Functional Neurological Disorder - FND Hope
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Emergency Room Disaster

So physical therapy sent me to the emergency room yesterday. Normally I know better than to go because they never help but she convinced me that I had to have my arm and leg jerking checked out because for me it was a new symptom. Anyway they said I was actively seizing and they put cushions on the bedrails because I was being hurt from thrashing around. They restrained me for a CT scan and when that came back normal they discharged me without doing anything. I asked for a med to stop the seizing and they refused. The discharge papers listed the symptoms to go back to the emergency room for and I had three out of four of them as I was being discharged. They told me I'm not dying so I don't need the emergency room I guess I'm supposed to just suffer at home? My elbows are really hurting because of my arm jerking and they keep sending me to psychiatrists and the psychiatrists keep saying it's not a psych issue. The seizures are a new thing for me how do I deal with them? Because clearly the hospital/emergency room isn't going to help.

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Hi Jesdue,

As a point of reference, I believe that a lot of my myoclonic jerking is the result of pinched nerves in my neck and lower back.

That said, do you experience any *postural* relief? For example, I find that if I look up or to the right, it sets off seizures and convulsions, so I tend to keep my head in a slightly downcast manner with my shoulders up. I've been told "that doesn't nothing" by doctors, but it does provide me with relief.

That said, perhaps there are some postures or positions that help? Perhaps laying on your side, stomach, etc.? I have two positions (well, three, sort of) that I can rest in: left side is ideal; right side is okay for a change; back is only workable if I cram a pillow between my neck and right shoulder.

I've had some moderate luck with supplements (NAC, L-glutamine) for brain fog and fatigue, but it's limited and doesn't affect the jerking. Valium seems to help a little. In my own ER visits with the symptoms you describe, they gave me Ativan once, Diazepam once, Fentanyl once. That's it. They all worked for a few hours and then I was back to dancing.

I know what I'm about to say is controversial, so take it as nothing more than my personal experience. Psilocybin mixed with cannabis gives me about 3 hours of relief from the jerking and the seizures. The hallucinations are relaxing. If I take enough magic mushrooms, they make me forget that I'm sick, which can suck as I come back down from them, slowing remembering "Ah, sh*t... I gotta do this again." But, after about... 6?... trips in the last year, I've gotten better about preparing myself for "the return." For me, it's worth it, and I *do* think I'm seeing some positive cumulative effects, consistent with the current research on the use of psychedelics for depression. For what it's worth, I never touched a solitary "illegal drug" until last year when the doctors kept me in this ridiculous pass-the-buck vortex. The effective duration of psilocybin is about the same as Ativan, etc., but the anti-depressive effects linger for days and sometimes a couple of weeks ('cause this FND makes me super-depressed).

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I have to figure that out I guess if I'm gonna have seizures.

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It took me months and months to narrow down the triggers. With the initial diagnosis, the neurologist told me that I just needed to work through my traumas and the jerking would stop. That didn't help me at all, and so I spent a long and dreadful period of time reviewing every trauma I'd experienced, looking for the ones that were causing this; my therapist and psychiatrist were no help: they told me to keep plowing through my traumas.

However, the trauma of the FND onset did eventually fade, and that left me with a little more capacity to start to notice when I would have a seizure, and at that point I started researching and experimenting with postures, meditation, supplements, and on and on. They're still not gone, but they're more manageable (or my perspective is just different now [i.e.: all hope is gone and I'm left with acceptance] and I simply don't care... I'm not sure).

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I agree with you the7thchakra about the pinched nerve thing. Twice I went into a seizure at physical therapy and I think it's likely because of stretching and positioning. Also I like your insight on mushrooms, I've heard and read stories about potential healing benefits with psychedelics.

Jesdue, I've gone to the ER at least four times when I first started having seizures, it always left me feeling frustrated, especially when they would drug test me, or tell me that I just need to gain weight, I know I say this all the time on this website, but I swear by the keto diet and cbd/thc oils.

Also I now can recognize my triggers, illness, menstrual cycles, overheating, sleep depravation, alcohol, and has hard as it is for a stubborn person like me, I try to make sure on those days that I scale back, stay hydrated, and just stay aware of how I'm feeling.

I hope things get better for you Jesdue.

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FND is a psych issue, but many psychiatrists are not familiar with it. I'm sorry that you are having dissociative seizures. For non-epileptic "attacks", cognitive behavioral therapy might work. There is a CBT book called "Taking Control of Your Seizures: Workbook", and the psychotherapist's accompanying book is called Treating Nonepileptic Seizures: Therapist Guide (Treatments That Work). With those books, 11/16 patients in a study got better in 12 weeks, treated in Rhode Island. Getting better is easier said than done. In my ER, the ER physician recommended Benadryl, which makes me sleepy; I haven't taken his advice though, probably because I prefer to be awake.

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My psychiatrists keep saying it's not a psych thing.

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Yeah, the psychiatrists are probably more looking for stuff like a patient feeling depressed, anxious, having marital problems, or anger problems (things that most people think of as psychological).... Not many do dissociative disorders with physical symptoms. Moving an arm normally is psychological; feeling pain from a wound is psychological; those two things are only done when a person is awake, not unconscious, so therefore they are psychological, although most people would not think of them as psychological.

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You need to see a neurologist who deals with functional symptoms or a movement disorder clinic. Check you local area or country for a specialist. They can at least give you paperwork stating you have a neurological issue. It will not change much how the doctors treat you for symptoms but at least they will know you have a neurological issue.

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It is a neurological issue. You are thinking of conversion disorder. The definition was changed in 2013. Most doctors do not know what do to with us since there is still very little known about FND.

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It's a neurological issue and a psychological issue. Evidence that it is psychological, at least for some people: people get can cured by placebos, hearing the diagnosis, patient education, hyponosis, psychotherapy, physical therapy, occupational therapy, and people are less likely to get better if they are involved in litigation. FND can be psychogenic without being conversion disorder.

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You are likely still confusing FND with Conversion Disorder. Look up the definition for each theory and they are different from each other. Many doctors call conversion disorder FND now.

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I'm with you on this one. I have a diagnosis of schizophrenia so doctors assume my symptoms are a delusion so I now carry a letter from a psychiatrist saying this isn't a psych issue with me to every doctor appointment.

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I'm not confusing conversion disorder (converting emotions/stress to physical neurologic symptoms) with FND. I read the book Functional Neurologic Disorders, which is a thick book of articles, and it seems that FND is psychological, but it's psychological in a way that is a problem deep in the subconscious where many patients cannot change it.

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This is conversion disorder. FND is the when the brain cannot process signals properly thus creating symptoms, not a deep rooted issue in someone's psychological that they cannot fix. I am not sure what else to say but you are flat wrong. You are confusing the two different theories under the same name. Read the resource below to see a clear difference. Any symptom coming from the mind or deep rooted issue in the mind is conversion disorder even if it is called FND.

"There is really no more important first step then arriving at a reasonable understanding of the diagnosis that makes sense to you. This can be difficult as FND is fundamentally quite hard to understand, and is certainly easy to misunderstand. My way of understanding FND is that the symptoms it produces are real, not imagined or put on. The symptoms themselves resemble those that are seen in structural or degenerative neurological disease, but have a fundamentally different mechanism. Structural damage or degeneration causes a “wiring problem” in the brain/nerves and results in neurological symptoms this way. In FND however, the basic wiring of the nervous system is ok, and instead it is the control of the body that has gone wrong. A good example of this is Hoover’s sign for functional weakness, where a person may have significant weakness of one leg when they are consciously trying to move it, but the power in the leg returns to normal when movement is triggered in a different way, usually by asking the person to lift up their other leg. This causes a reflex pushing down of the other leg from the hip. In this way it can be positively demonstrated that the leg can move, and therefore that the basic wiring from the brain to the muscle is intact. Functional sensory symptoms (loss of sensation/tingling/pain) can be demonstrated to have similar properties as tests of sensation “wiring” (for example electrical tests that can track sensation messages coming from the limbs into the brain) are normal. Logically this must mean that the problem in FND lies in the brain’s ability to access or control the apparently normal movement and sensation wiring. It is difficult to understand exactly how this can happen, although modern neuroscience does provide some clues. However, it does point to the theoretical possibility of improvement in symptoms, as at least on one level the nervous system is working normally and is not irreversibly damaged."

fndhope.org/fnd-guide/diagn...

Is Conversion Disorder the same as Functional Neurological Disorder?

Yes and No

Yes, both are listed as the same illness in the APA diagnostic manual known as the DSM-5 and both are typically used interchangeably with one another.

"No, Conversion Disorder [CD] and Functional Neurological Disorder [FND] are theoretically different concepts. CD is the theory that symptoms are the result of suppressed psychological trauma converting to physical symptoms. Studies have found many do not have a history of major emotional traumatic events, or major depression/anxiety. Even if a patient does have mental health issues, now or in their past, there is no quantifiable way to confirm a correlation to symptoms. The change in criterion now makes it easier for physicians to use the CD/FND diagnosis, where in the past they couldn’t when they found their patient did not meet the criterion standard and there was no “converting” of symptoms taking place. Because there is sometimes no identifiable mental health issues, the need to identify one was removed. However, there are some patients who do identify with the Conversion Disorder theory.

We advocate that patients receive respectable and equal care based on their needs."

fndhope.org/fnd-guide/commo...

"Terms and Labels

What’s in a label?

Diagnostic labeling is causing a significant amount of confusion amongst patients and doctors alike. One doctor may use the term Functional Neurological Disorder or Functional Movement Disorder, but then another may use Conversion Disorder.

The inability for the medical community to agree to a specific definition and label for medically unexplained symptoms leaves many patients confused about their diagnosis and struggling to find where they fit. These various labels individually have different meanings, which contributes to the confusion. The many different theories and beliefs about medically unexplained symptoms are the major contributing factor why the various medical specialties are reluctant to agree on a label. However, all these terms are theoretically referring to the same set of symptoms.

Functional added to DSM-5

Functional Neurological Symptoms Disorder was added as an inclusion term to Conversion Disorder in the DSM-5, which published in May of 2013. The term was once used in the 19th and early 20th centuries to refer to disorders like migraine and Tourette’s syndrome, and it was not the only change to Conversion Disorder in the DSM-5.

The need to identify a psychological stressor was one change to the criteria. Doctors have a habit of connecting functional symptoms to any recent or old stress without relevant evidence. It is questionable how one can ever be sure that a psychological stressor is ever relevant or is converting into a physical symptom? Many patients found after a psychological evaluation that they did not have a connection. Yet, they had functional symptoms. Therefore, a need emerged for the updated changes in the new edition of the classification manual.

FND Hope’s observation is that Psychologists most often use Conversion Disorder where Functional Neurological Disorder is a term used more commonly amongst those more familiar with FND. FND is starting to be picked up by general neurologists.

As an organisation, we take a strong stance for using the term Functional Neurological Disorder. We do not choose this term to alienate those with a known psychological connection or Conversion Disorder experience, but because it is a general term that more accurately describes what all patients with like symptoms are experiencing. “The term functional, despite drawbacks, is not used here as a synonym for psychogenic, but instead as a way of describing a group of disorders in which there is a functional rather than structural disturbance in nervous system functioning and where a biopsychosocial model is critical in understanding their nature.”¹"

fndhope.org/resources/funct...

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We are talking about the same disorder.

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Hi jesdue, I have suffered with non epileptic seizures for over 3 years now with 95% of the other symptoms for FND that are on the website. After 2 very painful years spent, crawling, falling, etc my symptoms have eased off on there own over time but I’m left still with fatigue, unable to walk far and totally unable to drive. My seizures now will return when I overdo things. One thing I have to share is while having a seizure there is nothing anyone can do to help, you just have to wait and come out on your own. Whenever anyone has tried to bring me out of seizures pain puts mr right back in one. I’m aware of everything around me and can hear clearer then when not in seizure but unable to respond. In the first 2 years I also would stop breathing but was told this isn’t a problem as when become unconscious I will start breathing on my own again. I can now avoid seizures if I don’t overdo things and tire myself out. The constant jerking also eased off on its own although in the 2 years it would change from legs to head then arms so you never really knew where it would happen. Time seems to be the only answer, you just have to get through which is the really hard part. Good luck and hope this helps in some way.

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Hi,

There are some methods that help people on the FND Hope website. You need someone who specialises in FND. There's so many medical personnel that stick by the old ways that they trained in even though research has shown that psychological trauma increases your chances of developing FND, about doubles them, but is often not the only factor at play.

Working through trauma can help you as a human being, but it won't cure FND. Dr John Stone at Edinburgh University has done research in this field as has Prof. Mark Edwards now at St George's, London and they are leading the field. There's still a way to go and if you find a doctor that understands FND then try to stick to that doctor. Find a neurologist that understands FND. They will day they do - the old view - but they don't. I found mine through googling scholarly articles researching FND. There are some on the FND Hope site.

There are CBT methods that help some. There are also supplements there is a list but you may have to speak to a medical practitioner if you are on medication. Vitamin deficiency pays it's role and it's recommended that both your vitamin D and B12 are above 500. This is higher than current "normal" ranges. Some argue that taking the whole B complex is best than taking just one B vitamin as they work in harmony.

There is no one answer; you need a holistic approach. Pacing and sleep are vital. CBT for sleep is the best way to regulate your sleeping if you are having problems.

If your physio has not used the specific FND methods first developed by Glen Neilson and his team then that could be why you are having more problems. If you think of people who stutter, pointing it out to them, interrupting them, finishing their sentences, making them think consciously about how they are speaking, making them talk when they don't want to, will make them stutter like crazy. But they can sing without stuttering. It's pathways in the brain. Some work and other's suffer from problems where the automatic and the conscious signalling feed back on each other disrupting nerve signals.

Pacing can be difficult as temperature, hormone cycles, infection etc can all impact on your FND. Listen to your body and if you are not sure, rest. Pushing yourself to get better is a social norm. It is encouraged by society. It is the absolutely the worst thing you can do to yourself if you suffer from FND.

Look into other health issues that you may have. Try to improve on them too. Migraine can be thought of as "functional" but it also can cause neurological deficits. Even constipation can have it's effects. Epileptics can fit more when they are constipated. Pick away one by one. You may gain more quality of life if nothing else.

Magnesium oil is good for muscle aches and pains. But be carful and always do a patch test. Some find it irritates them.

I hope this helps. It's rather daunting and the world is not a good place for FND sufferers or anyone with a disability at the moment.

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Pacing is out for me, I'm in a wheelchair.

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Or did you mean figurative pacing?

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Hi,

Yes you can do something even if it's how long you can sit up for verses lying down or sitting reclining. Even how long you concentrate on things. I can walk around the house, but otherwise I use a wheelchair. I had to make the decision to stop going out. I leave the house about once a month at most and then only for a couple of hours at most - even that can set me back from being on one of my best days. It has made a difference, though I do get cabin fever. It has made me see how much leaving the house takes out of me.

Getting my sleep sorted was one thing that I thought I'd never be able to do. CBT really helped. Perhaps if you have problems with sleep work on that first. You will have set backs, but just keep sticking to the advice. There's lots out there if you have the energy to search the internet. My husband was referred on the NHS for CBT for his sleep (he has CFS) and I used his workbook as going to an appointment was impossible for me. Getting ready for bed before you are tired is a good tip for me. Especially as it can take ages to get ready adding eczema on top of everything else.

Personally I think there needs to be improvements to the advice, but things happen so slowly. I feel like it's water wearing away a stone sometimes. I did have good results from taking vitamin B6 and B complex. I've used Korean ginseng when I've been really bad to give me a bit of a boost so I could at least wash. You can crash if you come off it suddenly though.

Guarding my mood has been helpful for my quality of life if nothing else. Not watching the news and staying away from facebook and editing my friends list etc. Anything to stop myself having a rant at the TV. I even took the decision not to reapply for PIP as those bastards left me ready to commit suicide. We have so little money, but I'd rather eat no meat and sit in the cold under blankets and have my sanity. I know that it's not a choice many can afford these days.

Oh I wish I had a magic wand. All I have is a sense of humour and a stubborn determination that this too will pass.

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I totally agree with what you have wrote, when I was at my lowest (no diagnosis, constant pain, seizures, constant jerking, no taste, smell all senses gone haywire, unable to see my grandchildren and daughter as their voices put me in seizures, etc) I too had to delete Facebook (I couldn’t cope with people’s lives going on when I had no answers or control over my own) I was unable to watch television as it caused seizures too. Reading paper was depressing as they rarely put good news in it. It took me with help 17 months to get a diagnosis from professor Edwards, it was a soul destroying 17 months treated as suffering with anxiety and depression which I certainly didn’t have when starting my FND journey BUT like most on here with no answers, fobbed off by professionals, going through hell with no answers I too ended up suicidal. Only this website helped as you all knew exactly where I was coming from and could actually understand my pain and sadness. The outside world was just a memory until after 2 years my symptoms began to ease off on their own. Now over 3 years on and 1 months stay as inpatient in London for FND symptoms I have improved. I still have a long way to go and do still get down as am very isolated where I live. My triggers now for seizures, talking, walking are if I overdo it. That very fine line between trying to improve and overdoing things is a daily ongoing battle. My partner has been able to take me out for a meal but not when busy as the overwhelming noise is hard to adjust to but still trying to have some normality. Driving was a big no as the concentration needed would drag me back into a seizure then you have to wait another 6 months of seizures free to try again. There is light now at the end of my tunnel but it could take alot more years to get there. BUT it’s a light I didn’t have for over 2 years. I hope reading this can give someone else hope as hope is what you need to get through this life changing illness and I certainly needed it.

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I hate these seizures they're totally new for me and no one is helping.

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