I came across this group as I was looking for information/ advice about involuntary movements/ epilepsy/ non epileptic seizures
My symptoms initially started back in April 2018 while at work where I went lightheaded, fuzzy head with a throbbing pain on upper right hand side of my head etc , lasting for approx 1h 30 mins. I didn’t think much of it as I thought it could be todo with not eating or drinking enough during the day. The next day before I was due in work, the same thing happened to me again. I phoned 111 and they advised me I get checked out at my local hospital , so I did, had bloods, observations, was examined etc and all came back normal, was told to note my symptoms and nothing to worry about it.
While I was at work a few days later
( I work in a hospital) I had another episode of feeling lightheaded, fuzzy head, throbbing pain to my upper right hand side of my head etc, anyway I ended up going to A&E where again I had all my obs, bloods and an ECG done, all were normal apart from fast heartbeat. So was referred for an heart scan which also came back normal. I kept having these episodes several times a day every day for about 6 weeks. Again while at home one evening I had another episode of these symptoms but had also now experiencing terrible chest pains, and also developed/notice involuntary movements of left arm/ hand, were it looked like I was having some kind of seizure on my left hand side. I do have mild cerebral palsy but these involuntary movements are new and different. Again I was took to A&E were my obs we’re done, ECGs, bloods and a MRI scan and chest X-ray was done, all results were normal. I was discharged later on the evening and was informed that I would be referred to a involuntary movement clinic at another local hospital to see a neurologist.
These last two months I have only been having these involuntary movements on my left arm/ hand were my arm will suddenly just jerk in the air etc, I don’t have any control over these, I was having between 20-24 episodes per day with each one lasting for seconds.
I have seen a neurologist, where I was examined, asked questions/medical History etc was done and in fact had one of these involuntary movements in front of him. I have been seen by two neurologists were one said these are myoclonic seizures and the other neurologist who’s a consultant said they don’t look like myoclonic seizures, and which he now feels are non epileptic attacks which could be linked to stress. ? I was put onto Baclfron 10mg three daily to see if it would help with these involuntary movements.
A couple of days after I saw the neurologist consultant, the attacks that I have, have reduced from 20-24 to currently 15-17 attacks per day. I have also noticed other symptoms since these attacks have reduced- I get like a warm sensation from my head/ or like through my body with some of theses attacks ? My left hand/fingers moves on there own and also feel like my upper left hand shoulder muscles like contract before I have these attacks. Can these be warning signs ?
I am due to have an EEG done towards the end of August 2018
P.s sorry for the very very long message, was wondering if anybody else on here has these similar symptoms? Thanks katie
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Katie-IBS
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Oh ok, it’s all very strange isn’t, none of it make sense to me, I have no triggers that I can think have brought these on myself. All I can say is keep a diary of your symptoms.
Yes, I have all of these symptoms as well as others. I have been living with FND for 9 years. I get the myoclonic spasms when I am relaxing. What is weird, it happens when I am watching TV and the program goes to a commercial. What could that trigger be? I get dystonic posturing randomly, ie: my left hand will suddenly raise to my forehead in a fist position and stay there and I cannot move it voluntarily for several seconds. The lightheaded, foggy brain symptoms happen on a daily basis. It is not uncommon to feel body temperature extremes. I am either so hot I want to shed my clothes or so cold that several blankets don't make a difference. I have never had seizures of any kind but my husband has. I have learned that a specific epilepsy diagnoses is very confusing depending on whether or not a medical professional is a witness. There are small nuances that define what type of seizure it is clinically referred to as. I have also come to realize that an EEG is very inconclusive at best. You asked if some of your awareness's are signs? I believe if you have an indication or feeling that an episode is about to happen it is more closely related to Turrets? This condition has similarities to several other conditions like Parkinson's, Turrets, MS, Stroke, Wilson's disease, etc. But, because there are specific clinical conditions that are not met it is unique. Here is a caution; I suggest you don't become complacent! If you have pains in your chest and down your arm, don't assume it is just another event. It very well could be a heart attack! I was told once by a neurologist that I did not have Parkinson's, but that did not mean that I couldn't be diagnosed later with Parkinson's
Some of my other symptoms are: speech issues, from can't talk at all to only whisper or stammering, stuttering, and babbling. I sometimes have difficulty swallowing, gait issues, tremors, inability to move my arms and legs, nerve sensations (that feel like bug bites, bee stings, acid burns), and muscle twitches. Keep an open mind. Accept that this condition is within the realm of possibilities, as bizarre as it seems. Be patient. This condition comes on quickly, but, those who recover do so over a long period of time.
It is all very strange and interesting why we experienced these symptoms etc isn’t. You have mentioned you get seizures/ myoclonic spasms. Have you got a form of epilepsy or are your doctors saying that it’s non epileptic seizures? I noticed you also me mentioned that you have your seizures when you are watching tv, I can have my attacks/ seizures any time of the day including evenings and even in bed ? But yes I also can have mine when I’m just sitting down watching tv, relaxing etc that’s why I find it hard to believe 100% that my neurologist consultant thinks that these attacks are non epileptic and feels it could be stress related- I can get stress from time time but I find it hard to believe that’s it’s purely 100% stress 🤔 and yes like you have said what is the trigger for these. ?
I also find it strange how you also have some of my symptoms that I have, see my neurologist said to me that these attacks that I have are violent in nature- hence why he feels that they are non epileptic attacks because how they present themselves, plus my neurologist had seen me have these attacks.
I only really noticed the sensation feeling over my head/ through my body before having these attacks aswell as the other symptoms that I listened with the sensations, a couple of days after I saw the neurologist, which is kind of annoying. So when I go back to see my neurologist in September I will be asking him about these new symptoms that has since occurred at the same time that these attacks have reduced slightly.
I also find I get cold quite a lot, but to be fair that something I’m had for a very long time. In relation to doctors etc they can’t always give you a proper diagnosis or answer your questions at times. Like with my other health conditions I have, I can deal with it short/long term it’s just sometimes by having a more accurate diagnosis helps you understand what you have wrong with you etc etc.
Lastly the frustrating thing of all, is that these attacks are that bad in nature ( violent ) that I have been off work coming up to 3 months. My line manager is being very understanding etc but because the nature of my job and because the attacks effect my left arm I can’t currently return to work as it’s unsafe not just for myself but for other staff and patients that I work with. I’m backwards and forwards having meeting with work about my situation and what job opinions are available to me with because of these attacks. But on a positive note we get through it don’t we in the end as we have little choice Apologies for the long reply!
Hi thank you and same to yourself, it’s horrible isn’t all these symptoms which we have with not much reason why we are experiencing these problems. And I think it’s more harder when these symptoms don’t look obvious to people.
I noticed you mentioned about your fingers movements are fast and constantly moving, this is pretty much how my left hand has been for about three weeks, for example when I’m sitting down my hand/fingers will just move on there own
, fingers will kind of like curl up a little bit also annoying especially when I forget to mention this to my neurologist who i saw a couple of weeks ago.
I will be definitely asking several questions when I see my neurologist again in September in relation to these new symptoms. I also know that I haven’t got a serious condition or feel like I’m dieing, what I do know is that these attacks that I’m having are not normal, whether these attacks are non epileptic or epileptic or abit of both who knows, will find out more information when had EEG and see my neurologist again 🤔
In relation to the baclfron, I was the same, I was initially taking twice daily tablets (10mg x2 of baclfron for about 5 1/2 weeks for these attacks which were between 20-24 per day, the baclfron did nothing, which then was also making me feel abit frustrated, so informed my neurologist that the baclfron wasn’t making any difference so was increased to 3 tablets per day of baclfron of 10mg each tablet. Saw my neurologist a couple of weeks ago informed him of no different, - this is when he said he feels these attacks are non epileptic and he feels it’s linked to stress. Then literally two days later my attacks have reduced from 20-24 to currently 15-17 per day for the last to weeks since I saw my neurologist, so therefore I feel the baclfron does work, as my neurologist said it can take at least 6 weeks for it to start to work/ see any difference, I suppose it’s patience sometimes.
I’m very lucky indeed when it comes to my family and several friends of who all understand my needs and symptoms, I’m always had the attitude where I’m make a laugh of my symptoms- helps make it easier to deal with etc, will also look into the FND sites. Thank you for the advice you have mentioned, we will get there in the end, you have two as I personally feel giving up is the easy option , thank you again- take care
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