Strange sensation in head before or during involuntary movements ? Also EEG light test

[Katie-IBS]

Hi all,

Was wondering if anybody else on here experiences like a warm/ strange sensation in there head or I can get it though my body, it’s only for secs before or during when I have these involuntary movements? It’s like a warning sign to me ?

Also when I had my EEG done on the 22nd Aug during the test , the was a big light that they used which kept flashing lights at me at different rates of speed- firstly I couldn’t stand the brightness of the flashing lights

( found this has been a issue for the last few weeks or so , eg car lights, supermarket lights, LED lights )

I kept closing my eyes with the flashing lights and also when I had the first couple of flashing lights shined at me from the light- my whole left side of my body jerked like I had an electric shock almost, my hands also felt like they were twitching - was wondering if anyone else has experience these, - is this a normal reaction to flashing lights?

I know everybody is different, thanks katie x

[thinkin]

Hi,

I had that when I was being tested in the 90's. I went blind looking at the flashing chequerboard and I felt so sick and disoriented. What it did not do is trigger a seizure - those electrodes on your head were to pick up extra signals that are an epileptic seizure. I was diagnosed with basilar artery migraine, although nowadays it will probably have been renamed.

It could be either your FND is light sensitive or you have some form of migraine going on with your FND. I find my old migraine is active under the FND. It's probably what has caused the neurological deficits that have picked up along with the distractible ones. I don't get headaches with migraines, just all the other classic symptoms, flashing lights, hallucinations at night, weakness in my right arm and right trigeminal nerve numbness, pressure in my chest, pounding in my head and tinnitus. My mood can swing down rather fast too as it affects my brainstem.

We are all indeed different and FND does not mean that you can't have other things going on. In fact migraine is common amongst us. Maybe have a peruse of migraine websites and see if there's any commonalities and if any of the self help stuff improves your symptoms. There is some functional neurology present in migraines as I have been told.

Hope this helps. xx

[Katie-IBS in reply to thinkin]

Hi, thank you for your reply, how interesting indeed. I do suffer from migraines from time to time, have the blue lights, throbbing pain on my upper right hand side of my head.

I have currently got a issue with lights ( the brightness of lights) had this for about a month can’t look at car lights, supermarket lights, LED lights. In relation to the strange sensation I get before these involuntary movements, I haven’t been getting headaches etc. The last migraine I had was beginning of August, haven’t had any throbbing pains or headaches since.

I don’t have FND, well I haven’t been diagnosed by my neurologist with FND- he sees to think my involuntary movements are non epileptic attacks but I haven’t seen him since I’m had these new symptoms and had my EEG test- due to see my neurologist the 17th Sep.

Kind regards katie x

[thinkin in reply to Katie-IBS]

Hi Katie,

Non-epileptic seizures do fall under the FND umbrella. Also you can have migraine without getting the headaches. I was misdiagnosed in my 20's with MS of the brainstem when I was having migraines without headaches. They can be quite dramatic. I used to have to wear sunglasses even indoors. Managed to get rid of them after 15 years of misery with CBT, but they have come back with the FND symptoms and I think the fact that I'm approaching menopause isn't helping either.

Good luck with your results. Don't be afraid of the FND label if it turns out to that way. It does offer hope even if there are doctors out there who are out of date and don't understand.

Everything crossed for you. xx

[Katie-IBS in reply to thinkin]

Hi, thank you for your reply again, yes I have read lots of posts on here and on the internet about FND and non epileptic attacks. And oh right ok it’s certainly a thought then. Sorry to hear that you was misdiagnosed and are currently experiencing your symptoms again- all these symptoms that we are experiencing are certainly not nice, and effects every day etc

When I had the EEG on the 28th Aug and had a involuntary movement which I think was brought on by the flashing lights, when I explained to the lady who did the test about the strange sensation that I get in my head that I get with my involuntary movements, she said something on the lines on “a wave” 🤔 it’s all very interesting indeed, I’m hoping to find out more information and answers when I see my neurologist on the 17th Sep.

Thank you again and I hope you also manage to get your symptoms under control etc- I will let you know how I get on on the 17th Sep, thanks katie x

[Katie-IBS in reply to thinkin]

hi, just thought I would update you. I saw my neurologist on the 17th September.

I firstly cant believe how my neurologist was with me, I felt like he was trying to basically say to me why am I here etc, I have told you what the problem is 3 months ago :/ . The EEG I had done came back clear even though I had a couple of involuntary movements during the EEG. I explained to my neurologist that I am experiencing new symptoms such as flashing lights, black/blue dots but without the headache- is said this sounds like migraine. He also feels still that the involuntary movements are non epileptic attacks due to stress related. I am now waiting for his report to see what he has put etc.

[thinkin in reply to Katie-IBS]

Hi,

Sounds like a typical neurologist with out-dated views on FND. There are some out there who are rather unprofessional, surely it's common sense to review someone after tests and make a plan? Maybe I'm just old fashioned. Just try to rise above him and know that you are not alone.

Maybe see if you can see a migraine specialist. There are migraine diaries that you could utilise to monitor your symptoms so you can take it with you and even look for patterns yourself. I find my menstrual cycle plays a big role, plus being peri-menopausal is not helping. There's things your doctor can give to reduce the frequency of migraines. Also CBT and meditation can be helpful.

If you treat one you can improve the other. On the FND website under the healthy living section there's supplements that can help reduce migraine frequency. The ones with research led evidence are the B2 and the co-enzyme q10. There will be more detail on the migraine websites too.

Good luck. x

[Katie-IBS in reply to thinkin]

Thank you for the information, yes I will take a look, and the migraines are a issue at the moment as I’m having the flashing lights etc but without the headache several times a day every day. I went to my gp the other day, he has given me some tablets to try and help with the migraine symptoms called sumatriptan tablets. Can’t say they have done much, it’s still probably early days.

Yes sone of these doctors/ consultants seem to be the same- the neurologist I have been seeing is a neurologist consultant, he is one of the top where I live, but still doesn’t give him the right to be the way he was with me etc.

I’m going to see my gp tomorrow and see if he can refer me to someone who could try and help me in relation to the involuntary movements/ seizures that I’m having. So yes maybe if I see someone they can also look into / address the migraines.

Hope you are well ?

Thanks Katie