box and consider an alternative diagnosis. It's like they decided from the very beginning that I suffered from epilepsy, and they kept prescribing new drugs when the one I was taking did not help. I am very happy and relieved to have come this far, but a lot of work still lies ahead. However, it's easier to accept that now that I have found a health care professional who listened to what I had to say, took me seriously, and suggested treatment that actually seems to work - unlike all the anti-epileptic drugs.
Louise 15th March 2019
I have been told by a doctor about a "functional block" between brain and body and directed to this website, but cannot find any information about it. This is in relation to episodes similar to dissociative seizures, but with clear awareness throughout but an inability to respond eg total body limpness, breathing stops. Brain is saying to breathe, open eyes, squeeze hand, but body does not respond. Preceded by chest pain, racing heart, bowel response. I can't find any symptoms like this on this site, there is no dissociation at all with the episodes.
REPLY. I cant provide help on diagnoses for individuals, sorry. In general terms dissociative attacks/seizures and panic attacks are different, although share similar mechanisms in the brain. Many people with dissociative attacks dont experience any dissociation, although 'body does not respond' may in fact be depersonalisation. There are attacks which can have features of panic attacks like fast breathing, chest pain etc but in which people dont experience fear (so called 'panic without panic'). There are also dissociative attacks where people have no warning and experience no symptoms of panic attack at all. What they all have in common is that somewhere in the brain there is a 'red alert' going off which the brain and body is trying to deal with in various ways. Typically there is no particular reason for it at that moment, ie the person isnt necessarily stressed when it starts, but the attack itself is stressful. More information on these pages (1 and 2 ) about attack treatment.
Alison, 6th March 2019
I was hoping to get a better understanding as to the classification of FND as it is classified in the DSM 5 under somatic disturbances. This makes it clear in my mind it is a mental health disorder however I don’t feel I relate to that, I’m finding to hard to know if I have a mental health issue or a physical health issue or both. Many thanks.
REPLY. This is a common and understandable question. FND is in DSM-5 which is the American Psychiatric Associations Diagnostic Manual. However those in the field are clear that FND is a disorder which is at the interface between neurology and psychiatry and in fact challenges the distinction between mind and brain. There has been a long battle to get FND recognised in both neurological and psychiatric classifications - thus far with only partial success. You can read an article we wrote about that here
However regardless of what DSM says, those of us in the field are pushing for this unified approach. FND now appears much more routinely in neurology journals, conferences, textbooks and curriculums, when previously it was invisible in those spaces. In answer to your specific question, its a disorder of the nervous system, leading to involuntary and real symptoms. To me the question is really hard to answer because there are no neat division in the nervous system between mind and brain. People with anxiety and depression have many brain changes. People with MS and Parkinsons commonly get psychological symptoms. Eventually we hope the World Health Organisation will catch up and amalgamate neurological and psychological disorders.
PS DSM also contains diagnoses like Dementia, Tourettes syndrome
Alison, 27th February 2019
Hi, I have a question rather then feedback. I’ve just been diagnosed with FND so learning a lot at the moment. I was relieved to know there was nothing structurally or degeneratively wrong with me! I would like to be clear, and I’m not clear, how FND is different to ‘anxiety with somatic symptoms’. I am talking to people about FND and have been asked questions around this line, I’d like to have a clearer answer. I’ve been suggesting it might be about symptom presentation ??? Thanks, Alison.
REPLY: This is a good question which I can answer as its generic rather than specific. Anxiety comes in many forms, generalised anxiety, panic disorder, agoraphobia, social anxiety etc. Its often thought of as a purely psychological cognitive problem - "I feel worried most of the time", "I cant keep a lid on worry" etc - but the diagnostic criteria for it that psychiatrists use for generalised anxiety contain several physical symptoms - fatigue, poor concentration, muscle tension, difficulty with sleep, feeling restless.
The definition of a panic attack includes even more physical symptoms occurring as an episode: Four or more of palpitations, pounding heart, or accelerated heart rate; sweating; trembling or shaking; sensations of shortness of breath or smothering; feeling of choking; chest pain or discomfort; nausea or abdominal distress; feeling dizzy, unsteady, lightheaded, or faint; paresthesias (numbness or tingling sensations); chills or hot flushes - as well as several cognitive/emotional ones: derealization (feelings of unreality) or depersonalization (being detached from oneself);fear of losing control or going crazy; fear of dying
FND describes symptoms that relate to the voluntary motor and sensory nervous system - limb weakness, movement disorders, blackouts, visual problems etc - these are not part of the definition of anxiety. Although tingling and trembling is part of the definition of panic, they present in a different way that wouldnt generally be confused with FND.
Anxiety and panic are common in patients with FND, and its also possible to have physical symptoms of anxiety without feeling that anxious, but even with that, a large proportion of patients with FND just dont have an anxiety disorder (or any psychiatric disorder). So in some cases, depending on the symptom and severity of anxiety it makes sense to look at things from an anxiety perspective, in others it really doesnt, and in others two diagnoses, FND AND Anxiety need to be made and the way in which they interact discussed.
Ultimately the diagnostic "boxes" we have are imperfect. Diagnostic labels are helpful if they help people understand their symptoms better and/or direct them towards better ways of managing or treating them. Its often the case that people need to understand how these different diagnostic labels overlap with each other.