I was just diagnosed two days ago

[UnceasingFaun]

After a week in the hospital after an epilepsy diagnosis, they told me that my seizures were non-epileptic and I had FND, which I had never heard of.

After four days of sleep deprivation, Benadryl IV, and daily hyperventilation, I developed major muscle spasm, inability to use my hands, and a stutter, which I did not have prior to my stay.

I plan to return to work as a teacher in a few days. I am definitely feeling better, and the symptoms are improving, but I don't see a psychiatrist for a couple of weeks and I am not sure if I should just dive back into work or give myself a little extra time to recover. Also, any advice on what to do between now and when I start receiving treatment would be very much appreciated!

[210272]

Did they do an EEG to establish that the seizures were non-epileptic? I know it's the gold standard for 'functional' seizures but there are scientists who don't think they are 100% reliable (see the work of Catherine Carlson ffi) I'm sorry to hear you got additional symptoms and it might be worth discussing these with your GP when you can since they could be a result of medications and/or sensory overload from hospitalisation and/or sleep deprivation. Sadly there is still a lot of stigma about non epileptic seizures so having a trustworthy GP in your corner should help, long term. An FND dx can prevent some doctors seeing beyond the psychiatric diagnosis (it is still contested as to whether or not FND is a psychiatric condition) so there can be a tendency for them to ignore other symptoms but if your GP can remain open minded then they are deffo a keeper

I hope the psychiatrist you are due to see is a seizure expert and can provide you with an effective treatment plan and discuss any potential co-morbidities such as migraine. As for work, it will depend on who you work for and their understanding of your condition but I hope they will be able to give you suitable work place accommodations. Phased returns to work seem to work best IE not going back full time, at least initially.

The advice about how to manage before starting treatment is limited although various epilepsy societies may be able to inform you about this but I think keeping calm and active with things you enjoy can help.

[Van604]

I think the sleep deprivation is important. I usually have to sleep it off whenever I've been in the hospital, for as long as it takes.

[210272]

Hi UnceasingFaun,

Just saw this via the American Academy of Neurology regarding the guidelines for 'functional seizures' - they want info about the guidelines for treatment, apparently. I've asked them what 'functional' means, in this context.

Review and comment on draft guideline on management of functional seizures.

Comments are due by March 25: hubs.la/Q038Q2LH0

[kev60]

Hi, I would advise keeping a journal of what your days are like. A lot of people with FND have memory fog, so it’s good to write down anything. I have disassociated seizures (so I was told) I maybe in conversation with people and I just go blank and think I finished but in reality I freeze in place and just stare into space (but in my mind I am still talking ) it’s very strange and I need my wife to tell what happened. I also have problems walking ,talking and thinking. So when you see your doctor have your journal and someone else with you . I was diagnosed after 19 months of tests and seeing my neurologist after having stroke like symptoms. In my case there are more bad days than good but hopefully you’ll fair better. Good luck I hope you get the help and answers you need. Kevin

[Shimmyaway]

Might the mention of seizures trigger health and safety issues in the eyes of your employer, esp as you are not yet being treated?

[Lady4]

I agree with others a phased return back into work if possible, as it sounds like you have experienced some trauma whilst in hospital and may take a little longer to fully recover.

There are "rule in" signs for FND, what sort of muscle spasms are you experiencing? My son developed thigh spasms initially and diagnosed with CRPS first.