Hello! Newbie here :)

[Tam81]

My name is Tam and today I've been diagnosed with FND. I am almost 35. I live in Australia with my husband and two little girls.

I have had, over the last decade, many episodes of neuro symptoms that have eluded diagnosis. Many MRIs, one lumbar puncture, CAT scans, EEGs, and conductivity tests. All clear. I have had some severe episodes this year, leaving me unable to walk without assistance. Scary!

Today I saw one of the top neurologists in my city, and he concluded that FND is the culprit. I've been referred on to the specialist FND clinic in my city. Super long waiting list, there are only two of them in all of Australia. Crazy, huh?

I'm relieved to finally have some answers, but it's still very overwhelming! So it will be nice to connect with others with FND

I also have Bipolar Disorder, and I'm already on Lamictal (Lamotrigine), so that medication is working twice as hard!

[Hidden]

Hi Tam!

I'm also on Lamictalwhich keeps my mood stable enough but doesn't help towards the non-epileptic spasms and tremors I was on lamictal before these symptoms started May 2014.

I was happy out, content with my life, got out of bed one Saturday morning and my whole body started convulsing severely! Got back to my bed, could barely get words out in a stuttering fashion and got my boyfriend to hold my torso as tight as he could while it kept uncontrollably spasming. Lots and lots of tests and drug trials and was diagnosed with FND that August. Went for a 2nd opinion privately with the same diagnostic outcome.

I get dissociative episodes where I don't realise I'm in a non-blinking stare. Tremors and spasms that can hit any part of my body with no trigger! I also get extreme fatigue. Had a wedding last week and spent the following week pretty much sleeping and being lethargic and weak.

The only medication I have for any of this is diazepam which I don't take every day, only when I'm totally frustrated with the symptoms for a prolonged period. It doesn't necessarily stop the symptoms but kind of calms my body down. Alcohol helps better but I obviously won't and don't drink much. If I have to play a gig (I'm a musician) I usually down a pint or two of beer in quick succession to alleviate the symptoms but I'm usually absolutely shattered the following day. I'm constantly researching!

I find sometimes, even when I'm sitting feeling relaxed that I have my whole body tensed up, I realise it, and drop my shoulders down and relax, and about 30 seconds later I'm back to full muscle tense mode!!

I'm pretty sick of all of this and want my old self back! The brain fog is awful! Forgetting what I've JUST said, or being confused while conversing and trying to find simple words or to get a full sentence out.

I feel since may 2014 I'm pretty much in limbo. I've had to come to terms with some days I just cannot do what I had planned... House chores have to wait etc but on good days I'm superwoman haha

How are you feeling and have you been trialled on any medicine that seems to work?

Xxx

[Tam81 in reply to Hidden]

'The brain fog is awful! Forgetting what I've JUST said, or being confused while conversing and trying to find simple words or to get a full sentence out.'

I haaaaaate the mind fog! Super annoying.

'I feel since may 2014 I'm pretty much in limbo. I've had to come to terms with some days I just cannot do what I had planned... House chores have to wait etc but on good days I'm superwoman haha'

Lol SAME! It drives my husband mad. I go crazy on the days I feel good and end up exhausting myself.

'How are you feeling and have you been trialled on any medicine that seems to work?'

I'm pretty tired today. As for medicines I take 7 in total, 6 of which are for the bipolar. They do a good job keeping me well (most of the time!)

[Hidden in reply to Tam81]

I do the very same on my good days!! Way too much haha I feel I could run a marathon (half one, no a mini, ok ok maybe two kms!!)

Been very tired today too. Actually haven't had a good energetic day in awhile which sucks! It's been tremors/spasms or fatigue!

Here's something to make you smile... Fire engines are actually water engines lol Help my house is on water... Ring the fire engine! Hahaha

[VivienneWaterworth]

I'm in Brisbane, Australia. If you join the Facebook group called 'FND Hope AU/NZ' at facebook.com/groups/4185956... , look in the Files section and you will find a list of doctors around Australia that have been recommended by other people with FND. That group is also a great place to get to know others around the country and locally.

Which state are you in? There's a great program at the Mater in Brisbane, Qld. Dr Lehn was on SBS a couple of months back, talking about FND. Not sure if you can still watch it off their website. He has a waiting list, but can be seen publicly or privately.

I'm a lot better than I used to be. My triggers are emotional (Psychogenic Non Epileptic Seizures), physical (including change of temperature, hot, cold, wind, change of air pressure, standing up, lying down, bone spurs in my spine pushing forwards onto my sympathetic nervous system, surprise/sudden touch/shock triggering the Flight Fight Freeze mechanism etc etc), and also chemical (reactions to gluten, all SSRIs and SNRIs including Pristiq and Zoloft).

At the moment, I'm going through a quiet period with only a couple of seizures a month. Occasionally I'll get several in one week or several a day for a few days in a row. Apart from the triggers I've already mentioned, there are still seizures that occur for no known reason...just cos!

All the best as you get to know and understand your own body and the way it reacts to various triggers. That's the hardest part...figuring out what triggers them, and also figuring out how to stop them. There are some ideas worth exploring at fndhope.org and neurosymptoms.org

[JasT in reply to VivienneWaterworth]

Hi Vivianne,

Is there anyway you may be able to link the list on here? I'm in Melb and would love the information of who is recommended (or not) (as I don't have Facebook).

Seems like most info/peeps about are international and this is one of the first Aust threads I've read!

Jas

[VivienneWaterworth in reply to JasT]

Unfortunately you can't read the information without going Facebook first and then the Aussie group. It's not that hard to join Facebook...go to Facebook.com and ask to join up. Then you will be able to follow the link I gave you.

A warning about Facebook...it is one of the world's worst websites for privacy and for them to keep your personal information private. NEVER give them your correct birthdate. Always change the year, the month or the day.... or all three! Also never give them too many details about yourself. Your family and friends already know your true details and the rest don't need to know.

The Aussie Facebook group is great. There is a lot of discussion about good and not so good doctors, and a lot of support to keep your spirits up. They don't talk so much about symptoms...symptoms are just that. Symptoms. Not causes, just side effects of one of several different causes.

Whether they affect your speech, walking, numbness, weakness or pain, or give you seizures - I suspect that's just a reflection of where the brain ismalfunctioning (like a software issue, with epilepsy being a hardware problem of electricity running around the brain the wrong way).

[JasT in reply to VivienneWaterworth]

Thanks Vivianne, I will give it some thought. I have not been a fan of social media for a while and have avoided it for some time (possibly avoiding groups that could offer valuable info).

I will admit I feel somewhat contentious being on this site even, so am not sure I'd fit into the group very well. (I have a well standing dx of RRMS, predominently spinal (transverse mylitis), with mobility impairments etc). However after a particularly crappy run of health (and an asthma attack that had me ventilated) this year I had an episode of 'choria' that put me in hospital in July and a new neuro thinks it was FND. It since resolved (I'm back to baseline) but he has suggested that the other mobility issues (years longstanding) may also be FND related (? is this how it works?). My treating team were not impressed with his suggestion (putting it lightly), however I have asked to follow this up as want to exhaust all avenues for recovery, as very upsetting as I found this option when it was suggested.

So I'm not sure I belong in any 'group' any more (this is also why I have been 'finge dwelling' on this website since September).

[Izzykins]

Hey, Tam! I’m so sorry that this is interfering with your life right now! But look up, because a decade ago you would not have been taken seriously. Sometimes, just knowing that you are not crazy helps, doesn’t it? And a sense of relief that now you know what’s going on.