FREQUENTLY ASKED QUESTIONS ABOUT FUNCTIONAL NEUROLOGICAL DISORDERS
Over the years, changes have taken place in the naming of functional neurological disorders (FND) which are classified as not consistent with a neurological disease, after diagnostic efforts. Now the formal name is functional neurological symptom disorder, or FND for short. The older naming convention, classified FND as conversion disorder. This however implies that we understand cause, i.e. one thing, like stress is converted into another thing, like the shaking seen in NES. The definition does not require that a psychiatric disorder coexists, though in fact the two, FND and psychiatric disorders often coexist.
FND are divided into types. Following are a few:
- FND, seizures
- FND, movement disorder
- FND, gait disorder
- FND, sensory
- FND, coma
- FND, vision disorder
FND can present in any way that a neurological disorder can present, but the demonstration of the underlying neurological deficit or abnormality cannot be made.
These are events that look like an epileptic seizure, but don’t have changes on the EEG that we see with epilepsy. This is a disorder in which stress, trauma, psychological conflict, or the forgotten past result in neurologic symptoms.
Most patients (about 80%) with NES have been treated with antiepileptic drugs for several years before the correct diagnosis is made. It is common for patients to initially be given the wrong diagnosis. Few physicians have access to EEG-video monitoring, which has to be performed by a neurologist who specializes in epilepsy (Epileptologist). Because epileptic seizures are potentially more harmful than NES, physicians, when in doubt, will treat for the more serious condition. If seizures continue despite medications, then either the treatment needs to be changed or the diagnosis is not epilepsy. At that point, patients are sent to an epilepsy center, where the diagnosis is usually made. A portion of patients have both epilepsy and Non-epileptic seizures but this is less common. If you have both types, it is very important that you and your family learn to distinguish the two types because the treatment is very different.
The most conclusive test to distinguish epilepsy from NES is video EEG monitoring in the Epilepsy Monitoring Unit (EMU), leading to near 100% certainty in the diagnosis, in order to capture one or two typical episodes/events on both videotape and EEG simultaneously. This can take 3-5 days.
In the case of NES, the EEG is utilized as the gold standard to show that there is no underlying neurological abnormality. A seizure is captured on the EEG and when no electrical signal is associated we can diagnose NES. We are able to say that NES is not an electrical seizure but the cause of NES is less clear. There is the beginning of convincing evidence that we may be able to use modern imaging studies to understand the brain activation patterns that are associated with FND. This work is still in the realm of research.
This is a derogatory, unkind and incorrect remark, sometimes made by care providers. Unfortunately, the remark is still used and reported to us by patients. In the old way of thinking, people converted inner distress into outward signs and symptoms. More than a century ago, a famous neurologist, Dr. Sigmund Freud, created a branch of medicine, psychiatry, to explain FND. Although we know that FND is highly associated with behavioral health abnormalities, there is no convincing evidence that one causes the other. Jargon emerged over time blaming the patient for having behavioral health issues and accusing the patient of having “fake” symptoms which were made up, i.e. “all in your head.” We like to say, the FND problem is “in your brain” we just have not discovered the exact pathway.
This is a derogatory, unkind and unhelpful observation. To an onlooker trained in physical diagnosis, some FND symptoms, like seizures and tremor can look as though they are in the control of the patient. Most doctors and other care-providers, receive no formal training in the diagnosis and treatment of FND. Sometimes they can become frustrated with their inability to treat a patient and unfortunately resort to name calling.
Many patients and families are reluctant to believe the NES diagnosis. Keep in mind that NES represents a well-recognized condition that can be diagnosed with nearly 100% certainty. Some people believe that treatment by a psychiatrist is a sign of being “crazy” or otherwise mentally incompetent. This is not the case with NES. Many patients become upset when told that their seizures are psychological. It makes sense to seek treatment from a person most able to help you. The psychological factors can best be identified with the help of those with special training in psychological issues: psychiatrists, psychologists, or clinical social workers. As with all other medical conditions, sometimes the exact cause remains unknown; even then we can concentrate on the most important goal: reducing or eliminating the non-epileptic seizures.
There are very few systematic reviews of outcome for both FND motor and seizure types, less for other types of FND. These reviews are limited by previous inconsistent definitions and measurement tools. In our treatment program we have noted improved scores on several of the metrics we use, like the Brief-COPE which shows an improvement in using active coping mechanisms. We have also noted reduction in seizure frequency. Prognosis can be affected by the length of time it takes to obtain the correct FND diagnosis, so active work is being done at our center to shorten the time to diagnosis. Because it is common to have a coexisting behavioral health diagnosis, it is essential to have these problems treated as well.
The first step after FND diagnosis is for the neurologists on the team to verify the diagnosis by reviewing the testing which was obtained. Then a meeting with the patient to explain the diagnosis from a neurological perspective occurs. It is then very important to have a full psychiatric evaluation to determine if there are any behavioral health diagnoses which may co-occur and require treatment. Sometimes a meeting with a social worker is needed to assure that a patient has full access to care. We then have a 5 and 12 week group treatment specifically targeting NES. The details of this therapeutic approach is outlined in the Clinic Flow page of this website.
Having more than one event type (events that “look different”) is very typical in NES. Because the seizures (events) are non-epileptic they are not stereotyped. The brain activation that is felt to underlie NES does not follow a specific pattern and the outward motor or inward sensory manifestations can be different from event to event. In spite of this many people have at least one main event type with variations.
It is important to know that this is a common question. Patients often report that seizures occur in spite of having good days. The confusion arises because patients are also told that stress and other behavioral health issues and “having a bad day” are causing seizures. There is no good evidence that this is true, though it is common for patients with FND to also have behavioral health diagnoses. While we are not 100% certain of cause for NES, emerging evidence points to brain activation which is different in patients with FND. The triggers for this activation are unknown, and do not require a “bad day”
Many people with NES have stopped driving, since they have carried a diagnosis of epilepsy. There is no law that regulates driving in patients with epilepsy or NES, and neurologists vary in what they recommend. The decision as to whether you should be driving has to be made individually with both your psychiatrist and your neurologist. If your NES spells involve loss of awareness then YOU SHOULD NOT BE DRIVING. Generally speaking we like patients to be free of events for at least 3 to 6 months before resuming driving.
Many patients with Non-epileptic seizures have significant difficulty with their memory. This can often be due to your mind trying to avoid difficult memories, emotions and thoughts. At the severe end of the spectrum the mind trying to do this is called dissociation. Dissociation is a common problem in patients with NES and can be one of the reasons they have problems with their memory. Often addressing the problems and past trauma, as we do in the NES clinic, can help this problem. Here are some other tips and resources to look into:
- Avoid multi-tasking so that you can focus your attention.
- Explain new information to yourself in your own words. Use paraphrase and summaries to help remember complicated information.
- Use mnemonic strategies (e.g., using the word BAT to remember to buy bananas, apples and tea)
- Use memory strategies that work for you. If visualizing things helps use that technique.
- Elaborate the memory, e.g.,try to remember someone’s name by remembering that their name is the same or similar to someone else.
Write things down. Some patients find a day planner to be useful.
Marijuana use in patients with NES is common for multiple reasons. Marijuana has not been studied in patients with NES and therefore we don’t have information on the safety of marijuana for NES and want you to be aware of the harms associated with use.
There is good evidence that long-term use of marijuana can have negative effects on memory and ability to learn. This already tends to be a difficulty experienced by patients with NES. Marijuana is also associated with poor psychiatric outcomes including higher risk of anxiety, depression and psychosis. Marijuana can decrease the effectiveness of prescribed psychiatric medications making treatment of conditions more difficult. Marijuana may also be used as an avoidance strategy to escape emotional pain. In the NES program our goal is the opposite to get patients to start facing difficulties that have been previously avoided. Greater frequency of cannabis use increases the likelihood of developing problem cannabis use.
Marijuana has a specific withdrawal phenomenon that can lead to discomfort if stopped abruptly similar to other substances of abuse. These withdraw symptoms can include anxiety, dysphoria, irritability, restlessness, insomnia, sweating, and abdominal pain. These symptoms are the worst in the first week of stopping and should get better but can last for up to 6 weeks. The best way to avoid withdraw if wanting to stop or cut back on your marijuana use is to decrease your marijuana use by 20% each day. In the NES clinic, we do not recommend or prescribe marijuana to treat Non-Epileptic seizures or any psychiatric co-morbidities. Cannabis can also have health consequence with the most recognized being Cannabis Hyperemesis syndrome associated with intractable nausea and vomiting. In some studies, cessation of cannabis use has led to resolution of these symptoms.
More information on the use of marijuana can be found at The National Academies of Science Report on cannabis and cannabinoids which can be found here:
Many patients will experience a reduction of seizures, in some cases seizures can remit. What is more common, is that patients receive a “tool kit” to cope with seizures and gain a greater sense of control in their lives which leads to overall improvement.
We recommend that all patients establish or continue treatment with a therapist and/or psychiatrist outside of the FND clinic. Since this clinic is not a chronic care model we cannot continue to see patients after they have completed treatment with us. Our providers will assist you in finding appropriate, accessible care, and will communicate with whomever you establish with to ensure they can continue the progress you have already made in the FND clinic.
Many patients have questions about disability. Obtaining disability is a legal process that is provided by lawyers. A lawyer may sometimes ask a physician to fill out paperwork to support a disability claim. The doctors in the NES clinic are not legal experts and the recommendation is to secure legal advice if disability is a goal. Disability paperwork is best filled out by a physician who has knowledge of your condition and a long-term relationship with you. In the NES clinic, we deliver short term care over a period of 6 months. It is most useful to ask your primary care physician who knows you best, to assist with disability paperwork.
Our clinic may be able to review paperwork related to employment or to support academic pursuits, for example special work or school accommodations. For the reasons stated above, we will not complete disability paperwork. The NES Clinic is focused on treatment and providing support for the aspects of life that will assist you in returning to a quality of life similar to the one you had before the symptoms began.
For more information about how disability affects recovery review these articles:
For more information about how to acquire a disability in Colorado please visit: https://www.ssa.gov/disability/disability.html
**The NES Clinic highly recommends obtaining a lawyer to assist you with this process. Most lawyers who specialize in disability take cases on “spec” which means they will review your case for no charge and advise you about whether or not you should proceed.**